Notice the new pics??? We've been ordained into the world of digital technology! We have had a blast taking pictures! Hopefully now we can update pics more frequently. Now everyone can "watch" the progression of Steven's staph infection on his face hopefully get better and better.
Speaking of his infection, the doctor's office called yesterday and brought another "reality check" to us by saying they wanted to see him today (we weren't supposed to go back until Monday to start the next round of Chemo.) So the newest report is that, yet still, Steven's face is not cleared enough to start the chemo on Monday. This changes the date of the transplant to around May 22nd. Steven will now be one month with no chemo and, yes the fear of the cancer coming out of remission to rear its ugly head, has entered our thoughts. Dr. Estrada, however, believes his remission is very strong and we don't have a choice but to wait until it is totally clear before we proceed with this next intensive round. Oh well, being frustrated and worried doesn't help a thing so instead I'm going to tell you about our wonderful week.
Everytime we go to the hospital or Oncology office we pass by a HUMMER dealership. Steven has grown to LOVE looking at those "truck cars!" On Tuesday we actually we're able to take him for a ride in a "cool" white HUMMER (did you know that a HUMMER costs over $125,000???--that's one thing Steven WON'T be getting on his 16th birthday!) On the way there Steven seemed almost nervous but as we pulled in he said with a huge grin on his face "Mommy...I soooo excited!" It brought tears to both Dave and my eyes. It was such a neat experience for all of us. That is all Steven talked about for the next two days! A big thank you to Sue Wysong and Tony at the dealership for arranging such a special treat! Now, whenever Steven is upset and nervous to go to the doctor's--all I have to say is "We get to pass by the HUMMER you rode in!" and that seems to make the ride go a little easier (remember--every little blessing helps!!)
We also had an incredibly special Easter since we were, for the first time in over five weeks, able to go to church as a family. Our church has been so supportive. When I called to tell them that we had a "pass" to go on Easter even though his counts weren't as high as we would have liked, the Special Needs Ministry came to the rescue and had a special room ready for Steven with all freshly cleaned toys and two people to take care of Steven so we could attend Easter service (they even saved us a seat in the sanctuary!) Thank you Vicki, Samantha (great teen helper!), Mary Sue, Becky, Jackie, Shari and everyone at University United Methodist! UUMC even planned a special visit from the Easter Bunny where she came and hid Easter eggs in our backyard! Meredith, Emma and Steven loved it! Thanks!
Steven's counts have now come up with a little help from Neupogin, to over 25,000 and he is off all the IV meds but back on PO antibiotics to help the healing along. It has been so nice to have several days to do some fun things. We went back back to Steven's all time favorite place-- Chuck E Cheeses with Karin and Travis--they had a blast and I didn't even have to follow him around with Purell hand antiseptic! Daddy took him on a special train ride and we went to play at a sandbox restaurant called Willies! These are all things that in the past I would have taken for granted but now realize how lucky we are to have days where his counts are high enough that we can go do some fun things.
Next week? For Dave and I--more worrying about Steven's face. We hate that he's missed some Chemo, however, we understand the importance of waiting for him to be infection free before they proceed. On the upside, we will have seven more days of doing things as a family before he starts the next two chemo medicine combination where he will be hooked up to an IV bag for 8 days. So for now, it's time to put the worrying on hold and enjoy the gift of another "free" week. As always, thanks for your prayers that over the next seven days his face fully heals so we can continue our "climb" over this huge mountain!
Steven went back to the doctor's yesterday for the first time in a week. Sometimes it's easier when we go everyday because Steven gets used to it and doesn't fight going. Since he had a week "off" he was starting to feel so normal that it made it that much harder for him to go yesterday. One day when Steven and I were riding in the car he touched his port in his chest and asked me "Mommy, am I still sick?" What a tough question that was to answer. I told him "Dr. Estrada and Dr. Grayson say you are getting better but we still need to keep giving you medicine." Boy is it hard to bring it down to a level he can comprehend. All he know's is that right now he's feeling good and he is getting to do soooo many special things that he normally wouldn't be able to do.
Speaking of special things--he did two very neat things this week that our great friends Lisa and Phil Rosenfeld planned for him--thank you so much! Lisa's friend is the Fire Captain at one of our local fire departments. Steven was not only able to go visit the station, they made it quite a special day. They raised the huge ladder truck and one of the firemen climbed to the top and even let Steven and I climb on the back of the firetruck! Then they asked if Steven would like to go for a ride!!! (That is a huge deal since in 28 years they had never let a child ride in the cab of a firetruck but they received special permission from the San Antonio Fire Chief himself!) It was incredible! Steven couldn't stop talking about it! Thanks for such a great day!
The other very special thing he did was go to a construction site that Phil's company was doing some work on where he got to work the "big rigs"! For those of you who know Steven, you know his love for all kinds of trucks! With Tommy the job foreman, Steven was able to work the joy sticks of an excavator truck and actually dig a hole--WOW! Yes, I was a little nervous but daddy and Steven thought it was way cool! He also got to drive a big Steam Roller truck! Steven loved Tommy, the dirt, the trucks, and all the workers! We had to drag him out of there! Steven asked "When I get out of the hospital can I come back and drive some more trucks?" This will be a good "carrot" to dangle and motivate him to get strong after his BMT so he can go drive the big rigs! Thanks Phil and Tommy!
Through all these neat things, Dave and I have both felt such a mix of emotions. With this unexpected three week delay in chemo waiting for his face to heal we have felt the closest thing to a normal family (don't all "normal" families drive the big rigs and ride in firetrucks? Ha Ha) Seriously though, we've had three weeks of living our "new normal" and yet in the back of our mind we know we have this huge mountain towering over us which just creates anxiety and makes us feel anything but normal. We want to proceed but in the same sense--proceeding brings on a new set of concerns.
So it is with very mixed emotions that we start the next round of Chemo before the Bone Marrow Transplant (BMT). After examining Steven yesterday, Dr. Estrada did not feel like Steven's face was quite to the healing point he wanted it to be, however, he felt like we've delayed enough and we have to move forward. So Steven will be starting two new chemo drugs on Monday. We pray that his staff infection doesn't regress and he tolerates the new chemo drugs well. We will be at the oncology clinic 8 hours on Monday and about 6 hours each day Tuesday through Friday. Steven will be on a continuous IV fluid drip for eight straight days since these drugs are toxic to his kidney's. They need to make sure his kidney's are continuously flushed. This means a dramatic shift in our routine but it is a huge step closer to transplant.
Due to his recent staff infection delay, his new date for the transplant is right around June 1. His counts will start to go down at the end of next week and will stay down for about two weeks. So for the next three weeks we are tied to the house. That's why all these special things he's been able to do have helped so much because we can look at the pictures and "re live" all those wonderful moments! After his counts recover, he needs two weeks of getting as strong as possible before he's admitted to the hospital. That means getting him a lot of exercise, eating right (is their such thing in a three year old?), and just "pumping" him up for the big day.
I'll be honest, this delay has been hard because Dave and I had "psyched" ourselves up and had "planned" the next two months and then --it changed. Once again this is a huge lesson in not planning beyond tomorrow because it most likely will change. A friend whose son had gone through a BMT told us when we were diagnosed that we would get so sick of thinking the phrase "just take it one day at a time" and at the time I couldn't appreciate why--now I do. I KNOW I need to take it one day at a time and appreciate each day. But on those days when I'm sleep deprived (which is often) or just kind of crabby (aren't we all allowed to have those days?) Sometimes I just want to snap my fingers and make it all go away or just fast forward to six months from now when Steven's well and where anxiety (Steven's and ours) isn't such a dominant feeling.
Through all this I do still feel God's presence. I have found a certain sense of calmness listening to music. I've had several friends send or give me some great christain contemporary music CD's. The kids love the beat and I don't have to worry about the words (I've been burned by a few Britney Spears songs--trying to explain the meaning of certain things to Meredith and Emma!!) Three great CD's are Mercy Me's Almost There, Steven Curtis Chapman's Declaration-- we are taking the girls to see him in concert this Wednesday (at least I won't have Meredith wanting to dress like him --after seeing Britney on TV she wanted to wear those bare tummied shirts that Britney wears!) and a guy named Mark Shultz (I don't know the name of the CD). All of them are great to work out to, and have songs that help brighten my day and continuously reassure me that putting it in God's hands is the best thing. HE IS giving us the strength we need to make it through each day. Thanks for your prayers --sometimes when I'm too tired to pray at night--I'm counting on your prayers to keep the message flowing!!
Lisa, Dave, Meredith, Emma, and Steven
P.S..--Check out the new pics at the bottom of the Picture Album page!
Monday, April 15
Quick update--Steven's such a trooper! Today he started two new chemo drugs. One drug in particular causes a lot of nausea and vomiting. They gave him some meds to try and stop it but he's definitely had a lot of breakthrough throwing up. Kids are so resilient though. He has made it to the bathroom almost every time and bounces back pretty fast. Getting his "crab" put in today was tough for him--he was shaking and trying to "negotiate" his way out of doing it by saying-- "I'm too busy right now--we can do it later" and "Wait just three more minutes!." But once he was finally poked, he adjusted quite well. We spent most of the day at our oncologist's office. A friend came to visit and help pass the time. The nurse said usually the first couple of days the vomiting is worse so hopefully by tomorrow night he will be back on the upswing! Day one done--only four more to go!
Tuesday, April 16
Day Two--Never a dull moment that's for sure. Last night went pretty well with the exception of Steven waking up at 3am extremely agitated and sweaty. We figured out it was because he probably felt like he was going to throw up so we gave him more Zofran (he hated that too). Then he was so mad at me over everything that he said "Mommy you get out!" of my own bed of course so I slept on the couch the rest of the night!
Today was Dave's turn at the doctor's office (I had to plan for Emma's birthday party that we're having a month early since we may be in the hospital on her "real" birthdate). Lucklily, Dave and Steven had the rest of the night "bonding" in bed together so Steven was very cheerful going back to the doctor with Dave for day two of chemo. UNTIL--leaving the doctor's for a two hour break, he threw up in Dave's car (third time that has happened--what do you want to bet Dave will want to take Steven in my car from now on!) Upon coming home Dave decided to take a nap since the day has worn him out. Almost minutes after laying down, Steven came into the room and attempted to climb up in the bed--as he did this he accidently stood on the cording to his IV pump and ripped the port needle out of his chest--Major OUCH!!!. To say the least, it was a stressful couple of minutes because I had to tear off all the dressing which is practically glued on. Surprisingly Steven said "thank you" after I pulled the needle the rest of the way out (very polite but not the response I would have expected!)--then we had to rush him back to the oncology office where he had to have his port needle reinserted and more fluids started. Since Steven has been throwing up they are now sending him home on IV fluids all night as well. Dave's tired, Steven's tired, I'm tired and Meredith has soccer pictures tonight (our one spring event we let Meredith do to try and maintain some "normalcy" for her). This is when we are so grateful for all the wonderful meals people are bringing us--THANK YOU! Day three--I'm on so Dave can take a break--I hope it's a less eventful day!
Thursday, April 18
Day 3 and 4--What a crazy and exhausting last two days. Steven had to be admitted to the hospital because he woke up yesterday morning screaming as he tried to go potty. After awhile he could go but just little streams and shaking as he did it. It was determined that he had blood in his bladder which the chemo had caused. We went to the hospital where they had to catheterize him--what an incredibly traumatic procedure for Steven and a heartwrenching one for me to watch. In the big scheme of things being catheterized isn't that big of a deal, however, when it takes four people to hold him down because he's so scared and flailing around--I just kept wondering why they couldn't make it a little less traumatic ( a little morphine would do the trick!) Oh well, after about 30 minutes it was over and we were cuddling in his hospital bed together. They started him on several meds and increased his Zofran--since he hasn't eaten a thing in two days, he promptly threw up! Then at 3am his catheter dislodged from the bag and due to the heavy bladder fluids/meds he was on--it soaked the floor, Steven and his whole bed in a matter of about a minute! And to cap it off--the poor little guy threw up again about an hour after we had him and the bed all made up! I don't think we've ever changed the sheets four times in one night! I do find, as hard as it is being in the hospital, Steven and I get some really good cuddle time. At one point, in the dark, he was so anxious and restless. I was sitting on a chair next to him since he was crossways on the bed. He opened his eyes, looked at me and said "Hey mommy, I got an idea--how bout' you come cuddle next to me and we go sleep together?" It made me cry! He has such a tender heart (and lucky for me the bed was still dry!) We made it through the night and were released back to Dr. Graysons's office. No urinary tract infection, just chemo induced irritation so now that they've cleared the blood he will be hydrated 24 hours a day to best help his body eliminate the chemo. This is great compared to the alternative of staying in the hospital. Steven's so good walking around with his backpack. Going to the doctor's office, to the hospital, back to the doctor's office has definitely taken a toll on his normally cheery self but it just means that coming home to sleep in his own bed tonight will be that much better. A friend sent a card that talked about all the "angels" god has sent to help and show HIS presence in our family's life--and there are way too many to name them all but once again its week's like this that I want to make sure everyone knows how thankful we are for all the friends who have come to the hospital to sit with Steven so Dave and I can take a break, come to the house to play with him, and all the wonderful meals, cards, emails, calls etc..-THANK YOU-THANK YOU!!!--Well, I'm off for a much needed nap because now it's Daddy's turn again!
Friday, April 19
The end (for now!)--What a difference a day makes! Today was pleasantly uneventful. He spent almost all day at the oncology office getting chemo. Upon arriving to Dr. Grayson's office Steven ran down to the bathroom to go potty. As he finished he loudly announced to everyone "MY PEE-PEE'S DON'T HURT ANYMORE"--it was so cute, he had the biggest smile on his face and did a little "jig" as he pulled his underwear up! He was so excited that he could go to the bathroom without pain! And considering he is going about every 30 minutes--well, I'm very happy that the bladder irritation ordeal is behind us! His energy level was so high that I even kiddingly accused the doctor of adding a little "stimulant" to the chemo bag! This was Steven's last round of chemo before being admitted for the transplant (where they will do heavy dose chemo for nine days prior to the actual transplant day.) Over the next three weeks his counts will drop to around zero (no leaving the house for about a week) and he will possibly have another blood/platelet transfusion. By the second week of May his counts will have recovered and we will have at least two weeks at home with him feeling great (hopefully!) so we can have some fun before being admitted for the long 4-6week BMT stay. Now were just back to praying for him to stay infection free as his counts drop and that his staff infection on his face doesn't "re-infect" (is that a word?) I think I'm still tired from the last two days! Time to regroup and have fun at Emma's big birthday party tomorrow!
I think Dave and I have finally hit what my mom has called "the wall". These last five days have been unusually difficult for Dave and me, not because Steven had to be hospitalized because when that happens the adreneline kicks in and we're so focused on what needs to be done to help Steven that there isn't time to worry or focus on our own needs. I debated whether I was going to put this in an update but after talking to several people, I need to be honest with our feelings so people don't get the wrong impression that Dave and I are handling everything so wonderfully all the time. I've had so many people say how strong we've been and we do feel strong most of the time, however, this has been a week that has definitely tested not only our strength but our faith as well. When Steven was in the hospital last Wed and Thursday we found out that one of our own doctor's patient's--a little 2 1/2 year old girl named Anna--died after her Bone Marrow Transplant. She had been in the hospital 60 days post BMT and died of acute graft vs. host disease (basically her body rejected the new immune system.) This hit Dave and I really really hard.
I happened to see our transplant doctor at the hospital when she came to say hi and check on Steven. She seemed and acted so "normal" --even cheery--which I know she had to act that way-- especially with a family about to come in for a Bone Marrow Transplant. What we found so hard was that life goes on --and so quickly--things have to get back to normal. That same day someone made the comment regarding BMT's that "usually it's the cute, precocious ones that seem to have trouble". That was also hard to hear.
Dave, who has always been amazingly positive, said he felt like maybe these are "signs" that God is trying to prepare us for the worst. We have been so positive and so strong for so long and when the reality of death hits this close to home--boy is it hard. We feel like we are reaching for something to keep our faith strong and keep that positive attitude.We've spent probably too much time struggling with the hard questions. And there are no easy answers. It's all about faith and attitude.
I find I'm looking outward for that one friend to say the exact "right" thing to make it all better--and I know deep down that there isn't any one "right" thing that will make all the pain and worry go away. (okay--friends--don't stress out trying to come up with what to say to me--an understanding ear is perfect!) I've been told that I'm "stoic" and present everyone with a "everythings going great" attitude all the time when maybe it's not going as great as I say. I know I need to be more honest during the harder days.
Today Steven started the morning by throwing up but then by the afternoon he was swimming, laughing, playing with Shelby (one of his sweet babysitter's who came to see him), and acting so incredibly normal that it's days like these where just thinking about putting him back in the hospital for the BMT just tears us up.
It's strange how on some of the days when Steven is doing great--that's when Dave and I allow our minds to wander and worry. A friend sent me a card that said--"Worrying does not empty tomorrow of it's troubles--it empties today of its strength". Boy how true that is.
Well, I don't really know what the point of this update is except to share our very real feelings about what's coming up. The pressure is building and now we're just in a waiting game until the "big" transplant day. However, Dave and I will get over this hump and we will make the most of the next five weeks and our positive attitudes are definitely still there--just a little subdued tonight.
Thanks for being there for us!
Lisa, Dave, Meredith, Emma and Steven
This is a MUCH better week. Dave and I have "re-focused" our energies back on the task of healing Steven. It took lots of talking to each other, prayer, calls and emails from friends, music, and believe it or notgoing to the San Antonio Fiesta River Parade to get back our positive attitudes. Weve found that in a household of three young kids--its very hard to stay "down" for too long. Stevens counts were so good on Monday that we took our whole family and some friends down to the river parade. It felt SO good to go. Steven and the girls loved watching all the decorated boats. We were just a normal family going out for some fun! For Dave and me it was kind of a turning point. Weve discussed how we need to refocus and just live for and enjoy the next "five minutes" and deal with each crisis as it comesnot take on the weight of the world with worrying about all that could happen in the next six months. Were tired of letting our worries rob us of appreciating those "golden" moments with Steven and the girls.
And speaking of the girlsour old babysitter Leslie gave the girls such a nice compliment. Last night she watched all three (YEA!) so Dave and I could go out to a movie (our first "date" in three months-it felt great!). When we came back she commented that both Meredith and Emma had been exceptionally caring and sweet to Steven. Reflecting back, I have noticed that both Meredith and Emma have taken on quite the "mother hen" role with Steven. They play so nicely with him and yet continue to be patient with him when he has his "crabby" times. When I think of what impact this whole situation will have them when they are olderI pray that the amazing compassion, forgiveness, and caring that they have displayed over the last three months will continue to grow and be a cornerstone in their "character."
They do, however, sometimes use Stevens Leukemia to "work" a deal to their advantage. For example, Meredith came up to us this week and said "If I do good in donating my bone marrowcan I get my ears pierced?" Which Emma then piped in "If Meredith gets to do it, and since Im the Helper Champion dont I get to?" WOWthey sure know how to pick their timing! After much discussion (it took awhile to convince Dave that just because they want to get their ears pierced doesnt mean that they will be asking for a tattoo next!) We decided that this would be quite the "big deal" to them and somewhat of a minor sacrifice for us. When we told them they could their expression was priceless! Although when Emma heard (from me of course) that a needle has to go through both earsI have a feeling she may not go through with it (I hope notshes only six!!!!) But if it makes them feel special about this whole thing then thats what counts.
About three weeks ago Dr. Graysons office told me that we needed to have Steven make a wish through the Make-A-Wish foundation. That was a very emotional moment because I always thought that the Make-A-Wish foundation was for terminally ill children only. We learned, however, that any child with a life threatening disease is eligible for Make-A-Wish. They put a rush on it since Steven will have two weeks in May with hopefully good blood counts and no neutropenia where he should be strong enough to do something special. The Make-a-Wish people came to our house bearing gifts for all our kids and formally granted Stevens wish to go to DISNEY WORLD!!! It is going to be such a special time for us. Its coming up fast--we are scheduled to go the week of May 14-20. The girls have decided that even though weve had to make a lot of changes in our life due to Steventhis is a REALLY good thing to have happen! His doctor doesnt release him to go until the day before so weve had to temper our excitement with the girls a little just in case he gets an infection or ends up in the hospital thus preventing us from going. But barring any problems, Im sure were going to have a great time. Weve never been to Disney World with the kids. We are staying at the Make-A-Wish hotel (can you believe they have their own hotel?) called "Give Kids the World". You can check out the hotel on their website at www.GKTW.com I hear the place is great!
As far as this week goes, Steven is going back to the doctor tomorrow for blood work and a possible blood transfusion. His counts are going down (as we expected) so he is starting to feel more tired late in the day and is a little pale. Since he will be neutropenic by this weekend we are house bound for the next 8-10 days until his counts recover and he can be around groups of people again.
All in all he's been a happy little boy this week. Yesterday, after taking him out for an ice cream cone he exclaimed "Mommythis is a great day!" And it truly was!
Lisa, Dave, Emma, Meredith and Steven (diagnosed 1/29/02 PH-ALL+)
The roller coaster continues. Today we brought Steven in for his weekly blood count check. Steven's oncologists' had expected Steven's counts to drop pretty significantly, however, Steven has once again had what they term as an "atypical" response to his latest chemo treatment. His ANC was at 800 (less than 500 is considered neutropenic--meaning not able to fight off infection.) Today they expected his ANC to be at least less than 500 or even down to 100. His actually increased back up to 1200. Go figure. His hemoglobin (red blood cell) was at 9.2 on Friday and today it was up to 10.4. So needless to say he did not need a blood transfusion. After seeing the results our oncologist seemed rather "concerned." I, after seeing the look on their faces, was extremely nervous. His explanation was that Steven is either doing great, is very strong, and bounces back quickly OR the chemotherapy treatment over that week did not work effectively and he could be coming out of remission--this would not be a good thing.
After much discussion about Steven's past response to his chemo, we decided that his response to all but one course of chemo has been considered atypical. Dr. Estrada said that the chromosomes he has (PH-ALL and the Mono 7 Cell) mess with his body's ability to respond in the "normal" way to chemo. On the positive side, his atypical response has kept him from getting too neutropenic. Also, the fact that his WBC count rebounded quickly has helped the staff infection on his face not get worse. On the flip side, there is a chance that the cancer cells could be growing again. Dr. Estrada and Dave both talked to Dr. Wall (transplant doctor) who obviously see's a lot of difficult to treat Leukemia's. She was very positive stating that his blood count numbers have "the good guys" going up and his ANC quickly rebounding. She believes that he has some really good marrow right now. We felt better--sort of. It's always easier having concrete answers, however, this uncertainty makes us rely on faith. He will have the transplant the beginning of June regardless, however, the success rate is better if he's in a strong remission going into transplant. The transplant process has begun. Steven and Meredith go in for their pre-trasnplant/donor "work up" next Tuesday.
What does all this mean? We choose to believe that Steven does not need to follow the "typical" results to have a successful outcome. In the scientific definition he has an extremely rare form of Leukemia with two rare chromosomes attached to the cancer cells. This makes comparing his results to any group other than his specific type not an apples to apples comparison. And in a "real" definition, we believe Steven is anything but typical. Dr. Wall herself said that the conclusion that should be drawn from Steven's results, regardless of any uncertainty, should be that he is a very strong boy who bounces back quickly. She also said that it helps that "he seems to have SO many cheerleaders out there pulling for him!"
Today in the waiting room Steven was running around playing and making friends with several people waiting. A woman I've never met out of the blue said to me "Your son looks so strong--I can tell he's a fighter." Hopefully meaning--he's going to beat this thing! After getting his blood count results and hearing the scary possible reason for them, I could easily have sunk back into the "worry pit." While waiting for Dr. Estrada to look at his blood smear to see if any Leukemia blasts were visible (thank you God--none were), that woman's comment about Steven came to mind and it had a very calming effect. I believe God was working through her to help me at a moment when I needed it. The reality is--Steven IS a fighter and it truly doesn't matter that his response hasn't been "typical." He is not a statistic. Through it all Steven has shown us so much strength, humor, ability to laugh, braveness, tenderness and love. In our opinion-- that's what's going to get him through his bone marrow transplant. At least that's what we're going to focus on. Everytime we leave their office we say to Steven--"Dr. Estrada and Dr. Grayson say you are getting better!!" At that moment Steven seems to stand a little taller and smile a little bigger. He sure believes he's going to get better --and so do we.
So a big thank you to all of Steven's "Cheerleaders"! Keep on cheering because God IS listening.
Lisa, Dave, Emma, Meredith and Steven (diagnosed 1/29/02 PH-ALL+, MONO 7 CELL)
Saturday, May 4th
Well, it's finally happened. Not a big deal in the grand scheme of things but nevertheless, a daily reminder of Steven's illness--he has now lost most of his hair. In just one day it's almost all gone. Everytime he hugged me it was like rubbing up against a dog. All day long Steven was picking hair out of his mouth and eyes! It's amazing how over the last three month's he hasn't lost hardly any and then in one day he loses most of it! Before today it looked like he just had a bad buzz cut--now it's very apparent that it's more than that. This picture was taken yesterday afternoon and by this morning he's lost much more!
He's still a cutie and surprisingly his "peach fuzz" underneath is blond. Luckily he and his sisters' don't seem bothered by this relatively sudden change. His only complaint is that he doesn't like putting sunscreen on top of his head--time for baseball caps!
This afternoon I took Meredith and Emma to a wonderful Mother/Daughter Tea at our church (thank you Becky!) Steven is so used to being with me that he was upset when I told him he couldn't go to the tea. Upon leaving he looked at me and with the cutest smile said "Mommy--when I get better can I be a daughter?"
The official day is now on the calendar. Steven will be admitted to the hospital on Sunday, June 2nd (which also happens to be Dave's birthday!) and barring any complications, the transplant will take place on June 11. Having a specific date helps. I think this period of waiting had really started taking it's toll on Dave and me. I know our whole family is ready to move on to the next step so we can continue our climb over this mountain.
Today's pre transplant work ups went very well. Steven and his "Helper Champion" Emma went in at 9am.. We took Emma out of school in the morning so she could "help" Steven be brave during his tests! We could tell she felt special doing her part and being involved. Steven was at the oncology clinic and hospital pretty much all day. At 11:30 I took Emma back to school and then picked up Meredith and took her to the hospital for her round of tests. Her biggest concern was getting "poked" for all the blood work they had to do. Well, we are happy to report that she was sooo brave and with the help of "magic cream" she didn't feel a thing. Steven was there to cheer her on. I was surprised though that he would not watch Meredith get stuck--he hid behind the door, peeked through the crack, and chanted "Be brave-you can do it!" They had a patient advocate come in to talk to Meredith to make sure she understands everything that will happen to her. She is so ready to donate her marrow. She understands that there will be a little "pain" and is still very proud to be able to help her brother. She is handling it with such grace and poise-boy sometimes she seems older than just eight! I will have to say though that she was working us to make sure we kept attention on her by saying things like "Daddy, I can't go to soccer practice tonight because I might have to move my arm and it is soooo sore!" Under the circumstances she and Emma sure deserve a little extra lovin!
Steven handled everything wonderfully--as long as they did it HIS way. He's really into control right now. He loves to negotiate everything ie: "you can take my blood pressure if you do it on my arm- not my leg!" and "I'll be ready in three minutes" (as you can guess "three minutes" never comes!) Luckily, the transplant staff is so good with these kids. They made Steven feel like he was helping in everything they had to do to him. Several people commented what "spunk" Steven has! Overall all our kids were quite the troopers during this tense but productive day.
Steven's counts actually dropped down to 700, however, he's producing a lot of the good cells so Dr. Grayson said he is recovering nicely. Recovering-- just in time to hit him with two more oral chemo drugs prior to transplant. He's now on oral Methotrexate (5 pills a day one day a week) and 6MP (once per day for 21 days). Plus they started him on Prednisone for seven days. On Monday Steven goes in for a last bone marrow aspiration, spinal tap, and possibly some intrathecal methotrexate. These tests will show how strong his remission still is and give the transplant team a baseline to work from. And then hopefully we will be off to Disney World for our Make-A-Wish trip! Pray for a healthy week for us all so we can go!
Monday May 13, 2002
We're off to Disney World tomorrow! YEA!!! Steven's visit went well today. His counts look great so he got the "thumbs up" to go see Mickey Mouse! This morning Steven had a bone marrow aspiration and intrathecal (spinal chemo) methotrexate. The preliminary results of the bone marrow aspiration looked very good but we will know conclusive results next Tuesday. They had to give him a little more anesthesia than usual during the Bone Marrow procedure so afterwards he spent a few hours throwing up, shaking and just feeling dizzy. Luckily, by midafternoon he was back to his old self. We hope he's over the throwing up since we're getting on a plane tomorrow at 6am! All the kids are so excited! We're not going to think about his upcoming BMT--we're focusing on fun!!! We are going to just feel normal, re-connect and play! Thank you to Dr. Grayson and Dr. Estrada's office for helping set up this wonderful vacation with Make-A-Wish! And a big thank you to the Make-A-Wish foundation for making this amazing family adventure happen so quickly! THANK YOU!
If we could capture what Steven's face looked like during almost every minute of his Make-A-Wish trip to Disney World--this picture would be it! He had a "glow" about him that was truly contagious. Why is it that kids spend their time looking for ways to have fun while us adults spend way too much time worrying? Both Dave and I learned a lot from Steven during this trip. He, along with Meredith and Emma, truly embraced and relished in all the wonders that the "Disney Kingdom" has to offer. What a getaway this was for our whole family. In this picture he's with his new friend Pam Landwirth -- President of Give Kids the World Village. We stayed there with approximately 80 other Make-A-Wish kids.
Meredith, Emma and Steven liked it so much that in the morning as I was getting him ready to go to the real Disney World for the first time Steven said "But Mom-THIS IS Disney World!" It truly was a young child's wonderland complete with an all day long free ice cream parlor, a train that carried you anywhere in the village, many movie character visits, a water park, a great pool, a movie theatre, a fishing pier and ship, a Disney made Carousel, a CASTLE!, and Steven's favorite--A huge toy train interactive exhibit! We spent three hours playing just with the toy trains!
The village was amazing and Pam, along with her incredible group of employees and scores of volunteers ensure each child has their "wish of a lifetime!" Steven was particularly fond of Pam since she was the one on the "video" about the village that played on a certain channel in our villa. He watched that video about GKTW easily five times a day and that is the one he wanted to watch before bed. When he saw Pam one day at the restaurant he just ran up to her like he had known her for years and said "You're the lady on the TV!" She became his new friend and they ended up going out to ride the carousel together!
In fact, Steven liked Pam so much that when he saw her a second time up on a stage at the theatre presenting a donation plaque to Pi Kappa Phi fraternity Gear Up Florida Bicycle team, he ran up on stage and wanted to sing songs with her and the frat boys! It even surprised Dave and I at how outgoing Steven was with people he hardly knew! Pam gave him the microphone and he entertained everyone for almost 20 minutes!
Dave, Meredith and I (Emma was having fun playing in the castle) just stood there laughing in amazement at the charisma he had with these people! Steven ended up being in all their "formal" pictures and the great guys from Pi Kappa Phi gave Steven a real biking shirt! Steven and the girls stayed for parent's night out having a blast with Pam, the Pi Kappa Phi guys, and GKTW volunteers the whole evening! That was definitely Meredith, Emma and Steven's best night! (and Dave and I spent a wonderful evening at Epcot alone!) Steven in particular cried when we came back because-- as he said "I'm still having fun--you go back bye-bye and I stay with my friends" Thanks GKTW volunteers, Pam, Andy (Steven's other big buddy!) Ty, Lance, Josh, Ethan, and the rest of the fraternity for making it such a special night!
As far as specifics go--we were able to experience seven different parks! Our family was treated so wonderfully everywhere we went. The girls loved Animal Kingdom the best while we think Universal and Nickalodeon Studios was Steven's favorite! We had a couple unique and very special moments during our stay that we wanted to share with you. As we've said before we believe God has his hand in everything. What we used to chaulk up to coincidence, after going through what we have with Steven, we now believe is God trying to tell us something. We now look at "coincidences" in a whole new light.
For example, (bear with me on this somewhat lengthy description) when the people from Make-A-Wish came to our house initially to "grant" Steven's wish, Steven had to be the one to say he wanted to go to Disney World. Steven didn't really comprehend what "Disney World" was but he kept saying "I want to see Pongo and Perdida (who are dalmation dogs in one of the older Disney sing along videos). They are his current favorite Disney characters. The whole three weeks prior to leaving he kept saying "Am I going to see Pongo and Perdida?" This made me nervous since it wasn't like he was asking to see Mickey Mouse who I knew we'd be able to find.
Since Steven was somewhat obsessed with this I actually called both GKTW and the Disney "hot line" and asked if Pongo or Perdida were anywhere to be seen at Disney or if not were there any 101 Dalmations exhibits that we could pass off as Pongo and Perdida? Unfortunately the answer was no. When we first arrived at GKTW we all got out of the car with the kids exclaiming "We're at Disney World!" since the entrance to GKTW looks like a mini Disney World. We all walked into the welcoming center and, upon entering, Steven see's a big screen TV--where he begins jumping up and down excitedly yelling "There's Pongo and Perdida--I knew they would be here!" I almost started crying. Although the video wasn't the real Pongo and Perdida, it was an older Disney video with Dalmations that he THOUGHT we're Pongo and Perdida. We couldn't have timed our arrival any better! That "coincidence" set the tone for the rest of our wonderful trip!
Last night as Dave and I were laying in bed he reminded me of another unique thing that happened while we were at the Magic Kingdom. We had stopped to sit down and take a little break. Steven saw a pretty fountain kind of back in a corner that he ran up to wanting to through a penny in to make a wish. As I was scrambling in my backpack for a coin, this nice man who happened to be standing there takes a penny out of his pocket and hands it to Steven. Steven had his Make-A-Wish shirt and GKTW button on, and with his bald head, I'm sure he knew Steven was sick. The man's name was Mike. He proceeded to tell Dave and I that his law partner has a daughter who was diagnosed with Leukemia several years ago and is doing great. She had done a Make-A-Wish trip also.
Dave told Mike and his wife Dawn about Steven's website and they said they would keep Steven and our family in their prayers. They were a very thoughtful warm family. It struck us odd but nice when he first asked "How's Steven doing?" and then asked "and how are his parent's doing?" because a person we just met usually wouldn't ask about how we were doing with it all. He obviously had had a close experience with a family going through cancer.
We moved on and spent another three or four hours visiting the park. The real "coincidence" came when we were leaving the park with throngs of other people trying to get to the monorails. We decided to stop and take one last picture in front of the Mickey sign. As were standing there among so many other people, who walks up but Mike and his family! We were shocked to see that same family again! It's almost like God was using them to keep our eyes focused on the Leukemia success stories and to trust in Him, stop worrying and have faith.
To us it was quite amazing that all day long we never got into real conversations with anyone and then it just so happens that the one person we talk to understands Leukemia and expresses not only his concern for our family but shares a success story as well. And better yet, what are the chances that out of 200,000 people visiting Disney World that day we would run into that same man and his family a second time four hours later?!! Through this troubling journey God has put so many people in our lives to teach us something--maybe there really was magic in Mike's penny!
This Make-A-Wish trip was an experience our whole family will remember forever. It helped us to re focus, get away from it all, have fun, count our many blessings and enjoy so many moments of joy and laughter from our kids. THANK YOU Make-A-Wish and Give Kids the World--it was an amazingly wonderful wish trip that we will cherish forever.
Now back to reality--the countdown has begun. Steven's cytogenetics report came back great! YEA! As it looks right now (we're still waiting on one half of another report) he is in a very strong remission and is in perfect shape to go into the transplant on June 2. We are starting to prepare him and the girls. My dad is coming next Tuesday for about six weeks (thank you mom and dad!!) We're making arrangements for the girls' activities. The pressure is growing daily but we're reminded that God want's us to stay focused on the moment so that's what we're really trying to do. Steven is a strong kid with a strong spirit and an incredible desire to get better.
I will update once more before going in next week and then I plan to do short updates daily during our long stay. Thank you to everyone for continuing to keep our family in your thoughts and prayers--we sure appreciate them!
Lisa, Dave, Meredith, Emma and Steven (Diagnosed 1/29/02 PH+ALL, MONO 7 CELL)
Since Lisa does most of the updating I thought she might like a break and I would write a little note on the eve of our going into the hospital for Steven's Bone Marrow Transplant. We chose this picture because it makes us smile every time we look at it! Steven truly lives for the moment! His smile and his strength will help carry our family through the rough road ahead.
As our family mentally prepares for this long hospital stay, I'm trying to think of what to write. Our family has gone through the gamut of emotions. The stress level over the last several months certainly could have pulled us apart, but rather, with God's presence and the support of each one of you, we feel stronger and ready to take on this upcoming battle.
I would like to thank each one of you for ministering to our family during this difficult time through prayers, cards, emails, meals, jokes to help lighten the stress, watching Steven and the girls, guidance in keeping us positive, and just being there to listen when we need to talk. We couldn't have gotten to this point without the support from each one of you. Also, I want to thank Dr. Estrada and Dr. Grayson and their wonderful staff for giving Steven the effective treatments to get him into a good remission. I have great confidence in Dr. Wall and her transplant team as we move forward into the transplant phase of Steven's healing.
As I look back at the past three months there have been so many instances of God's loving grace that has shown through in each one of you. And there have been some subtle things that have happened that let me know that God is watching over Steven. Among them, I'll never forget one night when Steven was having port problems and as the nurses were trying to access his port he screamed "I'm not sick anymore!!!!!" We were supposed to be in the hospital about 2 weeks and ironically the next morning after that long night we got to go home because his bone marrow looked so good! What could have been 14 days turned out to only be eight. I also remember one night about 3am when I was having trouble sleeping because I was anxious and worried. Steven was lying in our bed when all of a sudden he cuddled up next to me and reached out and held my hand as if to say "everything is going to be okay."
God gives us opportunities to step outside of our element and pronounce our faith during times of great uncertainty. I believe he has called me to let you know that everything is going to be okay. This is uncharacteristic of me because I am one of those people that like to give myself an "out." ie: Things are going well but........ No outs this time. I have great faith and belief that God is overseeing the healing of Steven and I think he is going to beat this Leukemia and be able to serve God and witness for him in a more profound way. It's just NOT Steven's time to leave this earth.
I knew that I wanted to use a scripture to back this up and I just received an email from a man named Jessie Meeks from Brentwood, TN (whom I have never met). He ended his email with Matthew 21:22 "I tell you the truth, if you have faith and do not doubt, not only can you do what was done to the fig tree, but also you can say to this mountain, Go throw yourself into the sea, and it will be done. If you believe, you will receive whatever you ask for in prayer." Thanks Jessie for sharing.
Steven will be admitted Sunday at 4pm. He will start receiving the pre transplant medication immediately and is scheduled for surgery on Monday morning. He will be having a central line (Hickman) placed on the opposite side of where his port-o-cath (or his "crab" as Steven calls it) is. The big pre-transplant chemo drugs will start Monday afternoon. These high dose chemo drugs will be used to "wipe" out his immune system to get it ready to accept a new (Meredith's) immune system. This regimen will go on for nine days with the actual transplant scheduled for the morning of June 11. We will try to do short daily updates to keep everyone informed during our hospital stay.
Please keep us in your prayers and thanks again for your friendship and support.
Dave, Lisa, Meredith, Emma and Steven (Diagnosed 1/29/02 PH+ALL, MONO 7 CELL)
Pre-Transplant Days June 2-11--Monday, June 3 T-8--meaning 8 days until transplant day. We've made it through the first 24 hours! Steven did very well going back into the hospital. My friend Lisa Rosenfeld had a great idea of going in early to decorate his room so it would be ready for him upon arrival so Lisa, Tonya and I went in to make it look special and "inviting" (or as much as you can to a 10x10 sterile room). We got there around 4pm and it's amazing how fast things start. I took this picture prior to him starting all the meds. I'll have to say the first night went better than I expected. Steven was understandably nervous and anxious but overall he did great. As I've said before he does things his own way--he refused to sleep in his hospital bed! Instead he made me sleep there and he slept on the pull out chair! That's Steven! He slept pretty good even with the nurses coming in at night. Today we dove head first into the BMT process. His surgery went well in the morning and exactly at noon as planned they started the big chemo drugs. Steven has been very drugged up and not feeling very well pretty much all day. He's a little on the sad side wanting to "go home" but I'm sure he will get used to his new room soon enough. He's been so groggy that he's spent most of the day sleeping. We're trying to take turns sleeping there as much as we can so Dave's going to sleep there tonight so I can spend some time with the girls. It's great having my dad here. Grandpa Charlie has taken on his new parenting role with such enthusiasm and patience! The girls love having him here and he has been so helpful! At least the wait is over and as Dr. Wall told us --at least now we can focus on the task at hand--and that is getting Steven well!!
T-6 Wed. June 5--So far so good. Steven's hanging tough. The nights get kind of hard but luckily Dave and I are able to switch off so we can catch up on sleep. Things are progressing nicely as Steven appears to be tolerating the heavy dose chemo pretty well. This morning a nurses aid came in and Steven said "Good Morning!" and started chatting with her. She made the comment that Steven was a "breath of fresh air for this unit." Steven really is quite amazing. Here he is confined to a 10x10 room, taking very high doses of chemo and five other drugs to prevent complications, has a double lumen central line implanted in his chest, tubes everywhere, no hair and this morning when he woke up the first thing he said was "Mommy--it's a great day!" His attitude is definitely something I can learn from. When Dr. Wall came in the room today she commented that "Steven's room just gives out good vibes!" Thanks for all the prayers! I'm off to bed for some needed sleep!
T-5 Thurs. June 6--I'm happy to report that it's been another "smiley face" day! We have a daily calendar that we draw a picture of how Steven's day was and we were happy to draw another big smile! Dr. Wall said that Steven's liver levels (the Busulphin could damage his liver) look very good. She gave him a medical "A+" for the day! He did have a little breakthrough vomiting in the middle of the last night but overall he's been feeling very good. Tomorrow he finishes the Busulphin and starts another big chemo drug called Malpholin (sp?) It's a huge "throw up" producing drug so they will be increasing his Zofran and just watching him a little closer. He will take this drug until Tuesday's transplant. He is visited every day by the Physical Therapist and the Child Life Specialist who come to do "play" therapy! They even brought in a mini exercise bike that Steven loved! The goal is to make sure he get's out of bed and moves around. With him feeling so good, getting Steven to STAY in bed has been more of the issue!! He's moving all the time! This has presented somewhat of a challenge since he's attached to so much tubing and the monitoring pole. Luckily, if he pulls to hard or moves too fast it hurts so he has learned to slow down just a little bit. If you would like send send Steven a card (they don't allow anything else except cards) the address is:
Inpatient Steven Trapp 7700 Floyd Curl Dr., San Antonio, TX 78229 Room #389A BMT Unit.
One last note, it made me feel so good when Dr. Wall made the comment "I can't walk through Methodist Hospital without someone stopping and asking me if I'm the doctor treating a little boy with Leukemia from University United Methodist Church and asking how he's doing." We really appreciate everyone's concern and caring and especially all the prayers--please pray for another A+ day!!!
T-4 Friday, June 7--Another good day so far. He started on Malpholin this morning and hasn't thrown up yet! When Dr. Wall and her partner Dr. Grimley came in I asked them how much Zofran (anti-"throw-up" drug) he was getting and they kiddingly said "enough to pay for his college education!" It's obviously working great because Steven has been very happy, engaging, and normal. They don't expect much of a change until transplant day. Dr. Wall's motto is "Dare to be dull!" Meaning--they don't like surprises--they want things to go smoothly. We feel so blessed that so far, medically things have gone very smoothly! This picture is of Steven taking his evening "bath"! He has to have his dressing changed every night. The longer the soak time the better the dressing change goes!
So far, probably Dave's and my biggest "issue" has been just getting enough sleep! Steven has learned to sleep through most of the all-throughout-the-night nurse visits but it is definitely harder for Dave and I (and Lisa R. too) to get any consistent sleep. They seem to come in every thirty minutes to do something like change a line, stop the incessant beeping from any one of the five different monitors, check his vitals, or administer medications. Thank goodness Steven is doing well enough that we can switch off nights so we get a decent night sleep at least every other night. With the help of Lisa Rosenfeld we have a good schedule of our allowed two per day visitors so we are getting some breaks and Steven get's fresh "playmates" to entertain him! We ask for prayers for Steven for a medically "dull" weekend!
T-3 Saturday, June 8--Thank goodness for Zofran! We noticed last night when the Zofran started wearing off because Steven would quite suddenly comment that he had a tummy ache and we knew to get more Zofran in him quick! This morning was Meredith and Emma's first ever swim meet. Since it started at 7:30am a very nice friend (thanks Jodie!) came early so Dave and I could be at the meet. I left before Steven woke up and felt very bad when during the meet she called to let us know that he had been throwing up and was not too happy. At first I felt bad being at the swim meet while Steven was throwing up (that mom guilt thing!) but luckily Jodie is so good with Steven that within a short time he felt better and they were playing again. Since Steven is naturally getting most of our attention right now, and since it wasn't medically threatening, I felt at that moment it was more important to be there for Meredith and Emma to cheer them on. The rest of the day has been good--he's enjoyed a visit from his babysitter Amanda and even got to do some "guy" playing with Doug Grimm! So overall he's had a blessedly medically "dull" day!
T-2 Sunday, June 9--A pretty good day. Steven has been a little more subdued today. We think the effects of the high dose chemo have started to kick in. He's had some vomiting but fortunately it didn't last long. He's been happy but wanting to do more cuddling and relaxing versus his usual moving all around his hospital room. Today is a big day in that he received what we hope will be his last big dose of chemotherapy ever. They have started the meds which prepare him for transplant. As of today the chemo has wiped out all his stem cells. What this means is he has no immune system left. Naturally we have a variety of emotions going right now but we have a lot of faith that God is here every step of the way and with Steven's inner strength we believe it's all going to work out great.
T-1 Monday, June 10--Well, now were counting down the hours. Steven had somewhat of a tough morning. He woke feeling very tired and nauseous. The doctor said that Steven is probably starting to develop some stomach "ulcer" type things as an effect of the high dose chemo. He's ordered pain meds of which Steven had his first dose this morning. Once again he was pretty subdued wanting to just relax and watch Spongebob Squarepants--wonderfully educational programming!!! At this point we are indulging him with any show he wants! By this afternoon, however, he was much more energetic getting down on the ground to play hide and seek with Alice and building some great Lego towers with me! Dr. Grimley came in and gave us all the details for tomorrow. Meredith goes in at 6am to be prepped for the bone marrow harvest scheduled for 8am. It is general sugery so she will be put totally asleep. The surgery lasts about 1 1/2 hours. For those of you interested in exactly how they do it--they take a long needle and extract her bone marrow (stem cells) one teaspoon at a time out of each hip bone. It ends up being about 10-12 needle sticks per hip. Thank goodness she's asleep! After the harvest they send the marrow (approx. 1 pint) to the lab for filtering and then they bring the fresh bone marrow up to Steven's room where it is transfused into him. After Meredith recovers enough they plan to wheel her into Steven's room so she can see exactly what she did for him and watch her gift of bone marrow being dripped into him. Throughout the transfusion Steven will be on a heart and oxygen monitor. Then when all goes well, within 7-21 days he should start producing new stem cells and build a new immune system. We are bringing in a cake to celebrate Steven's NEW birthday--he'll have two birthdays a year!
Today has been very busy so I haven't let myself think too much about exactly how tomorrow will go. As I was driving to the hospital today I was listening to CCM Steven Curtis Chapman. He has this song titled "Bring It On". There have definitely been times throughout our journey when Dave and I have wanted to wish away the hard times we were going through. But then we realized that it's during the tough times in our lives that we are drawn closer to God. In the song Bring It On, he says "I'm not going to run away from the things that drive me closer to Him." Even when things have gotten tough--our faith has grown stronger. We believe that tomorrow will be the beginning of a lot of good days to come. Although the road may still be rough at times, we know God's compassion and grace will carry us through. Thank you so much for all your prayers--they have been and will continue to be answered. So as I told Dr. Grimley--Bring It On! Steven's strong, we have faith, and we will make it through.
POST TRANSPLANT--T-0 TRANSPLANT DAY-- June 11,2002--There it is! This picture was taken right after they started the bone marrow infusion. Since Steven was doing so well they let him sit on the chair (he still likes the chair better than his bed!) He wore his Superman shirt to commemorate the event. If you'd like to see more pics from today just click on the picture album and scroll down.
It was an amazing day to see one of our children giving the gift of life to another. Without Meredith's stem cells we knew Steven would not survive. The bone marrow harvest went terrific as Dr. Wall and Dr. Grimley were able to draw out blood that was rich in stem cells. We found it joyously amusing as Dr. Wall carried the bag of stem cells to us and said "Look at this blood, it is soooo....rich!" She had that same look that our obgyn's had when they passed our kids to us after they were born. Dr. Wall was coddling this bag of blood wrapped in cloth towels and showing it to us as if it were a new born baby. In a sense, that bag of stem cells truly is like a new born child. Dr. Grimley said it was a near perfect harvest. They like to see 3-5 million stem cells per unit of measure and Meredith's harvest had 5.65 million. God is Awesome!!
Steven tolerated the infusion very well not showing any side effects. As we have learned to appreciate, dullness is great and today we had no surprises. Now we sit, watch, and wait. This waiting game includes managing graft vs. host disease (rejection), infection (Steven's counts will go to zero), pain from severe mouth, esophagus, and stomach sores, and ultimately engraftment of the transplanted stem cells from Meredith. Tomorrow is day 1 and counting. They watch extremely closely for 100 days where at that point the risks of acute problems start to diminish. So we still are on the uphill side of the mountain but we are nearning the top. The doctors have said the the "roughest" road should be between June 13-22 when hopefully after that Steven's body should begin the recovery stage. But for now we are relishing in the beauty from the gift of life that Meredith gave today. She summed it all up when she said --"When Steven is 14 years old--I'm going to make him do my chores for a whole week!" After today's bone marrow transplant--we look forward to and are praying for many more years with a healthy Steven.
T+2 Thursday, June 13, 2002--The last two days have been a little tougher. Steven has had a lot more nausea and vomiting due to the tissue damage in his stomach. Over time his stomach will re build the tissue and the nausea will gradually subside. He's now on TPN which is "steak in a bag." He's sleeping a lot of the day due to the Fentanyl pain meds. He does, however, have periods of time where he is happy, engaging and playful! Overall he is hanging tough. I asked him this morning if he slept good and he responded "I slept really good!" So he still has his optimistic attitude! Dr. Grimley pointed out that he is still "well above the curve" meaning Steven's response so far has been above average! So luckily, no surprises today. We've had soooo many wonderful emails, cards of support and lots of prayers over the last couple of days--all of you "prayer warriors" are truly making the difference! THANK YOU!
T+4 Saturday, June 15, 2002--Not much new news. Everything is going as expected. The added Phenergan has helped decrease Steven's nausea and vomiting. He only threw up once last night and upon waking up today but right after he was done he wanted to play! They also had him on Lasix to drain off some extra fluid. I believe we went through about 25 pullups that day (he's pretty much always in a pull up now since he doesn't have much control over his "needing to go.") He has now verbalized that his mouth hurts so the mucositis is kicking in but it's not too bad yet and it may not get that bad--we just have to wait and see. Steven still likes the "idea" of food. Right now though, whatever goes in comes right back up. He asks for and we bring in all sorts of food to satisfy his "craving" however, most of the time he won't even take one bite. Dr. Grimley says this is very normal. Last night Steven went to bed with a PBJ sandwich nestled in his arms since every time I tried to take it away he'd say "No mommy--I'm going to eat it in three minutes." This morning he had a good report--in fact very good. Dr. Grimley said that he is responding better than 90% of other kids at T+4. We are so happy about that although we know that how he responds today is no indicator of how he may respond tomorrow--back to the BMT motto--one day at a time and dare to be dull!
T+5 Father's Day, 2002--This is a hard one. Steven had his worst night yet last night. Steven's mouth and stomach tissue damage has increased dramatically over the last 24 hours. He was in a lot of pain and not wanting to play at all. Dave was there and was spending the night. It's times like this that make this whole situation so hard because I just want to drop everything and be there every minute of every day but I know I need to be here for our girls also. Thank goodness we have Grandpa Charlie here helping us out. Anyway, they have upped the pain meds significantly so now Steven is sleeping until it wears off then waking up crying until they give him more. I'll be there later this morning and overnight so Dave can have some one on one time with the Meredith and Emma.
I think on this Father's Day it's hit Dave pretty hard. We knew these side effects were going to happen and we are blessed that until today it hasn't been too bad. After five months into this and going on two weeks in for the transplant, the day to day pressure and lack of consistent sleep starts to take it's toll. As Dave and I were talking I remembered a verse I had read from a good book my friend Sue gave me called "Daily Splashes of Joy". It is from Romans 5:3--"We also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not disappoint us.." We ARE persevering through this and God is giving our family the strength we need. Not that it's been easy but it's days like this that we really rely on our faith and hope. I guess the true test of character and faith is how we handle the times when things aren't going so well. We know that this too shall pass and Steven will get through the mucositis and will want to make snakes with playdough again soon. But for today we're just going to do a lot more comforting and cuddling.
T+6 Monday, June 17,2002--Another very tough day. Last night was long as he started running fever about midnight. They started Vancomycin and Cefapine. He's on higher dose Fentanyl for pain, Benadryl for the narcotic induced itching, and Phenergan and Zophran for all the vomiting he's doing. So today he is again pretty much non responsive, has fever, is vomiting up nasty bile, has bad diarrhea, can't swallow his own saliva due to the mouth sores so he's spitting and drooling, he can't get in a deep sleep, is shaky, and is overall just feeling pretty darn miserable (sorry if I'm grossing you out -- it's just the reality of our situation.) We changed his bed four times in the middle of the night last night and I don't expect tonight to be much different. He can't keep Tylenol down so we just have to wait the fever out. Cold wet washcloths on his head have helped some and they seem to calm him a little too. He barely talks because it hurts too much to say anything. I've learned though that even though he may look asleep he usually is listening to what I say.
This morning we had a neat thing happen. As Steven was lying in bed looking asleep and pretty miserable, my friend Avery was talking to him telling him about how people were praying for him to get better and that he must have a direct line up to God with all the prayers going his way. He immediately opened his eyes and said so clearly "Hey, where's my Angel coin?" Our friends Priscilla and Roger Cude had sent Steven a neat coin with an Angel imprint on it that he has become quite attached to. It was neat that he connected Avery's prayer comment to his angel coin. When I gave it to him I think in some small way that coin and Avery's comment helped calm him a little and allowed him to drift off to sleep.
Anyway, we knew these "dog day's" we're coming and we expect them to last throughout the week. The good news is that the important numbers like his liver and kidney function look good and that's what really counts. Everything he's experiencing now is normal and are just side effects from all the high dose chemo he was given prior to transplant. He is getting a platelet transfusion tonight (if anyone locally could donate platelets within the next two weeks Dave and I would really appreciate it since Steven will need several more platelet transfusions and platelets are harder to come by since we're told they can only be stored for five days.) It does not matter what blood type you are. You can donate at the main SW Blood and Tissue Center on I10 or at Methodist hospital. The only bummer is that it takes about 2 hours to donate platelets but if you have the time we would really appreciate it. To get more specific info on donating you can go to their website at www.bloodntissue.org. THANK YOU!!!
Anyway, for now instead of day by day we're just working on minute by minute. He is hanging tough and we are looking forward to seeing his wonderful smile again soon.
T+7Tuesday, June 18, 2002--Dave's turn. Well, today and last evening have been particularly difficult for me as a father. There have been, however, some very profound moments that have made me appreciate the fighting spirit of Steven. All afternoon he was trying to stay strong as difficult as that was for him. While the nurse was in the room checking his vitals, I was sharing with her how difficult it was to see him so down and not wanting to play. After she left the room, Steven saw some clay at the foot of his bed and motioned to it that he wanted to open it. We didn't play too long and it was mostly just him sitting up watching me make shapes with it. He didn't say a word the entire time because it hurts too much for him to talk. I think he wanted me to know that he's "still in the game."
The most difficult emotional experience I have had thus far was last night when Lisa returned to the hospital to spend the night with Steven (especially now he wants his mom during the middle of the night!) it was a feeling comprised of satisfaction, joy, and sadness as it made me appreciate the relationship that exists between a son and his mother. Steven was so strong all day in the midst of a lot of pain. When Lisa walked in the room he looked at her, tears welled up in his eyes and he broke down and cried. It was at that moment that I realized how much his mom means to him and how much he was hurting inside. Steven held his emotions in balance all day long while he was around me but he couldn't hold them any longer after he saw Lisa. I was so proud of him for how strong he had been all day, so joyful to see the love that exists between him and Lisa, and so sad to see how much he is hurting. It was a very tough day, but included in this day was a transparent moment that defines the relationship between a mother and child.
So for now instead of day by day we're just working on minute by minute. He is hanging tough and we are looking forward to seeing his wonderful smile again soon.
T+8 Wednesday, June 19--Pretty much the same story today. Steven had a marginally better night last night but has begun shaking a lot from the Cyclosporins. He is receiving daily doses of Neupogin to boost his white blood cell count. He will have another platelet transfusion in the next two days. He may need platelets every other day until Meredith's cells start engrafting. I've had several people email needing more info regarding donating platelets in Steven's name. I found out you need to make an appointment by calling the South Texas Blood and Tissue Center. The only place you can donate platelets is at the main SW Blood and Tissue Center on I-10 and Vance Jackson. Their phone number is 731-5555. You need to give them his name and that he is at Southwest Methodist Children's Hospital. Thank you to all of you who have already scheduled appointments. It's neat to know that especially with platelets he will quite possibly get your exact platelet donation (versus just a credit under his name.) We really appreciate your help.
Last night as I sat next to Steven just rubbing his head trying to help him just relax, I started thinking of how during times like this it's so easy to think in a bubble with "this is only happening to us" type thinking. When in reality we have met SO many people in the hospital system going through the same or worse scenarios. I know we've had a lot of prayers go out our way for Steven but today I would like to ask for some extra prayers for two other special kids in the rooms on either side of Steven's. Please pray for Andy a little five year old boy from Arkansas who has Acute Myelogeous Leukemia. He received a cord blood transplant yesterday. He is a very cute little boy with a sparkle in his eye and a very nice family. The other patient is a 20 year old girl named Shawna with almost the same cancer type as Steven. She is receiving a stem cell transplant next week. As her dad-Mike, and Andy's dad and I we're talking in the hallway I noticed we all had that same "positive but a little anxious" look on our faces. With all the tough cases they have in the Bone Marrow Unit, I've come to REALLY appreciate all the special nurses, Dr. Wall, and Dr. Grimley. They take such good care of our precious children and at the same time know how to gently handle us tired, anxious, and sometimes uncertain parents. Thank you for your extra prayers for the patients and the medical staff.
I've had several people email asking about how Meredith recovered. She is doing great! She bounced back within about four days and is moving around like it never even happened. A week later when she was nervous about an upcoming swim meet she did, however, try to use it as a scapegoat. She gave us the "Mom, I think my back hurts again--maybe I shouldn't swim" But when I told her no deal she happily went to the meet and even came in 2nd in her race! We feel very blessed that it all went incredibly smoothly. Well, I'm off to the hospital for the night. Steven did eat one marshmallow from a Lucky Charms box so hopefully that is a sign of better days to come!
T+9Thurs. June 20,2002--Thank goodness for Fentanyl. Steven is pretty much on a drug induced haze which is helping him to get through this really tough week. His mouth, esophagus, and stomach sores are bleeding and he can't talk at all. Fortunately a lot of the throwing up has subsided. Today we had our first bit of REALLY good news! He had a white blood cell count today of .2. His body has started producing what are called Segs and Bands which are the precursers to white blood cells. In our terms this means HE'S STARTING TO ENGRAFT!!! YEA!!! If all goes well we should start to see a steady increase in his white blood cell count everyday. Dr. Wall came in all thumbs up today. She likes what she sees. His liver and kidneys are holding steady and everything looks good for the engraftment. By looking at Steven you'd never know he was medically getting better but as more white blood cells form his mucositis will start improving and his wonderful smile will come back. For those of you who know him he is quite the talker so not hearing anything for five days has been hard. The blood cultures did grow out three different pathogens which means he does have an infection but the two different antibiotics he's on are holding his fever in check. Dr. Wall believes that we should see a marked improvement by hopefully this weekend. This has really been a long week so it was so good to get the news that Meredith's cells are starting to find their home in Steven.
T+10 Friday, June 21, 2002--Steven's white blood cell count grew to .9!!! That is a big jump in 24 hours. Dr. Grimley was very pleased saying it was a larger jump than he would have expected. YEA!!! It's amazing what getting some good news does for Dave's and my mood. He had a normal temp today so the antibiotics are working great. So medically Steven is progressing smoothly, however, physically Steven still is pretty miserable. Dr. Grimley said that by Sunday we should see a marked improvement. From last night to today I felt like he had a marginally better night in that he didn't throw up. He still can't swallow and is still spitting up a lot but today at least he's trying to talk. He is being a little more expressive by showing anger. Over the last week he has been so lethargic and non responsive that to see him get mad and want some control over his care is a really good thing. His anger is shown mainly through his facial expressions as shown by the incredible "mad face" he gave to Dr. Grimley when he walked in the room this morning. Someday he will understand what a godsend his doctors have been!
In looking back over this very hard week I am still amazed at Steven's strength. Every night he takes a bath to help soften the central line bandages before we do a dressing change. Soon after his central line was implanted he started wanting to be the one to peel off his bandages. This is a big deal since they are practically glued on and even with the softening from the bath his skin is so sensitive that it still can hurt. Every night this week, feeling miserable and with his hands shaking, he still managed to take off the dressing himself. It just shows the strength of someone who wants to get better and with a white blood cell count of .9 and growing--we pray he is on his way!
T+13 Monday, June 24, 2002--I've had several people email concerned since I hadn't updated in several days. After the last nine hard days and nights, I have taken a mental break and have tried to just focus on Meredith and Emma when I've been home. Sorry if we've worried you!
Seven is doing better each day! We continue to get good reports on his engraftment! His white cell count is now up to 6.5!!! It has doubled every day! Dr. Wall and Dr. Grimley are extremely pleased with his progress. We are now entering the next phase of recovery which will get us closer to going home. He needs to get off all IV pain meds, start eating and drinking on his own, get off TPN (IV nutrition), be fever free, and be able to take all his medications by mouth. These are pretty big hurdles considering where he is today but we are getting there bit by bit each day.
To give you an idea--a normal mouth, throat and stomach has 14 layers of tissue. At this point I'm told Steven's mouth, throat and stomach has about 1 to 3 layers with hopefully a new layer growing each day. It's not an even growth so some areas will have more than others. Needless to say that's why he continues to do a lot of spitting instead of swallowing, is just starting to be a little more verbal, and still winces if we touch his throat. We are, however, seeing marked improvement daily. His body has to eliminate all the dead tissue so we have seen more vomiting and diarrhea but that's a good sign he is growing new tissue. Now we are watching for any developing fever or skin rash which would be associated with GVH (Graft vs. host disease or in our terms "rejection").
As I've said before, one of the hard things over the last nine days has been not hearing Steven talk. It's just so NOT like him to be quiet. Over the last ten days Dave and I have become so used to talking to him normally yet not expecting any response. Yesterday you can imagine my happiness when as we were laying in bed cuddling I said "I love you Steven" and he very quietly responded "I love you too mommy." He IS getting a little better every single day. Thanks again for all your prayers!
T+14Tuesday, June 25--He's talking again! It has been so nice to hear Steven's voice. It's sometimes hard to understand him but he's trying! We tried to switch him off of the IV Fentanyl to oral Methodone for pain relief and as Dr. Wall put it so eloquently "we flunked." Yesterday when they stopped his fentanyl he became extremely agitated and upset with me! He kept saying "you go away--I can't like you!" Since I was just so happy to hear him talk this didn't bother me (well, maybe just a little.) Anyway, we tried again today and he was such a trooper taking the oral Methadone but within ten minutes he threw it all up. His stomach just isn't ready. He did swallow and keep down two bites of watermelon so we are gaining some ground. They stopped his Neupogin (a white cell stimulator) and his counts dropped only to 5.5 (this is great because usually when they stop it the counts drop by half so he is holding strong!) Today he woke up and he gave me a huge smile and said "mommy I slept really good!" Most importantly he has wanted to get down from his bed and play.
Steven had a huge day yesterday when Tony from Ken Batchelor Hummer Dealership brought him a remote control Hummer. Steven had been very agitated just minutes before but when Tony came in with that car Steven slowly came around. Tony was so good with Steven motivating him to finally sit up and race the car all over the room! Steven loved ramming the car into his hospital room's door! I guess it was a way to take out some pent up frustration! Steven was all smiles with Tony and the Hummer! THANK YOU Tony and Ken Batchelor--you made Steven's day! I borrowed the nurse's camera so hopefully I can put a pic of Steven with his Hummer on soon!
T+15 Wednesday, June 26--This was a big day! Steven was allowed a two hour pass outside the hospital! As you can see from the picture, Steven was pretty aprehensive about leaving. It took about thirty minutes to try to explain to him that he was able to leave his room and go for a ride in our car. He was clearly nervous and trying so hard to comprehend that he could leave but had to come back. We got him dressed in real clothes and he even wanted to wear his Batman underwear! He kept saying "I don't have to take my pole?" meaning his big IV pole that he has dragged beside him for a month now. He was a little wobbly as he walked out of the room. Getting him out is a way to gain some normalcy and hopefully encourage things like eating and drinking!
The biggest hitch came when his nurse Julie told him he had to wear a mask until he was inside our car. To say the least that did not go over very well. We tried everything and just when I thought he wasn't going to get to leave, Julie said "bury your head in your mom's shoulder's and just get outside quickly!" Steven was exceptionally quiet and seemed to be looking in amazement just taking it all in. He decided he wanted a blue ICEE (why couldn't it have been something easier?) so I ended up going to three different gas stations until finally we ended up at Target where I called them from my cell phone and asked them to bring an ICEE out since Steven wasn't allowed to leave the car. He took one sip which I don't think he even swallowed and within about ten minutes, as I was driving down I10 hwy, he threw up all over his seat. Poor Steven, he was so upset saying "I can't throw up in the car!" but he couldn't stop himself. Luckily, that long moment of stress passed and we ended up driving to Fiesta Texas (Six Flags) where we parked along the street and watched all the roller coasters. We talked about how sometime soon we will take him there to celebrate him getting better. We returned after about two hours and he gladly went back to the security of his hospital bed. I was prepared for him to get upset about going back but he seem relieved and ready to take a much needed rest. This was a lot in one day.
The major hurdle we're still working on is getting his stomach to keep anything down. He's off IV fentanyl and down to twice a day IV methodone. They stopped his TPN today so hopefully he will want to start eating and drinking soon. Dr. Wall has said that barring any complications, as soon as his stomach can keep the twice a day cyclosporins (anti rejection drug) in without throwing it back up, he will be ready to go home. That hopefully will be within the next week.
Besides feeling the excitement about Steven coming home, I'll have to admit I am surpisingly anxious. One of the nurses commented awhile back about "this is the safe place" and "it's a lot more risky out there" (meaning outside the hospital.) That comment keeps playing in my mind and today with our little two hour reprieve came with it all these new worries about germs, sicknesses, possible late night trips back to the hospital, something sudden happening and not having a nurse right there, managing three kids, going daily to the hospital's infusion center, my dad going back to Chicago, Dave going back to work, and even adjusting back to life at home. Today though I have to remind myself that God is in control and it will all work out. We are just so thankful that Steven is doing great and hopefully by this time next week will have our whole family home together again.
T+16 Thursday, June 27, 2002--This has been kind of a quiet day for Steven. He still seemed tired from yesterday's big adventure out of the hospital. He was unhooked again from his IV today and we went to the BMT "playroom" (not much of one) and played with a basketball set that our friend Alice sent him. He got so tired so fast. We have to keep reminding ourselves that he has been lying in bed for a month and throwing up virtually everyday many times so I'm sure he feels very tired. I know after he gets home his energy level should return quickly. Dave offered to take him for another ride but after playing with the basketball he was too tired and preferred to play quietly in his bed. Meredith did win the gold star today when she told Steven she would give him a present if he ate something. After some hesitation Steven ate one (yes, one) Apple Jack's cereal piece and took one sip of water. He didn't act like he liked it but luckily it didn't come back up--YEA! His taste buds are still all out of wack so things don't taste the same. That was it for food for the day but we're happy with it since every bite he takes get's him closer to coming home.
We were a little concerned that his WBC counts dropped to 2.6 today but Dr. Wall said that is normal after stopping the Neupogin. His red cells and platelets are still holding. He also had a little "glitch" according to Dr. Wall in his liver function. The liver and kidney functions are the real important ones. She said it's nothing to be alarmed about and she has taken him off a few things that might be causing the problem. With him vomiting still today coupled with his counts being "off" a little, Dave and I are a little worried tonight. We realize that their are going to be ups and downs with Bone Marrow Transplants and the first 100 days may sometimes feel like a roller coaster. Overall Steven has done great with everything being a success so far, however, hearing even one thing that may not be so good makes it's hard not to be concerned.
I read a verse tonight from a neat book my friend Sue gave me--it says "Worry makes a heart heavy, a kindly word makes it glad" Proverbs 12:25. All the kind words, emails, and cards continue to help Dave and I get through this uncertain time. Today we pray for a good report on Steven's liver function and a growth in his White Blood Cells!
T+17 Friday, June 28, 2002--It's 9:30am and it's a good day already. Steven's liver counts have started coming back in the normal range. Not much explaination for why the numbers went out of range but all signs point to good. Also his WBC counts held at 2.5 so that's a good sign also.
Today we are entering unchartered territory for Dave and me. Dr. Wall would like Steven to come HOME for about 4-6 hours. Both Dave and I have been so uncertain about "dangling the carrot" of having him come home for only for a short time worrying that it might make things worse. We thought we'd just wait until he can come home for good.
With the problem, however, of Steven not wanting to eat or drink and not knowing if he can keep it down anyway, Dr. Wall and we now feel we have to try something different. Coming home might be just what he needs to feel normal and do normal things like drink and eat. Actually she's not as concerned about the eating solid food as she is about him drinking fluids. The only thing keeping him in the hospital is that he needs IV fluids to keep his kidneys in check and he has yet to take the oral anti rejection medication. Tonight back at the hospital we are going to try to get him to take it and hopefully he'll be able to keep it down. As soon as he has a couple of days of drinking fluids and taking oral cyclosporins then we're home for good! We've decided that after being home and then having to go back to the hospital one of two things will happen--he'll either get really mad which might spur him to drink (and hope it stays down) or he will be happy to go back which tells us he's really not ready to come home.
I am learning so well that all kinds of change--whether they be negative or positive still produce some level of anxiety. I would never have dreamed that I'd be anxious about my son coming home. Knowing he's going to be here in the next hour, I'm suddenly noticing the Pokemon cereal scrunched into the carpet and wondering if it's been there long enough for germs to grow on it--we'll I better go start vacuming, dusting and wishing away every germ in this house (is that possible?)
T+18 Saturday, June 29, 2002--Steven's visit at home went pretty well. He was definitely excited to come home. At first it really bothered me that Steven was so wobbly walking and tired so quickly. For Steven, however, just going up one flight of stairs or playing in his room is way more than he's done in a month. He asked for nine different food items but couldn't actually eat any of them. Even when tasting Fruit Gushers, his favorite, he spit it out saying "these taste yucky". He doesn't have any taste buds yet since his mouth is just now recovering from all the tissue damage so everything tastes and even smells different.
After about one hour at home he became very tired and asked to go to bed where he slept for three hours. He ended up sleeping almost 17 hours today. When he woke he was very quiet preferring to just rest on the couch. The final tally for food and drink for the day was one sip of lemonade. We realize even more clearly that his recovery time is going to take awhile. Back at the hospital we tried the oral cyclosporin medicine twice, both times ending with him throwing it up within 30 seconds. So he went back on the IV form. I was so proud of him for taking this medication that is so nasty--it is in an oil base that cannot be mixed with anything. As his mom, I felt so bad making him take it a second time knowing he was going to just throw it up again. The hardest part is that he wants to eat, it's just that he can't keep anything down. The nurses keep saying that it's still early, this is normal, and it's just going to take time and patience.
We're taking a break from trying the oral and just focusing today on getting him to try something to drink This poor kid has thrown up more in the last month than I've probably thrown up in my whole life. For a three year old--I admire his stamina. He's coming home again for a couple of hours today and then back to the hospital for his IV cyclosporin and IV fluids to keep his kidneys in check. Overall he is happy but tired. He's here--gotta go!
T+19 Sunday, June 30, 2002--We're Coming Home -- In all the updates to date I don't think I've ever been at a loss for words. Tonight I have sat here for almost an hour trying to think of how to express the dichotomy of emotions both Dave and I are feeling right now. After 28 days as an impatient, at 8:00pm tonight Steven was officially discharged from the hospital.
Tonight also is the night that Andy, the little six year old boy in the room next to Steven, died from complications stemming from his Leukemia and bone marrow transplant. Both Dave and I were able to talk to Andy's parents today. When Dave saw them this morning in the PICU, Andy's mom was sitting in a chair rocking Andy in her arms. I can only imagine what was going through her mind and what they must be feeling. Please keep their family in your prayers during this incredibly difficult time.
As much as Dave and I want to be jumping up and down with excitement that Steven made it through transplant, our happiness has definitely been tempered by what Andy's family is going through right now. Here we are packing to go home while they will have to pack to go home--without their son. When we entered the hospital that was my biggest nightmare for Steven--and here they are having to live it. It just hits so close to home. Today's experience has once again brought back the raw emotion of knowing how fragile life is. Through this almost exactly five month cancer journey, Dave and I have learned so clearly that life is meant to be lived day by day --not worrying about tomorrow or wishing away today but the importance of finding the joy in each day. We also know it is easier said than done.
With the help of an incredible medical team, Steven has now made it over two major hurdles--getting into remission and making it through the bone marrow transplant. This race, however, is far from over. We now have the "100 days" as our next challenge. When we reach the 100th day the risk of complications drops and hopefully then we will breathe a little easier. Steven won't be considered "cured" until he is cancer free for five years. This is part of our life and yet now I couldn't imagine any other way.
Tomorrow at 8:45am starts a whole new routine which includes daily visits to the hospital's infusion center to check Steven's Cyclosporin levels, blood counts and other things. During his visit he may be given blood, platelets, fluids or nothing. His counts today look good with his WBC at 2.1 (with a lot of neutrophils and monocytes so his body is producing the precursers to mature white blood cells--YEA!) His hemoglobin and platelets are holding steady also. We know that at any point graft versus host (rejection) can occur. Steven is still extremely susceptible to infection so it is very reassuring to know how closely he will be monitored. We will be doing his central line dressing changes and flushes at home until they remove it hopefully in the next couple of months. Come mid July our lifestyle will change again in that my dad will return to Chicago and Dave will go back to work.
Tonight, however, we are immeasurably thankful to see Steven taking a sip of chocolate milk and not throwing it up and being able to hold down his all important anti rejection medication. We spent all day marveling at the hourly changes in his ability to eat and drink. He still has the hallowed dark eyes from throwing up so much and is still wobbly but today when he said "mommy, I ready to play with Meredith and Emma" --that was music to our ears! This journey is truly one step at a time.
T+22 Wednesday, July 3, 2002--We're attempting to get the hang of our new routine. Steven has had kind of a tough time adjusting back to sleeping at home. I think he actually liked all the incessently beeping IV machines! He is sleeping very restlessly and seems a little over stimulated at home so he's not resting as much as he should. He's a little on the crabby side at times (totally understandable!) Come to think of it, our whole family is a little on the crabby side while trying to adjust back to another new routine --I keep telling myself--it's only been two days so we should cut ourselves some slack. Getting Steven to eat and drink is still our biggest battle since most everything still tastes different. We know he will recover better if he's eating, or at least drinking something.
With all the thunderstorms in the last three days, everyone is playing musical beds with the girls crawling into our bed to sleep with Daddy while I'm still Steven's bed partner since he is so used to sleeping with me at the hospital. Last night I said "Okay, Steven--tonight I will cuddle with you for a little while and then I need to go to sleep in my own bed with Daddy" to which he responded "But mommy, I NEED you--you are so squishy." I'm still trying to figure out-- "squishy"???? (I'm not so sure that's a good thing!)
Since the first night home was a long one, On Monday Dave took Steven for his first day at the Infusion and Transplant center. Poor Dave, it was a looooong day! He was there for about seven hours since Steven needed IV fluids due to being a little dehydrated. Steven was very irritable and anxious trying to figure out his whole new "deal". Dave was drilled by the nurse on everything we need to understand, keep track of, watch out for, call the unit on, and measure. Because Steven's so "fresh" (their term) out of transplant they really monitor him closely. The big number they watch is his cyclosporin level which they monitor daily. The number they are looking for is around 300--today his level is 187 so he has a way to go. The dosing can change daily so we get a call everyday telling us how much to give him. Steven still hates doing it but with every dose he is getting a little (and I do mean a little) bit better. This is such an important drug as it controls if and how much his body is rejecting the new bone marrow. On Monday his level was only 137 and by that evening Steven started getting the first sign of GVH (graft vs. host disease) in the form of a pin point skin rash all over his body. It's itchy and irritating to Steven but on the rejection scale it's pretty mild. Rejection can get out of hand very quickly hence this is why they may adjust cyclosporin levels daily.
Today Steven has been a little more at ease and did well at the infusion center (lucky for mom!) We were in and out in about four hours. His WBC count is still 2.1 so not much change yet. His ANC is 690 with the goal being at least 2000. He's not leaving the house except to go to the hospital and he can't have hardly any visitors so hopefully we're keeping his infection risk is at a minimum. Overall, Dr. Wall thinks he looks good for day +22! (To see new pictures just click on the "Picture Album" icon!)
T+27 Monday, July 8, 2002-- We've made it through the first week home! The last seven days have definitely been transition days. I'm happy to report, however, that we feel much better adjusted!! Steven is sleeping better, eating better, and drinking better (not back to "normal" yet but that day will come.) We thank God for these "better" days! His mucositis has diminished dramatically and he is trying many more foods. His favorite now is Star Wars Gogurts. It is so nice to see him holding food and fluids down.
Our nightly routine is still the most stressfull of the day. He has to have his dressing changed, lines flushed and take his second daily dose of anti rejection medication. He has become the king of negotiating. By now though he knows we're not going to back down so when he's resolved himself that the medicine is not going away, he says "don't look at me" and then pushes the syringe full of the nasty, oily cyclosporin into his mouth all by himself! The chocolate milk chaser is good for another three ounces of fluid (we have to keep track of all his fluid intake) He truly has made tremendous strides in the last seven days!
Today's visit to the infusion center went great!! His WBC count is up to 3.3 and his platelets are at 190! He probably won't need another platelet transfusion in the near future (or hopefully ever!) Thank you to everyone who donated platelets! His cyclosporin levels dropped to around 150 so we have to increase his dose but that should help reduce the GVH rashes. Over the last week he has had several GVH rashes but non too serious. Dr. Wall expects them to diminish over the course of a couple of weeks. Right now our biggest concern is that Steven is slow in his walking and can't really run at all. Dr. Wall told us that it most likely is muscle atrophy from lying in a hospital bed for a month. It could also be an effect from Vincristine (chemo drug he received a couple of months ago) which can cause temporary muscle damage in the legs. Fortunately she said either one is temporary and within time his muscles will stengthen back to normal. She reminded us that he's still so "fresh" out of transplant and recovery takes time! Fortunately, medically he is well ahead of the game! Since his counts look so good we don't have to go back until this Thursday. Next week they will do a test that will show what percent cells are Steven's old ones compared to Meredith's new ones. The goal is getting to 100% donor (Meredith) cells by day 100. We are not, however, counting the days until day 100--we just appreciate every good day as it comes.
Due to Steven's immature immune system we are pretty much restricted to the house. At first I felt like Steven would get real bored and need to get out more, however, we have come to see that just hanging out and enjoying the "lazy" days of summer are enough for him--and us! Our family is ready for some non eventful days! A few days ago my dad was hanging a bird feeder on one of our trees. Steven was sitting on a lawn chair just watching his Grandpa Charlie "work" when out of the blue he said "mommy--it's so nice to be out of the hospital." We couldn't agree more!
T+30 Thursday, July 11, 2002--It's amazing to me that a month has gone by since the day of Steven's bone marrow transplant. We are so pleased to see Steven's counts continue to rise! Dr. Wall gave him an A+ today. His WBC count is up to 4.2--this is great! His platelets are now over 200 which is considered normal--boy, I think this is the first time I've been able to use the word "normal" with ANY of his counts since he was first diagnosed back in January! What a good feeling. His fluids, liver, kidneys, and red blood cell counts are also all good. He's still not walking very well but we do think that over the last several days we've seen a little improvement.
Since Steven's Leukemia diagnosis five months ago, we have lived by these CBC blood count reports receiving them, at some points, daily. As we've said before, they are the indicator on, at first, how extensive the Leukemia was, to next, how well the chemo was working, to now, how well Steven is doing post BMT. The varying emotions while we wait for these reports have ranged from eagerness to anxiousness to, while waiting for one past blood/bone marrow test--almost panic. Fortunately, besides the report that diagnosed Steven's Leukemia and then the ensuing PH+ Chromosome and MONO 7 cell, every report since then has held no major negative surprises. We truly thank God for that.
In our "BMT world" Dave and I have come to realize how very fortunate Steven has been. Through this journey we have been exposed to many different families and their special children. Everyone has their Leukemia "story". We've learned that their is no "average" Leukemia or family situation. Every family we've talked to has a tough story to tell. And they can be heartwrenching. Yet the parents we've met all seem to maintain a very positive and hopeful attitude--even in extremely tough situations. Dave and I feel that we've been able to keep our faith strong and remain so hopefull partly because Steven has, so far, progressed so remarkably well--especially post BMT. We've all heard the phrase "God gives us only what we can handle," yet Dave and I have wondered how we would handle what some of these other parents have had to go through. I guess it's all perspective. We were talking tonight about how much we really admire those parents who continue to maintain their faith and strength while enduring sometimes some really tough situations. We have seen that Hope, faith, and attitude are so very important regardless of situation. I like this phrase a friend told me "If you're brought to it--God will pull you through it".
Because Steven's post BMT progression continues to look good, Dr. Wall has scheduled the surgery to remove Steven's double lumen central line. YEA!!!!! He gets so anxious before dressing changes and we are always so worried that he's going to get it caught, snag it on something, pull it out, or have the line get infected --which would not be good at all! Typically they don't remove them until around day 60-100, however since he's not needing additional fluids, platelets or blood, she feels it's time to get it out! The surgery will take place next Tuesday. He still has his implanted port-a-cath which they will use to draw blood samples or give him anything he may need in the future. So now we're back to "creamin him!"--we love that EMLA numbing cream--it makes all those needle sticks go so much smoother! He was very used to having his port accessed at Dr. Estrada's office so I'm sure he will get used to this routine again. And I know he will be excited to get those long lines taken out. This is definitely a big step towards his healing!
Removal of the central line, however, does not change his activity restrictions. He still can't swim, be around groups of people, or go most anywhere with recirculated air (ie: movie theaters, restaurants, stores, etc..) until his immune system comes in stronger--usually by around day 100. While Steven is under for surgery, Dr. Wall is going to do a bone marrow aspiration to determine what percent donor cells he has! Go Meredith cells!!!!!!!!!!!!!!
T+35 Monday, July 15, 2002--Today was my first day with my dad gone and Dave back at work. I am mentally trying to prepare myself for our "new" routine but with all the storms and the girls Tennis' camp getting rained out--all I wanted to do today was sleep! With three kids at home, however, sleep is never an option during the day so instead, the kids and I cleaned out our playroom. It actually felt good to do something productive yet "mind numbing". We collected over 60 Beanie Babies we are going to donate to the Ronald McDonald house. It feels good to do a little organizing..
My dad left last Friday. It was very hard to see him go. We sure couldn't have made it through the last six weeks without him. My dad had such a "calming influence" on our family. Emma and Meredith loved having him take them to their swim meets, camps, VBS, play dates, movies, etc! His help with the girls allowed Dave and I more time to really focus on Steven's hospital needs. It was also nice that when my dad was with Steven at the hospital Dave and I were able to have special time at home with the girls.
Before my dad left, I asked him what was one thing that stood out in his mind in regards to each grandchild. With Meredith he remembered obviously all the fun things they did together but one comment in particular really stood out. It was in regards to her trying to understand exactly what "retirement" means. One day she said to him "Grandpa--I finally understand what "retirement" is--it's like summer vacation....and then you die." My dad thought that was quite funny! We all hope he has a loooooong summer vacation! With Emma he remembers hanging a lot with her while Meredith was at an Art camp. One day he and Emma went to see the movie "Spirit". About halfway through the movie she decided she was tired and wanted to go home. As they were walking out of the theater she said "Hey, Grandpa--was that the best "half-movie" you ever saw?" My dad did get to sit through ALL of Scooby Doo--twice! What a lucky grandpa!
As far as Steven goes--that was a tough one since most of the time my dad was here, Steven was in the hospital. As I said, there were several times my dad would take a "shift" at the hospital watching and helping Steven. Steven loved having his Grandpa Charlie there. Before and after Steven's hospital stay, my dad loved how Steven would come and wake him up usually early with a "Time to wake up Grandpa Charlie!" My dad also became quick friends with our next door neighbor's kids--David, Daniel, and especially 2yr old Julia. She loved cuddling "her" grandpa! In fact, one day after Steven returned home from the hospital I asked him to go get something for his grandpa when Julia, who happened to be over for a minute said "Hey, that's MY grandpa!" Boy does my dad make friends fast!
I knew the time would come when we would have to get back to our own family routine. I know it was hard on my mom to leave my dad for so long--I don't think they have ever been apart this long! Luckily my mom was able to take off work to be with us during the first couple of weeks when Steven was diagnosed with Leukemia and now my Dad was able to help us through the transplant. I think it was such a blessing that my dad had just retired a couple of months earlier so he could commit to such a long time at our house. Last Thursday my mom flew down to drive back to Chicago with my dad and spend a couple of "vacation" days getting re-aquainted. After six weeks with three kids and in this situation--I know they will enjoy the peace and quiet!! I truly thank God for my parents. I wanted to write this to let them know how much I love them and how fortunate Dave and I are to have their love and support. THANK YOU!!
Dave and I would also like to thank our kids' other Grandpa--Dave's Dad Ron for being there to help in such special ways. Steven received a card in the hospital almost daily from his Grandpa Trapp. Ron also made several visits down from his new home in Sun City Georgetown to cheer up Steven's spirits. The girls really appreciated being remembered also with his thoughtful gifts and cards. We know Ron has put Steven on many prayer lists in his new hometown--we know prayer works and with Ron being a retired Minister--we're sure he has connections up top! Thank you Ron for all your emotional and spiritual support.
Well, tomorrow is the surgery to remove Steven's central line. He will also have the BM aspiration to see what percent are Meredith's cells. He is doing so well. His walking has improved dramatically over the last several days--even running at times! I think just moving around more will help tremendously. It's so nice, even on this cloudy rainy day to see the joy he finds in such small things. Meredith and I baked some cookies this afternoon while he watched and helped just a little. When we finished he had the biggest smile on his face and said "Boy is it fun to bake cookies!!!" Such simple pleasures.
T+37 Wednesday, July 17, 2002--Steven's surgery to remove his central line went great. It was a very long day, however, because his case was delayed over three hours and he hadn't been allowed to eat or drink since the night before. This, coupled with the fact that he was very anxious trying to understand what was going to happen to him and why made for a quite a long day. Thank goodness for an understanding anesthesiologist who gave Steven a couple doses of Versed to calm him down. He even relented on the no fluid rule and let him eat a popsicle before the surgery. Whew--Dave and I were very happy about that--it was getting very hard to calm him down.
After the surgery, the surgeon came out and handed us a baggie with Steven's two lines in it as a keepsake. It was kind of like them handing you your kids' tonsils in a jar or something. It was a nice gesture and I will keep it in his his box of mementos I've been saving for him since he was diagnosed with Leukemia.
As far as results go, we have the results of only one of the three tests they are doing. The results of the Bone Marrow test--the one to see the actual "quantity" of bone marrow Steven's body has produced has come back very good with 30-40% of his marrow being filled. Dr. Grimley said they would have been happy even with 10-20% so he really is producing some "robust" (his word) marrow. The big test, the percent engraftment (this is the percent of Meredith's cells Steven is producing as his own) will not be back until around the end of next week. The last test they are doing is to look for any trace of the Philadelphia Chromosome ( I hate writing that word) which we are praying strongly that there won't be any trace of it left. There wasn't any right before the transplant so they don't expect to find any now but they test anyway--we are anxiously awaiting these results.
We asked Dr. Grimley about letting Steven get out more since his WBC count is so good. He explained to us that even though his counts are all moving in the right direction, most of the WBC's he is producing are not very functional at fighting infection. It's not until around the 100th day (Sept22) that his immune system will gradually start getting strong enough to fight off germs. With the transplant he lost all the immunizations he had received since infancy so he will need to be reimmunized over the course of a year or so. It still can take upwards of a full year to have a fully functional immune system. He related his immune system right now to that of a two day old baby--but one without though the natural antibodies a baby receives from it's mother. At this point if Steven were to get strep throat or an ear infection they could use antibiotics to fight it, however, if Steven were to catch a cold, flu or pneumonia it could be fatal. That comment from Dr. Grimley really sunk home the importance to Dave and I of not taking Steven anywhere with re circulated air (ie: movies, restaurants, stores, etc...) however outside places without crowds are okay. Hopefully by late September we will get the go ahead to lessen his restrictions. He's already done and is doing SO well--we pray and thank everyone for their prayers that his medical success continues. Dr. Grimley told us also that Steven is "well ahead of the curve"--so Dave and I are going to do our best to help keep him there.
T+46 Friday, July 26--Lisa's note: Boy, how time gets away! With my dad gone and Dave back at work, I don't have nearly the"alone" time (I'd just settle for a minute of uninterrupted time!) I need to concentrate enough to write an update. I asked Dave to do it--which he graciously did, however, it's taken me three days just to cut and paste it on the web site! I guess this all means that our life really is getting back to "normal"!
Dave's update--Since I have gone back to work, there is a direct correlation between percentage of updates written by Lisa and percentage of time spent with our children by Lisa! (lisa's note: this means all!) Our first step towards changing that is having me do the update, and me taking weekend duty with the kids! Basically, she needs a break. I find her updates inspiring and considering how needy our children have been, I am amazed how she finds the time to do it.
Now for the update---our day at the clinic on Tuesday came back with a great report. A couple things to note, Stevens counts look very good and he is now officially 100% Donor (Meredith) Cells!!! This is huge news! This means that all the cells he is producing are healthy new cells. As he produces stronger and stronger cells, his immune system will become better at fighting off infection. Within about a year he will have a fully functioning immune system (could it ever be good enough to fight off the germs from the McDonalds playland?) Fortunately, though his chromosomes are now XX instead of XY, he has not asked to wear any of Merediths and Emmas dresses! Anyway, we were ecstatic to hear that Merediths stem cells have completely taken over Stevens bone marrow. The last test looking for any residual Philadelphia Chromosome will be completed next week.
The other bit of big news is that Steven can now swim in our pool! When Steven found out he could swim, you would have thought he had just won a Lifetime supply of M&Ms candy. This has made a huge difference in his feeling normal. We think that swimming will do wonders for his attitude and physical strength. I believe that swimming played a critical role in his strength and good health prior to his bone marrow transplant. In addition, Dr. Wall has begun to wean him slowly off of cyclosporine. Hopefully, we will be off of cyclosporine in the next few months. This is great news as Steven now locks himself in the bathroom when we tell him that it is time to take his medicine. This drug tastes nasty. It tastes and smells like cod liver oil. (Dont ask me how I know what cod liver oil tastes like, just know that I do!) I cant blame the kid for locking himself in the bathroom; I would too if I had to take this stuff twice a day!! He still occasionally throws it back up and we have to redose but overall he's doing as well as we can expect with it.
Finally, as Steven has begun to ride his bike in the neighborhood and now swim in our pool we feel it is an appropriate time to recognize two very dedicated Teams In Training. The first team includes Noel Basquin, Jon Betts, Stephen Daday, Lynette Dehnke, Laurel Gatti, Aletha Head, Jaime Hiltz, Chris Isdale, Tom Kante, Doug Kasner, Todd Koclanis, Michelle Koclanis, Erik Lebsack, Tiia Maekask, Kelly Michalak, Brian Michels, James Miller, Vicki Nastasowski, and Clay Whipple. These people have adopted Steven as their patient hero and are participating in Mrs. Ts Triathlon, the largest triathlon in the world, which will be held in Chicago on August 25th. They commit an enormous amount of time training and raising money for the Leukemia society. We are so very grateful for each one of you and hope that Steven will inspire you as you prepare for and triumph over this indelible challenge. When Steven gets cleared for travel, we hope that Steven can meet each one of you on our next trip to Chicago.
The second team is from San Antonio and will be training for the El Tour de Tucson Century Ride on November 23, 2002 in Tucson, Arizona. They will have their kick off TNT party this week and will also have Steven as their Patient Hero! GO TNT!!!! They have just begun to train and we look forward to meeting them at one of their meetings in San Antonio. We wish them the best of luck and as Steven works hard to gain strength we know all the TNT members will be doing the same! THANKS!
T+51 Wednesday, July 31--We're halfway through! In most ways this post BMT time period has gone so fast, yet during the wait for test results time seems to just crawl. Our hospital appointment went very well again on Tuesday. Awhile back, a friend gave me good advice about recording doctor visits since you get so much information and its hard to retain and repeat everything correctly. Well I should have listened since we've had a little confusion regarding last weeks test result.
When Dave and I reported that Steven was 100% donor cells last week, that wasn't exactly the case. The 100% donor cells test reflected only his peripheral blood. At this week's appointment we were told although he's 100% donor cells in his peripheral blood system, the results from the bone marrow aspiration show he's 90% donor cells in his bone marrow (where all the stem cells are made.) We were told they did the Bone Marrow aspiration pretty early so that's not uncommon to still see some of his old cells still there. Dr. Wall is going to do another blood test next week to make sure that his peripheral blood is still at 100%donor cells (and not going down.) The results from that test won't be in until next Friday. Some great news though was that the Leukemia test came back negative--whew! That was a huge reflief. I'm not sure when they do another test on that one.
Steven got an "A+" for the week since he looks so good and hasn't had any more than very mild GVH. She reduced his cyclosporin another .1 cc. At this rate if all continues to go well, he could be off all cyclosporins by the end of September.
We are grateful for these weekly appointments and the fact that he is being watched so closely. Every Tuesday I am reminded of how fortunate we are that Steven is doing so well. These Tuesday appointments also seem to bring with them a "re focus" of our blessings, the power of prayer, and not to take anything for granted.
T+57 Tuesday August 6-- Steven has hair! I know it doesn't look like it yet but there really is some growing! He loves rubbing his hand over his head! His eyebrows and eyelashes are also starting to come back. Steven's only complaint is that when his hair grows back he won't look like the basketball players (Dave convinced him that it was "way cool" to be bald since that's what a lot of the professional basketball players look like)! We're happy that it's coming in because to us it reflects yet one more step on the road to recovery!
Today was a wonderful day at the infusion center! I was a little worried about how it would go since Dave is out of town for his first overnight trip in almost six months and with summer drawing to a close--well, let's just say "the natives are getting restless"! I brought all three kids to the Infusion Center for Steven's weekly appointment and I am happy to report that they all behaved wonderfully (with the help of a bribe to the vending machines for candy)!
The best news of all is that the official report came back with the cytogenics of Steven's Bone Marrow. Yes, it get's more confusing by the day! The great news is that Steven is officially 100% donor cells in both his peripheral blood AND his bone marrow. The reason we were told last week that he was only 90% was that the test was a two part test. One tested the DNA of his bone marrow and the other was the cytogenics report of his bone marrow. Last weeks DNA test did not discriminate between old and new cells which is why they found some old Steven cells still there but they were probably non functioning. The results of the Cytogenetics of his bone marrow specifically look at the producing Stem cells to see exactly how many are Meredith's cells. The report stated exactly that Steven is "100% female cells" (When he's a teenager I know he's not going to like hearing that phrase)! I can't express enough how pleased we were to get these final results. All last week it was hard not to worry and Dave and I spent way too much time being "arm chair analyzers" trying to figure out what it all meant. We're glad that's over. Today was a good day! Dr. Grimley checked Steven out and said he's doing great! We are able to reduce his cyclosporin dose down to .9 cc bid for the upcoming week!
I do sometimes long for the days of not "over reacting" to normal childhood sicknesses. This past week Steven started complaining that his ear hurt to which Dave and I became pretty nervous very quickly. We feel so fortunate that his doctors--Dr. Wall and Dr. Grimley are so accessible and wonderful in their care for Steven. Dave took Steven up to the hospital on Sunday morning where Dr. Grimley concluded that yes he did have an infection and started him on antibiotics. We caught it fast and it turned out to be no big deal. And he can still swim since that wasn't the cause of the infection. I just don't like the fact that a common ear infection can cause Dave and my's stomach to turn knots. I'm sure (hopefully) as time goes on and he continues to do well we won't be so nervous when Steven gets a normal cold or something.
Overall it's been a great week and I'm looking forward to a relaxing last two weeks of summer vacation. As you may have noticed I'm now updating just once a week since we don't have much "new" information and for today Steven's post BMT status is, for the most part, blessedly medically dull! We know that could still change on a dime so we just enjoy each good day as it comes. Every day we receive wonderful emails from people all over the country (and overseas) regarding Steven. We feel so incredibly blessed to have had such support and prayers from so many people--we can't thank you enough! We also can't thank enough Steven's wonderful BMT medical team at SW Texas Methodist Children's Hospital. Dr. Wall and Dr. Grimley are very special and incredibly caring people. We thank God for their medical talents for without their expertise and a lot of prayers Steven wouldn't be here today. We sure appreciate everyone's continued prayers for Steven that he may have many more healthy days. (See the picture album for the latest new pics from this week's visit to the Infusion Center!)
T+64 Tuesday, August 12--I didn't change the picture today since although Steven has a little more hair--it's still not enough to really show on the camera yet. Maybe by next week he will look more like a little boy with a short "buzz cut". Kids are so blunt. Today Meredith said "Mom, I think Steven looks freaky with his eyebrows growing back!" I guess we have become so used to seeing Steven with no hair that to us it still seems a little "odd" to see him with eyelashes and eyebrows! It's amazing what you can get used to and how our perspective has changed through this journey.
Another reason I don't have a new picture is that based on Steven's mood at the Infusion Center today--the only picture I could have taken would have been of him hiding under the table, scouring at anyone who looked his direction and throwing a huge crying "fit" when Dr. Grimley was trying to examine him. Steven insisted that Dr. Grimley was going to hurt him with his stethoscope! He's had his heart and lungs checked with a stethoscope probably 300 times in the last six months, and it's obviously never hurt yet but he chose that moment to "lose it" --and it went downhill from there. Luckily, the moms' in the clinic could relate and Dr. Grimley is very understanding and patient. Hey, we're all allowed to have a bad day right? Especially if it's a kid whose just gone through a bone marrow transplant. It was a little surprising to the nurses there since Steven is usually pretty jovial, cooperative and most of the time happy to go to the Infusion Center. He wore himself out so much (and me as well) that he fell asleep within about a minute after getting into the car to go home.
This probably happened because Steven had a bad night sleep last night and woke this morning a little tired and grumpy. As I've mentioned before, he's been having some post hospital sleep issues that haven't subsided as of yet. He has bad dreams and sleeps restlessly quite often. If I had gone through what he has--I'm sure I'd have bad dreams too! Since I slept with Steven in his bed most of the nights in the hospital, he is so used to having me in the room and really needs me there. When I'm trying to put him to bed he clutches on to me afraid I'm going to leave him alone. He also will not let Dave put him to bed unless I'm physically gone from the house. We are going to try maybe one night a week having me leave at night and go to Starbucks for an hour (or more!) so Steven can get comfortable with Dave putting him to bed. Anyway, we're working through these post BMT emotional issues. Were told as Steven gains confidence that he is getting better and starts feeling more normal the emotional issues should get better--but then again he's three! I'll be honest though, it has been nice to see the "spunk" in his personality coming back--even if sometimes it's hard to know what to do about it. I guess the hard part is just distinguishing between Leukemia or BMT related issues and the normal "three year old boy" things!
Anyway, it's nothing major and fortunately Steven had a great report again this week. We are told that the pace he is on in decreasing the anti rejection medication is actually quite fast. So far we've seen no additional side effects with the decrease of .1cc every week. We are now down to .8cc's bid for this next week. With each additional drop in cyclosporin his immune system (Meredith's) will start to come in stronger and stronger. The goal is to get completely off all cyclosporin and within a year have a fully functioning strong immune system. We also know that some kids never get off cyclosporin. The GVH rash or more can occur at any point so we watch him very closely but so far so good.
Day 100 is approaching fast. This very restrictive time has, at times, been hard since Steven's feeling good but yet can't go anywhere. We have learned our lesson when in the recent past we have without thinking said something like "hey, Meredith and Emma--are you ready to go to the movies?" in front of Steven where he understandably gets very upset crying and saying "mommy, I can't do anything!" He is definitely feeling the effect of not being able to do the fun things everyone else seems to get to do. Luckily today we were told he can occasionally go to a few different friends homes' as long as we keep the number of kids limited to a couple and obviously make sure no one has been or is sick. I'm sure this will make a world of difference in helping him to feel more "normal". With the girls starting school next week that should make things easier as well. We know the more we restrict his activities the better chance he has at staying infection free so we are still doing everything we can to control his environment. As Dr. Grimley said today "let this summer be just a blur in his memory" and when he has a strong immune system next summer he can make up for it in fun. For now, however, it's best just to take it one day at a time and thank God for Steven's healthy days. So for today and this week we ask for prayers that Steven has continued GVH rash free days--and better nights' sleep!
T+72 Wednesday, August 21--Back to school! As all of us with school age children know--back to school time brings with it a wonderful sense of newness and fresh beginnings. For our family this summer seemed to pass so quickly since so much of time was spent in the hospital for Steven's bone marrow transplant. On Monday night, the night before school started, Meredith and Emma were saying how fast they felt the summer went. I told them that usually when you're doing something you enjoy--the time seems to fly by. They said "boy, then we must of had a really good time this summer since it went by so fast". With all the physical and emotional strains placed on our family recently, it made me feel so good to hear them say for them it was a great summer. It's great how when reflecting back, kids tend to remember only the good things!
Steven's hair is coming in so dark and handsome! I promise at some point you will notice it on a picture, but believe me, he now has some beautiful looking eyebrows and his long eyelashes are also coming back in! He gets so excited to tell people "I getting better--my hair's coming back!" Every day we can tell he's feeling more and more "normal".
Today's visit to the Infusion center went so much better than last week! He was back to his happy-go-lucky self!. Once again he has progressed nicely during his "fast track" (their words) decent on his cyclosporin. So far no additional GVH. He's down to .7 cc's bid. He did get another ear infection, this time in his other ear. He has a tube (tubes put in at 8months old) still in that ear so it's now draining. They started him on another antibiotic and we are going to keep him out of the pool just to be sure. He's been in a very good mood as of late and has adjusted very well to the girls going back to school.
I wanted to write a little bit about a wonderful event coming up. The Leukemia and Lymphoma Society is having it's Annual Light the Night Walk to help raise funds for Leukemia research. Thanks to current research 8 out of 10 kids with the most common form of leukemia will survive. But 2 won't. We thank God and all the wonderful people who have helped fund Leukemia research so that Steven, with his very rare form of Leukemia, still had a chance by having the Bone Marrow Transplant. He's doing great and Dave and I are committed to getting involved with the LLS to help the thousands of other kids diagnosed with Leukemia every year. On January 29th of this year, our family's life forever changed and our experience has opened our eyes to the needs of so many children going through such a horrible disease.
My good friend, Sue Wysong, has started "Steven's Team" to walk together on San Antonio's Leukemia and Lymphoma's Light the Night non-competitive walk taking place Saturday, October 19th. For those of you not familiar with it, it is a unique evening walk that is held to celebrate and commemorate lives touched by blood related cancers. Participants who raise $25 or more carry illuminated red balloons through downtown San Antonio. Cancer survivors and patients carry white balloons, signifying their courage in battling these dreaded diseases. We will be walking approximately 2 1/2 miles and will end up in front of Christus Santa Rosa Hospital where all the children on the cancer floor will be looking out their 8th floor window to see the 500-1000 illuminated balloons! Every time I think of this my eyes tear up, in part because Dave and I never thought we'd have a child diagnosed with Leukemia, but also because we are so incredibly grateful that Steven is still here and able to carry the cancer survivorship white balloon. I also think of how I'd feel that night if I were the parent with a child on Santa Rosa's cancer floor looking out over all those lit up balloons signifying so many people wanting to help and make a difference.
The Light the Night walk is a family event where kids can be pulled in wagons or strollers (no bikes or rollerblades allowed.) Both my girls' Brownie troops are going to do it as their service project. Sue's goal is to raise $5000. She is asking each Team Member on "Steven's team" to raise or donate at least $25 which will provide them with an illuminated balloon. People who raise or donate more will receive, depending on level, tee shirts, sweatshirts, duffel bags, etc. Dave, Meredith, Emma, Steven, and I plan to do this event as a family (assuming Steven is still doing well enough to participate). If you would like to participate and be a part of "Steven's Team" please either email me at LTrapp@satx.rr.com or call and I will get you the needed registration form. It costs nothing to register. You can also sign up online at www.lightthenight.org On the registration form you need the Team Name which is "Steven's Team" with Sue Wysong as the Team Captain. Thank you so much Sue for leading the team!!!
To our friends who read this website from other cities--please check with your local LLS chapter online. It will tell you if there is a walk in your city. The Light the Night walk takes place in over 200 cities nationwide, so there's likely to be one near you. My brother, Tony, has started a team with Steven as their patient hero for the Light the Night walk this fall in the Chicago area. Thanks Tony!
Because of Leukemia research, new medicines are developed and people are cured! Your help and participation will truly make a difference!
T+79 Wednesday, August 28--Now you can see that Steven does have some hair!!! We call it his short "buzz" head. You can even see his full eyebrows. It's so funny that he is already asking when he can go get a hair cut--obviously that won't be for awhile!
I (Dave) had the opportunity to take Steven to the clinic on Tuesday and everything checked out great! Steven was giving "high five's" to Dr. Wall and running around the infusion center as if it were Chuckie Cheese's. Fortunately his ear looks normal. The best news of all is that Steven has gone down to once every two week visits to the Infusion Center and has dropped to .6 cc bid cyclosporin! This is a good day--it means medically Steven is doing very well. We are so grateful for the progress he has made.
We continue to believe Steven has beaten this thing and look forward to giving back and serving our community and church to a greater extent when Steven's condition allows us to. We are realistic in the fact that he still faces many risks associated with Leukemia, however, we are choosing to move forward in faith. I remember a couple of nights before Steven's transplant praying not specifically for his healing because I believed in my heart that God had given us signs that this tough little guy was going to beat it. Instead, I prayed to God to make a statement with Steven's life and to accelerate his recovery so that we could move on to a new phase involving serving the Leukemia community and our church. Well, we believe God has truly made a statement. For example, since his transplant Steven has only needed one platelet transfusion, has had very minimal Graft versus Host disease, and has, so far, avoided any need for additional hospitalization. His strength is almost back to normal, he is gaining weight, and minus a day here or there where he's more tired, he is running around like any other normal three year old. So far the biggest challenge post transplant has been more in the area of activity restrictions and getting him back in a normal sleep pattern. All in all his recovery has been truly miraculous. Though the last seven months haven't been easy we know God has been walking us through every step of the way. We are SO grateful for everyone's prayers and we thank God for putting so many special people into our life who have helped our family in many different ways throughout this journey. As we approach "Day 100" we ask for prayers that Steven continues progress in rebuilding a strong immune system, that his new strong cells kill off any potentially remaining bad cells, and that he continues to move positively toward full health.
As for community service, last week we had the opportunity to see one of our new friends, Pam Landwirth, President of Give Kids the World. She was in Austin raising money with a local radio station (107.7 FM) to send two Texas families to GKTW through the Make A Wish foundation. Steven was SO excited to see her again and it was great for our family to reconnect with her and GKTW. Steven, Meredith, and Emma all were able to talk on the air and tell about their favorite places at GKTW. It brought back some wonderful memories from our Make A Wish trip. The DJ then asked Steven if he wanted to sing a song to which he immediately replied "I want to sing--God the Father" (this is the blessing song we sing at dinner every night). He was so confident and happy! Meredith followed his song with her own singing of God Bless America. And Emma got to tell everyone how she loved the all day ice cream parlor at GKTW! It really was a neat opportunity to help promote this great organization.
Also, on Tuesday, Lisa attended the Leukemia and Lymphoma Society's kickoff luncheon for the upcoming Light the Night walk. It was a great luncheon and "Steven's Team" already has received many donations and commitments from families that will be walking in downtown San Antonio on October 19th on behalf of Steven and all the other children who have battled, are battling, or have yet to be diagnosed with Leukemia. Thank you for the tremendous outpouring of support.
May God continue to bless you and may you strive to make every day a great day.
T+87 Friday, September 6-- It's so nice to be in the T+80's!!! I can't believe we are getting so close to the 100th day! I've had a lot of people ask what happens when we reach day 100-- if all of a sudden a bunch of bells, whistles and fireworks go off! Unfortunately it's not quite that dramatic but for us it means we should be able to start saying "Steven you are all better". He needs to hear those words. Right now Steven's pat line for everything is "When I get better can I......." and he add whatever it is that he wants to do ie: go to Chuckie Cheese's, play in the sand box, etc... We need to be able to put some closure to the "sick" phase and start telling him (and his sisters') that he's well again. Granted we can't conclusively say he's cured for five years (or more) however, he needs to know he's normal. We've obviously been hesitant to tell him he's "all better" since he still has to take that nasty cyclosporin twice a day, he is very restricted on activities, and we know that almost any minor thing could land him back in the hospital. Fortunately though, after 87 days, his recovery has been great.
In reality, the 100th day just means that the risks of acute problems begin to diminish. At that time Dr. Wall will do a test to determine the strength of Steven's new immune system. This will tell us how stringent we still need to be with activity restrictions (still no preschool until next year). They will also do a PH+ test that will test down to one million cells looking for any Philadelphia chromosome left in his body. We ask for prayers that there won't be any.
As you can see from the picture, he's a very happy little boy! He loves to paint himself with sidewalk chaulk and then wash it off! He is down to taking only .5cc bid of cyclosporin. With these low doses of anti rejection medication, Steven has developed more Graft vs. host disease in the form of skin rash. It seems to be much stronger in the mornings and is red, bumpy and very itchy. Luckily, Benadryl usually helps the itching. Typically the redness goes away by the end of the day, however, the bumps have remained so he right now he has what's like "baby acne" over his chest, back, neck and face. We've had to watch closely for any stomach aches since GVH can go there as well but fortunately in the last ten days he's only had a few minor problems. As far as his mood goes, he has been very happy, energetic, and playful. It is such a joy to see him wrestling with daddy, running up the stairs (when he was diagnosed with Leukemia, he couldn't even climb two steps without sitting to rest), playing with a few friends, riding his bike and overall doing most of the things normal three year olds do.
In reality, the 100th day just means that the risks of acute problems begin to diminish. At that time Dr. Wall will do a test to determine the strength of Steven's new immune system. This will tell us how stringent we still need to be with activity restrictions (still no preschool until next year). They will also do a PH+ test that will test down to one million cells looking for any Philadelphia chromosome left in his body. We ask for prayers that there won't be any.
As you can see from the picture, he's a very happy little boy! He loves to paint himself with sidewalk chaulk and then wash it off! He is down to taking only .5cc bid of cyclosporin. With these low doses of anti rejection medication, Steven has developed more Graft vs. host disease in the form of skin rash. It seems to be much stronger in the mornings and is red, bumpy and very itchy. Luckily, Benadryl usually helps the itching. Typically the redness goes away by the end of the day, however, the bumps have remained so he right now he has what's like "baby acne" over his chest, back, neck and face. We've had to watch closely for any stomach aches since GVH can go there as well but fortunately in the last ten days he's only had a few minor problems. As far as his mood goes, he has been very happy, energetic, and playful. It is such a joy to see him wrestling with daddy, running up the stairs (when he was diagnosed with Leukemia, he couldn't even climb two steps without sitting to rest), playing with a few friends, riding his bike and overall doing most of the things normal three year olds do.
We go back to the hospital infusion center on Tuesday to have blood work done. Barring any problems, he is down to bi monthly visits. For now we are just enjoying the new fall routine. As I've said before--I make it a point to notice the little blessings in each day. Today's is that Steven has enough hair now that we use real shampoo to wash it! After five months of a bald head--he get's so excited to really scrub his hair! It's a simple blessing but a very nice one!
Thanks again for all your prayers! And thank you to everyone who has signed up for the Leukemia and Lymphoma Society's Light the Night walk October 19th. "Steven's Team" is growing daily! Thank you also to the people who can't be at the walk but have sent donations--every bit helps. Steven is starting to see the tee shirt and advertising "stuff" around. He get's so excited saying "I get to go to that balloon party too!" Thank you! Dave and I, and the Leukemia and Lymphoma Society, sure appreciate your support in helping fight this nasty disease.
The Hundredth Day!
We have reached our first major milestone in Stevens healing post transplant. It is this dayDay +100 that the risk of severe graft versus host disease begins to diminish. The second milestone is upon reaching the five year mark when we can officially declare Steven healed from Leukemia. This is one more day in the journey of his healing. Throughout it all there have been many moments when Dave and I thought wed never get over that huge mountain. Here Steven is now at day +100 post transplant and doing great! Once again the flood of emotions is overwhelming. As Dave has writtenwe have experienced some very special miracles, each one having been life changing for our family.
Steven continues to do very well.
Over the last couple of weeks, however, he has experienced a marked increase
in his Graft versus Host disease body rash. At
his last hospital visit, Dr. Wall checked him over and determined that although some GVH
rash is good (it has an anti leukemic effect), a bad rash over a long period of time could
lead to major problems. Her comment was that
it was like poking sticks in a tigers cage
meaning it could come back to bite us with serious GVH going to
Stevens liver or stomach. She increased
his cyclosporin dosage back up to .7 cc bid and gave him some steroid cream. They even took pictures of his rash for a medical
presentation and for some study on classic GVH rashes.
Fortunately over the last week the rash has diminished and we were able to
decrease .1 cc down to .6 so hopefully he is back on track.
Steven continues to do very well. Over the last couple of weeks, however, he has experienced a marked increase in his Graft versus Host disease body rash. At his last hospital visit, Dr. Wall checked him over and determined that although some GVH rash is good (it has an anti leukemic effect), a bad rash over a long period of time could lead to major problems. Her comment was that it was like poking sticks in a tigers cage meaning it could come back to bite us with serious GVH going to Stevens liver or stomach. She increased his cyclosporin dosage back up to .7 cc bid and gave him some steroid cream. They even took pictures of his rash for a medical presentation and for some study on classic GVH rashes. Fortunately over the last week the rash has diminished and we were able to decrease .1 cc down to .6 so hopefully he is back on track.
Next Tuesday at his Day +100 check up they will be doing two big tests. The first will be an immune function test testing the strength of his new immune system. The other will be a big one testing down to one million cells looking for any remaining Ph+ Leukemia cells. Once again we would appreciate prayers asking for Stevens blood to be free of any bad cells. It will take approximately two weeks to get the results. The worry never goes away but Dave and I are learning that we have to give our worries to God. We know God has been present throughout this journey and we have faith that Steven will have a full recovery.
On this day, Dave and I wanted to make sure we talked about
something very important to usthanking all the wonderful people who have helped us
in so many ways. Weve tried to tell
people thank you as we see them, however, we want to use this update to let everyone know
how much you have made an impact on our familys life.
Over the last eight months, the support has been and continues to be
amazing. It would be impossible to list
everyones names and things that have been done to help. I'd like to share a few examples of the many
special ways people have helped. First, we had so many wonderful meals during the
time when it was too hard to cook. I know it
took a lot of planning on so many peoples part to bring us those meals. There have been many, many cards, special gifts for
Steven and the girls, immeasurable amounts of prayers, offers of babysitting, friends
doing special things with Meredith and Emma so they wouldnt feel left out, family
coming to visit and help, lots of phone calls, encouraging emails, and many visits to the
hospital. Our friends, family and people we
don't even know have helped us through every phase and weve been blessed to make
many new friends along the way.
On this day, Dave and I wanted to make sure we talked about something very important to usthanking all the wonderful people who have helped us in so many ways. Weve tried to tell people thank you as we see them, however, we want to use this update to let everyone know how much you have made an impact on our familys life. Over the last eight months, the support has been and continues to be amazing. It would be impossible to list everyones names and things that have been done to help. I'd like to share a few examples of the many special ways people have helped. First, we had so many wonderful meals during the time when it was too hard to cook. I know it took a lot of planning on so many peoples part to bring us those meals. There have been many, many cards, special gifts for Steven and the girls, immeasurable amounts of prayers, offers of babysitting, friends doing special things with Meredith and Emma so they wouldnt feel left out, family coming to visit and help, lots of phone calls, encouraging emails, and many visits to the hospital. Our friends, family and people we don't even know have helped us through every phase and weve been blessed to make many new friends along the way.
Our church has been there too in such wonderful ways. The special needs ministry prepared a special
private play room and took care of Steven so our family could attend church. We had many clergy calls and visits while at the
hospital as well as receiving lots of cards and offers of help from the wonderful people
on the Children's Ministry Team. We have
received a prayer card from a woman from UUMCs Care and Concern ministry almost
every week for the past six monthswe dont even personally know this woman yet
she has taken the time to write every single week. To
us that is amazing and very humblingGod is good.
There were friends who went into Chuckie Cheeses to clean all the games so Steven could go play before being admitted for transplant. During Stevens stay in the hospital and after, a wonderful retired couple from down the street frequently brought us fresh cut flowers to help brighten our day. One very special friend made a great schedule for hospital visitors during our restrictive BMT hospital stay as well as also spending a couple hospital nights with Steven allowing Dave and I a much needed break. Another friend took all our pictures from our Make-A-Wish trip and made a wonderful memory album. Steven's preschool teachers have continued to be so special in his life--he goes to one teacher's house every week for a few fun hours of "school" (he loves this day)! Over the last several months, we have had a good friend helping organize and keep track of the mounds of medical bills that continue to pour in. These are just a few examples. So many people have taken time from their busy lives to extend their help in both physical and emotional ways. During this continuing journey God seems to always put just the right person there at the times when we need it the most. We cant even begin to express in an update what all this has meant to Dave and I but please know that we thank God for each and every one of you. We look forward to giving back in service and prayer to our old and new friends who may go through a tough time in the future.
As we reach Day 100 we continue to just focus on
the many blessings we've seen and live life one day at a time. We are so thankful that Steven has done so well so
far and we thank God for all of you who have supported us in so many ways. When I get ready in the morning I usually listen to
a CD from the group
As we reach Day 100 we continue to just focus on
the many blessings we've seen and live life one day at a time. We are so thankful that Steven has done so well so
far and we thank God for all of you who have supported us in so many ways. When I get ready in the morning I usually listen to
a CD from the group
May the Lord Bless and keep you,
May the Lord Bless and keep you,
May His face shine upon you, and be gracious
and give you peace.
Wednesday, October 9--
First things first---the two big tests both came back great!!! As of today there is zero presence of the Philadelphia Chromosome in Steven's body (meaning no Leukemia cells are to be found)!!! They tested all the way down to 1 million cells so these results are very positive! This specific test will be repeated every three months. With Leukemia, if a child is going to relapse it usually is within the first year but can be all the way until the fifth year. He has to go through this test every three months for the first year and then annually until he's eight years old.
The second test, his immune function test, also came back "average to above average" for day plus 118. He has an immune funtion of 10,000 which is about 25% of what a normal child would have. It sounds low but for only being post 118 days out of transplant, Dr. Wall and Dr. Grimley consider these results very good! He can continue in his gymnastics class (which he LOVES!) and he can go into a regular sunday school class. Since we are approaching the "sick" season of winter (is there such thing as winter in San Antonio??) Dave and I must continue to be more stringent with who he's around and watching for kids with colds, stuffy noses, etc. since a cold for Steven could easily turn into something worse. Once again no preschool until next year. We were told all our family (except Steven) has to get flu shots--as you can imagine, Meredith and Emma are not very happy about that! Steven's doctors believe that within a year Steven will have a fully functioning immune system. The goal is to get him off all immunosuppressant drugs. He is going "down" to .5 cc bid cyclosporin this week. His body has adjusted to .6 pretty well so we're dosing down and watching for any increase in rash, stomach aches, etc. but so far so good! Also, he is now down to once a month visits to the hospital infusion center! That is so exciting for him. I on the other hand, have mixed emotions about only going once a month since he's been watched so closely for soooo long and those visits are very emotionally reassuring. Fortunately now Steven and I will have more Tuesdays' to plan fun outings with friends!
The best news in the last two weeks is that Steven finally was able to go to Six Flags' Fiesta Texas! Every night in his prayers he always end them by saying "and thank you God that I go to Fiesta Texas when I'm all better!" In fact, upon being released from the hospital the first thing he asked to do was drive by Fiesta Texas so he could watch the roller coasters! We've done that many times over the last several months. Well, this past weekend he was finally able to go in and ride the rides! To say he was excited is putting it mildly! He kept repeating "I'm all better! I'm all better!" It was neat to see him so excited and enjoying himself so much.
We also did another special thing past week. Meredith, Emma and Steven put on a Lemonade and Brownie stand with all proceeds going to the Leukemia and Lymphoma Society's Light the Night Walk. They had so much fun doing it (even in 95 degree weather)! Steven and Emma were quite the "salespeople" waving their arms and yelling to cars to "please stop!" Every time a car came by Steven would say "look mommy--another customer!" Meredith was so responsible handling all the money. In total, the kids raised $420 to donate to the Leukemia society! (The picture up top is of Steven making the brownies they gave people with their donation.)
In Chicago, my brother Tony put together a Light the Night walk team for their Leukemia and Lymphoma Society's Walk two weekends ago. He said it was a lot of fun! It took place in downtown Chicago and they had lots of music, sponsors (ie: Hostess handing out Twinkies and Krispy Kreme donuts), and over 6,000 walkers with a total raised of $500,000! Tony's team had approximately 35 walkers and raised over $3,000 in donations to the Leukemia Society. Thanks Tony for all your hard work and thank you to all the Chicago walkers!!!!
Overall, things are going very well. Steven out of the blue will say "I can do this--I all better now!" He is so excited for the upcoming "balloon party" as he calls it. He get's excited over being able to do even the littlest things. Steven really seems to walk around a little "taller"-- we can really tell he's starting to feel very good. I'll update again after the Light the Night walk here in San Antonio!
This is a picture of Steven holding the Cancer Survivor's White balloon. I can't even begin to tell you how wonderful it felt to see Steven and all the other children and adults carrying those white balloons! The Light the Night walk was so incredibly special. It was a "sea" of mostly red (supporter) and many white (survivor) balloons all lighting a beautiful evening San Antonio sky! The weather had been raining and cloudy all day and then by late afternoon a little miracle happened and all the clouds dissipated!
Steven's Team Captain--Sue Wysong did an amazing job of organizing what turned out to be the largest single team at the walk! We had over 138 people walking! And better yet "Steven's Team" raised over $10,000 all going towards Leukemia and Lymphoma research (this dollar amount is not even the final number--we still have donations being made even now!) Dave and I would like to say a huge THANK YOU to everyone who donated and those who came out for the walk--your help is so very much appreciated!!!! Overall the city of San Antonio had over 1000 walkers and raised over $150,000 (not yet final numbers)! It was a great night.
To me, one of the neatest things about this event was to see so many people get involved in so many wonderful ways. For example, there were at least five Girl Scout troops that did this event as a service project. The girls could really "connect" with it since many of them knew Steven, Meredith or Emma. They held bake sales, sold Krispy Creme cards and did individual fundraising. Meredith and Emma really worked hard to earn their donation money. By doing that I know they truly felt they had made their own contribution. Thank you Brownie leaders-- Alice, Sue, Karin, Pily, and Lee--we couldn't have raised so much money without you. Another very special group was one of the corporate sponsors--World Karate. They are a very special group of people. David Brown even lead the pre-start warm up for all the LTN walkers! I know there were so many more people that did fundraising at their place of work, neighborhood, and at church. THANK YOU!!!
To say the least, for Dave and I it was a very "moving" and emotional evening. To see so many of our friends and people we didn't even know come out to walk meant so much to our family. And to know that so many other people who couldn't make the walk but sent donations reflects yet again all the many blessings that can come out of tough times. With so many "medical" events in our recent ten month Leukemia journey--it was so nice to go to a very upbeat, fun, and rewarding event that celebrates life!
As far as Steven goes--he thought it was the best "balloon party" in the world!!! He loved the free popcorn, Gatorade, and ice cream!! Steven loved having Grandpa Charlie (he flew down for a visit!) push him in the jogging stroller! Steven played in the park, watched all the balloons, talked with sooo many people and all in all really enjoyed himself (except of course all the picture taking--after about the 20th picture he said "no more!") It was so nice to have Dave's sister and family come in from Killeen, TX to be there too. Meredith and Emma had so many of their friends and also their cousins there that for them it was a big party. We definitely plan to make this an annual event.
Steven continues to do great medically. He is down to .4 cc cyclosporin bid. He's handling that amount very well with minimal GVH. He's even better at taking that nasty medicine twice a day. He pretends that he's a space ship saying "one, two, three --blast off!" and we squirt the syringe in his mouth. He gags but at least now it stays down. All his hair is back and his strength and energy continue to amaze us! So far so good! His immune system is definitely being tested as the flu has, over the last week, hit Dave, me, and now Emma. Fortunately it's been a pretty mild case. We have been very diligent about keeping Steven away from whoever has it and being extra stringent on handwashing, drinking cups etc... He's holding tough and staying healthy. He goes back to the infusion center on Nov. 5th for blood work and a check up.
Steven turns four this Saturday! He is so excited to have his first "real" party at his favorite place--Chuck E Cheese. Meredith and Emma really wanted him to have his first ever "friends" party so we booked it when it would be the least crowded and invited a few little buddies. In more ways than we can count, this is going to be a very special birthday.
Lisa, Dave, Meredith, Emma and Steven
Steven's four now! His favorite line is "hey, I need to tell you something...." to which he fills in with "did you know I'm four now?"
This is a picture of Steven and Meredith at his Chuckie Cheese party (Emma was busy playing "singing diva" with the blue screen TV when this pic was taken.) What I really noticed this time being at Chuckie Cheese was the amount of energy Steven had compared to the last time we went. He really is what we would consider back to "normal" again. Even his scar from that nasty staff infection on his face is starting to fade. He is still quite pale but we've been told it's probably a combination of his new skin tone (your platelets determine your skin tone and now he has Meredith's platelets as his own so his skin tone will gradually change) and the fact that he hasn't spent much time in the sun over the last nine months.
We are now at a record low of cyclosporin dosing. He's down to .2cc bid and is tolerating it very well. If all continues to go well he could be off all cyclosporin in about a month. What a nice day that will be. Everytime I think of how he's come from being on a high of approximately 17 medications per day while in the hospital to now only taking .2 cc anti-rejection twice a day --it is such a good feeling. He will, however, be on one medicine twice a week for another full year to help protect him against pneumonia. We feel so truly blessed. Steven will go back to the hospital for another round of testing on Dec 3rd. One test examines the strength of his immune system and the other looks to make sure his body is still free of Leukemia. He has these tests every three months for the first year.
One of the best things that has happened over this last month is that we've been able to go back to church as a family and Steven can now go to his regular Sunday School class. He loves it there. He literally does this little dance "jig" when we tell him we're going to church! Going back to church for Dave and I has been especially emotional since we so fully realize how we could be in a much different situation. We so appreciate the simple joy of getting to go to church as a family--I don't ever want to lose this feeling. I remember when we went to church as a family on the day Steven was being admitted to the hospital for his bone marrow transplant. As you can imagine Dave and I had so many concerns, worries and fears as we sat in church that day. And now, six months later, to be sitting together and having faith that we're over that big mountain, makes us feel so blessed and so thankful to God to be where we are.
Getting back to "normal" has brought with it it's own adjustment's, however, we're working hard to keep our pace on the "slow track" and keep appreciating the little things. Dave and I have SO much to be thankful for on this upcoming Thanksgiving holiday. We get to travel for the first time in almost a year. We're driving to Tulsa to visit my brother's family. My mom, dad, sister Sue and brother Tony and their family's will be traveling down from Chicago to be there also. In years past, the thought of driving nine hours with three kids would have definitely added some stress, however, now we're so grateful just to be able to go that it's amazing how perspective changes. (having a TV in the car also helps!)
As you've noticed, I'm updating only once a month now. I will update again after we receive the results of Steven's tests. We hope you have a wonderful Thanksgiving holiday and please know how thankful Dave and I are for your support, concern, and prayers during this life changing year.
HAPPY THANKSGIVING and God Bless
Tuesday, December 17, 2002--Some
Today was Steven's first day off cyclosporin. After having to take that incredibly nasty oil based medicine twice a day for six straight months, he was so glad to have a day off. Through it all he has been quite the trooper--it truly is amazing. We celebrated as a family by each one of us taking a "taste" of his anti rejection med! We had to bribe the girls with money for them to take a lick. Steven was the cheerleader saying "you can do it, you can do it". After both girls did it, Steven told them "I'm so proud of you!" It was hysterical. Steven had a blast watching us all gag as we tasted it.
Having told you that little celebration story, it makes it even harder to write about the test report news we received today. The six month blood work came back showing positive for Leukemia cells. To say the least, this has been extremely difficult for us to hear. The big--"however"-- is that these tests are ultra sensitive and have sometimes shown "false positives". We ask for prayers that Steven's test ends up being one of those false positives. All the other aspects of the testing came back great. His immune system is coming in good and he is still 100% donor (Meredith) cells. That is very good news. Because of the results coming back with a positive for Leukemia, they need to do more extensive testing. That involves another Bone Marrow Aspiration and spinal tap as well as a repeat of this same test. Steven will be going in on Monday morning for these procedures. I know it will be a hard day for him since it's been almost seven months since his last bone marrow test and they will have to "poke" him and give him anesthesia. As usual this sensitive testing takes time and we will not know the results for at least another one to three weeks. As our doctor says, yes, this could be very bad, however, we have several options, new medications and the chance that this is all just a false positive reading.
Since receiving the information this morning, we have alternated between shock, calm, confidence and fear-- pretty much all day long. Then the girls came home from school and all had to be "normal." Because we just had this great family celebration the night before, Dave and I really struggled with what to tell the girls. We chose to tell them that the tests Steven recently had came back with some "strange" results and the doctors need to do a few more tests this Monday. It is important for us not to create angst and worry in our children yet we wanted to be honest and let them know some details as they have I'm sure sensed some tension in Dave's and my mood. Steven knows nothing and because he is used to going to the hospital for various tests, we plan to make Monday morning as routine as possible.
In the meantime, it is "play as usual" around our household. The kids are excited about celebrating Christmas, we're going to school programs and driving around looking at Christmas lights. Steven is noticibly strong and having a blast playing outside and riding his bike in this beautiful weather.
Waiting is always hard, however, how we spend today is what really counts. Yes, this is very scary yet we're trying to just focus on the fact that it could all turn out to be what Dr. Wall call's an "NBD"--no big deal. We will let you know as soon as we hear anything. Thank you for keeping Steven in your prayers during this uncertain time.
Lisa, Dave, Meredith, Emma and Steven
December 23, 2002
I feel compelled to write this update because it seems there is this somber haze pervading in our landscape of friends and family. This is certainly predictable and understandable given the news we received last Tuesday. Fortunately, our children have no idea of the angst, worry, and vulnerability that we have experienced this past week. As I became consumed by these emotions throughout the week, I realized how paralyzed and ineffective I was living life. In fact, Jesus is quite clear on how much time we should spend on these emotions "who of you by worrying can add a single hour to his life?" Luke 12:25.
How have we been this week? Better after prayer and reflection. Throughout this whole ordeal, every time I have gone to God in prayer I get what I need. As my great friend Tony Anno said, "The great thing about God is that you get what you need when you need it, all you have to do is ask!"
So Tuesday I was in a melancholy state of mind, totally vulnerable, and unconfident. I prayed for guidance on how to lead our family through this. I prayed for hope, faith, and confidence. Two scriptures that jumped out at me were: Hebrews: 3:14 We have come to share in Christ if we hold firmly till the end the confidence we had at first. and Hebrews 4:16 Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
Lisa and I have never been na´ve of the risks associated with a bone marrow transplant and his form of leukemia, but we have always had great faith and confidence that he will be a cancer survivor. Though this preliminary test has challenged us, there is no definitive news that we can glean from this test. Until we are proven otherwise, we remain steadfast in our faith that Steven will be just fine. We also know that God never promises any of us tomorrow on this earth, only today.
Thanks for your prayers and we hope you have a blessed
Thanks for your prayers and we hope you have a blessed Christmas!
Monday, January 13, 2003
We received the news that Steven's recent test results have come back "inconclusive". This can mean a variety of things. After a discussion with Dr. Wall, the plan now is for Steven to start on GLEEVEC cancer therapy medication as a precautionary measure in case something is there. We have a meeting with Dr. Wall scheduled for next Thursday to discuss all the details and the never ending "what if's". Steven will have baseline bloodwork done and will start the GLEEVEC next Friday. Luckily, it is a pill form that we can crush and mix with apple juice. We have been told that the side effects are low--some nausea and possibly some puffiness in his face from fluid retention. GLEEVAC is not an immunocompromising drug so Steven's counts won't go down and he can continue to do what he is able to do now! The plan is for him to be on GLEEVAC daily for six months. I know they will repeat the BCR-ABL test (this test looks for the presence of the Philadelphia Chromosome) during that time but I'm not sure when.
Steven is definitely still 100% donor cells and all XX chromosome. These two markers are so very important--and they look great. His energy continues to amaze us! Tomorrow marks the beginning of year two of this journey. We don't know what tomorrow may bring, however, I feel more clearly than ever, living for today is the only thing that matters. Whenever I look back, there's so many emotions and looking forward also brings so many emotions so the only real choice is to truly "live" for today--and I'm quite certain that's how God intended it to be.
Thanks again for all your wonderful emails, calls, support and prayers. We will update after our meeting with Dr. Wall next week. Have a great day!
February 9, 2003
We had a very good conversation with Meredith and Emma tonight when we told them that Steven has to start some more medicine again. At first they were worried that he was sick again but soon understood the reason why. Emma and Meredith really are such very caring sisters. Emma made the comment "Boy, I wish God never made any sicknesses at all." I told her that if no one ever got sick we would never know the happiness that comes when we get better.
Steven feels not only better--he feels great and this is just another step to ensure that the "all better" continues! Thanks again for your continued prayers.
Lisa, Dave, Meredith, Emma and Steven Trapp
Thursday, February 26, 2003
Here's a picture of Steven the Power Ranger! He is showing everyone his strong muscles (notice that Power Rangers must always have a sippy cup of milk to keep them going strong!)
Steven is now on his third week of taking Gleevec. The first day did not go well at all (he threw it up immediately) and then tried to just swallow the pill but instead chewed it and it broke apart in his mouth which wasn't a good scene either. Dave came to the rescue with a great idea of teaching Steven to swallow these adult capsules whole using Jello--and it worked!!! First we taught Steven to swallow a spoonfull of Jello without chewing it. After doing that successfully a few times we then put one Gleevec capsule inside a spoonful of Jello and told him to swallow without chewing. He did it on his first try! He was so very proud of himself--he even emailed Dr. Wall to tell her what a big boy he is now that he can swallow pills whole! Meredith and Emma of course then wanted to try --it became quite the big family event! To this day he is swallowing the pills beautifully!
Today we had our first follow up appointment at the hospital's infusion center to test Steven's blood and to check his counts. With three weeks into Gleevec we really haven't noticed any substantial side effects at all. He has a lot of energy and has had no swelling. Gleevec is an accumulating drug, however, so as time goes on he could develop more side effects but so far it's gone very smoothly.
Today's results showed a drop in his platelet count, however, nothing to be concerned about yet. They expect that his blood counts will drop but then hopefully over the course of a month or so level out. Gleevec can affect liver function so we pump a lot of fluids into him and fortunately his liver function result came back normal. We sure appreciate "normal" test results. Because there aren't studies involving the use of Gleevec in children yet, we really don't have data to give us specific information as to what to expect from this drug the longer he's on it. That part is a little scary, however, we realize everything is a risk and this is the best course of action to take. Fortunately he's handling it very well so far.
This afternoon Steven started running fever of 100.0 which has us a little concerned but the doctors' don't really worry until it reaches over 101.0 so were just watching him and waiting until tomorrow. He had good energy today and was very talkative with all the nurses and Dr. Grimley so hopefully it's just a passing thing.
Overall we've been doing some pretty "normal" things like going to a San Antonio Rampage hockey game, selling girl scout cookies with the girls, and going to the San Antonio Stock Show and Rodeo three times!! As we all were sitting on a picnic table at the rodeo enjoying eating corn dogs, caramel apples and lemonade Meredith commented "You know what the best part of today is?" to which she then replied "that we can all go places together as a family again." It was a very nice day.
Our next appointment is in two weeks--I'll update more as we get results. Thanks again for your continued prayers, concern, and caring.
Lisa, Dave, Meredith, Emma and Steven Trapp
Friday, March 14, 2003
Steven had his two week testing yesterday and we are happy to report that all the test results look good! His liver function is normal and his platelet count has actually gone back up so he really is tolerating the Gleevec beautifully. The fever he had at the last visit ended up just being a virus of some sort that his body was able to fight off fine. Dr. Wall said that Steven's immune function is high enough now that he can fight off colds and most virus' like any other four year old would. So far the Gleevec hasn't affected his immune funtion and it's not an immunocompromising drug so hopefully the numbers will continue to stay strong.
Dr. Wall said Steven looks great and she is very impressed with how well he takes the pills! He's now been on Gleevec approximately one month with five more months to go. As we've been told, Gleevec is an accumulating drug so as he's on it longer he could start to show more side effects. Fortunately so far he is doing very well. Dr. Wall asked if our family is feeling more "back to normal" yet. It was so nice to sincerely answer "yes". Though that's not to say that Dave and I haven't continued to think about and "micro manage" Steven's looks and actions, however, we're getting pretty good at shelving worries and just focusing on the good days at hand.
Speaking of good days--it's the beginning of Spring Break week for the girls and we are taking our first "real" vacation (besides Steven's Make-A-Wish trip) in over a year and a half. We are going to Inks Lake State Park tent camping for a couple of days. There are several families going and the kids are very excited. Steven's energy is so good I think he's going to love doing a lot of nature trail hiking! We feel very fortunate with Steven at less than a year post transplant and doing so well that we are able take this little family vacation.
Since all of Steven's tests came back so positive, Dr. Wall said Steven could come back in a month instead of two weeks! Thanks once again for all your prayers--they are being answered daily.
Lisa, Dave, Meredith, Emma and Steven Trapp
What a wonderful spring break we had! Dr. Wall gave Steven the green light to fly. It so nice to get good news when we go to his appointments! She even said he's doing so well on the Gleevec that he doesn't need to go in but every three weeks now!
Well, we took that green light and "flew" with it--all the way to Disneyland! Dave surprised us all by planning an impromtu trip to California! We didn't tell the kids we were going until we were packed and on our way to the airport! To say the least, it was the nicest vacation we have taken in a long time. The last trip we were on was Steven's Make-A-Wish trip to Disneyworld last May. That trip was also wonderful in it's own way,however, our anxiety during that trip was naturally much higher since Steven was getting ready to go in for the transplant in June. Now here he is 10 months post transplant and doing so well that we can take a trip again--it is such a nice feeling. This trip was relaxing, spontaneous, and very care free. Steven and the girls were in heaven with all the fun of Disneyland and the new California Adventure theme park. It was very nice to feel like a "normal" family just blending in with the crowds. Our only nervousness came the first evening when we realized we didn't have any jello for Steven to use with his Gleevec (oops!) Luckily, the Disney staff was very helpful and they tracked some down for us to keep in our room. The girls and Steven are still talking about how we surprised them with this special trip!
After not taking any trips in so long --well, we've decided to make up for lost time! We did still take our camping trip which also went very well. The kids loved tent camping and they had so many friends to play and hike with. We feel so blessed to be able to take trips again and do so many "normal" things. Steven has a lot of energy and to date no liver issues at all. I find I am truly not worrying as much since he is tolerating the Gleevec so well. He will have more thorough testing in about three more months to make sure the Gleevec is doing it's job and getting rid of any remaining bad "proteins" that may still be there.
God Bless and we hope everyone had a wonderful Spring Break!
Saturday, April 19, 2003
This is an especially wonderful Easter week since we received some good news on Steven's tests. The tests came back earlier than expected and were all negative for the presence of the "protein" which is the reason the previous BCR-ABL was positive. The reason for the "negative" on his test could be three fold--either his three month's of taking Gleevec is doing it's job and killing any remaining bad cells, his own body's immune system is getting stronger and stronger and therefore able to kill off any remaining bad cells, or a combination of the two. It really doesn't matter what the reason is --we are just so happy and relieved to get a "negative" result. Dr. Wall will repeat these tests in three months.
Once again all the other tests looked good as well and he continues to handle the Gleevec well. He recently had an ear infection that came on very quickly. We brought Steven to the infusion center where Dr. Wall examined him and then said "this is just a normal childhood thing--no big deal" and also commented "it's so nice to treat something that can be healed so easily". She put him on Augmentin and he did great. It's such a good feeling to go to the doctor, get an antibiotic, and have Steven better within days. We so appreciate the impact of antibiotics and a fully functioning immune system.
I was perusing previous updates regarding our last year's Easter plans. Last year the tension was so very high as he was getting ready to go into the hospital for the transplant and here we are a year later with him running around like all other four year olds do. It is so wonderful to be almost a year later and all going to church as a family with Steven doing so well. We know this can change in the blink of an eye so we definitely continue to appreciate every healthy day.
Once again thank you to everyone for your prayers of support and we wish you a special family day as you celebrate Easter. This is a joyful day indeed!
Friday June 6, 2003
It's hard to believe that it's been so long since I've updated. It's been so nice to be busy with the normalness of life, end of school parties, Emma and Dave's birthdays, and day to day relaxing summer fun! It's so nice to report that Steven continues to be doing great!
Recently, Dave and I have spent a lot of time reminiscing on how different our family's life was this time last year. One year ago this week Steven was admitted to the hospital for the nine days of very heavy chemo prior to transplant. His one year anniversary of his bone marrow transplant is this Wednesday, June 11th. Our life was so very different a year ago. This week brings back so many memories and emotions. Dave and I realize how very fortunate we are to be a year post transplant with a happy, healthy son yet we know we're in a high risk time and it can change in a heartbeat. We thank God daily that things continue to go well and know that He will be there to help us make it through whatever we may encounter.
Although we feel in some ways so very normal again, any change in Steven's health sends us into high anxiety pretty quickly. Steven had yet another ear infection in the ear that still has a tube (put in when he was 8 months old and it still hasn't fallen out.) After ten days of Augmentin with no response, Dave and I were a little concerned (not to mention that IT all started with an ear infection that wouldn't heal). The positive difference now is that he doesn't have any fever--just a ear that continues to drain. This week he went to the infusion center where Dr. Wall did some blood work. Fortunately it all came back great and her diagnosis is that it's just "plumbing" issues and that Steven's become resistant to Augmentin. Basically it's an ear problem not a post transplant or Leukemia issue. Hearing those words was very reassuring.
Yesterday I took Steven to his pediatric ENT who is recommending we have the minor surgery to remove the tube. The only drawback is that we can't do it until we get his ear infection cleared up and he can't get his ear wet for approximately six weeks. That means no swimming! Considering we live in HOT south Texas where swimming is a daily activity--this is going to be somewhat of a challenge but fortunately a small one. Over the course of the last year and a half we've had to live with so many restrictions where Steven is concerned and sometimes I think he handles them better than Dave and I do! Today even as his sisters' and friends were swimming in the pool, he just played on the side and made his own fun without even missing a beat. We thank God for his easygoing personality. I think he's learned how to adapt when he knows it's serious and we can't make concessions. Fortunately this is minor in the big scheme of things.
Steven's one year post transplant work up is scheduled for June 24th. He will have extensive bloodwork and immune function tests so we should have a pretty good idea of how he's doing then. But based on how he looks and his energy level--we think he is doing GREAT!
As we approach Steven's one year transplant anniversary we would like to say once again -- thank you! We couldn't have made it through the last year without the love, support and caring from so many friends, family and people we don't even know. We continue to be amazed at how many people still ask how Steven and our family is doing --we so very much appreciate people's concern and prayers.
We'll update again after we receive the results from Steven's one year post transplant work up. Take care and God Bless
Today marks the one year anniversary of Steven's bone marrow transplant. It's amazing to us that a whole year has gone by. As we've said before, we feel so blessed to be where we are with Steven doing so well.
It seemed like everytime I looked at Steven today I kept marveling at how far he has come and how blessed Dave and I are to have three happy smiling kids able to enjoy a wonderful summer day. It truly is the simple things in life that bring the most pleasure.
We celebrated this special day by renting a Power Ranger moon bounce and inviting a bunch of neighborhood kids over to "jump and swim." Even though Steven couldn't get into the pool due to his ear infection, he had a blast jumping in the moon bounce and playing with the hose squirting kids as they swam. Our good friends, the Rosenfeld's brought Steven a big trophy that said "BRAVE CHAMPION". It made Steven's day! Our girls' said they hope we celebrate this day every year.
Tonight as I was putting him to bed Steven said "Mom, this has been the best day of my life!" Based on how much fun everyone had, it truly was a great day. Dave and I have faith that Steven will have many more "best days" to come!
Lisa, Dave, Meredith, Emma and Steven Trapp
Friday, July 29th
It's been such a nice month since the last time I updated. We have really been enjoying our summer! Our family went on a wonderful summer vaction to Colorado and New Mexico! We rented an RV and spent two weeks traveling. It was such good "family time" playing games, hiking, river rafting, and visiting fun places. The weather was cool and no need for bug spray--it doesn't get any better than that! This picture is of Steven loving outdoor life doing some "work" collecting old wood for our campfire!
Now though were back in the heat and mosquitos that come during our San Antonio summers! We really are enjoying these lazy days of July. Steven is doing fantastic. He is now finally TUBE free! On Wednesday he had the surgery to remove his ear tube. He was so very brave but kept worrying they were going to take his "crab" (port-a-cath implanted in his chest) out while he was asleep. He's become quite attached to it. His crab, however, won't come out for another nine months or so.
Dr. Wall wants to keep Steven on Gleevec for another six months just to "cover" him during the highest risk of relapse time which is the first 6-18months post transplant. Fortunately his body has reacted very well to the Gleevec and he takes it like a champ. Because of Steven's past ear infection and now tube removal, his one year transplant work up has been rescheduled for August 11th. At that time they will run a bunch of tests looking at his immune function and percent of donor cells.
Since all is going well they are going to start re-immunizing Steven! We have always been told that when you get to the point where they get re-immunized, that means all is going very well. Come August 11, Steven will get his first round! As we've mentioned before, when he went through the transplant he lost all the immunizations he received as a baby. The stem cells from Meredith provide very little residual coverage so Steven has to go through the entire 22 shots again! I asked if they could do it in his port but they can't--the shots have to go in the arms since they are deep muscle shots. So he'll have approximately four shots in his arms at every visit. I can only guess after the first visit Steven's not going to want to go back! I'll just have to keep reminding him that this is a good thing (and then bribe him with an ICEE!)
Until then, however, were just going to enjoy the rest of summer. We're taking a trip to Chicago for the first time in two years! The kids are so looking forward to seeing Grandma and Grandpa and their Aunts and Uncles. Last summer for us was a long summer of recovery and here we are now having a healthy summer of travel and fun. It feels good and we really appreciate it so much more knowing how different our situation could be.
It's hard to believe the San Antonio Leukemia and Lymphoma Society's Light the Night walk is already coming upon us! In some ways it just seems like yeserday that Steven walked with the white cancer survivor's balloon through downtown San Antonio. That was an incredibly special event for our family and all the wonderful friends and family who walked in honor of Steven. We recently drove by Milam park where the LTN was held. As we passed by, Steven and the girls got SO excited saying "This is where that fun balloon party was!" They are very excited to do it again this year! Steven's energy level is so much higher than this time last year--instead of riding in a stroller, I'm sure he'll be walking right along side all of us! My good friend Sue Wysong is again going to be the team leader--Thanks Sue! We would love everyone to come walk again in honor of all families touched by Leukemia and Lymphoma. The walk is Saturday, September 27th. Sue and I both have sign up forms if you'd like to join us!
We'll update again after Steven's one year post transplant work up. Hope you are having a nice summer!
Lisa, Dave, Meredith, Emma and Steven
Yesterday as I was watering my flowers I happened to trip and fall backwards fully clothed into our pool. Steven heard my splash and came running outside laughing and decided to jump in himself --also fully clothed! We ended up playing in the pool for about three hours and it was during that time that he learned to swim! He has been so anxious about it so seeing him swim with such confidence was such a blessing. Only a couple hours later Steven said "Hey Mom, now that I can swim-- how about going outside and taking my training wheels off my bike so I can learn to ride too"! We spent the entire afternoon outside where he got the hang of it and was riding like a champ! We celebrated Steven's two big achievements with the girls over banana splits after school.
The reason I tell you that story is because on Monday we received Steven's one year post transplant workup test results and his BCR-ABL test came back positive. Steven appears so very healthy yet this test claims he might still have some "bad" cells in him. We do not know if this test is picking up live cells, dead cells, or is a false positive. Obviously, the uncertainty creates some concern. There are, however, three important tests they perform that came back with very good results.. His immune function test came back normal (he is now almost 100% so he's like any other 4 year old running around (although without immunizations). He is also 100% donor cells and all his blood work looked great. In addition, he grew four inches (no weight gain) over the course of almost a year and a half. This is also a very good sign.
As you might remember back in December he had another BCR-ABL test come back positive. They then did a bone marrow aspirate which didn't grow out any Leukemia cells at all but as a precautionary measure Dr. Wall started Steven on Gleevec. Two months later we had a negative result. Now we're back to getting another positive result. As Dr. Wall has told us--"Just look at him--he's active, energetic and doing so very well". We would appreciate prayers that it ends up being a false positive result.
I found it amazing that the morning after we received this disturbing report Steven learned to swim and ride his bike without training wheels all in the same day--what are the chances of that? I told Dave I feel like this is God's way of helping us to focus on what's important --and that is Steven is happy, active and has a huge "zest" for life! He's back in school three days a week (Pre-K 4), has a wonderful teacher--Miss Kimberlee, and after a week of separation anxiety he is now having a great time playing with the other kids. Steven goes back to the hospital in a couple of weeks for blood tests and hopefully will be continuing with his re immunization plan. I'll update as I hear more.
I hope you had a nice summer and are enjoying a new "fall" routine!
Lisa, Dave, Meredith, Emma and Steven
This past Thursday, September 11th, as we thought about, remembered and prayed for all the people touched by such tragic events that occurred exactly two years ago, this same day Dave and I were going through what I can only call a hell of our own.
We found out Thursday afternoon that Steven has relapsed in a very serious way. His blood work revealed that his platelets and red blood cell counts were very low. We had noticed over the last several weeks that he had more than several bruises in varying places on his body. We wanted to attribute it as a result of falling from his bike several times, however as he became increasingly pale we had a sickening feeling that wasn't the case. The one thing that would make Dave and I think maybe we were being overly worried was that his energy level never decreased --he was acting like every other active four year old. He was swimming, riding his scooter and bike, running, playing and showed virtually no signs of being tired. Dave and I thought about taking him in last Tuesday because of our worries but knowing I had the appointment scheduled for Thursday anyway, I instead chose to take Steven for a special train ride and a trip to the zoo. We had such a fun day! He walked, ran and played for four hours never showing any signs of being tired. I am so incredibly grateful we spent that day with no worries just enjoying a beautiful day at the zoo. Now our lives seem so incredibly changed.
Steven went in to the hospital yesterday for a blood and platlet transfusion. He was understandably very anxious since he hasn't had to deal with any of this for so long. The results of his bone marrow show it is completely full of Leukemia. His CNS is still clear as it always has been. This is naturally very hard for Dave and I to comprehend, understand, rationalize, or accept. The worry is like non other we've experienced thus far. We're trying to understand and grasp the "why's" however, there are no easy answers, only more questions.
After much discussion with our oncologist Dr. Estrada as well as Dr. Wall, this is going to be our course of action. It starts with taking it one week at a time and see how Steven is tolerating it. We are going to try and get him back into remission. Dr. Estrada feels he has about an 80% chance of getting there but can not give us any statistics on how long he will stay there. This is all truly in God's hands. As our pastor Mike Lowry put it, "It is hope (for a cure and miracle from god) vs. hope (eternal life).
I know God is present in our lives. We've seen too many examples of His presence not to hold faith in this simple fact. Another inexplainable thing happened soon after we received this very difficult news. We were in the exam room at the hospital and I was trying to just hold it together after being told about Steven's relapse. Steven, however, was in a great mood being silly and spinning around on Dr. Wall's chair chatting with the the various people in the room. In walked one of his favorite nurses from transplant. Elenor was the nurse who was there the day of his transplant as well as many more days. Elenor saw that I was very upset (but trying not to show it). Steven looked at her and with a big smile started singing "God our Father, God our Father, once again, once again, thank you for our blessings, thank you for our blessings, Amen." Steven doesn't usually walk around singing that song so it truly had to be a "God moment."
Steven will be going in on Monday for a week of IV Chemotherapy. Because of the severity of the disease they will be using high doses of chemo. We are doing this as an outpatient so Steven can go home on IV fluids and spend the nights in his own bed. After the week of chemo his counts will bottom out and he will be extrememly vulnerable for infection. This is when we should expect a hospital stay. The next two weeks his counts should gradually rise and hopefully he will feel we well enough to get out and have some fun. Knowing Steven though, he will find the fun because that's what he does best. This is as far as we are planning at this point. There are so many variables that we can't plan anything further until we see how he's responded to this first course of treatment.
On Thursday evening we told the girls. It was much harder the second time around. They are trying to understand. They continue to have a lot of questions. So far they seem to be handling it pretty well. Meredith and Emma want to talk about it so if you see them it's okay to ask or give them an extra hug.
Today Steven hopefully will wake up (it's only 6am) feeling refreshed and ready for a good day. We promised to take him and the girls to FIESTA TEXAS for a nice family day since come Monday Steven will be hooked up to an IV bag and won't be able to do much. On Sunday we are still going to do our family's now annual little Lemonade stand to help raise money for the Leukemia society's upcoming Light the Night walk. Last year Steven and the girls had so much fun handing out free lemonade and brownies to all the people who made a donation. Thank you to everyone who has sent in donations for the upcoming Leukemia and Lymphoma Society's Light the Night walk. Every bit makes a difference and hopefully some day, with all the Leukemia research, children won't have to go through what Steven, our family, and so many other families are right now having to face.
Please pray for Steven that God will protect him and watch over him. Pray for our family for strength that our sorrow and anxiety won't overtake our joy and sense of humor. Thank you so much. I'll update as we progress.
Lisa, Dave, Meredith, Emma and Steven Trapp
First, let me say how grateful we are for the outpouring of support through your prayers, emails, cards, and calls. It is only by the grace of God and your support that Lisa and I are getting through each day. This week has brought with it many conversations about letting go and giving up to God. As parents we all know how possessive and protective we are of our children. Lisa and I, due to our circumstances, have really had to work hard at truly letting go and recognizing that Steven is God's child first and ours second. It's been a painful and difficult process as Steven brings such joy and laughter to our lives. The way we continue to cope is to focus on the positive, create good, meaningful, and fun family time, be present in the moment, and believe that all things are possible through God. We know He will protect Steven ("Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these" Luke 18:16), our family, and take care of our needs regardless of the outcome. We continue to pray for healing and hope that there are more good days than bad that lie ahead.
Medically, Steven seems to be tolerating the chemo fairly well and we hope and pray that we can avoid any hospitalizations. His counts are very low and he is at great risk for infection. Lisa and I have made the decision to eliminate any tests or procedures that will not change the course of Steven's treatment. Increased information at this point in time either provides us with sometimes a false sense of hope or creates more anxiety. Plus, each and every procedure puts Steven through varying levels of unnessasary stress. We will continue with all procedures that directly help Steven's chances of getting into a remission. In summary, we just want to live each day as best as we can and put it in God's hands
On a personal note, I continue to be amazed at the faith, strength and resiliency of my wife. Our family is so blessed to have her in our lives.
Usually when you do something a second time, it tends to get a little easier. This week, however, was definitely not the case. After a year and a half --walking back into our oncologist Dr. Estrada's office on Monday morning to do Steven's chemotherapy now a second time-- was definitely one of the more difficult moments of my life. Knowing the situation we now face and with Steven shaking with anxiety, as well as seeing the sympathetic yet worried expressions on his nurses--all made for a very emotional morning. BUT--we rallied and have made it through the week with fortunately nothing more than huge sleep deprivation. With all the fluids he is getting through his IV, he has to go to the bathroom with me carrying his IV bag every 30 minutes all night long. But even with all of us being very tired--at least we're sleeping at home.
Steven has such a resilient spirit. He started off very anxious (reverting back to pulling at his eyelashes as he did the first week he was diagnosed). But by Tuesday morning he was much better and wanting to play as much as he could. Wednesday was the longest day where we didn't arrive back home until almost 7pm as he received chemo and another platelet transfusion.
On the way to the office on Thursday Steven said "Mom, how come Meredith get's to have fun and Emma get's to have fun and all I do is go to the doctor?" My heart ached at that comment. I responded by saying "Yes you do have to go to the doctor but that doesn't mean we can't make it fun!" So after getting his IV bag hooked up I put him in a stroller and headed out for what we have come to call our "adventure". We toured almost all of Methodist hospital and ended up riding elevators up and down the nine story building! Steven loved deciding which floor to visit (he liked the top best) and he loved being surprised by how different each floor looked. We bought candy out of the vending machine and visited another doctor's office so we could see the view from the top! I know for a fact during that time Steven forgot about his IV bag or about even being sick. Who needs Chuckie Cheese's when you have elevators!
Our "adventures" continued today with walks outside and through a neat sky bridge coming back to Dr. Estrada's office hourly for Steven's chemo bag changes. I get to de-access Steven's IV port ( he calls it his "crab") at 9pm tonight. Steven is so excited to take a shower and move freely again.
Now it's time to hope, wait, and see. He will probably need red blood and platelet transfusions again next week. As Dave said, his counts are extremely low thus being extremely vulnerable for infection. We ask for prayers that Steven can avoid a hospital stay and after a week or so of low counts, that they will start to rebound with his own body starting to make some good blood. Steven goes in on Tuesday for blood counts to determine when he'll need another transfusion.
Thank you again for everyone's incredible support. At times it's been hard to talk, however, we so appreciate all the care and concern--we can't make it through this alone and we thank God for all the special people He has put into our lives.
Lisa, Dave, Meredith, Emma and Steven Trapp
Thursday, September 25th
We've had a very nice couple of days. At Steven's appointment on Tuesday we were told his blood counts were holding (thanks to some great blood from so many wonderful donors) and that he wouldn't need a platelet or red blood cell transfusion until this Friday. His counts have pretty much bottomed out but surprisingly (or not so surprisingly) his energy level is still relatively good! He's wanting to get out and do a lot of "adventures" so we are truly making the most of these free days away from IV bags and chemo and are having some fun (only if it's relatively germ free!)
After his transfusion tomorrow he should really be feeling good. Our family is very much looking forward to participating in Saturday's Leukemia and Lymphoma's Light the Night walk. We hope all goes well on Friday so we can go as a family. We want to say a big thank you to everyone who's donated as well as signed up to walk--it's going to be a very special evening. Steven calls it "the balloon party"! I did want to mention that since Steven's counts are zero and his ability to fight infection non existent, we would appreciate it if at the walk people resist touching (hugs, high fives etc) Steven to help minimize germ risk. Meredith, Emma, Steven, Dave and I all look forward to spending this evening with so many people who have supported our family along this Leukemia journey.
Tuesday, September 30th
It's been a very nice week. This past Saturday we were very fortunate to get to participate in the Leukemia and Lymphoma Society's Light the Night walk. Steven had a blood and platelet transfusion on Friday with a resulting fever that came very close to preventing him from going. Luckily, the fever subsided, Steven was in a relatively good mood and the kids REALLY wanted to go. Steven was still tired from the long day on Friday but as the evening went on he seemed to enjoy it more and more.
Once again, my good friend Sue Wysong, did an amazing job as Steven's Team captain. Dave and I were so humbled by all the friends, neighbors, UUMC church members, UUMC Dayschool, St. George School friends, several Girl Scout troops, and people we didn't even know come walk to support Steven and so many other children fighting Leukemia and Lymphoma. We were especially touched to see how many kids were coming up to Steven showing such kindness and compassion in their faces and actions --it made for a very special night. We want to use this update to thank everyone who donated to the walk--THANK YOU SO MUCH! We don't have the final numbers but as of this week it looks like Steven's Team raised over $18,500 and my guess is our team had well over 100 walkers. We'll know the totals raised for the entire Light the Night walk within a couple of weeks. As our family progresses on this Leukemia journey we continue to be amazed at all the blessings that have come while following this difficult road.
Today Steven had his blood counts checked and it looks like he starting to "recover." This means his blood counts are rising and he is starting to produce some of his own blood. He definitely is feeling better and has more energy than he has had in a week. On Friday he will have a bone marrow aspiration which will show how well the chemotherapy has worked thus far. Dr. Estrada will then determine when we will start the next big round and what chemo drugs will be used.
As Dave and I have more clearly realized over the course of the last three weeks since Steven relapsed--dealing with the medical issues is more often times easier to handle than the all the emotional ups and downs we're seeing more and more. Steven is a year and a half older now and understands so much more. Depending on his sleep and how he's physically feeling, his emotions can vary within the hour. Steven asks a lot more questions. He seems to be growing up so fast and he's trying so hard to understand some very complicated concepts. These emotional ups and downs affect the entire family. Dave and I have spent a lot of time in prayer asking God to give us wisdom and strength as we handle these emotional issues.
In my kitchen I recently hung a ceramic plate that is bright yellow and says "CELEBRATE TODAY". We are doing just that. Everyday we are finding something to celebrate. Right now we celebrate the beautiful cool weather and the fact that Steven, at this very moment, is laughing hysterically while playing a silly Legos game with Meredith and Emma! I cherish the laughter!
Sunday, October 5, 2003
If there are two treats Steven loves more than anything--it would be ICEE's and Krispy Kreme Donuts. This picture was taken after one of our recent "adventures" to the Krispy Kreme store! He and his friend Daniel loved watching all the donuts being made--their enthusiasm was so fun to watch!
We have been really enjoying Steven's new found energy. He is so much like normal sometimes Dave and I are even able to "forget" for a moment what we are dealing with. Friday's appointment went well. He was understandably very anxious but we managed through it and the procedure went smoothly. While Steven was under anesthesia having the Bone Marrow aspiration Dr. Estrada injected some intrathecal (spinal) chemotherapy to keep the Leukemia from spreading to Steven's CNS. The Bone marrow aspiration showed less than 5% Leukemia blasts in his marrow. The pathology results hopefully will confirm this number within a couple of weeks. As of today, it appears Steven is in remission. We are very pleased and feel very blessed that the first round went so well, he stayed out of the hospital, and for the most part didn't have any major side effects. Based on this report Dave and I, along with Dr. Estrada and Dr. Wall, feel Steven is ready to move to a second round of chemo and hope Steven continues to stay in remission.
After Friday, Dave and I felt that our family was in need of a "normal" week. Since Steven is just now feeling really good and his blood counts are holding we wanted to wait a week before we move on with another chemo regimen. Dr. Estrada okay'd it so we're going to make the most of this next week before he starts back up on the IV bag next Monday.
One big change which hit me pretty hard this week was Steven lost all of his hair. And it happened in just four days! Last time it took almost four months for all his hair to fall out but I guess with the heavier doses of chemo he's receiving it was bound to happen faster. I think it just caught Dave and I by surprise even though we knew it was inevitable. Steven, at first, was fascinated by it--he thought it was so cool that he could pull clumps of hair out and it didn't even hurt!
Now that he's almost bald he's much more self concious. At almost five, he's a year and a half older and unlike last time, he really understands why he is losing his hair. He's very cognizant of how he looks and is afraid kids are going to stare or laugh at him. It was nice to see as he was playing outside today he was telling several people "My hair is falling out because of the medicine I am taking--but it will grow back!" It was such a mature explanation --I was very proud of him! I think he's coming around and like always will find a positive outlook on it. He does want to go buy some "cool" hats so we're going to make that a priority this week. Steven losing his hair is such a visual reminder and as Dave mentioned yesterday --gone are the days where we can go places without people noticing or commenting. Like everything about this journey, we will get used to it and will continue to follow and learn from Steven's strong and happy spirit!
Steven doesn't have to start chemo or go for blood tests until next Monday so for this week--we are going to have some adventures! He has been asking to do several things that over the last month he couldn't due to his low blood counts so we're going to pack in a week of fun with, among other things going bowling, visiting a pet store and trying out ice skating for the first time!
I'll update more after Steven starts his second round of chemo. Thanks again for everyone's prayers--they are being answered daily.
Lisa, Dave, Meredith, Emma and Steven
It has been a week of really good days for Steven and our family. My parents came down from Chicago to help out during last week's chemo regimen. Steven handled the chemo very well. This round of ARA-C had surprisingly few side effects. He carried around his attached IV chemo "bag" during the day. I restarted it at midnight and finished at 3am everynight. At night Steven slept through it all and the Zofran kept the nausea away. In this picture he is carrying around his IV chemo "bag" while enjoying a huge ICEE at the zoo. He walked most of the time and didn't let his IV bag get in the way of having fun! We really enjoy having Grandpa Charlie and Grandma Judy here --they have not only been very helpful but there presence has helped keep the mood light, fun and "normal". The kids love Grandpa Charlie's "magic suitcase" and Grandma Judy's bedtime stories! Grandma even jumped in the pool with all her clothes on to which Meredith exclaimed "Wow--not many grandma's would do that!"
Over the weekend Steven seemed to slow down but not by much. He's been happy, is sleeping well and has adjusted well to his new bald head. Every couple of days he says "Mom, I think my hair's growing back!" It's not but it doesn't seem to bother him.
Today Steven went back to Dr. Estrada's office for blood counts. The chemo has taken it's toll on his immune function as he is now neutropenic again and will need a red blood cell transfusion by Thursday. Even Dr. Estrada is amazed and pleasantly surprised by how energetic Steven continues to be while his Hemoglobin is going down pretty rapidly. Steven's nurse Sue commented "Steven continues to be a mystery". Through the tough days and the good days, Steven continues to surpise his medical team. Dr. Estrada expects that Steven's counts will stay down a little longer this time before he starts to recover. For the next several weeks we have to be even more "germ concious" while he's neutropenic. He's on antibiotics and received a Neupogin white blood cell stimulator injection so that hopefully will help give him a little protection during this immunosuppressed time.
At the point when Steven's counts start to recover, Dave and I will be faced with making some very important decisions. We are meeting with his doctors to discuss Steven's next course of treatment. Dave and I have spent many hours in discussion and prayer wanting to do what's best for Steven as a whole child--mind, body and spirit. Right now we're faced with some questions and decisions that don't have any easy answers and large ramifications on either side. We ask for prayers for God's strength and wisdom in guiding Dave and I in making these important decisions and that we have peace with where God is leading us.
We've mentioned in the past of many "God moment's" throughout the course of Steven't treatment where we knew whatever had happened was just not a coincidence. Another one of those moments came this week as Dave and I are having to face making these tough decisions regarding Steven's care. Over the course of two days on three separate occasions having absolutely nothing to do with eachother--several different people (one from church, a radio announcer, and a daily bible verse website a friend had sent me) all referenced the same bible verse regarding worry--Philippians 4:6 "Don't worry about anything: instead pray about everything. Tell God what you need and thank Him for all he has done." I heard this said recently that God doesn't tell us "It's a good idea not to worry" rather "God commands us not to worry".
In our family, Dave and I have found that focusing on the good instead of all the uncertainty reflects so much in how we view and lead our daily lives. We have been blessed with so many friends and family we can talk to who help us sort through our thoughts and feelings. And sometimes just reading a kind email or card from a caring person we don't even know is enough to help us get through that tough moment. We know God is using so many wonderful people to help our family get through each day--we appreciate every one of you.
Friday, October 24, 2003
We're seeing first hand the effects of chemo in combination with a non existent immune system. Yesterday Steven had a tranfusion due to his low blood counts. Unfortunately he also spiked fever prior to the transfusion. After seven hours at the hospital we came home only to have Steven's fever spike high enough that he had to be admitted to the hospital. A fever at this point is a very scary thing as he has no white cells to fight off germs. His counts unfortunately are still on their way down so his body won't be able to recover from the chemo for another week or two. He did receive more Neupogin which may help to generate some white blood cells.
It was a long night in that he was vomiting and the medicine was not able to hold his fever down. The blood cultures came back positive for a staph infection so he will now be on IV Vancomycin for ten days. We are hoping after a few days of IV antibiotics his fever will subside and we can bring him home to do home health care IV administration. This is the first admittance he's had since his transplant last year so understandably Steven is anxious in addition to not feeling well at all. We ask for prayers that the IV antibiotics work and we can come home soon.
Sunday, October 26, 2003
Steven is still in the hospital but doing much better. He is on Vancomycin to help eliminate the staph infection. He is now just running a low grade fever. They are trying to determine if the infection is in his port (aka--crab--as Steven calls it) or if it is systemic. He received a platelet transfusion yesterday. Today his body actually produced some white cell "bands" which are precursors to real white blood cells. Medically this is good news so hopefully that will translate into getting Steven back home soon. We're hopeful to come home sometime on Tuesday.
Emotionally Steven has definitely had some ups and downs but overall seems to be handling this hospital stay fairly well. He's noticing that the nurses come in all the time to do vitals and hang IV bags. This morning he awoke and said "Hey mom--why when we are sleeping do the nurses still work? Don't they ever sleep?" Also, it's nice to see Steven's spunk returning as evidenced by a comment he made when I got excited to see a helicopter landing on the roof right outside his hospital room window. I was so excited saying how cool I thought it was when he just looked at me and said "Mom--you are SO weird!"
Monday, October 27, 2003
We're home! Steven had such a good night and his counts are looking better so Dr. Estrada let us come home this afternoon! We are having a home health care agency coming to teach us how to administer the IV Vancomycin. He will need it at 6am, 2pm, and 10pm. Steven came home from the hospital with his port accessed so he'll just be "attached" to the IV bag for two hour stretches for the next five days. This is SO much better than being in the hospital! We pray that Steven continues to be fever free.
Upon being discharged the first place Steven wanted to go was Krispy Kreme! And within the first hour of being home he and Dave played a little soccer, golf, and football in the front yard! The smile on Steven's face this afternoon is priceless.
Steven goes back to Dr. Estrada Wednesday and will be tested again next week to see if they can isolate where the infection was coming from (port vs. systemic). Thank you all for your offers of help, emails and support throughout the weekend. My parents left to go back to Chicago last Friday as they had already been here for two weeks. We sure enjoyed having them and appreciated all their help. We'll update more soon.
When Steven awoke on Sunday morning bright and early (5:45am to be exact!) he said "Mom, am I five now?" He was SO excited to celebrate his birthday. He's going around saying he can do so many more things now that he's five! We had a wonderful family day celebrating by going to the Randolph Air Force base Air Show! Steven and the girls loved seeing all the neat planes and especially the Blue Angels! This picture is of Steven being goofy for the camera before blowing out his big "5" candle! He is having his "friends" party next weekend since he was still on Vancomycin this weekend. Steven's bandaid on his nose is from a little fall he had while running really fast. He probably doesn't need it anymore but he refuses to take it off wearing it like a badge of honor!
Halloween was another night of fun. Steven was beside himself running from house to house trying to keep up with his sisters and friends. He said on more than one occasion "Boy do I love candy--this is the best time ever!" He always keeps us smiling with his unending enthusiasm. Steven, Meredith and Emma were especially excited to see Dave get dressed up like a "real" hocky player!
Steven still had his port accessed but that didn't make him miss a beat. In fact, his port looked very good when he had it taken out yesterday at Dr. Estrada's. They did a blood culture to see if he has an infection in the line. We will know within a couple of days. Steven's counts have come up beautifully. He has fully recoverd from this last round of chemo. Now we are faced with decisions regarding where we go next with Steven's care. We have met at length with Dr. Estrada and are meeting with Dr. Wall next week. We continue to ask for prayers that God gives us the strength and guidance to help Dave and I make well informed decisions that bring peace. For the rest of this week we are going to live normally as Steven is "unhooked" and feeling great!
This is a picture of Steven enjoying his friends birthday party at what he called the "big" kids place--Malibu Grand Prix Castle. Steven, his sisters' and his friends went go carting, mini golfing, and played lots of arcade games! We even did a round of "cheers" with big blue ICEE"s to commemorate Steven turning five!
It really has been such a wonderful several weeks off all medication. Steven has been happy, energetic and rebounded so well from being in the hospital with the staph infection. The cultures came back normal for his port so his infection was systemic and the antibiotics definitely worked. We feel very blessed to have had such a good two weeks.
We keep referring to this Leukemia journey as a roller coaster ride since that is the only term that adequately defines how Dave and I feel so much of the time. We had our meeting yesterday with Dr. Wall to discuss the future of Steven's care. It was a difficult and emotional meeting but one that did bring a sense of peace.
Dr. Wall does not feel a second transplant is the best option for Steven. We agree and have struggled with the thought of putting him through another transplant. She recently conferred with several other transplant centers and although this is a possible next step--it's a very risky one with a very low chance of survival. Staying on chemotherapy only would also be a very risky plan as Steven has an extremely aggressive form of cancer and over time his body would build up a resistance to the chemotherapy drugs.
After many hours of discussion with his doctors as well as a lot of thought and prayer, Dave and I have decided to take Dr. Wall's recommendation of enrolling Steven in an experimental study which attacks the Leukemia from the immuno side--sort of like "super sizing" the good cells to go fight the nasty Leukemia cells. It is an adult study so Steven will be the first young child to participate. The risks of acute and chronic Graft versus Host disease (GVH) are high but the immuno drugs they give do not suppress the immune system so he won't have the risks associated with being neutropenic. He will be monitored very closely. Besides all the potential side effects, a hard part about this protocol is that for three rounds of two week sessions Steven has the drugs administered through twice daily shots given in his leg or arm. I will be shown how to give the shots so hopefully we can administer them at home. They can't use his implanted port due to the way the drugs are absorbed. The most common and least harmful side effect is that he will probably feel like he has the flu for the entire two weeks while taking these drugs. After each two week session he has two weeks to recover before they start again. Giving twice daily shots to a five year old is hard but we hope over time he will get used to them. We pray that Steven emotionally and physically can handle this protocol and that he maintains his wonderful positive "spirit".
We really would like to go visit family in Tulsa over Thanksgiving so Steven is receiving another round of IV chemotherapy today and tomorrow which will cause his counts to drop next week but hopefully recover the week of Thanksgiving so we can make the trip. Steven will start the new study protocol here in San Antonio on Dec. 1st.
Through the last month as Dave and I have weighed the limited medical options, we have kept our goals for Steven's care as our primary focus--that being maintaining Steven's quality of life and positive spirit. We feel blessed that Steven is still here with us bringing so much joy to our lives and that we have the opportunity to be making decisions as hard as they may be. Everything about this Leukemia journey has been uncertain yet with the uncertainty has come so many blessings. The pain we have felt has also brought a passion for truly living in the moment. We thank God for entrusting this wonderful little boy to our care. Dave and I ask for prayers that we continue to make the medical decisions that bring peace to our family.
Lisa, Dave, Meredith, Emma and Steven
Philippians 4:8-9 "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things. Whatever you have learned or received or heard from me, or seen in me--put it into practice. And the God of peace will be with you."
Sunday, November 23, 2003
We are so excited that we get to go to Tulsa to visit family for Thanksgiving. Steven did wonderful with his two days of IV chemo. His counts are coming down but not too low. Emma, (7), came down with the flu and then strep throat so we were a little nervous that either Steven might get it or it would travel through the rest of the family but so far so good --we're off on Tuesday morning.
We have so much to be thankful for --Steven is in a good remission, he's happy and has lots of energy. For the last month even with the chemo days, our lives have been remarkably "normal"--filled with laughter, fun and normal school routines.
Steven starts the investigational study when we return on Monday December 1st. My dad --aka "Grandpa Charlie" is going to come back with us from Tulsa to stay for a couple of weeks to help us out as we go through the first two weeks of the protocol.
At this time of year we give thanks for so many blessings. Our family wouldn't have made it this far in our journey without the support and prayers from so many wonderful people. THANK YOU--you bless our lives so much with your kind words, letters, prayers, and smiles.
Lisa, Dave, Meredith, Emma and Steven Trapp
Friday, December 5, 2003
We had such a nice time visiting family in Tulsa over Thanksgiving. This picture is of Steven eating the bread instead of throwing it to the ducks! We sure enjoyed the chance to wear our winter clothes, play games and let the kids run around with their cousins. We hope your Thanksgiving was one that brought peace and relaxation.
Upon returning from Tulsa we had the meeting with Dr. Wall regarding Steven's new protocol. He is now taking GM-CSF shots daily for the first seven days. So far he has tolerated the shots amazingly well. I was shown how to give injections and after doing it now for four days, I'm starting to get the hang of it. Steven has such a good attitude about it. He tells me where he wants it (we rotate sites) and watches as I draw up the syringe. After each shot he gets to pick something from my "magic suitcase" (Dollar store toys!). This was a great idea from my mom and dad who always bring a magic suitcase for the kids when they come to visit. It's been nice having my dad here to help while we adjust to this new schedule.
As far as side effects go, the GM-CSF which is a stem cell strengthening hormone, does cause some bone pain but we now give Steven Motrin twice a day and so far it's kept him from having any more leg cramps. On Tuesday Steven will get another drug called IL-2 added to the injection schedule. He'll have two shots a day for another seven days. This drug has the potential to cause a wide range of side effects from minor ones causing him to feel like he has the flu to much more severe. We will still be giving him the shots at home but will be taking him to the hospital infusion center several times during that week for monitoring to ensure all is going well. After this first session he will have two weeks off and then we start again for another round. Even though this is a difficult experimental protocol to start--we feel very fortunate to live in a city where we have excellent medical care and this Leukemia study available.
Dave and I feel so blessed that Steven has adapted very well to new medical routines. Things change so quickly in his world and for the most part he's just learned to "roll with the flow". He asks a lot of questions- as do the girls- but so far they all seem to be handling the new routine pretty well. On the way to school yesterday Emma asked me "After Steven finishes all these shots will the Leukemia be all gone?" That was a tough question to answer so I just kept it simple and said "We sure hope so."
Wednesday, December 17, 2003
Here is a picture of the wise "King" Steven. As part of our family Advent preparation, the kids put on a Christmas birth story play! Emma was Mary, Meredith was Joseph, and Steven was "the wise king" (this was better than last year when the girls made him be the camel!) It's neat to see their understanding of the birth story and creativity in telling it increase with every year. (Click on Photo album to see pics of the play!)
As you can tell from the picture--we're excited to see that Steven now has a dusting of hair! His eyelashes have already grown in and he has eyebrows again.
We have been very blessed over the course of this first treatment. Steven tolerated the shots better than I would have ever imagined and he did not experience any symtematic side effects. The first week's blood work looks like the drugs are having some effect on Steven's blood counts. We hope that means that the drugs are having the cellular effect of killing remaining Leukemia cells.
At our appointment today Steven had more blood taken to run additional tests. Dr. Wall was very pleased with how good Steven looks, acts, and how wonderful he has tolerated getting two shots per day for fourteen days. She said the best case scenario is that he gets the "Graft vs. Leukemia effect" (the drugs go out and kill remaining Leukemia cells) without experiencing any of the protocol side effects (visual symptoms that would make him feel like he has the flu to more serious "stuff" affecting his stomach, lungs, or liver). It is a huge relief and blessing to say that the two weeks have gone very smoothly.
Dr. Wall's Christmas gift to Steven (and us) is that he doesn't have to go back for a hospital appointment until December 30th. At that time he will start the second round of the protocol which includes another fourteen days of injections.
As Steven progressed with the study and we saw with each day things going so well, I have begun to relax a bit. Two weeks ago we didn't know if we would be able to attend any of the girls' Christmas choir and piano recitals as well as the varied school Christmas parties etc..due to not knowing how it would go with Steven. It is with such a thankful heart that we, as a family, have been able to go and enjoy these simple pleasures the Christmas season brings.
Lisa, David, Meredith, Emma and Steven Trapp
Sunday, December 28, 2003
Here's a picture of the kids dressed in their Christmas finest getting ready to go to Christmas Eve service. We have loved feeling so normal and have enjoyed spending the Christmas season first with Dave's dad Ron, sister Debbie and brother in law Shawn and their kids and then this past week with my mom--Grandma Judy and dad--Grandpa Charlie here visiting from Chicago. We've had days filled with everyday fun, relaxation, swimming, movies, good conversation and lots of laundry!
Steven has felt great. Steven's best present of all has been not having to go to the hospital Infusion center and not having to take any medications (although getting a Huver disk from Santa comes in a close second!) Steven knows he's going to have to start the shots again as he asks almost everyday "How many more days until I start my shots again?" when I tell him, it's nice to see he still maintains a positive outlook by saying "but no shots today!"
Steven starts the next phase of the study this Tuesday, December 30th. Dr. Wall says the second phase should go as smoothly as the first--we ask for prayers that Steven tolerates the shots as well and that the drugs are doing what they should be by killing remaining Leukemia cells.
We feel so grateful to have this special Christmas time spending it with family and friends. We're taking it a day at a time and focusing on how fortunate we are to have a child who, although he's going through a very tough fight, is happy, energetic, playful, and full of a zest for living. Sometimes it's almost too overwhelming to think about.
We hope you and your family have had a relaxing and peacefilled holiday season. Dave and I count everyone of you as a blessing to our family--we really appreciate you taking the time to think of, check on, and pray for Steven as he continues with this experimental protocol.
We hope you are enjoying the remaining holiday days and wish you a happy and healthy 2004!
Lisa, Dave, Meredith, Emma and Steven Trapp
Philippians 4:8-9 "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things. Whatever you have learned or received or heard from me, or seen in me--put it into practice. And the God of peace will be with you."
Living "in the moment" comes with so many blessings. A minor one being not having to succumb to the inevitable breaking of New Year's Eve resolutions--because Dave and I didn't set any!
Now that 2004 is upon us I find besides marking "04" on all my checks--not much else has changed. Dave and I do have family goals for the new year but for the most part they revolve around taking it one day at a time with also the goal of hopefully taking a few special family vacations. For now however, we wake up with the plan to make it a good day and with the desire to, as I tell my kids, "find an adventure".
Now that the girls are back in school--it's Steven and Mommy time again. Steven wakes up every day still asking "Do I have to go to the doctor today?" On the days we don't I say "No--today we just get to have fun!" Yesterday when I said that he answered "Do you mean like going to Chuckie Cheese fun or just staying at home fun?" Boy does he know how to work me!
In this new year we are beginning to put Steven back in his Sunday School class at church--he was reluctant at first but when his friend Mitchell came and gave him a big hug all went better. We have made the decision not to send Steven back to preschool but with God's grace--hopefully will get to enroll him in Kindergarten in the fall.
At times we feel like we're reliving last year all over again--with more uncertainties but with a grown faith. We've had a lot of people ask us what the blood tests have shown since starting the study. His blood work looks good, however, the real test is how long Steven stays in remission. At his visit with Dr. Wall on Tuesday she said "The way he looks tells me a whole lot more than any blood test will." And she thought he looked great. We know this can change so fast so we're just grateful that today he looks and acts so good. Minus some bone pain the first day, Steven has had virtually no side effects from the drugs. He's tolerating the shots even better than before and we've had half the neighborhood kids (it seems) come watch Steven be brave as he gets his shots! He's quite the trooper. We go in on Tuesday for more blood work and then he's off treatment for two whole weeks!
Thanks for checking up on Steven and once again thank you for your prayers--their what make the difference!
Lisa, Dave, Meredith, Emma and Steven Trapp
It's hard to believe that as of yesterday it has been exactly two years since Steven was diagnosed with Leukemia. Sometimes I feel like we've been living this for a lot longer than just two years. We are so grateful that Steven is still here with us--he brings blessings every day.
I hadn't updated in awhile due to wanting to feel "normal" during the two weeks off of the study protocol. The two weeks off all meds were wonderful. A big dose of reality, however, came the day he started back up on meds.
On Tuesday, after having his port accessed, Steven developed a serious systemic infection. It happened very soon after Steven and I left the hospital to go pick up the girls at school. Steven started shaking and turned extremely pale and within a few more minutes started spiking a high fever. It was scary to see such a bad infection have an onset so quickly. Dr. Grimley told us to return immediately to the hospital. Luckily, my babysitter was driving in the area and came to take Meredith and Emma so I could take Steven back to the hospital. And that's where we've been the last three days. It started off bad but within just several hours of IV antibiotics Steven was feeling much better. That first night in the hospital I said a prayer of thanks for the scientists who developed antibiotics because without them we would be in a much different situation right now. Dr. Grimley said that Steven is very lucky that he wasn't neutropenic and that he has his own white blood cells that helped start fighting the infection. Things happen so fast with systemic infections.
Last night Steven came home and now we are doing home health care IV infusion. He's on two IV antibiotics for the next ten days. He get's the antibiotics at 6am, 2pm and 10pm with each lasting an hour and a half. It's tiring but better than being in the hospital. Steven's port will be accessed the entire time so his activitites will be limited. They believe the bacteria is in his line (port) and when they flushed the line to draw blood, it sent the bacteria immediately throughout Steven's entire body thus causing the rapid onset of a systemic infection. The goal now is to clear the port of bacteria and hope it doesn't return again. If it does then he will have to have his port (also know as his "crab") removed.
Due to the infection, the start of the last phase of the study protocol was delayed. We are starting the GMCSF shots today. This is when sometimes I feel--this poor kid has to go through so many sticks, pokes, and other unpleasant things. It's amazing that he still smiles as much as he does. The homehealth care nurse who had just met Steven even commented "He seems like a special kid who really has a good attitude through all this". That is truly a blessing.
February in San Antonio is Rodeo time so I thought I'd put a picture of Steven the Cowboy on the website! He tucked his pants inside his boots because he said he wanted to make sure everyone could see his "cool" cowboy boots (thank you Jake for the hand me downs)!
Steven is feeling great! He is so excited to be off all meds again. He finished the last antibiotic infusions last week and he is infection free. Dr. Wall has decided not to pull his line at this point but to wait and see if an infection occurs again. If it does, his line will be removed and another one placed. Steven also has finished his last dose of the third round of experimental protocol drugs. He still wakes up everyday asking if he has to do his shots today, but feels better when I tell him no. At some point in the future there may be a need for him to do another round.
We go in tomorrow for final blood work testing for the study. According to his doctors we are still in "unchartered territory". We are meeting with Dr. Wall tomorrow to determine what the next course of action will be. It may be that we just wait and see what happens. The only way to know if the drugs have worked is by how long Steven stays in remission. It's a hard thing to just "wait and see" but that just may be the best thing to do. He will have monthly blood testing and we probably will do BCR-ABL tests monthly as well. It is the most sensitive test out there that can determine the presence of the Philadelphia Chromosome. If the test were to come back positive then we would know that he was probably going to relapse soon. The more early warning we have obviously the better.
Sometimes it seems our whole life revolves around "waiting and seeing". Dave and I have learned to make a conscious decision to put it aside and live as normally as we can. Steven is feeling great and acting great. We thank God for that daily. A friend recently emailed me a great bible verse--"Do not worry about tomorrow, for tomorrow will worry about itself; each day has enough trouble of its own." Matthew 6:34. I've read so many verses relating to the same topic of living for today and letting God take control. I have found that I function so much better when I push the worries aside, trust God, and just act and be thankful for the day at hand.
Last Saturday's long awaited "snow" in San Antonio brought lots of smiles to Meredith, Emma and especially Steven since he's never seen real snow! Emma woke our whole family up at 6am so we could see our brief winter (which was a good thing since all the snow melted in just a few hours!) Upon jumping out of bed, Steven immediately ran downstairs and with so much excitement exclaimed "This is the best day of my life!" All the kids played for hours outside scraping ice off our tables with spatulas, using food coloring to turn the snow blue, and stashing bowls of snow in the freezer to save for later!
Considering that Steven was recently in the hospital and had to do the ten days of IV infusions, it's amazing to us that he rebounded so fast and we are able to enjoy special family days like going to the rodeo and playing in the snow. Going through those hard days really make the good days that much better.
Thanks again for all your prayers. We still receive emails, cards, and calls from so many caring people from many different places--thank you!
If you'd like to see more pics--I finally added new pictures to the picture album!
Friday, March 12, 2004
We are so excited to be heading off for a spring break family vacation! Steven is doing great! We are leaving today to go to San Diego. Steven's the most excited to see Legoland and the girls really want to see the panda bears at the San Diego zoo! Dave and I are looking forward to just getting away and enjoying some relaxation. The day after we get back Steven will go back in for his monthly BCR-ABL test.
We hope you have a wonderful spring break week!
We had such a good time on Spring break! San Diego was beautiful. The kids loved all the sightseeing and we all loved the beach. We were treated to a great dinner and sightseeing by our friends', the Hausman's, parents. Steven loved seeing his little buddy's grandma and grandpa. Thanks Ted and Marietta!
Steven caught a cold and had an ear infection when we returned so they called in an antibiotic and we brought Steven in a little early for his monthly blood testing. He went in on Monday and to our surprise and concern, one of the blood tests came back not so good.
His counts show that Steven is neutropenic which means that he can't fight infection. Ususally this is associated with post chemo situations so we are perplexed as to why this would be happening now as he's been off chemo for over four months. Steven's platelet and Red blood cell counts are good. When Steven relapsed last time his platelet count was extremely low hence all his bruising so we knew something was wrong. Now Steven has no bruising and is acting perfectly normal so obviously we are concerned about what this test might mean.
Dr. Wall said that sometimes kids who have had Leukemia will drop their counts after even a little virus. Steven did have a cold with a very minor fever so we are hoping that is the case. On Monday they ran the BCR-ABL test which determines the presence of the Philadelphia Chromosome. If that comes back positive then he would relapse soon. As Dr. Wall told us their could be a perfectly normal reason why his white blood cell count has dropped but we won't know definitively until this BCR-ABL test comes back. We hope to get the results later today or by early next week (she's expedited the test, however based on this type of test, it still takes awhile to get the results).
Dave and I realize that the chances of Steven relapsing are high but with God's grace and with Steven feeling so good, we have been able to live very normally and truly live in the moment enjoying our many good days. We ask for prayers for Steven that the BCR-ABL test comes back negative and that he has many more good days
Monday, March 29, 2004--a definite 2nd relapse
We received the results of Steven's tests and he is definitely relapsing. His white blood count is low and after Dr. Estrada reviewed Steven's blood smear, it shows he has what they call Leukemia "blasts" circulating in his blood stream. This is obviously a bad situation.
Dave and I met with Dr. Wall and Dr. Estrada to make decisions regarding Steven's care. We are taking it one week at a time. Every decision is a big one and is agonizingly emotional. Even as I write this I'm reminded about how we went through this same roller coaster hill last September when Steven relapsed the first time. Our conversations with our doctors were virtually the same except we had the option of the experimental study which we tried but now have learned that it cearly didn't work. It did, however, give us four more wonderful "normal" months with a happy, energetic and fun loving little boy.
Last Friday as I was telling a friend about the test results, I turned the radio up so Steven wouldn't hear what I was talking about. I found it surprising and it caught my attention that the song playing was "I'm a Survivor" which continued with "I will not give up". And today as Dave, Steven and I drove to Dr. Estrada's office we were listening to a Jars of Clay CD with a song that kept repeating "I'm alright". I have no idea what all this means except that one way or the other Steven will be okay.
We'll update more as we continue on this journey. Thank you so much for your prayers, calls and emails of support--we are so blessed to have so many people caring for us and helping us--we are very grateful. We ask for prayers that God gives Dave and me the wisdom to make the right choices regarding our little boy.
Easter is such a special day. With everything we've been going through this last week we are reminded today that --it's not about us or our family--it's about faith.
This was a picture that was taken just before Steven's relapse. I love this picture so much because it really shows his true happy self. These last ten days have been filled with hours of really good times as well as hours where it's been really hard. The first week after Steven's relapse he was very neutropenic and unable to fight infection. After much prayer, we decided to delay chemo so that we could enjoy some time with him before he really started to feel bad. Also, during this week we started Steven on some homeopathic meds to help neutralize the bad cells and allow his counts to possibly start to recover. We know of two cases with children who have had resistent Leukemia where this therapy has been effective.
Unfortunately, this medicine causes significant side effects in the form of leg and arm cramping, fever, and feeling like he has the flu. We can't keep him on motrin because he needs to sweat out the toxins that are building up in his system. It's been a tough road so far but it appears that his counts have stayed in check and we have avoided chemotherapy to this point. It is quite possible that he will need a blood transfusion and platelets sometime this week.
This past week Steven's been spending a lot of time in our hot tub trying to ease the pain. It seems to be helping. He's very tired, irritable, and trying to have fun but it's hard when he's not feeling good. It's been a hard week on the girls as well. They are trying to comfort Steven but sometimes he's inconsolable and they get frustrated. They are such caring sisters and are dealing with this as best as they can.
We were able to go to Easter church as a family today. During the service I watched as Emma filled out a prayer request card that said "My brother has Leukemia. I don't want him to have Leukemia. I love him so much. Please pray for our family. Happy Easter." It sounded so grown up for a seven year old. We've done a lot of talking with Meredith and Emma and let them know that their feelings are normal and it's okay to feel frustrated, angry, happy or sad--we all feel that way. Some of their questions are so hard to answer.
Dave and I have had several significant faith moments over the last week. God is helping us get through this and guiding our every step. We feel His presence. We still are having some difficult days, however, the way we are getting through them is to once again just focus on the moment and try not to think about tomorrow. We have no idea what lies ahead in the next several weeks but we have faith that we will make it through. We have hope, Steven is a fighter with such a strong spirit, and we're taking it one hour at a time.
Thank you SO much for your prayers--we do need them and we know God listens and answers. We met with Mike Lowry, our senior pastor at our church last week and he made a comment about how answers become more clear when we are looking at it from the rear view mirror. Six months from now so much more will make sense, but for now we are living it moment by moment and regardless of how hard the day may be, we look for the blessings each day brings.
Thank you so much for your prayers. Tomorrow Steven goes in for a check of his blood and we hope God will grant us the wisdom and grace to determine the next step.
Monday, April 19, 2004
I hate writing about the negative stuff but the reality is it's been a very tough week filled with emotional burdens that, at times, are exceptionally hard to get through. Steven is having significant side effects from the Protocel that are very similar to the symptoms of advanced Leukemia and it's hard to tell the difference between the two. With Motrin and/or Codine he is able to enjoy some decent hours but without meds he has fever, significant aches and pretty much feels miserable. He has been sleeping a lot of the day. It's a very emotional balancing act.
We have so much support from so many wonderful people, yet there are times when Lisa and I feel as though we are on an island with the only people truly capable of empathizing with our innermost thoughts are the Father and Christ Jesus, and those parents that have faced similar challenges. In this situation we know it's so hard for people to know what to say--just letting us know that you care has meant so much to our family.
Having said that, we celebrate the good moments we had this past week and continue to seek the positive in each day. One amazing daily blessing has been watching a family of hawks that moved into a tree in our backyard. They are such big graceful birds and being able to watch them soar has been both uplifting and great fun.
Steven had blood work drawn today and it appears that his disease state has become worse. He had a blood transfusion last Tuesday that allowed him to have a couple really good days although it looks like he will need a platelet transfusion as well as another blood transfusion possibly by Monday. We still believe God is leading us in the direction of this homeopathic regimen but its frustrating because it can take up to five weeks to see any noticible blood results. The waiting to see if it's going to work is definitely the hardest part. We will continue with this regimen until such time that we are led in a different direction. We pray we are making the right decision. These decisions are agonizing but we know God is in control and we continue to pray that the Holy Spirit will give us strength and wisdom as we continue to do our best for Steven, keep our faith strong, be steadfast, and stay positive.
Wednesday, April 28, 2004
It is difficult to update right now because I so badly want to be writing positive things but unfortunately that's just not the case. Steven has had a very tough last week. There's no point in writing all the things he's going through but suffice it to say he doesn't leave the couch much at all. His nights are restless and he's been running fever most of the time.
We went in on Monday for counts and they all came back worse. I asked if there were ANY number in all those blood counts that looked even okay and Dr. Estrada's answer was "not really." Steven was in severe need of a blood and platelet transfusion as his platelets had dropped all the way to 18 (normal is 250) and his hemoglobin (what gives us oxygen) was 4 where normal is 11. I would say though, after nine hours at the hospital infusion center, Steven looks better and is at least walking a little, will talk a little and is somewhat more engaging with people. I definitely am his source of comfort as he wants me laying on the couch with him pretty much all day long (this has definitely helped save on laundry as there is no point in me getting on "real" clothes since we just cuddle all day!)
Dave has spent many hours talking to several homeopathic physicians around the country and they are adamant that this Protocel can work. The consensus was that Steven was on too small of a dose so we've doubled it. The Protocel causes significant "reactions" and doubling is a cause for concern but at this point the Leukemia is growing rapidly so we don't have a choice.
Boy, as I just re-read what I've written so far it does sound pretty dire doesn't it? Dave and I have NOT given up hope but we are hanging onto what we feel like is pretty much a thread. We believe though with little daily threads of hope from God, together they can be strong enough to beat this nasty disease. We still feel led to follow this road as we know chemo at this point is just a band-aid. We take it one day at a time and make decisions that we pray are the right ones for Steven. We continually pray for strength and where no decision has been easy, somehow our family is making it through hour by hour--this has to be God's grace. We don't want people to feel sorry for us--it could be worse and we still have many blessings in each day. We just ask for prayers for Steven's healing.
What now? As I shared with a few friends, I am trying hard to create something positive from each day and find just one blessing that will carry me through till the next one. Dave is trying to work as he can and fortunately we have many friends who have done so much to help. Last night before bed Meredith told Steven she loved him and he responded "I love you too, Mere". Just hearing him say those words was, for me, the blessing of the day.
My parents drove down from Chicago last week to help. As unbelievable as it may be, a couple days after being here my dad suffered a mild stroke while he and I were riding in the car together coming back from Super Target. It was very scary for me as "Grandpa Charlie" is NEVER sick! My mom and I rushed him to the hospital where he ended up spending a day and a half. After many tests they determined it was a TIA which is a "mini" stroke that serves as a warning. We appreciated that Dave's dad Ron came here from Georgetown and helped by playing games with the girls and cuddling with Steven to help ease tension from the day.
Fortunately my dad's tests came out all good, he's now on blood thinners, and he had no residual damage from the stroke. Two days later he was back to normal and helping out around our house! My brother Tony, flew down from Chicago immediately to help out--THANKS TONY!!! My parents and Tony left yesterday to drive back home so my dad could have the additional testing needed to make sure all was okay.
We're hanging in there. It's tough yes, but we will make it through all this. We believe God only works for good, and as difficult as it may be to see the "good" in any of this, it will become more clear as time goes on and we look at it from the "rear view mirror."
Steven will probably need another blood transfusion this week so I'm taking him in tomorrow to have his counts checked again. Thank you to everyone who's donating blood and platelets. I always say a prayer of thanks as the nurse hangs the IV bag full of fresh, good blood to transfuse into Steven because without blood transfusions he (and so many other kids) wouldn't still be here. THANK YOU DONORS!
Hopefully in the next couple of weeks' we can say that the Protocel is doing something positive and that Steven is getting better. Thank you for your continued prayers.
Lisa and Dave
We found out yesterday that Steven has developed a very serious viral lung infection. This can happen to cancer patients when their white blood counts are very low as Steven's are (you can't transfuse white blood cells --chemo and other cancer factors just knock them down to zero). His doctor does not believe Steven will live through the week. We've been very candid with the girls and are living very acutely in the moment.
Steven is on medication but Dr. Estrada believes at this point it won't work. Steven's not really in pain just very, very tired. His little body is working so hard. He still has shown us his "spunk" by occasionally smiling, talking a little and yesterday even playing a little joke on me saying "made you look" when he told me someone was at the front door when they weren't.
We are praying every moment for healing and peace. This is so very hard. We take the decision making hour by hour. We ask for prayers that God be with us and surround our family during the next week. We still believe in miracles and Steven's healing will occur--either in Heaven or here on earth.
Tuesday, May 4, 2004
Today is a gift. "Gift" truly is the only word I can use to describe the events occuring over the last 24 hours. Steven's still here and things have turned just a little.
As you can imagine Dave and I have slept very little since being told that Steven wouldn't make it through the week. Steven was exceptionally weak and feverish, was having pains in his chest, and he couldn't talk very well. Both Saturday and Sunday night we had, as hard as it was, given him to God saying if it was time then we were ready to let go. At 2:30am Steven had a high fever and was very restless. He asked me to hold him very close, so close he wanted my cheek next to his. He said "Hold me close because something's going to happen to me." I was silently crying as I was telling him about how God and all His angels were here to take care of him and Steven said "yes" as if he already knew. I thought for sure he was about to leave us but instead about 20 minutes later his fever broke and then he fell into a pretty good sleep. I was very confused but thankful.
Sunday Dave and I spent a lot of time trying to prepare ourselves for what was to come. It's such a hard thing to do. It's almost like time stands still. We were going through the motions, Steven was miserable and we kept wondering--is this his last day? When we go to bed will he wake up in the morning? Even though Dave and I have a very clear understanding of Steven's risk of losing his Leukemia battle, being told your child will not live through the week creates such intense anxiety. When you feel like hope has been taken away the waiting is definitely the hardest part.
Steven had an exceptionally hard night Sunday night. I was really struggling with watching Steven seem to have a tough time breathing. I didn't know if I could watch him suffocate. We had always said we wanted Steven at home when he died but now I didn't know if that would be the best thing. Everything seemed so "foggy", jumbled and so very confusing.
And then we received a gift. Steven did make it through the night. He did, however, wake up with a nose bleed and then proceed to start coughing up little blood clots. We took him into Dr. Estrada to do blood counts before heading to the hospital for a much needed blood transfusion. As we were sitting in the office talking to Dr. Estrada, Sue, his nurse, walked in and said "The lab just called and now they believe Steven has a gram negative rod bacteria--not a viral (fungus) lung infection." All three of us just sat there stunned. What was originally told to us as being definitely fatal--here now we have hope.
Here's the medical part. There are many, many different types of bacteria, fungus, and virus'. Labs take cultures and in 12 hours if anything at all grows out they call the doctor with what it appears it may be (they are looking at microscopic things with only 12 hours growth). They do this so the doctor can start any meds immediately in hopes the infection won't get out of hand. The final cultures and sensitivities take 72 hours before they have a big enough "colony" to truly determine the exact bacteria or virus and what, if any, medication will kill it.
What initially appeared to be a fatal lung fungus, they are now saying is instead a very serious gram negative rod bacterial infection called E. Coli. As serious as it is, at least we can try to attack it with powerful antibiotics. Dr. Estrada ran another culture yesterday to make sure the same bacteria grows out again. There are things like "over growth" where two bacteria can grow at the same time so they need to re-culture to ensure they have the right antibiotic.
Obvisously Steven is still in a very precarious situation. He had a severe reaction to the platelet transfusion where we watched his temp rise to 105, he needed oxygen, was vomiting, and his heart began racing way to high. It was a scary time but over an hour or so he stablized. They were able to finish the transfusions which have seemed to help by stopping the nose bleeding. His chest pain has also diminished because he has more blood circulating in his system now.
We're not anywhere "in the clear" as they could call tomorrow and say a new bacteria is growing, and we still are too soon into it to know for sure the antibiotics in him now are killing the bacteria. When things had "calmed down" a little and Steven was asleep, I walked to the hospital gift shop to buy a magazine. As I was checking out I saw a little porcelain gift card that said "Hope is born again". For today it truly is.
So many people have emailed us in the last several days. We've read every one and said a prayer of thanks for them all. It helped both Dave and I to get away for a moment and read the encouraging words with promising bible verses, words of care and concern, so many prayers, and hope. One person I didn't know wrote how cancer is such a mysterious and unpredictable disease and truly only God knows when He's bringing the person Home.
Steven is still fighting, he's tough and yesterday even as he was feeling miserable, had a bloody nose, and was coughing up blood, he said "Mom, it's okay to be sick because I get presents' and it's not even my birthday." Here he is, in his situation, and he's still looking at the positive side of things.
We are going to Dr. Estrada's everyday so Steven can get the IV antibiotic infusion and check counts. We should know more in about two days as to how his body is responding and if the infection is getting under control. We'll update more in a few days.
The prayers of the many are being heard. Thank you.
Its been several days since we have updated. This has been an uncertain week full of peaks and valleys. We have gone from Steven having a non-treatable fungus infection to a treatable bacterial infection, from home health care to now lining up hospice care, from Steven walking at the zoo to being unable to walk at all, and from no pain medicine to now needing Morphine around the clock. Its amazing to me how unpredictable life is and how quickly things can change. I guess you could say that it is predictable that life will be unpredictable.
Its been a week filled with both goodness and mercy and also physical and emotional pain. We are looking at this as a journey with God who is in complete control of the destination. Our family is along for the ride and trying to learn, grow, and see the blessings in this experience as best we can
Now to the important stuff---Mothers Day. I have had the privilege to be married to my best friend on earth for the past 15+ years. I know that each one of you have mothers and spouses that you feel are the best as wellas it should be!! I want to talk about mine today.
There is not a Hallmark card that could appropriately describe the depth and character of Lisa. This hardship that we have endured has allowed me to see on a daily basis the righteous character of my wife. Unfortunately in life, hardships have varying degrees of difficulty and Stevens situation has been a tough one. Through it all she has stayed faithful to her God and family. She has been unconditionally positive and encouraging to every member in this family. She has exhibited courage, love, and tenderness that I am not sure that she thought possible. She has never once had pity on herself and has remained steadfast in her faith. She is the reason all three children have been able to cope with the difficult situation at hand. Most importantly, as miserable as Steven feels at this point in the journey, he still has smiles for his mom!
Lisa--- youre the best!! May God continue to bless you and give you the strength you need to persevere.
(obviously this picture is from awhile ago but it shows how Steven still likes to give kisses to his mom!)
Tuesday, May 11, 2004
Here is a picture of Steven smiling (yes-smiling!) with his soccer trophy and medal beside him. Steven relapsed a few days before his first ever soccer game last month. He only was able to go to one practice and one game and he loved them both. Not much has brought Steven to smile--but these did it. He has wanted them on the table next to him every minute. He was very proud of playing in that game. Thank you so much Neff and the rest of the Lizards team!
Steven is doing a little better now that we have some pain management issues under control. He does need Morphine around the clock since his leg and overall body aches and cramps are bad. Having Hospice come has been a very good thing. Right now they come once a week to help with the pain management but we know the day may come soon when we need them daily--we don't know and we've come to expect the unexpected. Yes the thought "will he wake up tomorrow" does enter our minds every night when we go to bed, yet just when we think it may be over he'll surprise us with a smile, an attempt to walk, little conversation, or an out-of-the-blue "I love you". This isn't easy but as we've said--God IS in control and we will make it through.
This difficult week has allowed us to talk very candidly to the girls about God, angels, heaven, dying, and what's really important in life. A few weeks ago in a conversation with Meredith I said I believed that God only works for good (Romans 8:28) and though we may not understand it --some day it will all be made clear. A couple of days ago when she happened to see me upset she recanted the same thing back to me. I felt proud that she had remembered our earlier conversation and that it brought her and me some comfort during a tough day.
Today Steven had another platelet transfusion. We were a little surprised by the fact that his red blood cells are still holding and his white blood cells increased just a little so his marrow is still producing something. What does this mean? At this point we really don't know except that today is a good day. We are continuing the Protocel and many other supplements to help his body stay hydrated and give him the nutrients he needs in case the Protocel is slowly fighting the cancer. We don't know but we're not giving up hope.
We so appreciate the many emails we've been receiving--the hope, concern and care is so evident and every email, card, or call helps give Dave and I the strength to make it through another day. I wish I could talk on the phone more but it's difficult because Steven wants me by his side constantly and it's hard to talk candidly with him right next to me. Please know how thankful we are to have friends, family and others who care so much.
A couple of days ago when I was having a particularly emotional day Steven said "Mom, when you sound sad, it makes me cry." I think he's so used to my upbeat tone. It must help him feel better. I know God has given me the strength I have needed this last week to be more upbeat and "normal" for Steven and the girls. Yesterday I had to place a needle in Steven's port (crab) in his chest to give him an IV antibiotic (you'd think I was a nurse by now!) and I promised him I could do it without it hurting. After I did it he said "Mom, you are always right!" That made my day. All I have to do is think of him saying that and even during the tough moments we've been having--I smile.
Friday, May 14, 2004
There are times in my life where I feel God almost everywhere and in everything--days where I wake up to a much needed bible verse sent to me via email, to a friend doing a random act of kindness that is just what I needed, to hearing just the right song at the right time that helps me get through a tough moment, to reading a card or email that gives me the feeling that I'm not in this alone That is exactly how I am feeling today. Today I feel more at peace, strengthened, and lifted up. These feelings do not correlate with how well Steven is doing at any given moment--I just believe God is using so many different avenues to give Dave and I the strength to make it through whatever the day is bringing.
Steven has developed what may be just a cold but also is now an ear infection. A minor thing in most kids but in him it can create many other problems because he's not drinking hardly anything. If the Protocel is doing it's job it is critical that Steven has enough fluid in his system so it can eliminate the cancer toxins.
Steven's pain seems to be a little more under control--he still has leg and joint pain but at least now I can touch him without him wincing in pain. We are alternating between Morphine and Codine which seems to be helping. He even surprised us a few days ago by taking a few steps--wobbly-but he did it! He finally was strong enough to shower and even stood up once saying "Look at me mom!" with a grin on his face. He still looks pretty beat up and almost all of his day still is spent laying on the couch or sleeping but he has had more "better" moments over the last several days.
I took him in to Dr. Estrada's today to check his ear and blood counts. To our surprise his counts have held again and his ANC (the number that shows his ability to fight infection and a sign that his bone marrow is working) went up somewhat significantly. I couldn't stop smiling. Steven is feeling really bad but the blood work is saying that his body is not giving up and appears to be fighting the cancer. Sue, our nurse (Dr. Estrada was out of town), told me that Dr. Estrada does not have an explanation for this saying "These numbers are not what we would expect at this point." They would expect all his blood numbers to continually be going down as they had been over the last four weeks.
This means something good is happening but they can't explain it. I told Sue "I believe this is God at work." Dave and I are walking on faith. We have seen things change for the better and for the worse so we're just going to take today's good news as a gift from God and continue to pray for more good reports.
A friend asked me today when we would know that Steven is getting better. Wow--that was a hard one to answer. My first thought was-- if he's still alive three months from now--then that means he's probably getting better. The road to recovery can be a very bumpy one but hopefully if that is God's plan we will be able to handle whatever bump comes our way. Even if that isn't God's plan--He truly is giving us the strength to make it through. I prayed on Monday night for God to help make the decisions more clear--and He did. On Tuesday, Dave and I saw a small but significant increase in Steven's counts so that gave us the courage to stay the course.
We received several emails from people at our church saying that a group of people were going to do a day of prayer and fasting for Steven. It's hard for me to even write this without crying. Dave and I were so very humbled by that act of kindness, care and concern for a child some of these people have never met. Yesterday, as I sat next to Steven, I thought about and thanked God for all the people praying for Steven's healing. Steven was not having a particularly good day thus Dave and I were a little on edge. It helped both of us make it through the day knowing that God was hearing the prayers of the many --thank you Emily Bush for having that on your heart to organize something so special.
Upon leaving Dr. Estrada's office I turned on K-LOVE in the car and the song that just started was called "God is in Control". And then after coming home and getting Steven settled I went up to the computer to check emails. The first one to pop up was the daily one I receive from K-LOVE. The bible verse for today was "God saved you by his special favor when you believed. And you can't take credit for this; it is a gift from God." Ephesians 2:8 NLT. Like I said--for me today God is everywhere helping me keep my focus on Him.
Today's a-little-better blood counts are a gift. We hope and pray that Steven's bone marrow will continue to heal and that the good cells will slowly overtake the bad cells and lead to Steven physically being able to feel better. We're not going to worry about tomorrow--just be thankful for and enjoy God's gift today.
p.s.--Happy 66th Birthday Grandpa Charlie!
As anyone with young kids knows-Shrek 2 comes out this weekend! Our family is definitely a fan of the first Shrek movie. Here is a pic of Steven and daddy watching the DVD release of the Shrek 3D mini movie (yes, it's only 16 minutes long and we've watched it now about twenty times!) It would be a huge blessing to get Steven to go to the theater and see Shrek 2 but that is unlikely given how he feels today. But who knows? Things can change and we have hope.
This picture reflects the good moments Steven has had, unfortunately the more difficult moments have far outweighed the good ones this past weekend. Steven is again feeling a lot of bone pain and has needed morphine or codine around the clock. He winces everytime I touch him and becomes almost rigid when I carry him to go to the bathroom. He's lost eight pounds and is struggling to drink enough. We have to do IV infusions of fluids every couple of days to make sure he's hydrated.
Over the last four days, the best time we've had was when I was able (with a lot of coaxing) to get Steven into our jogger stroller and out for a walk. He ended up talking more than I've seen in almost a week. He asked some unusual questions ranging from "If I put a wish under my pillow and it's gone in the morning does that mean my wish will come true?" to "Why do squirrels hop when they run?" It was a special walk just going slow and sometimes not saying anything but really enjoying the sounds and the breeze. We collected dandelions to make a nice little bouquet (I picked them but Steven directed me where to go.) During that walk I was blessed to catch a glimpse of our "real" Steven.
Besides that special hour, many more hours have been spent trying to alleviate Steven's pain, rubbing his legs (if he'll let me), and trying to bring him some comfort. Most of the time he doesn't want Dave or me touching him and when we do he is so sensitive that he starts crying at the littlest thing. We're all on edge trying to help him feel better. I miss his laughter and "jokes", I miss his wanting to cuddle constantly and wanting to socialize with people. I miss his waking up happy. It's so hard and so draining to see him like this every day. God truly is helping Dave and I with needed daily strength because we absolutely know for certain there is no way we could get through this on our own. A couple of days ago, Steven's arms and hands really started aching. He asked me if I thought his hands would "work" by halloween because he wanted to make sure he could hold his trick or treat bucket. He is such a brave, spirited and courageous little boy.
A few nights ago as we laid next to eachother, Steven did not want me to talk at all or even touch him. I said "can we just cuddle feet?" which is what we started doing when cuddling hurt his arms too much. He said "no--just go to sleep." But about a minute or two later he slid his little foot over and just barely rubbed it against mine. It was such a special blessing. Steven's still here--he's just inside a little body going through a lot of pain while it's trying to fight off this nasty cancer.
We took Steven in today for both a platelet and red blood cell transfusion. We had some mixed results from the blood counts. His WBC went up a little and his percent leukemia blasts went down to 34% from 38% which appears good but his ANC (his ability to fight infection) went way down from 1000 to 180 so now he's neutropenic again. Steven is still fighting this very stuffy nose thing so maybe his WBC's are being used to fight that as well. These numbers can be so very confusing and sometimes Dave and I feel just when we've taken a step forward we then end up taking two steps back. We just don't know--but we do have faith.
Dave and I had a chance to review the last eight weeks of blood counts and we believe the Protocel must be doing something because some of his blood numbers are unexplainable as to why they are not getting worse as would be expected given Steven's disease state. Yet some have fluctuated up and down so we think it's too early at this point to really know definitively. After this long day at the hospital for his transfusions and looking at so many numbers, I told Dave "Maybe God wants us not relying on the numbers to give us our hope--but just trust and have faith that God will do what is best." When I think about God being in control it brings much more comfort than trying to "guess" what all these numbers mean.
It's so tough on Dave and I to write about the more difficult things going on as we really would love to be talking about the good but the reality is it's hard right now and we don't know what the next week, much less the next day, will bring. This week, when I've had a few tough moments, I thought of a saying I read of Maya Angelou's where she writes "Just because I have pains doesn't mean I have to be a pain." Both Dave and I are trying to stay as positive and upbeat as possible.
Even though our family is dealing with tough issues right now it makes us focus even more on the good parts of day. For today Dave and I are thankful for a successful and calm blood transfusion, Steven's again rosy cheeks (thanks to new blood), a nice dinner brought to us from a friend, my girls' who were excited to tell us about their day at school, and the hope for an even better tomorrow.
May 21, 2004--E. Coli infection
An Update from Grandma Judy
My daughter, Lisa, has asked me to update the web site for her. The last few days have been very difficult for little Steven. He has had a severe infection and is running 104 degree fever. To relieve the bone pain, Steven continues to be treated with morphine and is lethargic. Because of all of this, today Lisa and Dave have decided to admit Steven to the hospital. Dr. Estrata has done a bone aspiration and the results were that Steven blasts (leukemia cells) are at 91% in the bone marrow and in the peripheral blood the count has gone from 34 to 43. They will be treating the infection in hopes that Steven will become more alert.
Lisa and her family are so grateful for all the people who have been concerned and offering prayers for them. It is amazing to see how often this website is viewed and how many caring emails Lisa and Dave receive.
On a personal note, I would just like to say that I think my daughter is quite a special person. When she was a little girl she was always upbeat and smiling. But during this time, Lisa has shown qualities of strength, optimism and faith that have awed all of our family.
I fervently wish she would not have had to go through all of this but we are very proud of the way she has handled it and her family. We love her very much.
Dave too has shown a strong faith and determination during this time of difficult choices. I know that he has been Lisas strength whenever she has needed it. They are a truly loving and gifted couple. We are love them both very much.
The picture I have chosen to use is one from our annual trip to Tulsa for Thanksgiving. It is from 2002 and reminds me of all the fun times Steven and I had feeding the ducks and taking nature walks.
A note from Dave
Our prayer this week was that we hoped for more definitive answers regarding our course of treatment and our prayers were answered. If possible, we will try to treat the infection and buy some time so that we can plan and give our family a chance to have maybe a few more good days. It is comforting to know that Stevens salvation is secured. It is also comforting to know that Jesus only requires us to have faith as small as a mustard seed for mountains to be moved and miracles to happen. We cant thank you enough for all of your prayers and support throughout our journey.
Sunday, May 23, 2004
After entering the hospital on Friday, I just now had a chance to come home, shower, and "re group" a little. Steven is hanging in there. He still is running fever most of the time and his morphine dose has had to be increased. The morphine makes him not be able to talk very clearly and yesterday when I asked him what he was trying to say I finally figured out he was saying "I'm trying to practice my talking!" He sleeps in a very light sleep most of the day and hasn't moved from the bed the entire time. He's very edgy and irritable yet at times he'll be very sweet like when the nurse was taking his blood pressure and she hurt his arm when she moved it--she said "I'm sorry Steven--did that hurt?" And he replied "That's okay--it hurt just a little--not a lot" when I knew it probably did hurt a lot. He's hanging tough and has even talked about when he gets better things he wants to do. I have my bed placed right next to his so Steven and I spend a lot of the time just holding hands and watching cartoons (Spongebob is both Steven's and my favorite!)
It looks like the infection is another Gram Negative Rod-- probably E.Coli. It could be that the other infection never cleared or that it re invented itself, this time worse--we don't know. We admitted him because his pain was more than we could handle at home and we knew he could get IV antibiotics quickly at the hospital. Upon going to Dr. Estrada's on Friday we decided to do a bone marrow aspiration to help Dave and I make some decisions. With 91% leukemia in his marrow obviously it doesn't look good. When we asked Dr. Estrada's opinion of whether he would treat the infection if it ended up being a treatable one, he responded by suggesting "it would only prolong the inevitable."
Dave and I decided, however, if we found out it was a bacterial infection we would go ahead and treat it--because we can. It may be too far along to kill the bacteria and it could be that Steven's body is too weak with Leukemia to help fight it off--once again, we don't know. We have not stopped the Protocel at this point because it's not hurting him to take it as he's on morphine anyway. As his parents who love him very much we feel we are making prudent decisions yet we will have hope until the end.
One of the pastor's from our church came by and I told him how I know God is helping us through this--I just don't "feel" it right now. In fact, Dave and I aren't feeling much-we're just trying to help Steven and the girls make it through each day. He said "You may not "feel" God right now--you just need to trust and have faith that He is with you and will guide you and give you the strength you need." That really is the true meaning of faith.
The girls are being taken care of mostly by Dave and we have lots of offers of help from friends. My family has offered to come down but at this point we still are uncertain as to what is going to happen so right now it's just a day by day thing.
Once again, thank you so much for your prayers and kind emails, cards, and calls. We appreciate them so much. In so many different emails people have shared with us how Steven's situation has, in some way helped them, made them stronger, made them take time and hug their kids more, improved their faith, brought them closer to God, helped them pray, and more than a few have even said Steven has helped change their life. It is encouraging to Dave and I to hear that something good is coming out of this because at a time like this, it's hard to see the big picture when we are watching our little boy suffer. As Dave said--all it takes is faith as small as a mustard seed to move mountains. Whatever the outcome --we do have our faith to help us through.
We'll update more in a few days. Once again--thank you so much for your prayers.
Saturday, May 29, 2004
After eight days, we are back home again. This is a picture of Emma cuddling with a very tired Steven. I keep telling the girls even though it's hard for him to show it--he really is happy to be home and with his sisters' again.
It appears the E. Coli infection is clearing. We are doing IV Gentamycin three times a day at home through hospice care. He needs to be on IV antibiotics for 14 days. In the hospital Steven was battling high fevers due to the infection and then they couldn't get his temp over 95 degrees for two whole days, to the day we were leaving spiking a 103 fever. Dr. Estrada believes the fevers now are Leukemia fevers and not infection (although sometimes it's very hard to distinguish between the two) so we decided to bring him home. Steven had a few hard nights there and on his last night he ended up sleeping an entire 24 hours. When I woke him up to say we were going home he started crying and said "that's great". Right now the way he shows any emotion--happy or sad--is by crying.
When you think of bringing someone home from the hospital you imagine bringing home someone who is somewhat healthy again. In the Leukemia world sometimes that just isn't the case. You could go in and out of the hospital several times still with a very sick child. That's where we are at this point. We are so grateful to get through a second "he's not going to make it through the week" thing, yet for us and our girls, the homecoming is bittersweet since we are bringing home a boy who doesn't feel much better. This journey is still unfolding and every day it becomes even more clear how it's God who's in control and whatever is going to happen will be in His time.
God has shown us so much grace this week through the incredible team of nurses on the Oncology floor at Methodist, to a much needed visit from one of our pastor's, to tender moments shared with Steven. He is so edgy and irritable that he still hasn't wanted to touch much but a few nights ago at about three a.m. he woke me up saying "hey, mom do you want to hold hands again?" I almost started crying I was so happy to hear those words.
With Steven sleeping (lightly) most of the time the last several days there, I spent a lot of time in prayer and reading the bible. I started marking all the verses that had to do with enduring, perserverance, suffering, God's grace and unfailing love, hope, and faith--there are SO many. There would be too many to list here and so many more have been sent to us via friends. We have come so far on this Leukemia journey and truly the only thing that brings some sense of comfort are those words. Dave's and my Christian faith has grown exponentially over the last two years --we still ask those hard questions and we still don't have the answers but we know God will take care of our family.
One big blessing coming from this week is that Emma's 8th birthday is tomorrow and Dave's birthday is Tuesday--we are so blessed to be home as a family to celebrate together. Maybe a little family celebration will be just what Steven needs to help him want to eat, sit up, and maybe give Emma and his daddy a little birthday smile--what a nice present that would be!
Nancy, our wonderful hospice nurse is still coming once a week to ensure Steven's pain is under control and we go in to Dr. Estrada's office on Tuesday because Steven will probably need another platelet and blood transfusion at that time. Thank you to everyone who went and donated platelets when Steven was in need of them this past week--we really appreciate the time and effort it takes--thank you. We will check his counts again which should somewhat indicate if the Protocel is doing anything, yet the real answer will come if Steven starts feeling any better and will start eating more.
For now we are going to do the best we can by celebrating Emma and Dave's birthdays', taking walks to help the girls "talk" things out, lay next to Steven and offer comfort, and just appreciate God's gift of bringing us together again home as a family.
Dave and I have been hesitant to update because right now we are at a loss for words that express the emotions going through our family. We did get to celebrate both Emma and Dave's birthdays. Even amidst all the "hard stuff" with Steven, we definitely had real smiles watching the excitement on Emma's face all throughout her birthday. Her favorite part was us singing Happy Birthday to her at exactly 2:02pm which is the time she was born eight years ago. Emma even commented that this was the "best family birthday ever." We were a little worried since I had told her we couldn't plan a big friends birthday party but she handled it wonderfully and we know she genuinely felt special on her big day. Thank you to everyone who sent her emails wishing her a happy birthday--she read and re-read everyone! The only hard part was that Steven felt so bad that day that he really wasn't a part of her celebration. That was hard on us but we made it through.
Dave's birthday was two years ago to the day that Steven was admitted to the hospital for the bone marrow transplant. He was not particularly looking forward to this year's birthday but it ended up being a very special one. Steven actually was awake, engaging and really wanted to give his daddy his present which was a DVD of the movie "Miracle". We also surprised Dave with a canvas print of Meredith, Emma and Steven holding hands in the spring bluebonnets I had taken about a week after Steven relapsed in March.
That day was a happy day where I took the kids out of school, secretly had their pictures taken and then we all had a fun family day going to Steven's favorite place--Malibu Grand prix and racing cars, boats and playing mini golf. I planned to take these pics on a very short notice and I'm so thankful to Brenda Bertram for getting me in the next day and to my friend Lisanne for helping me pick out the outfits the night before. It was such a blessing because picture taking can be so stressful yet, even with day-before-planning, it went so well and the picture turned out beautiful. We all got a little choked up as Dave opened his special gift.
As I re-read what I've written it helps me to see that we have had a few good days in the last week because in reality, medically and emotionally things are very tough. We took Steven in for counts on Monday and they are about the same. His temperature ranges from 94-103 at any given time. He is very tired and edgy yet he isn't complaining about leg or arm pain nearly as much. We wonder if it's just that his pain threshold has increased. We have seen some "lysing" (the elimination of toxins--cancer etc.) of the protocel so we believe it is doing something yet wondering if it is doing enough.
He has lost more weight and is now down to 32 lbs. We made the decision to start TPN (IV nutrition) for two weeks to see if we can get enough nutrition in him to give his body enough energy so Protocel can have a chance to work. In two weeks he will have been on the increased Protocel dose for six weeks. If at that point we don't feel it is working we will then make some very difficult decisions.
We have prayed so many times for God to guide our decision making and for so long we both have felt "led" in this direction. Now, however, both Dave and I feel very confused. We want God to lead us yet maybe in our "humanness" we're not seeing where He is leading us because we don't want to go there. We didn't want to have to make the decision to stop everything because it feels like we are just giving up yet that just may be the decision we are going to be forced to make.
I'm reminded of the familiar poem "Footprints" where God is walking on the beach side by side and just when things are the most tough there is only one set of footprints. The man asks "God, why at the toughest time did you leave me?" and God answer's "It was then that I carried you." I sure hope God is carrying our family right now. We have faith yet we feel confused and alone. Someday it will be made very clear but for right now we have to hold onto the fact that God knows Steven's plan and we hope we are making God led decisions, not selfish decisions.
We are hanging in there and still make each other tell at least one blessing from each day. At this point they are very simple ones like Steven sitting up long enough to color a smiley face or seeing him smile at a cartoon. We ask for prayers that we can continue to see the positive and that God will "carry" us through this uncertain time.
We'll update more next week. Thank you again for all your caring emails, cards and support--the support we are receiving is much needed and appreciated.
Whenever I update I usually look for a recent picture that shows what's been going on with Steven. Unfortunately, the picture above still best describes how he is doing. I'm not taking many pictures right now so I think I'll leave this one on for awhile.
Steven still continues his fight. He's such a strong, positive boy. At times Dave and I get frustrated because if we ask him if he's in pain he'll say he's not when we know he is. He had a blood and platelet transfusion on Tuesday. His elbows, hands, feet and eyes continue to stay swollen. Usually the platelet transfusion helps with swelling but this time it doesn't seem to have done much in the way of relief. We know he is a very sick kid. He is showing signs of too much protein in his urine which could be a lysing symptom from protocel or also renal and/or liver dysfunction. He continues to need weekly blood and platelet transfusions. The TPN has helped him gain weight and hopefully will give him the nutrition that he needs to have his liver recover -- if the problem has been caused by malnutrition. .
The real blessing today came this morning as Steven, Emma, Dave and I were just hanging out together in our bed. Steven was the most "happy" he's been in a very long time. I had given him some Bubble Tape Gum as a "prize" for drinking lots of water (he's definitely motivated by prizes!) and we all had a bubble blowing contest. Emma had him truly giggling, smiling, and outright laughing. We were so amazed to be seeing him so "normal" and happy. Both Dave and I did not want that moment to end--it brought us back to the real Steven.
For awhile we had eliminated most sugar from Steven's diet really focusing on trying to get him to eat healthy food--now we're happy if he eats anything. When I gave him today's treat of bubble gum he was so excited saying "Mom, I wish candy was healthy--that's all I'd eat!" We then talked about how neat it would be to have our whole house made out of candy. He decided pillows would be cotton candy, and our wood bed would be chocolate. We all really enjoyed imagining our "candy house".
Dave and I feel very blessed to have had that incredibly special morning with Steven. The rest of the day has not gone as well. He now has a 102 fever after a low temp of 95 yesterday. He's been sleeping most of the day since he had a very restless night last night. Over the last several days when he's awake, sometimes he will draw or paint a little. Yesterday Dave and Steven made a wooden train that he enjoyed painting.
Overall, we still have some good moments yet they are all relative. He's such a trusting, caring and loving little boy. Lately, as Steven lays on the couch or our bed, he's been into wanting me to "flip" his pillow to the cool side or as we call it, the cool and cuddly side. Sometimes I do this many times a day and night. Almost everytime I do it I tell him I love him and most times he doesn't say anything in return. Last night he said "I love you too, mom" not once, but three different times! At this point, I never know when the last time will be that I'll hear Steven say those words so I hold every one as a very special blessing.
We continue to be so thankful and feel encouraged by your prayers--God is in control and we know He is giving us strength to make it through.
Here we are a week later from the last update and as much as I wish I could be writing that things have become a little better, they haven't. Steven's platelets dropped entirely too low--down to 2 so he was really in pain, not moving, needing morphine and all in all in bad shape. He had a much needed platelet transfusion on Monday--which brought him some relief.. We are planning on doing platelet transfusions now twice a week as needed. Once again, THANK YOU to all the special people who are donating platelets and blood for Steven--we can't say enough how much that helps us and so many other kids needing blood.
As Dave has said--symptomatically he's doing worse but we really don't yet know what may be happening at the cellular level. It's hard when so many side effects from his condition could range from organs failing to his liver just de-toxing the cancer toxins. He is urinating fine and when he's not on morphine he is engaging, will occasionally smile, and even have a few mini-conversations. Yesterday, without even being prompted Steven wished my friend Sue "happy birthday" when she stopped by for a quick visit.
It's very hard when the path is not clear. His blood reports are not falling as fast as we would think they would if everything is failing but at this point we just don't know. We took him off TPN for a few days since he's gained some weight but now looks like he has too much fluid on him. After talking with Dr. Estrada's office, we're starting some Lasix to hopefully drain the extra fluid. After getting counts, Steven will go in tomorrow for blood and platelet transfusions where he will have labs drawn to look again at his liver and kidney function.
Recently in talking with a friend, she mentioned since God gave parents the ability to love their children so much, He would want us to do everything thing we can to comfort, protect and care for them. That's what we feel we are doing right now. Everything we are doing with the Protocel as well as the other meds Steven is on is to help him with the symptoms, ease his pain, and hopefully bring him some comfort. With God's grace maybe it will lead to an earthly healing--and maybe not. As Steven's parents, who love him so much, we are going to do what is reasonable to help our son.
The bible I use is a New International Version Life Application Bible. I like it because it gives little snippets at the bottom of each page that help explain the bible verses and ways to apply them to our everyday life. I can't remember what verse I was looking at but what I do remember is the paragraph at the bottom that discussed providing for our children. It said "All children need to feel secure is a loving look and a gentle touch". As scary, tiring, emotional and frustrating all of this is, the best we can do as parents is to provide Steven and our girls' with a strong sense of security and love. Dave and I have both repeated that phrase many times--it helps calm us down when things get tough. Basically, we're doing what we can here on earth but we fully realize it's in God's hands --so we rest in that knowledge.
I liked the KLOVE bible verse sent to my computer a few days ago--it read "For God is not a God of disorder but of peace." 1 Corinthians 14:33. At some point some "order" will be made of all of this but through it all we take comfort in knowing that God will continue to give our family the strength to persevere.
Monday, June 21, 2004
Steven is such a fighter. It's amazing to Dave and I how even though he can't walk, he's running high fever's, his elbows and feet are severely swollen and bruised, and his eyes are almost swollen shut, when we ask him how he's doing he usually responds with "good" or "I'm okay" like someone who's trying to tell themselves they are okay when they really don't feel okay. At a time like this we are also surprised that when we ask him if he'd like some milk or something to eat he still uses such nice manners saying "no thank you" or "sure". He's a strong boy who given his situation still has such a good attitude. We are still struggling with trying to guess at how much pain he's in because he won't ever say anything hurts. He very clearly isn't feeling well but when we ask him what hurts he'll say "nothing." We have been giving him morphine when we think he really needs it which is now most nights. There are some definite benefits of morphine because we think it makes Steven have some good dreams! He woke up late last night and was clearly excited to tell us about a dream he had where he was driving a black race car--really fast!
The interacting is getting less and less, however. That part is exceptionally difficult for me. For those of you who know Steven, he is such a talkative little boy who has never ending questions, comments and ideas. Now our "conversations" pretty much revolve around medicine taking, food, bathroom, and Dave and I saying "I love you" to him--hoping he'll say it back. He's just so very tired. We know he wants us near but now he doesn't really want me sitting right next to him, I think for fear of me bumping his foot or arm or something. He wants the girls around and they are so good about talking to him yet he really doesn't answer much. We know this is hard on them as well.
After Friday's transfusion he must have felt a little better because in the middle of the night he rubbed his foot against mine. I instinctively pulled away knowing touching my foot to his would hurt him. To my wonderful surprise he said "mom--I want to cuddle feet". That was such a huge blessing in my day since he's not initiated any touching in awhile now. We laid in bed just touching our feet together for a whole five minutes or so before he pulled his foot away and fell asleep. I can't tell you how special of a moment that was for me--I miss our cuddling so much. He's always been a boy who LOVES to cuddle (and sleep in our bed!) so it's been hard watching him pull away and not want affection.
His platelets and RBC's are not holding as much so he will probably go in for another blood transfusion on Wednesday. Hopefully this will bring him some relief.
We are persevering through this but the emotions are high. As I've said before, I know God has to be helping us make it through because there is no way we can do this on our own. Thanks again for all your prayers. We receive so many words of encouragement saying how strong of a boy Steven is. I guess the purpose of this update is for us to say how we agree--Steven amazes us daily, we are so very proud of him, and we are so blessed that he is a part of our lives.
Wednesday, June 23, 2004
The last few days have been probably the most difficult that we have experienced thus far in our journey. Steven's condition has gradually deteriorated and his time here with us will likely come to an end soon. We do not know when that will be and to be honest, I don't know why God hasn't taken him sooner. It may be because Steven has a great will to live and I believe a strong love for his family, especially his mom.
We will continue to try to keep him comfortable with pain medicine, red blood cells and platelets, and hope that as he becomes more tired he will gently go to sleep and then awake into a wonderful Heaven filled with love--one where there won't be any more pain.
There are some things that are explainable and acceptable in this world. I have great difficulty understanding what peace and joy can come from cancer in children but I am sure it will be made clear to me in another life or maybe when I meet my maker I won't care because heaven will be such a wonderful experience. So, as time stands still, we are just going to love him and comfort him and make his remaining time here with us as peaceful as possible. Obviously only God knows how much longer Steven will remain with us--it may be days or weeks but we will continue to do our best to find a blessing in each day.
For now, "We fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:18. I hope that God will grant us peace and mercy during this time.
Thursday, July 1, 2004--A much needed "I Love you"
It's been hard to update because we really have no idea what to say. Steven is still with us but is definitely pulling away. He's on morphine around the clock, is not moving at all, can't be moved to go to the bathroom, is asleep (or a version of it), probably 22 out of 24 hours a day and when he is awake he's exceptionally irritable. It is so hard seeing him this way--we just don't understand it. Sometimes I think this is God's way of helping Steven and I separate from eachother as we've been so very close--as a mother and child should be. It's been hard hearing him say "okay, now go away" and "leave me alone." That just isn't the Steven we know. Every so often, however, we still catch a glimpse of the real Steven. He can't hear very well and a few days ago when I leaned near his ear and asked "Steven, can I get you some fresh milk?" he responded by saying "I love you too" --which just made my day.
I'm not sleeping very well since I lay there listening to his breathing which at times is very irregular, and varies between being very fast to very slow. He's still running fever most of the time and his lymph nodes are very swollen. The majority of the pain is coming from his feet. His left foot became so swollen that it became infected and then opened up. Dr. Estrada has him on antibiotics to help with the infection just from a comfort standpoint. I do think if his joints and feet didn't hurt so much he might be more alert during the day but he needs the morphine to ease his pain.
Everyday we are noticing that he does just a little less. A week ago he was doing a little coloring (still in a laying down position), or a neat bead craft thing a friend brought (he made a beautiful rainbow), but it seems now he gets more frustrated and then ends up falling back asleep.
The girls are doing okay. Meredith is so sensitive and older so she has a lot of questions and is very worried about being away too much. She's always kissing Steven which he has noticed because a few days ago he said to me in his morphine induced slurred speech "Mom, did you know that Meredith gave me like millions of kisses today?" when I asked him if he liked it he said-- "no" --just like a little brother would. I do think he liked it but I'm sure inside he knows that's just not "normal". Emma makes things for Steven and watches Spongebob with him--I know he needs his sisters' close--it really does help him even if he isn't showing it.
Time is standing still. It hurts so much watching Steven in this part of his Leukemia battle but I know the day he leaves us I will still wish for just one more day with him. But for now we leave this, as we always have, in God's hands and trust that His grace and mercy will carry our family through this valley.
Our prayers for Steven are that God's angels are surrounding him and bringing him comfort. We pray that as Steven sleeps his mind is filled with happy dreams and when he's awake that he continues to feel the love his family has for him.
Although all of this seems surreal and hard to understand, we try not to ask the "why" questions and are instead just focusing on finding a blessing in the day and bringing Steven comfort.
Today we took Steven in for a much needed platelet transfusion. He is becoming increasingly difficult to move as he's either in pain or so scared to be moved that he's worried he will be in pain. We have increased his morphine dose which seems to be helping at the moment but were finding that the dosing of morphine is a changing thing. The hardest part of today was taking off the bandages on Steven's feet only to see that they are still seriously infected, open and bleeding. They will not be getting any better. It is a local infection and not a systemic one-- but we know that can change. His body has no way to fight infection and, at this point, further antibiotics will not help. A hospital wound care specialist came to examine his feet and was so helpful giving us some good bandages and supplies to help minimize any local pain. I think his feet hurt only if touched so as long as no one touches him he seems to be okay.
Steven is not eating solid food but drinks a lot of whole milk. He will, every so often ask for food but then doesn't eat it. He has, however, enjoyed Captain America Super Hero popsicles which we find fitting since he is truly our Super Hero. He is running fever and sweating a lot so he is very thirsty which helps him stay hydrated.
Steven's best time for talking clearly and almost normally is about four or five in the morning probably due to the morphine starting to wear off. He will usually wake up, ask very sweetly for fresh milk and still even say please and thank you--that just amazes me. At that same time he usually wants the TV turned on. What he likes to watch at four or five in the morning is the Kids Games and Sports Channel with no volume since he can't hear very well anyway. I give him more morphine at that time so he usually falls back asleep pretty quickly. I'm sleeping on a mattress on the floor next to the couch so I just leave on the TV and turn the other way--I think he finds the lights from the TV comforting. We are doing whatever will bring him some comfort.
Upon leaving the infusion center today Steven was a little more chatty probably due to lots of IV morphine--he said goodbye to his incredibly wonderful nurses and he truly had a content tone in his voice as he said it. We talked on the way home about his beautiful curly hair which when I said "Do you know how handsome your hair is?" he responded with a tired but calm "yesssss mom, you've told me that like a million times!"
As of today, Steven still likes to count before we give him any medicine. When we ask him what he's counting to he'll say "I can count to whatever I want to count to" but we never know what number it is because he counts silently in his head--based on how long it takes we're pretty certain he's counting to high numbers and sometimes he will fall asleep in the middle of counting. Today, before giving him some meds, he asked to count and then after a long while when Dave asked if he was finished counting yet, Steven quietly said "oops daddy, you talked--now I have to start over" and a moment later added "and it's going to take me a long time." We couldn't help but laugh. Steven has such a strong spirit. The sad part is sometimes the only interaction we get where Steven will say anything besides "go away" is when we give him his meds or flip his pillow to the cool side. Unfortunately the positive interactions are very minimal at this point.
After lengthly discussions with our pediatric pain physician and our oncologist, we have made the decision not to do further red blood cell transfusions and let the body take it's natural course. The last transfusion did not provide an increase in his quality of life and he has sadly become much less engaging and continues to be extremely tired. We will, however, continue with the platelet transfusions due to him having two open wounds and the potential for severe bleeding that can occur with low platelets.
After two and a half years of decision making regarding Steven's Leukemia, this is the last big decision we had to make--although a very difficult one, it is one that is done with an incredible love for our child and a strong desire to ease his pain and suffering. Letting go is so very hard but we've been doing it everyday. We know at some point in the next days or weeks letting go will turn into Steven truly being gone. Even as I write this I don't know how we will handle that day--but we will.
Thank you again for your continued prayers--they are very much appreciated.
For somebody like me, whose so rarely is at a loss for words--my mind goes blank with how to start this update. All I can say is, at a time when Dave and I have been both questioning why it feels at times God has been silent, we have been blessed to see God's grace---and that man's name is Dr. Kane.
Dr. Kane is our hospice pediatric pain management oncologist. He called a few nights ago and said "I'd like to come to your house to check on Steven." In this day and age, physicians just don't normally make house calls. Dr. Kane came and assessed Steven and then stayed two hours talking to Dave and me. He told us that he felt Steven's earthly days are probably going to be ending in the next several days--but clearly only God knows when He will take him to Heaven. Steven's hemoglobin is now at about a five which means things are progressing. He also said that he can tell that Steven is quite a fighter.
What I found so incredibly helpful is that he also talked to us about how to prepare Steven for Heaven. Dave and I have been struggling since the times we've discussed "going to Heaven or going to see Jesus" Steven gets angry saying "but, you won't be with me", After helping so many families with dying children, Dr. Kane shared with us how common it is for kids this age to be angry and scared because although they aren't scared to go to Heaven, they are scared to leave their parents. He helped us in so many ways to explain to Steven that we will (spiritually) be together forever, we will never leave him and we will always be together as a family.
Dr. Kane told us to imagine our family all standing side by side holding hands. The only difference between the amount of time Steven is in Heaven before we all get there is that Steven, while holding our hands, takes the first step, and then our steps are right behind. Later, as I replayed this image with Meredith and Emma, Meredith said "So like, Steven will be playing baseball in Heaven for about one day before the next day when we will all be playing there together". Our time on this earth is so short compared to eternity and the reality is, Steven will always be with us as we will always be with him.
As I whispered that we will always be together in Steven's ear, I was amazed that he didn't become angry or agitated, he listened and then said "I know mom." The last thing I want to think is that Steven is scared. I thank God for his grace in bringing Dr. Kane into our lives to help us better and more comfortably prepare our son for a wonderful Heavenly life. Dr. Kane also said that as much as Dave and I are preparing Steven, God is also there to be with him and us and provide the "peace that surpasses all understanding". It's comforting to know that we are not alone.
We switched Steven from morphine pills to IV Dilaudid because Steven was so sleepy and sometimes unable to easily arouse on the morphine. Plus we didn't know how much longer he would be able to swallow pills. On IV Dilaudid, Steven has been more alert and definitely pain free. He even asked to watch a movie, drink some rootbeer and flip his pillow. He is however, more fragile, is not moving positions on the couch, and no longer tells us he has gone to the bathroom. He's not wearing any clothes since that's the way he's wanted it (Steven's always loved being naked!) and also that has been the easiest way to help him go potty with us holding a hand urinal, but now he just "goes". After discussions with Dr. Kane we have decided at this point it would be too difficult to move Steven so he will not be receiving anymore platelet transfusions either. We ask for prayers that any bleeding is kept minimal.
We know as the hours go by he will become more sleepy and out-of-it. We are trying to make the most of the limited interactions we have while Steven is awake, and we continue, in many different ways, to let Steven know how much he is loved.
Tuesday, July 13, 2004--This update regarding Steven's death is still posted on the front page. Click on "home page" to read
Donations on behalf of Steven may be
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It has been two weeks since Steven died and Dave, Meredith, Emma and I are going through the process of "re-grouping" and trying to just re-live life again. After Steven's Celebration memorial service and family leaving to go back home, we took several peoples' advice to get away for a few days. We went to Playa Del Carmen in Mexico. It was a nice get-a-way that provided us with some relaxation, diversion, and some much needed time to give extra attention to our girls'.
Now that we've been home for a day, Dave and I have decided that our family is just not quite ready to deal with the big reality of it all quite yet--we kind of feel that summer has just started for us so we are taking some friends' up on an offer for the use of their cottage in a nice town about an hour from San Antonio. We're going to go and just "hang-out" for a few more days. After four months off work Dave is going to start back next Monday. Dave's company, Medtronic, has been incredibly supportive--they are a very special company and we count them among our many blessings.
There is so much I'd like to say about Steven's Celebration Service, the burial, and thought's and feelings' Dave and I have had since his death but right now I'm not quite in a place emotionally to gather my thoughts in the way I'd like to for an update. We are planning to put a few links on this site from the service so people can hear Steven's voice and maybe view the short video that was played at the service. Those links will take a little effort but fortunately my mom and brother are really good at that kind of thing so we should have those links up in the next week or so.
The tremendous support through emails, cards, calls, donations and overall emotional support has provided our family with a needed extra strength to help us get through these emotionally difficult last two weeks. We have read every email and card and have felt such a sense of caring and love from every message. We feel very uplifted hearing the stories from many different people about how Steven's life and journey has impacted their lives. More importantly, we feel so very grateful for all the wonderful people God has placed in our life--thank you.
We will update more thoroughly in the next few weeks. Thanks again--we appreciate each and every one of you.
Having our two daughters' has definitely helped Dave and me keep busy, focused, and distracted. Meredith and Emma are set on "experiencing" an entire summer in the just two short weeks before school starts. I think they are feeling some of the same feelings we are of "what do I do now?" and maybe are wanting to stay busy to help distract themselves from their own pain of losing their little brother.
So--we are going to the movies, scheduling play dates, helping Meredith re-do her room (a promise we made about a year ago that she is now really holding us to) and doing back to school shopping--yet I'm feeling like school just let out--can it be time to go back already? Dave started back to work on Monday. Things are going well and the empathy and support he's seen from so many people has definitely helped him transition back into the work environment. Of course he still experiences difficult moments but at this point that is normal and to be expected.
When I really think about it, I can't believe it's already been three weeks since Steven died. I am finding that some of the emotions we experienced before Steven died are the same as we are experiencing now. I can smile, laugh, cry, and sometimes feel physically sick, all in the same day and sometimes in the same hour. I keep reading in the grief books how in the first month it is so common to feel nauseous, tired, have a tough time sleeping, and be very emotional--Dave and I both have experienced all those symptoms. Yet we have made the time to reflect, wonder, remember, laugh, and appreciate all the special ways Steven has impacted our life and so many other peoples' lives. Although it's been hard, God really has shown His grace to us through the help and support of so many people.
A couple of nights' ago, I experienced my first dream about Steven since he died. In it he was dying but it was very peaceful and calm. It was not a scary dream at all. In my dream he was laying down in a "baby like" position and the only thing he said was "Mom, I didn't know I'd get my own star." I woke up smiling because who knows? Maybe God does assign a star to every new person entering Heaven--what a nice thought.
In a "Healing After Loss" book my mom gave me their is a quote "And every once in a while some minor miracle of insight and confidence, some serendipity with no explanation other than grace, renews us, and we are willing to relinquish our need to know the details. Instead, we trust that all shall be well."
That dream was for me, an unexplainable serendipitous event that if nothing else made me smile and now look at the night sky with a new sense of wonder. Dave and I do trust that in time, "all shall be well" because we have faith and we believe God only works for good. When I think of how much I miss my little boy then I don't do very well. However, when I think about the gift God gave us in Steven and especially in the last thirty minutes of his life--I know in my heart Steven is okay and that Heaven is an incredible place. I know the healing aspect of this journey is just beginning and their will be times where we are doing great and then times where strong emotions will swell up when we least expect it but with God's grace we will grow and be stronger as we experience this part of our journey.
My mom added a link to the video PJ and Carolyn, my brother and sister-in-law, made that was shown at Steven's Celebration Service. If you click on it your computer media player will pull it up. It's a small picture (to save on download time) but if you click in the bottom right corner you can enlarge it to see the video better. She also put a link to Steven's prayer. The "prayer" on this cassette was recorded by Meredith on her Karaoke machine just a couple of weeks before Steven relapsed. I was so glad to hear Steven's voice and listen to what he said because it really captures the spirit of who Steven was.
Clearly Steven will never be forgotten by our family--he taught us so much and is a huge part of who we are. So many people have shared with us how Steven's journey and life has taught them something. I really hope people continue to remember his spirit and zest for life-- I still have a lot to learn but I have learned that sometimes children can be our best teachers.
p.s.--I added some of my favorite pictures of Steven to the picture album
"Grief is not a sign of weakness nor a lack of faith...it is the price of love."
I feel like I am writing a new chapter. Today is the first day of the new school year for our girls'--Meredith, who's now in 5th grade, and Emma who is a big 3rd grader. This also was supposed to be the year Steven started Kindergarten at St. George with the girls'. Meredith recently commented "Mom, since you used to spend so much time with Steven and at the hospital, now with us gone at school--what are you going to do all day?" I reassured her that even if Steven was still here and healthy I would have been starting a new season of my life anyway as he was my last child and he would have been starting school full time-- I told her I'm sure I will quickly find ways to fill my day (or just relax and enjoy the quiet!) Our conversation seemed to bring her some comfort in knowing I'll be okay and she and Emma can go off and enjoy school.
So, as far as the first day of school goes--I truly am enjoying the quiet. As far as the feelings I am having now that it's been a month since Steven died, well, I have been a little surprised at the intensity and ease with which something will bring me to tears. I usually have a pretty "even" temperment but in the last couple of weeks I've found that some memory remembered or feeling "felt" will either make me smile or cry --but I never know which until it happens. I believe immediately after a death, God must show his grace by putting us on "auto-pilot" for a few weeks so we can get through it all and help our other children but then over time, the reality sets in.
Now I have more time to think, remember and reflect. I need that time and I want that time--that is what will bring healing. These last "frantic" weeks after Steven died and before school started, was spent creating a positive summer experience so the girls' would feel like they did have a summer vacation. We did a lot and all of it was nice--but the pace was fast and now I need to slow down and work through my grief. It's very true how grief is a universal experience--no one escapes grieving over something at some point in their life--yet it can feel very lonely and as Dave and I and our girls' are experiencing, it is filled with a lot of highs and lows.
I know things will get easier and I am fully aware that all the "firsts" are always the most difficult. I guess my mind just couldn't comprehend how much my heart would hurt. My rational side says "I have a strong faith and through Steven's journey my faith was built even stronger, I know Steven is okay and will be with us forever, and I know God has and will continue to bring good out of Steven's journey"--so I think, shouldn't my grieving be easier? I can tell you it's not. Faith and hope are what is getting me through the day but since we're made to love so much, those feelings of wanting to nurture and love are just as intense after someone dies as before. I don't want the feelings of love to ever diminish--I just want this daily hurting to ease.
So as much as I should be cleaning my house, writing thank you notes, sorting through all the wonderful cards people have sent, and just getting organized for the new school year, instead I decided to do some reflecting by going to visit Steven's grave site for the first time since he was buried. I had driven by several times as the cemetary is very close to our house yet I hadn't actually stopped until today.
Although I feel Steven with me always, once again, I was surprised at the comfort I felt sitting on the grass looking up at the beautiful huge old oak trees that surround the area. It felt very serene and peaceful with the small river running behind and a four foot granite cross very close to where Steven was buried. I saw that other friends had already been to visit as there were flowers and a Spongebob sticker placed on his temporary stone marker. It made me smile. As I sat there talking to God and Steven, I looked down to notice two small frogs hopping right by about a six inches from me. And later, It was nice to see in the clear river water fish swimming and a little turtle gliding near the river bank. I know if Steven ever looks down from heaven to see where his body was buried, he'd think it was a pretty cool place because he loved being outside, loved nature, and loved animals.
Today has definitely been a day of "firsts". Although it's been hard, it feels good to "experience" these feelings and know, over time, our family is going to be okay and although everyday may be filled with emotional ups and downs for awhile, that's okay. We need to work through it--not try to escape it.
I know God is showing us his grace on a daily basis. Today especially I've felt Him even stronger. I wish it made me feel "happy" all the time--but that's just not how it works. I do believe with all my heart that God is walking beside our family, and so many others who are experiencing difficult times, to guide us, give us strength for the day, provide his mercy when the day doesn't go so well, and show us daily signs of his amazing grace. As Dave reminded me last night when I just wasn't in a good place emotionally--it's just as important today as it was before Steven died to find a blessing in each day. They are there--we just have to be open to see them. So for today, I am thankful for this new chapter, a new school year and time for healing.
Lisa and Dave
"You need the eyes of faith to recognize when Jesus is around."
Steven knew ICEE'S. In fact, our entire family knew (and knows) ICEE'S. We know where to go to get the white cherry, the yellow lemonade, the Coca-cola and we definitely know best where to go to get Steven's favorite flavor--Blue Raspberry. We even know such details as which gas station's ICEE machine is broken the most, and that we need exactly $1.07 to buy a blue ICEE at Super Target. Steven especially liked getting them there because he could pour the ICEE himself which made his ICEE experience all that more fun! Steven and ICEE's went hand in hand.
Steven must have experienced a soothing feeling when he drank an ICEE because he especially asked for one after going through a round of chemo and after long days at the hospital for transfusions. I'll never forget one of the last days' Steven was in the hospital for his bone marrow transplant we were given a couple hour "pass" so he could get used to going outside again. Where did we go? We drove to Super Target to get a Blue ICEE. He was so excited to be outside drinking his favorite drink. Not ten minutes later, however, the motion of the car and probably the sugar from the ICEE got to him and he promptly threw it up all over his seat. Even that didn't curb his ICEE love--the very next day he wanted another one! Steven and ICEE's went so hand in hand that I even commented about his love for them in my eulogy at Steven's Celebration of Life Service.
With that story, I wanted to share with you an incredible "God moment" I recently experienced while visiting Mission Park North--the cemetery where Steven is buried. I had spent approximately two hours with Louis, the man assigned to help us pick out Steven's headstone. I knew the decision wouldn't be easy, however I mistakenly thought the decision would be quick. I didn't realize all the thought that has to go into what to write, the typeface, type of granite, picture or no picture, size, and design--all for a 2 by 2 foot stone. Per Louis' suggestion, he drove me around in a golf cart to look at all the different types of stones so I could see how they looked in different types of light and how they looked wet and dry. To say the very least, it was emotionally draining.
During that drive around, however, I did feel a sense of God's presence when we were standing in "babyland" as they call it looking at all the childrens headstones. As I walked around pretty dazed by now, all of a sudden a beautiful butterfly fluttered right by in front of us. Lewis commented "Wow, that's a beautiful butterfly. It's a special day when you see butterfly isn't it?" It was a special moment for me since for several weeks I had been seeing a unique butterfly virtually everyday. After the sixth straight day of seeing them I finally said something to Dave and the girls'. Now when I pick up Meredith and Emma from school the first thing they ask me is "Hey mom, did you see your butterfly today?" This little God moment helped me get through the tension associated with the emotional task of picking out Steven's headstone.
Then came the BIG God moment. When I realized I couldn't make the final decision without more thought from Dave and I, I asked Louis to put all the info in a folder and we would come back. He did so. Lewis and I were making casual conversation as we exited his office and walked out to the small gravel parking lot outside his portable building. As I turned the corner there to my amazement was a very large ICEE delivery truck parked at an angle--and it was blocking my car. Louis saw me gasp and thought it was because the ICEE truck was right in the way of me pulling out of the parking lot.
Louis remarked "Boy, that's a big truck.... you know, in all my years here, I've never seen an ICEE delivery truck come to our cemetery." Obviously they don't have ICEE machines at cemeteries. In my amazement I told Lewis about Steven's love of ICEE's and what that symbolized for our family--Steven's love of life and his ability to always find the fun. I then walked all around that big truck and the only thing on it was three life size ICEE pictures on both sides with the logo "Enjoy ICEE's" on the side and on the truck cab door. The driver was nowhere to be found. Louis had tears in his eyes as he said "This has to be a little gift from God and Steven." Louis then helped me maneuver my Suburban around the truck. I left the cemetery with tears of joy knowing that Steven and God are ever present. I believe God gives people what they need to make it through the grief process and into healing--even if it means sending an ICEE trucks to a cemetery!
Meredith and Emma loved the ICEE story. "That's SO Steven" they said. After telling them, Meredith was somewhat quiet and reflective. Then she said, "Mom, ICEE trucks just don't go to cemeteries and come to think of it we've never even seen an ICEE delivery truck--anywhere!" That was Dave's and my thought exactly! Upon telling my friend Sue, she commented "Boy, I can just see Steven up in Heaven giving God a high five (or a big thumbs up!) saying "Hey, my mom "got it"--it's nice to see her smile again!" I too thought of Steven saying to God, "Ya know, sending all those beautiful butterflies' was a good thing, but she's still crying a lot--let's show her something that will REALLY make her smile!"
Dave's comment about all of this is that it really shows that God has a sense of humor. We believe that people are given gifts by God of mercy, grace and even humor to help them get through tough times. Sometimes it takes looking at it with a "rear view mirror" perspective to see how God has worked in our lives. For us, this gift of humor and love was in the form of an ICEE truck sent to a cemetery and blocking my car so I had to notice it. It was a gift given at a time when I really needed my spirits lifted--and it made me smile a real smile. Some people might say it's serendipity or coincidence--Dave and I believe it is God.
When things like this happen, and anyone who's experienced a death of a loved one probably has a story or two, is to me a reminder that God is present in our daily life. God does provide what we need to make it through the emotional ups and downs of illness, loss and grief. These days haven't been easy but I have a heart that's hopeful and I'm trying to see with eyes of faith.
What good is sittin' alone in your room--come hear the music play, yes Life is a cabaret old chum, Come to the cabaret.....
We all know Life isn't fair. God never intended it to be. In fact, if their was one lesson that Dave and I learned early on in Steven's Leukemia battle it's that very idea that life isn't fair and at times it's very hard. But we also learned so much about joy, trust, peace and faith. How can we truly appreciate the joy and good in life if we've never had to experience the pain and hardships? God gives us all this as a package deal. And that's good. I have found over the last month that at times I have wanted to "hole up" and be sad. And yet at other times I have wanted to get out, move forward, and make the most of my day. It's still such a time of many ups and downs--yet as the wonderful Louis Armstrong puts it--"what good is sittin' alone in your room--come hear the music play." It's a good feeling wanting to move forward yet, like a swing, both Dave and I go back and forth in our grief. We read that is a very normal process. I guess I take comfort in knowing that in our grieving--we're normal.
The reason I started this update out about life not being fair is because sadly our family experienced the death of another wonderful, sweet, and beautiful child-- Kylie Bennett on September 10th. Kylie, age 9, is my older brother PJ and sister in law Carolyn's daughter. They are the ones who made the beautiful video of Steven. They live in Tulsa. Kylie died very unexpectedly after suffering complications from open heart surgery. Kylie and our daughter Emma were very close as were their other kids Ryan 11, Natalie 5, and Chris 21, to our kids'. We always loved how Steven idolized Ryan and how Kylie would teach Emma funnny songs. Kylie had a great sense of humor. We've had so many wonderful family get togethers. As you can imagine this has been a very difficult time for PJ and Carolyn and our entire family. For my mom and dad, losing two grandchildren in less than two months has been hard to even comprehend. We miss Kylie so much yet we know she and Steven are together. Please keep Kylie and their family in your prayers.
When Kylie died less than 8 weeks after Steven, Dave commented that to him "it's becoming even more apparent why God chose to be so bold in what Steven said in his last thirty minutes here on earth." God knew what had been and what was coming for our whole family and He knew we needed a bold statement. We have always chosen to draw on our faith to help get us through Steven's Leukemia journey yet we admit we have definitely had times of faith struggles. Before he died, when Steven said what he did it solidified so much in our faith--God is real, He is a daily presence in our lives, and Heaven is incredible. Yet life is still very difficult at times. That's exactly why we need trust and faith.
Our family needed something bold to weather both these life storms. As our friend Phil said when Steven died, "God gave you a glimpse of heaven right in your own family room". Everything about what happened in those last thirty minutes was so clear and so incredible yet at the same time it was also the most painful moment of our life. Again-we can only appreciate the highs if we've been through the lows.
We are trying very very hard to become --as our new family mantra goes--"forward thinkers". It's wonderful and important to look back and remember yet right now it can be very painful emotionally. Forward thinking helps me get through the day. It gives me hope. I am still seeing butterflies everyday--and I smile everytime.
I left the ICEE story update on for a long time since we have received so many wonderful comments and emails about it. The ICEE corporation read the update after being forwarded Steven's website from several different people. They are a very special company. Susan Woods, ICEE VP of Marketing, contacted us with a very nice email and then sent a bunch of ICEE goodies to bring to the Light the Night walk here in San Antonio. They also donated $1000 to the walk. THANK YOU ICEE! Their is so much good in life--I know it ends up being a better day for both Dave and I when we choose to focus on what's good and what's positive. We believe God shows us the good in life through special things like this and the special people who make them happen.
In another positive and special evening, we experienced a great Light the Night walk. It was somewhat emotional for our family yet we felt very uplifted and supported by all the Steven's Team walkers in the light blue Steven's Team tee shirts--thank you James and your company! Thank you also to Sue Wysong for designing the tee shirts and for all your work in organizing Steven's Team. We had over 240 walkers (several friends from Oklahoma City and Becky, a friend from Chicago even flew in for the walk!) Steven's Team raised over $18,000 for the Leukemia and Lymphoma society. When Dave and I and the girls' went to the balloon tent to get our balloons we let our white survivor balloon immediately float up to heaven so Steven could have it. The girls' thought that was cool. He was there in spirit and it was so nice to see so many people walking in his memory. Thank you! My brother Tony and his wife Sylvia also had a team for Steven for the Chicago Light the Night walk. They had an incredible banner made that Sylvia will bring New York City for a Steven's Team at that LTN walk. Dave and I are humbled by everyone's support--thank you.
My mom updated the Steven Soccer Field Fund link. Click on the link to see the latest update. We are so excited about this. For us it celebrates what Steven was all about--and that was FUN. He relished in all things that allowed him to run, kick, shout, laugh, yell, and enjoy life. what kid doesn't? When he was feeling good--he was outside playing hard. He truly made the most of the one soccer game he was able to play in before he relapsed in March. We want to celebrate Steven's love of all things fun with our goal to--in Steven's memory-- build and name a soccer field at Meredith and Emma's school--St. George.
Steven had been enrolled to start kindergarten at St. George and we know he is with the 2004 kinder class in spirit. Our goal is to raise $10,000. Steven's soccer field fund is now over $7,000. If you'd like to join us their will be a benefit dinner that my friend Becky Holmes is organizing at the new Los Barrios' restaurant on Sunday, October 24th at 5:30 on the patio. Email me through this website if you'd like to come. The info is also in St. George's most recent Thursday notes.
These positive "forward thinking" special causes and events help so much to keep our family moving, living, and staying focused on what's good. Our family has experienced a lot of what the general public would term "bad" stuff lately yet through this we have felt more alive and in the moment as we are truly letting ourselves feel and experience all that life is--good and bad. Although we've had some very tough days, we are trying to think positive, trust God, and live life. Crawling in a hole doesn't work. I don't pretend to understand God and why things happen and in fact, I don't even ask "why" anymore because their aren't any answers and it doesn't feel good. I do know that God is with us in every moment--Steven made that perfectly clear on the day he died.
James Hausman, a good friend, put it so succinctly in an email he sent me about a year ago. It said "Life may not be the party we hoped for, but while we are here we might as well dance." I know Steven and Kylie would want to see us dancing.
"My grace is all you need, for My power is greatest when you are weak."
Today I'm feeling "weak". I need the strength only God can give. We are embarking on these next few months of holiday "firsts". These firsts also happen to include Steven's birthday--tomorrow November 2nd. He would have been six. Recently, I'm finding my mind is "racing" all the time with thoughts of how it was last year at this time, thoughts of what the future holds, and thoughts of how much I need God's strength, mercy and grace to help me get through these next several months.
Yesterday, as Meredith was carving a pumpkin--while standing in the pool so she could conveniently wash her hands of the "yuck"--she commented "mom, this year Halloween just isn't the same." I told her I was feeling the same way but we can still remember all the wonderful times with Steven and yet continue to create new family memories which Steven will still always be a part of--just in a different way. Even as I said those words--it still hurt. We always want the good parts in life to stay the same and the bad parts to change or go away. But that's not how life works does it?
Dave and I have spent a lot of time thinking of how we can best "celebrate" Steven's birthday. Out of the mouths of babes--Emma mistakenly thought we still were going to have the big Spongebob party and invite all his friends since that's what Steven said he wanted to do. Such innocence from an eight year old! I had to explain to Emma that we really can't have a party for Steven with all his friends when Steven isn't physically with us. She sort of sadly agreed but then bounced back with the idea of bringing a big pineapple to the cemetery in honor of Steven's Spongebob party. I thought it was a great idea.
After a lot of thought we, as a family, have decided to make tomorrow Steven Trapp day. Dave is taking off work, we are taking the girls' out of school, and spending the day honoring what Steven was all about--which was finding adventures and having fun! First, we are going to go to the cemetery as a family (this will be the first time the girls' have been there since the burial) and let six balloons float up to heaven, say a prayer on this All Souls Day, and leave the Spongebob pineapple. We are then going to go hiking and picnicking at Enchanted Rock State Park. Being outside has always brought me some comfort as Steven was always a love-to-play-outside kind of kid. We know although this birthday will be very different it still can be special.
We also started a new family tradition. Steven LOVED the actual singing of Happy Birthday. He would get so excited, even more so than the presents, the lighting of the candles and singing was for him the best part. For Steven's 5th birthday last year we must have sang the Happy Birthday song three or four times! So in honor of Steven we have now decided that for our family's birthdays' we will always sing an encore of Happy Birthday in Steven's memory. When it was my birthday we sang Happy Birthday and at the end Emma so excitedly yelled "AND AGAIN..." and we sang Happy Birthday again. It's a simple yet positive addition to making new family memories that still include Steven.
There are times when we are very forward thinking and seem to be rolling along with our new life, and then there are days, especially more now with the holidays approaching, that both Dave and I feel rather numb. The emotions are either still very raw or just hovering below the surface. We can act and be very normal when inside our minds are racing with such strong feelings. But we are holding onto our new mantra of "forward thinking". As I've mentioned before--it helps us stay positive.
I used the Corinthians verse at the top because I believe I was meant to. I think God meant for me to really focus on that verse since in the span of one week, three different people from totally different circles, sent me that verse. What to me was even more surprising, was something related that happened about two weeks after Steven died when we were spending a few days at a friends ranch. In one of their bathrooms I happened to see a biblical book that caught my eye. When I opened it to the only page that had a bookmark in it the story on that page was all about trials, suffering, perseverance and how God's strength is made perfect when we are at our weakest. I wrote the quoted verse down and tucked it away. How ironic this week as I was spending time writing some thank you notes that I found that piece of paper and within the same week three other people send me that specific verse. It was like God was reminding me to keep praying for strength.
Things like this continue to happen to me and I'm so grateful for every time something unusual happens (remember the ICEE story?) God speaks to us in so many different ways and when I finally "get it" there comes with it some comfort and peace. Just like the incredibly tough days before Steven died when Dave and I fervently prayed for God's strength, mercy and grace, even now--and sometimes I think even more now--we need God's strength to help us through this first and probably most difficult grieving year.
Dave and I are so thankful to so many people for helping us and supporting our family through this journey. On a very positive note, the Steven Trapp Soccer Field Benefit dinner was such a wonderful event. With the help from some very special friends, we raised about $7,000. The total raised so far is now over $14,000. Dave and I are both humbled and very appreciative of everyone's support. It now appears that Steven's soccer field will become a reality. We are working on the details for cost of soccer equipment and other extra stuff. Our family can smile a real smile when we think of celebrating Steven's spirit of fun with this very special soccer field. At some point we will have a dedication ceremony and you know what we'll be handing out? You got it--ICEE's and Krispy Kreme donuts!
There is so much good in life and although the emotional ups and downs in our family's life are still very frequent, Dave and I each hold our head up with a smile on our face because we know we are blessed, we are thankful, and we are trusting God to help us through.
Lisa and Dave
ps--I put some new pics on the picture album!
"I pray on Christmas--that
the Lord will see me through...
As we enter this holiday season there are special Christmas songs that bring certain feelings and memories. Dave and I especially remember this one above by Harry Connick Jr. "I Pray On Christmas" has held several different meanings to us over the last couple of years and now more so during this first Christmas without Steven. In 2002 we played it loudly and often during the Christmas season after Steven's Bone Marrow Transplant hoping and praying Steven had been cured of his Leukemia. And last year's Christmas in 2003 as we played this song it was definitely with more concern and worry as Steven had just relapsed for the first time and was undergoing a Leukemia experimental protocol. One of the verses in this song goes "I pray on Christmas....that the sick will soon be strong." We prayed fervently for that earthly healing.
This Christmas season as I was beginning to wrap some presents I decided to play that CD. When this song came on it just stopped me in my tracks. It always amazes me how fast a wave of emotion can hit. It's been a whole year since I had heard it and now it has taken on quite a different meaning. It surprised me that as I listened, the overall feeling I had was one of hope. Hope mixed with a lot of sadness yet still hope. Yes it's incredibly sad to us that we're spending our first holiday season without Steven here--nothing feels "right" about it. Yet so strongly in other ways we more clearly understand what Christmas is all about. Their is something incredible in knowing that while we celebrate Jesus' birth--Steven, our niece Kylie, and so many others are standing with Jesus and God. We have hope.
I haven't wanted to focus on the "stuff" of Christmas ie: decorating, tree trimming, hanging lights etc... because that, to Dave and I, feels somewhat forced. We realize Meredith and Emma need the traditions of the holiday season to feel normal so we are doing it but on a smaller scale and fortunately with much less of the usual holiday stress. Inside I have a huge desire to get back to the basics. A blessing that has come from this is that I don't care that our much-smaller-than-last-year Christmas tree is leaning to the left and that we only put up a few decorations. For us it feels right.
We did, however, for the first time ever pay someone to hang outdoor lights. It was stress free, felt good, and when the girls' saw the lights--it brought real smiles to their faces. Ironically, the man who came to give us the quote shared that he had lost a young child just two years ago. They were such nice people and for us, this year, it was a positive way to start the holiday season. To get through these "firsts" we've learned that it's okay to do what feels right and right now --the simpler and easier the better.
Through these holidays I find myself praying a lot--sometimes just little prayers asking God to help me make it through an emotional moment but more often it's just to "make it through" in general. Sometimes I think the intense feelings of loss would have eased a little by now and I believe for awhile they had but with Thanksgiving and now Christmas--just the season itself brings it all back. We really did end up having a decent Thanksgiving --just as a family--quiet but relaxing and reflective. The girls' are really into playing games so we did a lot of that.
Often I find my mind wandering to thoughts of how other families we know who have lost a child, parent, or other special loved one are faring this "first" holiday season. While everyone grieves differently the feeling of loss is still the same--and I would believe for most people it's definitely intensified at Christmas. Yet at the same time I am even more grateful for Christmas for without Jesus's birth and death, Dave and I wouldn't have the hope of seeing our son again. I find peace in that. It's Christmas--back to the basics. I don't fare well with complicated things right now so once again, the simpler the better.
Overall Dave and I and the girls' are doing pretty well. We've talked about how this year will definitely not be like last year but it still can be special. In an effort of positive and forward thinking we have decided to add a Labradoodle (mixture of Yellow Labrador and Standard poodle) puppy to our family. Having this wonderful puppy, especially now during the holiday season has definitely helped bring some comfort and smiles to all our faces. We named our puppy "Sunny" in memory of Steven's sunny and fun loving personality.
Now that it has been five months since Steven died, Dave and I feel like we are still learning so much about life, grief, and suffering, but at the same time learning a lot about hope, trust, and faith. Recently I read a quote in a grief book from Anne Morrow Lindbergh that said "I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise since everyone suffers. To suffering must be added mourning, understanding, patience, love, openness, and the willingness to remain vulnerable. But there is no simple formula, or swift way out, no comfort or easy acceptance of suffering." What Dave and I have learned so far in our still short grief journey, is that their is no "swift way" out--the only way is through it. We have a lot of up and downs but if their is one thing we do have-- it is hope.
"I pray on Christmas--all
our problems gonna be worked out...
"The best and most beautiful things in
the world cannot be seen
Six months. Six whole months. Wednesday was the six month anniversary of Steven's death. I recently had someone say to me that, in time, it will feel like forever since he's been gone. I didn't like hearing that. I don't want it to feel like forever--I want it to feel like it was not long ago because that way it still feels real.
I was having a conversation with my sister-in-law Carolyn who lost her 9 year old daughter Kylie unexpectedly due to complications from heart surgery just eight weeks after Steven died. We both decided that living with the emotional pain of loss is okay and sometimes even desired since it brings significance to the children we loved so much. I know over time the day to day pain will ease-- I can tell in some ways it already has-- yet I can't imagine not feeling the hurt because that hurt makes me feel close to Steven and to who Dave and I were and the life we led for almost three years. Steven's life is worth hurting for because he was and continues to be incredibly significant to us.
More in the last several months however, I think about how thankful I am that God gave Steven to our family at all--even it if was for only five short years. We learned so much, loved intensely, and definitely counted our blessings. I would do it all again if I had to because when you are going through something like that --it makes life feel very real. Life for all of us comes with both good and bad--and there are blessings to be found in both.
As far as this Christmas season of "firsts" went--fortunately it ended up being one of calm, quiet, and better than we had anticipated. For me, the anticipation of the big "firsts" have been harder than the actual days themselves. Both Dave and I and the girls' all had moments of sadness and some tears but we kept reminding ourselves that Steven is still with us and we will be a family forever and we will see him again. The "joy" may not have been there like has been in years past but the simplicity, calm and quiet definitely helped us understand better the real spirit of Christmas. I thank God for that and hope we can keep that feeling in the years to come.
Based on a suggestion from my sister in law, on Christmas night we all wrote something we loved about Steven and who he was. We then put all the notes into Steven's Christmas stocking and will continue to add to it every year. It was a nice way to remember Steven. On a funny note-- a few weeks before Christmas when I asked the girls' what they would like to do to honor Steven during Christmas Meredith answered "Aren't we supposed to be honoring Jesus at Christmas?" The word "honor" was a poor word choice on my part but it sure was nice to see Meredith clearly knew where the focus should be! We did plan some special ways to remember Steven as part of our family at this special time.
One thing we did that was particularly special was visiting the Bone Marrow Unit at Methodist hospital for the first time since Steven died. I can't even say why but one day I decided I wanted to bring some Christmas toffee that I make to the nurses who were working the unit on Christmas Eve and Christmas Day. On that day I felt like I could emotionally handle it. Meredith, her friend Jennifer and I went up to the unit and to the Transplant Infusion Center where we saw many of the wonderful nurses, doctors, and staff that meant so much to Steven and our family. They are such special, devoted, caring, and compassionate people to do what they do on a daily basis.
While we were there the chaplains came by with a gold leaf engraved with Steven's name. The leaves are mounted on a metal "memorial tree" in the hallway of the Methodist Hospital Oncology floor honoring all the oncology kids who have passed away. I actually placed Steven's leaf on the memorial tree myself. We must have passed that tree and through that hallway what felt like hundreds of times in the 2 1/2 years we went for treatment. Seeing Steven's name on the memorial tree, although very sad, also brought with it a great sense of gratitude for all the incredible people at Methodist who cared for and tried their best to make Steven well--Dave and I will never forget these special people.
Now.....where to now. It's a new year and with God's grace we will continue moving forward. I can honestly say I didn't want 2004 to end since it was a year of incredible significance for our family but two weeks into this year I can see that both Dave and I seem to be doing a little better. Just in the last couple of weeks we are laughing a little more and not feeling so guilty about it, we are beginning to do a few fun things and for the most part enjoying them, and we are making little plans. That itself is such a big deal since I never thought I'd want to "plan" anything again. Some days it's still very hard. Really hard. On those days I just don't go out. But right now I seem to get over that hump a little faster and can move forward a little better. Not an hour goes by without thinking about Steven but now I'm not crying as often. I can look at pictures of him and smile without always crying. Most times I feel the dull ache of missing him that I'm sure won't ever go away--and truly I don't want it to. But Dave and I both know it's important that we keep our family moving forward.
A couple of days ago Emma's teacher asked all the kids to do a hour by hour calendar for the day. Emma showed me hers and it said "8am--wake up, 9am to 7pm--play with Steven, 7pm--go to Dave and Busters." I asked her why she picked that to write and she responded by saying "Mom, for me that would be a perfect day." That made me smile--Steven and the girls' were so close.
And Meredith just this morning told me she had a dream where our whole family was together and Steven was running around perfectly healthy. I'm so glad that's how Steven was in her dream--healthy and happy. That's how I know he is in Heaven. Meredith and Emma talk about Steven all the time. They miss him tremendously but now they seem to talk more about memories and all the fun we had. It's so nice that they have those memories.
As I wrote above in the quote from Helen Keller--even though Dave and I can't see or touch Steven we can still "feel" him in our heart. Some days I feel more close to him than others but even on the days when his presence feels so very far I know in my heart I am just one breath away from where he is. When Steven was so sick his last time in the hospital I asked one of our pastors why at that most difficult time I didn't "feel" God--all I felt was numb. He answered "Faith is not about "feeling" it's about believing and trust." I definitely believe and trust that God is present even when I don't feel Him. When it comes down to the basics that's what faith in God is all about.
I also believe Steven will always be with our family even on the days he seems far away. Steven said it the day before he died--"Mommy, where I go is where you go" and in his last thirty minutes here on earth when he said "Daddy, I'll watch you". I'm taking that to heart and no matter how many years go by-- we will always be together. I know that is true for anyone who's lost a loved one. For our family that's a feeling we hold on to as we continue this healing journey and move forward into this new year.
Lisa and Dave
ps--I ended the 2004 picture album page by adding a few more of my favorite pics of Steven.
" O God, our help in ages past,
When I read the word "home" as in the poem above or anywhere else, I now have a much deeper understanding of what home means to our family now that Steven is in Heaven. For Dave and I to hear Steven say the words "I want to go home" just minutes before he died was for us a solidification of the reality of Heaven and what is yet to come. Even looking at it "rationally" when Steven said "I want to go home" he knew he was at his home in San Antonio with his family. But when he said what he said it was very obvious he wasn't talking about his home here. Tasha, a friend who lost her son Jeffrey to cancer shared with me that Jeffrey also said he wanted to go home before he died. She too knew he meant his Heavenly home.
I'm thinking a lot about this right now because Dave and I are in the process of finalizing what we are going to put on Steven's headstone. It takes up to four months to get it processed and we felt it important to have it placed before the one year anniversary of Steven's death. I'm surprised at how much thought and emotional effort goes into picking a headstone. I have already had one meeting to pick granite and such (remember my ICEE truck encounter at the cemetery?!) and now we have the final meeting tomorrow. I thought I'd share with you what we have decided.
First we will have his name as he was known--Steven Trapp and the dates. There will be a cross in the upper right hand corner. We have also decided to put a picture of Steven giving us a "thumbs up" since that was the gesture he used so often. Minutes before he died he used his very weak arm to give us a thumbs up right after he said the words "I want to go home". For him to use that gesture when he could barely move and was so physically sick was such a powerful and meaningful sign. It was like he was saying 'hey, hey'--I'm going to be just fine, I'm with Jesus and I'm happy about where I'm going". The picture we are using was one taken last September when Steven was feeling really good. The day this picture was taken was a regular one where Steven was happy just hanging on the couch playing with a ball probably watching Spongebob. To us it represents all the good days.
We also are going to put Steven's final words on the headstone. Under his name and dates will read "I'm not scared", "I'm ready", "I want to go home", and "I'm going to hop on". What he said in those last minutes was so powerful, meaningful, and comforting for us, and from what we hear often--what he said has brought comfort to a lot of people in regards to their faith. We want to share those words.
I showed Meredith the picture we plan to have put on the headstone and told her how special it will be that she can come back even 30 years from now with her kids and see this picture of her brother giving everyone a big "thumbs up" like we all remember him doing. Her comment was "Is the headstone really still going to be there?" I sure hope so! I think it's hard for her to grasp that she would see his "spot" still the same so many years from now.
Beside the emotional task of finalizing the headstone, we are doing well as a family. The girls are involved in various school and church activities, Dave's work is going well and I am enjoying spending more time with friends. Dave and I have noticed recently how it seems when you pass the six month "mark", people don't talk as often about the child you lost. We realize this is very normal as we are back to a more normal daily routine and the subject just doesn't come up as often. Also I think people see us acting more engaging, smiling more, and wanting to do things and they don't want to bring up a subject that they think might make us sad or uncomfortable. That just isn't the case. I will never tire of talking or hearing about Steven. I don't need to talk about him all the time yet a special place in my heart is touched when someone tells me about something they remember that included Steven, or how his story has helped them in their faith, or even just some silly thing he did that they remember. It helps Steven's physical memory stay "real" for me. Even Dave and I don't spend the hours discussing grieving "stuff" like we have in months past. The routine of daily life keeps us more and more in the present. The grief feelings are still there but we don't feel the need to vocalize them quite as often.
I find the girls' definitely want to share with Dave and me when someone talks to them about Steven. They like talking about their brother. Yesterday while driving home from school Meredith said "Mom, I'm starting to forget things about Steven" and then Emma echoed the same thought with a story about how she couldn't remember if Steven had been with us or not on a past vacation. They are young and their specific memories will fade but I am confident that who Steven was, his positive outlook, how he fought his cancer fight, and the essence of his wonderful personality will never be forgotten by his sisters'. Meredith and Emma are so open in their ability to talk about prayer, God, Jesus, and Heaven. They ask a lot of questions and we've had some really good conversations about what it means to have faith. When it comes to remembering, I shouldn't be sad when they can't remember some detail from several years ago involving Steven because the important things will never be forgotten.
At a church program we are involved in called Logos, Emma shared with me how someone told her they felt that God was "reflected" in her. I could tell she felt really good hearing that and then she asked me "Mom, what does that mean?" It allowed us to get into a nice conversation about what it means to have God in your heart. What I thought about after hearing that comment was how Steven's Leukemia journey has helped Emma and Meredith in their ability to talk more openly about God and faith and that they feel comfortable asking questions. Over the last several years we've had many, many conversations involving all the tough questions. They, as well as Dave and I continue to read, ask, sometimes struggle with, and also learn to accept. The road hasn't been easy but we're thankful for all we've learned.
We miss Steven tremendously and continue to travel this grief journey. Some days are more confusing and emotional than others. In fact, both Dave and I have laughingly commented that the older we get it feels like the less we know. When I find myself feeling like that I try to go back to the basics of faith and hope. In the bible it states how we need to have "childlike faith" to enter the Kingdom of Heaven. Steven definitely did--as all kids do. They believe without having to understand. What I do know is that we have hope and we have home and like everyone who's lost a loved one, we look forward to the day we will all be home together. But while we are here we will continue to focus on forward thinking, learning and most importantly, loving.
I said to the man who stood at
the gate of the year,
I can't believe that it has been so long since I have updated. In many different ways our family is in a new and nice routine and to quote from the saying above, we are treading more safely into this grieving journey. When Steven died, our family definitely stepped into the darkness of grief. Over the last ten months we have done our best to put our faith and trust in a loving God who we have seen guide our darker moments and bring bits of promise that have given us hope for better days ahead. With grief their is no "known way". I read somewhere that grief is not an athletic event with stop watches timing our progress. Grief is a walk through loss and pain. There is no competition and no time trials. We all set our own pace.
What I have found over the last several months is that, with a lot of prayer and with God's grace, our family is doing better-- a little bit at a time. Where I thought I'd never be able to laugh (I truly thought I'd have to fake it forever) I now find that both Dave and I can and do laugh and more importantly we can laugh and not feel guilty that it feels good. We really have been enjoying spring and all the renewal that goes with it. We are as busy as we want to be and currently have a nice balance of involvement, family time and alone time.
The girls' continue to talk about Steven all the time. They love to share dreams that include Steven. We have seen Emma struggle a little with trying to "feel" Steven's presence still. She's almost nine and is starting to forget that feeling of being with her brother daily. She communicated that to us one night in a way a young girl would when she said, "Mom, sometimes I feel Steven is like a neighbor" meaning she can't feel his daily presence like she would a brother. I found her comment to be very insightful but also hard to hear. I told her she's very normal and as time goes on it may get harder to remember all the details. I have had those same feelings.
Many days I will come up to the playroom and see the photo albums strewn over the floor knowing Emma has been looking at them. For her that's what makes Steven real. With this said, I have a renewed commitment to scrapbooking and getting the last three years of pictures in albums as well as converting our many videos to DVD's so we can all watch and remember often. Besides our memories, those pictures and video's reflect love, family, friendship, and many happy times--basically all the blessings God gives us in this earthly life. And we don't want to forget that.
As I mentioned earlier, it feels like both Dave's and my grieving has become more familiar. We both notice how we have become less outwardly emotional. We can both "check" our emotions when were not in a place we want to be emotional. A few months back I couldn't do that. I am still surprised at the uncertainty of when something does make me remember and smile or remember and cry. But overall both Dave and I find we enjoy socializing a little more, we are better understanding eachother's grieving and can give each other space when we need it.
Holidays obviously are the harder days--sometimes I think because we assume they will be. This Mother's Day for example, I decided not to think about it like "another grieving holiday" and instead think of it as a good day to celebrate family. Last Mother's Day was so hard as Steven was very sick and I knew it would be my last with him. This year I decided to make the most of what I do have and that is a wonderful family--including Steven--and an opportunity to make more special family memories. We decided to go strawberry picking up in the hill country which is something I've never done. In the future I think Mother's Day for me is going to be about taking a little adventure for the day--doing something I've never done before and experience that adventure with my family. In keeping with that theme I gave my own mom a book about seeking adventures in life for Mother's Day. It's a cute book called "A New Adventure Every Day--541 simple ways to live with Pizzazz."
The strawberry picking weather was stormy but surprisingly it cleared just long enough for us to pick bunches of juicy strawberries. The girls' claimed Steven sent the sun just in time for our adventure! Emma laughingly kept repeating "Mom, Steven would be running ALL over this strawberry patch trying to find the perfect strawberry--he would LOVE this". The best thing about that comment from Emma was that she was smiling and laughing as she said it whereas a few months back she would have said something like that much more sadly. Yes, we all missed Steven that day and I definitely shed more tears than usual but staying present in the moment and focusing on being a family helped make the day special.
Recently Dave and I were discussing how through our grieving we've seen some positive changes. For anyone, a big part of the grieving process is going back into your child's room and deciding what you are going to do with all their stuff. For me it's been easier to do it in small chunks of time when I am in the right frame of mind to handle that very emotional task. I see signs of God's healing in me as the last few times I've been in Steven's room to clean and organize I felt more comfort and closeness and less of that gut wrenching heartache. I have decided to make Steven's room a comfortable scrapbooking room. For now I'm leaving it painted still in his "sailing" theme because I find comfort in that. Doing it in phases gives me time to "process" and get ready for the next step. Meredith especially loves having all the scrapbooking supplies handy and that was apparent in the wonderfully creative Mother's Day card she made me!
A larger positive for both Dave and I has been in our desire to learn more about the Bible. I'm sure it stems from wanting our questions answered and wanting to better understand God and His purpose for us here on earth. I chose to purchase a One Year Bible which is broken into an Old Testament, New Testament, Psalm, and Proverbs reading every day for 365 days. I started on January first and find I really I look forward to my daily reading. I have never read the bible cover to cover and doing it like this reads in a way that is interesting, thought provoking, sometimes intimidating but also comforting and encouraging. The girls' have occasionally seen me reading and sometimes we'll discuss stories we've both read and what they mean. Most of the time, however, I read in my own private time where it's quiet.
I received what I think of as such a gift when in the Mother's Day card Emma made at school where she listed her mom's "favorites" she wrote "My mom's favorite thing to do is read her bible and watering the garden." It took my breath away when I read that. It made me feel so good that even though she doesn't watch me reading the bible everyday, she's perceived it to be an important part of my life. And it is. To me, this is a strong example of what an impact we have on our kids just by what we do daily.
A few months back Dave decided he wanted to start a men's bible study. They meet once a week at our house and are currently studying the book of John. This is something Dave has always been interested in doing yet with the intensity and time it takes caring for a sick child he couldn't take the time to start one. Now our life is kind of like a "clean slate" in the sense that we can decide how we want to spend our free time. He chose to do this and has found fellowship with other men and has really enjoyed the discussion and reading. Dave and I have both found in everything that contemplates the bigger issues in life, sometimes instead of answers we just have more questions. We do feel, however, that through our reading we get glimpses of understanding, comfort, and assurance.
There are many other positives in the form of friendships made and renewed. The outpouring of support and care from so many people during the last ten months has given both Dave and I so much encouragement and hope. The Steven Trapp Memorial Soccer Field too is a wonderfully positve way that Steven will be remembered. So many people donated to that and hopefully within the next year it will be completed (it's been a little delayed due to other building changes that impact the field.) The field will happen and when it does it will be wonderful.
Dave and I seem to now spend more time reflecting back on the last ten months, seeing where we have come and trying to focus on the positive changes that have occurred over this time. I realize that as we approach the one year anniversary of Steven's death things will get more tough since it is a huge "first" to go through. On those harder days the "positive" may be just that we made it through the day.
read recently the grieving process defined as "the heart breaks, the heart bleeds, the heart surrenders, the heart heals." On any given day I might be any one of those "hearts", but looked at in a broader perspective, I do feel my heart healing bit by bit. I think Dave, Meredith and Emma feel the same way. It's a feeling hard to describe but I know that healing is coming from God. Yes there are still bad days that bring with them a true ache. I've read that the pain that goes with those days doesn't diminish life but instead gives it a new quality of fulfillment. I don't wish those days away--they are part of who I am and part of the journey.
I've also read that as time passes, the memories that bring the most pain will begin to be the ones that bring the most joy. You gradually move from the person being alive and present with you to the person having a new life in your memories and being with you in a new and different way. I definitely find solace in that. Our family is in a time of change but it is incredibly comforting to know that the words we told Steven over and over again--"we will be together always" are still true today and forever.
It helps to look back and see that now we are doing better--it's still a long, winding, bumpy road but by putting our hand in God's we can continue to tread safely into the unknown.
Lisa and Dave
p.s.--I put some new cute pics of the girls' on their pages. Just click on Meredith's Page and Emma's Page! They sure are excited for summer vacation!
"I have told you these
things, so that in me you may have peace.
"The last of the firsts." That's what our eleven year old daughter Meredith called it late last night as we had a rare and wonderful conversation about her and Steven's relationship. Meredith is a very sensitive young lady and at times it's been hard for her to openly talk about Steven. In a very candid discussion Meredith shared with me when she talks about Steven how it makes her feel like she is going to cry and if she starts to cry she's afraid she won't stop. She told me how she likes to write to her brother because when she's done writing she feels better and "it's over." She said she's glad the one year anniversary of Steven's death is here because this is the last really hard "first" we have to go through.
We started today by spending some time at two wonderful parks. It felt right. We talked, played on the playground, rock climbed, sweat a lot (remember, we live in south Texas!), enjoyed playing with Sunny our dog, and remembered the fun times we all had together. At exactly 11:22 we talked about Steven entering Heaven and how he must be celebrating up there. We felt him with us and focused on how we will be together forever. We are still a family of five. Since we talk so much about how we miss Steven, today I tried to focus the conversation with the girls' on how we've become stronger because of all we've gone through and how here it is a year later and we're okay and how we're going to continue to be okay. On this day filled with strong emotions, focusing on how far we've come has helped.
Emma had the idea to go to LUBY's for lunch and all have blue jello because Steven loved that. So far it's been a good day as expressed by Emma when she said "Mom, I thought today I'd be crying and crying and just being sad all day long....and it really hasn't been like that." I take that as a good sign. We are grieving in a healthy way.
I have written a lot about what this last year has been like and how, with God's grace and mercy, we have been able to move forward. Our family has had countless conversations about faith, heaven, and what's really important in life--all of which are hopefully making us better people. That's not to minimize the tough days--there have been many and they have been excruciating. For us however, focusing on the greater picture has brought perspective and meaning to this life changing year.
Since Steven died Dave and I have forged on to create a new life --one not filled with hospital stays, medications and sickness. Sometimes in some strange way I miss that world because even a year later in this new life it can still feel weird like my old "mom of a sick child" life was more who I really was. It's taken some time to define my new role and feel comfortable in this new "easy" life. One thing it hasn't been is easy. We took this first year to just be and let life happen. Dave and I were talking last night about how we no longer mark time in the calendar form of January to January. For us, and I bet for many others who have experienced a significant difficult event in their life, the reference point for time becomes before and after. That may change over the years but for now that's how it feels.
Tonight at sunset we are going to go get ICEE's and take a trip to the cemetery. Steven's headstone was just laid yesterday so the girls' haven't even seen it yet. Dave's idea while we are there is to talk about the words we had engraved on Steven's headstone. They are some of words he said in his last thirty minutes here on earth. Those words bring comfort, hope and the knowledge that God is with us always and we will go to a Heaven that is so incredible it's hard to wrap our minds around. That's where faith comes in. Whenever I go to the cemetery I read a stone placed near where Steven is buried. It reads "When someone you love becomes a memory--that memory becomes a treasure." We treasure so much about Steven and the gift of his wonderful life and know we will see him again.
Today, as I opened my email the word Peace was the first word I saw. It was coupled with the chosen bible verse I wrote at the top of this page. Dave and I both understand that word better as we hope for it everyday. It's been a year filled with so many emotions--many of which are hard to put a word to. Through it all however, Dave and I can say we have experienced moments of God's peace through the everyday blessings of children, sunsets, butterflies, unexplainable God moments, friendships, family, and the hope that comes with knowing we will be together again.
If I had to pick a word that defines this year of firsts I would say it is Hope. Hope is defined as "to cherish a desire". Our desire is to continue to grow in our faith, lean on a God that provides peace, hope, grace and mercy, and, as I've said, to focus on the greater picture. Rick Warren wrote an immensely popular book titled "The Purpose Driven Life" about God's purpose for our life in this very unpredictable world. He starts the book with the words "It's not about me." If we place our focus only on ourselves and our situations then how can we ever see the greater picture? Our family's journey has defined who we are and now how we use it to become better is up to us.
Along with this we have committed ourselves to finding more adventures, living in the moment and learning from all we've been through. I read that hope is "born of suffering". We all have to suffer at some point. What we learn from our suffering and how we use it to hopefully become stronger and better is what really matters. In the last year I've said many times-- I don't want to become bitter--I want to become better. I don't think becoming bitter is really in my nature, however, sometimes I'm afraid of living "dull" like walking around in a daze--similar to how I felt for the first several months after Steven died. Around these big "firsts" and even during some very typical days I feel this tape just playing and replaying in my head like I can be going about my business and yet the whole time I'm thinking things like "I can't believe this all really happened" and "boy has our life changed. and "what now?" It can be a very draining feeling.
Dave and I are different people than we were a year ago and thankfully the big emotional waves have become less and as a friend put it we are beginning to "surf" better. We are better and stronger in many ways yet in others we have a lot of work to do. Anyone who has lost a loved one knows the incredible ups and downs that go with this grieving journey. But as I reflect over the last year, we have made it through and we are still standing. We even smile and laugh. We go on vacation. We socialize. We plan. We imagine. The pain is still there but living with pain makes us truly appreciate joy. Steven lived with the cancer treatment pain so much of his life and yet he was still an incredibly happy, fun loving, and joy filled little boy--and he blessed our family tremendously. We are so thankful for having had Steven in our lives.
I couldn't put it any better than to just quote a little of what Meredith said in the letter she wrote to Steven a few months after he died -- "Steven, thank you. You made me a much better person than I was. You have touched everyone's hearts. And sometimes I think you were one of those people who were sent down from Heaven to just help........help everyone. But most of all you helped us become better people. And I think that you were made only up of fun. And you could always find a blessing in every day."
The last of the big firsts will soon be over and as I told Dave a week or so ago--the feelings I have will be the same on July 14th as they are on July 13th. Although today has been hard it has also been special. It has been many of life's emotions wrapped up into one day--much like the day Steven died. That is what make's up life-- lots of emotions and feelings but also a good amount of faith, hope, and love. We will always be together, we will treasure our many blessings here on earth, and with God's grace we will focus on the greater picture while continuing to move foward.