|March 4, 2002: He's in Real Remission!
Once again it feels very good to get some good news! Today we went back to the oncologist and Steven had a bone marrow aspiration, intrathecal chemo, and blood work. Based on the final induction bone marrow test--Dr. Estrada said that Steven definitely is in full remission! Steven was so brave and helpful (he even "pushed" some of his own meds into his port!) Even better news--we get to stop the Decadron! These last 30 days on Decadron have been a very "patience testing" experience. Remember earlier emails about Steven's incredible mood swings, rages, hallucinations, food cravings, 10lb weight gain, bloating etc....? No MORE!!! That's why we are so very excited to stop that drug. It was a very important drug because it prevented the cancer from entering Steven's brain, however, it can only be taken a month at a stint so they will move on to another drug at a future time. The doctor said that within 2 weeks Steven should start getting his old wonderful personality back and his weight should start returning to normal, however, he will maintain his puffy cheeks as long as he's on chemo. I'm just looking forward to not having Steven watch TV and eat "lunch" at 3am!! (His sleep habits get so screwed up in the hospital that it takes awhile for him to re adjust back home!)Since the levels of Decadron in his system are still so high, they are going to give Steven's body a week to "recover" from the Decadron and start consolidation next Monday. It will run for 7-8 weeks. It is the protocal for High Risk Leukemia patients from the National Children's Cancer Group. According to the oncologist, it's a pretty intense chemo session. We know the first two week routine will consist of going in on Monday and get fitted for a IV pump to take him home on. We go back at the end of the second day. The drug ARA-C drips into him for two days and then he gets a deep Intramuscular (big time ouch!) shot on the third day. Then they wait four more days to watch for the abundance of side effects that can happen (pray for none!). We'll repeat this routine the second week. His blood numbers will definitely start to drop by the second week so we will become more and more housebound. Over the next 7 weeks we will only go back into the hospital for any fever or needed blood transfusions. Since Steven's blood test looked great--(go white blood cells!--that's what's keeping us out of the hospital!) With these good results--this is going to be a good week! We're going to take advantage of Steven being off Decadron and do some fun family things ie: The brackenridge train ride, see a movie and even go to Sea World (Thanks Kimberlee!). Based on the new chemo starting next week and as we get closer to transplant time, when we can, it's real important for us to do things that make our family feel "normal". The girls have been riding an emotional rollercoaster too (they had some real pouty faces this morning when they heard that Steven be back in the hospital today) so I can't wait to see their expression when they get home from school and see that we all are home!! (Such wonderful simple blessings!)
It's so hard to explain in an email all the varying emotions that have taken place over the last month. All I can say is that we're going to relish in this "calm before the storm" and make it a happy, fun, "normal" week because feeling like a normal family, if even for only a week, will help us build up the emotional strength to handle the incredibly tough touch-and-go (or as our Bone marrow doctor says "the dog days") of the Bone Marrow Transplant. Please continue to keep Steven in your prayers as we feel incredibly blessed already!
Thanks for all your thoughts and prayers! Lisa, Dave, Meredith (Donor Champion!) Emma (Helper Champion!) and Steven!
This morning Steven went in to wake up the girls for school and when I came upstairs they all had made a big bed on the floor and all three were giggling and having a blast. Meredith said "Mom--it's so nice to have Steven back to his "old" self!" In the past I may not have spent much time "taking in" that scene because I would have been thinking about getting them ready for school, however, today I just sat there with a big smile on my face thanking God for these precious moments--and looking forward to many more.
We are, however, realizing how fast things can change. Steven had a sore on his cheek for the last month that just wasn't healing. Since he is immunocompromised it takes everything longer to heal and in the last couple of days this sore became infected. We immediately took him to the Oncologist who told us that after two days on an antibiotic, if it did not look noticibly better, then Steven would have to be admitted to the hospital for IV antibiotics. It's amazing that something that little could land him back in the hospital. Thank goodness though, today it looked much better! In the past I would have slapped some Neosporin on it and told him not to pick it. Now, however, both Dave and I are obsessed with staring at the sore, measuring the size of the red spot, and poking at his face which is driving Steven nuts!!! As we've said before, every day of this journey is a learning experience!
The purpose of this email is also to let everyone know that due to my mom's and brother's computer savvy, we have a wonderful website where I will now be doing all the updates on Steven. It has recent pictures of all the kids and has a place for Meredith and Emma to write about their feelings during this journey. The most recent update will always be on the first page. This will make it easier for me and then anyone who want's to find out what's going on can visit it as they wish. My mom will be maintaining the web page for us! Thanks MOM!!! The website is www.steventrapp.com Soon we hope to add a guest book where people can leave messages!
Dave and I also plan to compile all the incredible pieces of inspirational messages, scripture, quotes, book titles, etc.. that so many people have sent us to help our family through this incredibly difficult time. Both Dave and I have found peace, strength, hope and encouragement in reading these--thank you! We hope to list them on the website so that anyone else who may be going through a tough time can hopefully find some encouraging words that may help.
Thanks again for all the prayers--they are being answered every day. Lisa
Well, we're back at it. Last week was so incredibly wonderful but because it felt so calm and normal, I think it made today a little harder. The reality of this disease has definitely set back in. Today we took Steven back to the oncologist for blood work and to start his new round of chemo. At first they thought he wouldn't be able to start the chemo because of that little sore on his face, but Dr. Estrada decided to just increase the antibiotic dosing and continue the chemo as planned. Grandpa Charlie (my dad) came to the appointment and Steven was so proud to show him how brave he was! Steven really likes to be "involved" in his own care! He walks around the doctors office like he owns the place!
Steven now has a portable IV pump that he is wearing for the next two days. The IV Medicine is in a pack that either he carries or I carry and follow him around wherever he goes. We pretty much cant let him out of our sight right now. Hes getting a drug called ARA-C. Lucky for us they gave him some good meds to keep him from throwing up all night (although we have to set my alarm for to give him the same medicine again because if I don't then we will be changing his sheets all night long--you know we won't miss that alarm!). Besides vomiting, the other side effects from this drug are loss of appetite, eye irritation and fever. So far, five hours into it, he seems to be handling it pretty well. We do notice a pattern starting where after leaving the doctor Steven gets very agitated. I think its a release from all the tension that builds up during his doctor visit. Hes trying to understand everything that just happened to him but for a three year old its a lot to try to comprehend. Overall, Mondays tend to be an emotionally draining day because first, we never know if we are headed back to the hospital. Second, its always another new chemo routine for the week which brings with it the uncertainties of all the scary possible side effects. We would appreciate prayers for Steven that his body handles these new chemo drugs well and that he has a minimum of side effects.
After this two day IV infusion, he will go in on Wednesday to remove the IV pump. He also will get a nasty deep muscle chemo shot in his leg (big time ouch!) The rest of the week we just monitor him for side effects. His white blood cell count will definitely start to go down and by the middle of next week he will be neutropenic (no ability to fight off infection) so he will most definitely be housebound. This is when all those wonderful toys and boxes of goodies that people have sent come in so handywe play a lot of games, watch movies, play with Gak and playdough, read books and with any luck hell sleep some too!!!
Its so nice to have my mom and dad here this week to help with the kids during their spring break. Steven is such a social little boy so he LOVES playing with Grandpa Charlie and Grandma Judyand the girls get to have some special time too.
Lisa, Dave, Meredith (Donor Champion), Emma (Helper Champion), Steven (Brave Champion)
5:30pm--We just returned from the oncologist and they have determined that it is too risky for Steven to receive a second round of ARA-C this week. Their decision is based on the fact that Steven's wound on his face isn't healed enough and he is already neutropenic (today his white blood cell count dropped significantly to less than 200). Dr. Grayson said if they were to "hit" him with another round this week with his counts already so low and a current infection in his face, it could put Steven in a very serious position of possibly contracting an infection that they couldn't heal.
Dave and I have mixed emotions because this two week dose of ARA-C is the needed regimen for Steven's rare and agressive type of Leukemia, however, we are putting our faith (please pray for our physician's to make good judgement calls in Steven's care) in Dr. Estrada and Dr. Grayson that this is the right thing to do. As Dr. Grayson put it so bluntly "We want Steven to make it to the transplant" (that was a very sobering thought). It does push back the BMT to around the middle of May. Steven is acting so "normal" that it's hard to believe that his life is so fragile right now (although I guess we should all regard our own lives that way--then we really would live life to the fullest every day--wouldn't we?)
Dear Friends, 9:30a.m.
Dear Friends, 9:30a.m.
We had such an amazing experience yesterday! Due to the wonderful organization efforts of friends--Lisa Rosenfeld and Ellie Watkins, our neighborhood sponsored a blood drive with all donations going in Steven's name! There were 79 people who showed up to donate with 71 actual units being drawn! WOW!!! Even more impressive was that there were over 24 first time donors (and none fainted!) thank you for being so brave! We had so many people that after seeing the list--the SA Blood and Tissue Center brought a second van! The outpouring of support from friends in the neigborhood, my bookclub, St. George school, University United Methodist Church and Dayschool, Alamo Heights United Methodist Church, and others was so incredible! Lisa and Ellie spent their entire day checking people in and making it run so smoothly--and everyone was so patient if they had to wait. We had so many other people who called and wanted to come donate but were gone for spring break etc... If you would like to still donate--University United Methodist Church is having a blood drive on April 7th where you can donate in Steven's name or you can always go to the SA blood and Tissue center!
The kids who came were able to do their part to help by coloring x's and o's (kisses and hugs) for Steven to use to decorate his hospital room! Steven, Meredith and Emma all saw the adults with the bandages on their arms. Steven was most impressed with the size of the vans--and the fact that he didn't have to get a needle stick!! He even was able to watch me donate! Although he's too young to completely understand the impact of this event--I know when he's all grown up he will look back to see pictures of this event and will then be able to appreciate the magnitude of support and love that came from all who were there!
It's hard to express the emotions Dave and I had seeing all our friends lining up outside to help donate and thus take a huge part in helping Steven with his fight against Leukemia--it was an extremely heartwarming and very humbling experience. It's support like this that helps us see first hand the incredible blessings that can come out of a hard situation. As Steven receives many more transfusions we will remember this wonderful day and use it to carry us through the tough times ahead. This is a big THANK YOU to everyone who came out (and to those of you who are donating in the future!)
This spring break was wonderful--Steven and the girls loved their visit with grandma and grandpa! His cousins from Tulsa also came in to help and have a little fun! We were even able to go to church (early early service --sitting in the balcony) as a family! Steven kept begging to go see his Sunday School teachers but since he can't really be around a bunch of kids that was kind of hard on him.
But now it's Monday and it's back to the oncologist. We go in at 2:30 to get Steven's IV machine put back in and get him started on his second round of ARA-C. This week Dave and I are a little more nervous because his counts have started to go down and they are hitting him with another round of ARA-C which will make his counts bottom out. This means by the end of the week he will likely be neutropenic and need another blood transfusion. We will have to be very careful and take all precautions in trying to keep him infection free because his immune system will be very weak. The oncology nurse said that we will be considered very lucky if Steven can stay out of the hospital over the course of the next three weeks (that's what we'll be praying for!) Steven did amazingly well during the first course of ARA-C and we hope this next phase goes just as well. Thanks again for continuing to keep Steven in your prayers--this is a long journey with the toughest part yet ahead--we sure appreciate everyone's support! (see after appt.update at top)
Lisa, Dave, Meredith (Donor Champion!), Emma (Helper Champion!), Steven (Brave Champion!)
P.S.--They are considering doing another blood drive in late May (yes, Steven will still need need blood at that time). Lisa Rosenfeld is compiling a list of potential donors and phone numbers so when they do another drive she can just call you to schedule an appointment. If you would like to be on that list--please email her with your phone number at LShoevlin@yahoo.com
Friday, March 22, 2002 --Steven's rosy cheeks are back!
Today Steven received a bunch of the blood that everyone donated last week! THANKS! We went back to Dr. Grayson's office where Steven had blood taken out of his "crab" (that's what he calls his chest port because the needle looks like a crab claw--and I guess stings like one too!). He was very brave as usual. It's amazing how he adapts to change now. His white blood count dropped to zero which means he doesn't have any white blood cells in his body to fight off infection. For us this means he can't leave the house for at least 7 days. Since this ARA-C chemo is such strong stuff, it has what's called a dual-arm effect. This means that as his white cells start to recover they will again drop close to zero a second time. Only after they recover a second time will his body be ready for the second round of the ARA-C (due to the aggressive nature of his Leukemia, he has to have two rounds.) The whole recovery process takes around two to three weeks. This is a very scary time since any little bug can become a huge problem in Steven. As if we aren't already diligent enough in his care--now we have to extra carefully watch for any behavior change, fever over 100.5, or just a change from the norm which may indicate an infection (as if a three year old doesn't go through enough behavioral changes on a daily basis!)
We spent all day at Methodist hospital where Steven received platelets and whole blood. His cute red cheeks come back every time he gets blood. I thought for sure Steven would sleep the day away like a lot of the older kids do (wishful thinking!) but instead we (or "I") spent the day playing Nintendo (he kept saying "mommy--you do it!"), watching movies for 10 minutes each, walking around with our IV pole, and having Steven ask Charlie the nurse -- "Hey--whatch you doin?" about a hundred times! Steven truly makes friends fast!
Through this whole ordeal Dave and I have really tried to keep perspective and to really try and see the blessings. Whenever we are in the hospital we realize so clearly how lucky we are because their is always someone going through an even tougher time. To get blood we go to the Bone Marrow Infusion Center. Today we met a wonderful family with a seven year old son named Joey. He was diagnosed with ALL when he was three. He went through three years of chemo and was declared cured. Six months after the completion of chemo he relapsed and is now scheduled to receive a bone marrow transplant approximately the same time as Steven. Joey's family lives in the Valley (south Texas) and must travel here to San Antonio for all his care. They have two other kids and now the dad stays at home and the mom lives with Joey at the Ronald McDonald house or hospital. Minus short visits, their family will be apart for upwards of six months. Their are a lot of people handling such difficult situations. Sometimes Dave and I get caught up in the day to day of dealing with Steven's cancer that it takes talking to someone who has to travel 4-5 hours for care to make us truly appreciate how lucky we are to be living so close to such a good transplant facility and be able to go home and be a "normal" family when we can. It is also so incredibly nice to have such a strong friendship support base right here to help us out--THANK YOU!
Speaking of family changes--Meredith is going on a Girl Scout campout this weekend. I have always been very involved with her troop so I was kind of bummed not to be able to go with her (it's too risky being gone if Steven spikes a fever.) We've obviously had to make a lot of changes in our lives since Steven's leukemia, but missing these bigger events is hard. While I am having this little pity party, however, Meredith isn't missing a beat! She seems to truly understand why I can't go and is handling it like such a grown up little girl--that in itself is such a blessing! I know I'll have many more campouts to enjoy!
Well, now it's a wait and see game for the next two weeks. Please keep Steven in your prayers that he will stay infection free!
Lisa, Dave, Meredith, Emma and Steven
It appears that now Dave and I have become "psuedo" nurses (isn't that a scary thought!!!) We spent about four hours at the Oncology clinic yesterday trying to escape having Steven put back in the hospital. His staff infection on his face is just not clearing the way it needs to so after a full month on double dose Augmentin, he's begun to develop a resistance (it doesn't help that his white blood cell count is zero so he has no natural ability to heal it.) After examining his face Dr. Estrada decided that Steven needed to be hospitalized for five days to get IV antibiotics (imagine five days with no opportunity to even leave the room due to his non existent white blood count--nooooo fun at all). With Steven having zero white blood cells and another sick child at home (Emma has a sinus infection--no big deal but she's understandably needing a lot of TLC) we brainstormed other options. Thank goodness for an "out of the box" thinking oncologist! He suggested using a home health agency to come teach Dave and I how to administer an IV infusion pump (I'll have to say for a moment the hospital actually sounded better). However, after less than 24 hours I am now an IV Infusion "queen"! To be honest, with Dave being quite a perfectionist--he's probably better at it than I am!
We administer two different antibiotics five times a day starting at 4:30am and going until 11:30pm. It's kind of a long day but I keep reminding myself that the alternative of sleeping on a chair in a 10x10 room for five days would be much worse. Steven is handling it remarkably well. Since this is yet another "new" situation for him, he's acting out in some tempermental ways--but he definitely needs to release his stress as well! This morning though, he woke up and quickly "reminded" us that he needed his "backpack" (infusion bag). He just walks around with it like an old pro.
Steven's count is still zero as of yesterday so we're tied to the house for probably another week but it should start coming up then. I have been so grateful for the friends who have come to play with Steven so Dave and I can take a much needed break. Steven does better having a little time away from us. And we can only do so much playdough, puzzles, and Playstation in a day (at 6am his first request was -- "Mom can we play Dig n' Rigs on the computer??) Lucky for me, Daddy and Steven have created a Bob the Builder game that Steven absolutely loves and is relentless in begging daddy to play day and night!)
Tomorrow we have a big appointment with the Bone Marrow Transplant team (Dr. Wall and staff) to discuss Steven's future care. This is the "big" meeing to discuss transplant options. Please keep Steven in your prayers that his team of oncologists use their insight and knowledge to make the best decision on how to proceed and cure Steven's Leukemia.
Thanks for your prayers!
Lisa, Dave, Meredith, Emma and Steven
Dr. Wall has
never seen this combination in her 15 years of treating high risk pediatric Leukemia
patients. It is now very clear to us why Dr. Wall was so concerned about even getting him
into remission during our first meeting with her five weeks ago. The great news is that
with the help of the chemo and Stevens winning attitude he trumped those loathsome
cancer cells. The presence of the Philadelphia Chromosome and Mono 7 cells
have been virtually eliminated and Steven has gone into an outstanding remission. That is
not to say that they cant come back prior to transplant but at least for now they
are out of his system. What a champ and thank you for your prayers!!!!
Dr. Wall has never seen this combination in her 15 years of treating high risk pediatric Leukemia patients. It is now very clear to us why Dr. Wall was so concerned about even getting him into remission during our first meeting with her five weeks ago. The great news is that with the help of the chemo and Stevens winning attitude he trumped those loathsome cancer cells. The presence of the Philadelphia Chromosome and Mono 7 cells have been virtually eliminated and Steven has gone into an outstanding remission. That is not to say that they cant come back prior to transplant but at least for now they are out of his system. What a champ and thank you for your prayers!!!!
This is whats upcoming. The actual transplant is scheduled for approximately May 15th. He will be admitted to the hospital nine days earlier to get his body prepped for the actual transplant. They will be wiping out his entire immune system to get it ready to accept a new one (Merediths). Some difficult decisions were made in this area as to whether to go with total body radiation (TBR) and chemotherapy or combination chemotherapy and testicular radiation (they have to do this with boys because of the risk of cancer relapse in his testicles) With both he will be sterile, TBR can cause long term growth problems and neurological problems in children his age, however, the relapse rate is slightly lower. Dr. Wall and we agreed that combination chemotherapy to wipe out his immune system would be the best route to go given his age and the chronic problems that can occur with TBR. Assuming minimal complications, Steven will be in the hospital approximately 4-6 weeks. Dr. Wall calls this time the dog days. We toured the Bone Marrow Unit and the nurses there are exceptional. Dr Walls confidence and drive to beat this leukemia is inspiring.
Well, back to
taking this one day at a time. Yesterday we so
narrowly escaped having to go back in to the hospital. Steven spiked a fever at
Well, back to taking this one day at a time. Yesterday we so narrowly escaped having to go back in to the hospital. Steven spiked a fever at(why does it always seem to happen during the middle of the night?) Lisa and I were pretty nervous but he was already on two very potent IV antibiotics so after a trip to the oncology clinic for a blood culture and a nervous 24 hour wait to see if he was going septic, all is well. Yea!! Steven drags that IV bag around like its nothing and still wants to ride his bike and play in the backyard! This kid is tough!!! His face, just today, is starting to show some improvement. His counts are recovering and theyve even given him a drug to boost his white blood cell count to help heal his face quickly. He has one more round of Chemo to get through before he will be ready for the transplant.