|February 2: What a long day
With all of us having families, I know you know how hard hearing the word Leukemia was. Today was a good day--Steven was happy and cheerful and sweet! It's amazing to think that only 5 days ago I was taking him for a follow up to the ENT to check on his ear infection and then fell into this horrible whirlwind of doctors, tests, surgery, blood transfusion, bone marrow aspiration, spinal tap, chemotherapy and waiting to hear those horrible statistics of survival. But all in all we feel so blessed to have such incredible support from friends and family. Luckily, Steven was diagosed with the "good" form of Leukemia (I never thought I'd write the words good and Leukemia in the same sentence) His chances for cure are 80% (with the other form the chances for survival were only 50%). We thank God for that blessing daily. Now, however, the real work starts. He's in for three years of chemotherapy. He had surgery to place a "central port" near his heart so they can access a vein daily without having to stick him everytime (that part was the hardest!!) He started Chemotherapy yesterday.
My new "primary care physician" is now a oncologist named Dr. Estrada (please pray for him to make smart decisions in steven's care) Steven is enrolled in a national Leukemia protocal and study that should help increase his chances to upwards of 90% cure rate. Unfortunatey as all the oncology nurses and doctors have said--this is going to be a long hard road but we'll make it. The first six months are the hardest because he can't be in groups of any kind so no Mother's day out, no church, no grocery store, etc. I really have to protect him from getting any infection as he will have no ability to naturally fight off even common cold bugs. If he spikes any fever over 100 .4 he will be admitted to the hospital for IV antibiotics and a possible blood transfusion for an average of 2 to 8 days so you can imagine how hard I'm going to try to keep him from getting sick. And since Steven is my third kid and was lucky to wash his hands once a week--I'm going to have to carry those bleach and water bottles with me everywhere!
I think one of the hardest parts about the daily routine is that I will be spending an incredible amount of time in the oncology clinic. During the second four week stage of treatment I will be there with Steven getting his chemo for ie: Mon--8 hours, Tues thru Fri--5 to 6 hours everyweek for at least 4 weeks. Then it goes to the next stage which due to the incredible overload of info--they will inform me of what that will be when we get closer to that date.
Even through all of this I feel very blessed to know that Steven is still here because they told me that had I not been persistent in bringing him back to the doctor four times before they ordered a blood test--he would have probably died from a heart attack (because he had hardly any oxygen in his blood) within a couple of weeks. So now I'm trying to get past the shock of what's happened and just count my everyday blessings--and they truly are there every minute.
I already feel like such a changed person and I can't tell you how much all the support has meant to Dave and I. I really hope I can continue coming to book club as I know I will need that outlet since my daily routine has changed so dramatically. I'm going to be pulling patience and courage from deep inside that I'm sure I thought I never had but with a lot of prayer and support I know were going to make it! We hope to get out of the hospital with Steven on Sunday or Monday so I'll update ya'll later or feel free to call. Please keep Steven in your prayers! Lisa
11: Update on Steven
Steven is doing pretty well. He came home from the hospital on Tuesday and has been really happy to be here. He in a lot of different medications plus we have a bunch of stuff to help alleviate side effects ie: vomiting, leg cramps etc.. Luckily, Steven has done pretty well on Chemo. He usually doesn't throw up until the third day and thanks to a friend who bought us three extra sets of sheets--I'm pretty good at changing, bathing, and getting him back to bed pretty fast. The only side effect that has been hard to watch is his "moodiness". Those of you who know Steven know he is such a happy -go -lucky kid. He's usually very easy going, however, this Decadron (steriod used during Chemo) causes pretty severe mood swings and hyperactivity and adding the usual three year old "stuff" has been a little frustrating to watch. The other side effect is hunger and food cravings and for a kid who used to be such a picky eater--boy has that changed. He wakes up at 5am asking for pizza and cheetos and just yesterday he ate 12 fish sticks in a two hour time frame! Right now food is the motivator to get him to take his medicine! Steven is severly Neutropenic right now which means he has no ablility to fight infection since the chemo kills all the white blood cells so I can't take him anywhere. Some wonderful neighbors have filled our sand box with new sand and sand toys so at least we can go play in our backyard on nice days. when he's not so neutropenic I will be able to let him play in the front yard with other kids (as long as he doesn't get too close!)
We really appreciate everyone's continued thoughts and prayers because as Dave and I have very clearly realized--the ups and downs of this journey have just begun. Last Friday Steven went back to the Oncology center for a bone marrow aspiration, spinal tap and intrathecal chemo (injected into the spine) to see how much his cancer had decreased in the last seven days. Our oncologist has told us he expected and hoped to see less that 5% cancer cells left (down from 100% the day he was diagnosed) in his bone marrow after the first seven days of treatment. Steven's cancer, however, was only down to 48%. This really hit Dave and I like a ton of bricks because Steven had been acting so "normal" during the last couple of days. Our doctor has said that he's not too alarmed yet--we're going to keep with the same protocal for one more week and this Friday he will do another bone marrow and spinal tap and if his results show andy higher than 30% cancer cells in his bones then we will change protocol, increase chemo and add some new drugs. This was very hard to hear but we are praying that he is just a little slower to respond and hope by this Friday things will have come around.
Every morning I wake up and still feel like I have to pinch myself to really believe we are living through this. Thank goodness Meredith (8) and Emma (5) are starting to adjust a little better. We had to get rid of our puppy (too many germs) and that was hard on them but I thank God that kids bounce back fast. I'm amazed at how at certain times I can talk about it almost casually and not get at all emotional and then at the oddest times I break down at the littlest thing. I've learned very quickly how to pull back, pick myself up and keep smiling because as hard as this is and will continue to be, we have been so incredibly blessed with the outpouring of support from family and friends. We have heard from and received cards and calls from so many wonderful people who have let us know that we are in their thoughts and prayers. Dave and I both find reading all the cards and emails to be such a "build up" and support mechanism for us. We feel it is nice to see how many people care--so thank you to everyone and please continue to keep in touch because it really helps.
The next step? Well, we've learned literally just to take it one day at a time. For me, who's so used to living by my Palm Pilot--I've totally changed my outlook on "planning". Now my only goal for each day is to be able to go to bed knowing that I have helped make it the best possible day I could for Steven and the rest of my family. Not everyday is a good day but as each day goes by both Dave and I believe more and more that God brings so many blessings out of tough situations. Please continue to keep our family in your prayers and once again thank you SO MUCH for all your support. Feel free to email or call--and I will keep trying to update everyone through email. Feel free to pass this on to friends who I may have not had their email. Please continue to keep Steven in your prayers and I will let you know what happens after our Friday visit.
February 15, 2002: What a good day!
What a wonderful day! Steven's test result came back showing less than 1% of cancer in his bones! YEA!!! Right before the procedure the doctor had warned us that if he saw any higher than 5% Steven would be admitted to the hospital, declared a high risk (with lower cure statistics) and started on even more chemo medicines so you can imagine how excited we were to hear less than 1%!! On this roller coaster journey we sure love these good days!
Now were just managing side effects. Yesterday Steven had what the physician has described as somewhat of a hallucination. He started screaming that their were spiders crawling all over him and another time he was almost beside himself saying he had crickets on his bottom. It was very scary but luckily only lasted a short time. His doctor said hallucinations are a side effect but very rare. He also said its hard to tell the difference between a true hallucination and Steven just trying to describe a tingling "pins and needles" feeling he may have been having from the Decadron. The levels of one of the drugs he's taking has built up to a very high level so they had us stop the drug for one day and it was amazing how much better Steven was today--we even saw glimpses of his normal happy-go-lucky self! This afternoon we did, however, have to start him back on the Decadron because it's a very important chemo drug that helps to keep the cancer from crossing into his Central Nervous System and brain (right now he's clear there). So he has to take it for another two weeks and then we switch to the next protocol. He also has started a antibiotic that he has to take every Fri, Sat, and Sun for the next 3 1/2 years straight. We're told that kids on Chemo are much more susceptible to Pneumonia so they keep them on this antibiotic to make sure he doesn't get it.
Steven has a regular chemo schedule (blood counts, and IV push chemo) until Feb 28 when he'll have another bone marrow and spinal tap to look at his results again. Starting March 1 we will be going to the oncology center everyday (mondays-8 hours and T-F 3-4 hours) for the chemo that is "dripped" into the port in his chest. Anyone with creative ideas of how to entertain a child who's hooked up to an IV for 8 hours --let me know! I've started a goodie bag with a bunch of art stuff, toys and movies to help keep him distracted!
Several people called on Thursday saying they were saying a extra prayer for our
appointment on Friday. Dave and I truly believe all these prayers from all our friends,
family and so many people we don't even know have helped to bring strength, support and
now some peace to our family. We know it's still going to be a roller coaster ride but
every day we feel stronger that we're going to get through this and be a stronger family
for it! Thanks again for everyone's prayers!!!
2002: Please Pray
February 19, 2002: PH-All Diagnosis
At Lisa's request, I am going to try to relay to all of you the latest news about Steven. They found out tonight (Tues 2/19) that the reason Steven is not responding well to the treatments is because he as an extremely rare form of leukemia -- it's called Philadelphia Chromosomal Acute Lymphocytic Leukemia (please forgive any misspellings). Less than 5% of all leukemia patients have this form of the disease -- in short, this is really bad news -- it's basically an extremely rare and bad form of leukemia. Steven will definitely have to undergo a bone marrow transplant. But in order to have a bone marrow transplant, he has to go into remission. In order to get him into remission, the treatments he receives in the hospital over the next three weeks must work -- they do not test as they go along to see if it's working -- they do a test at the end of this 3-week period. IF he is in remission at the end of three weeks, they will go home and wait (3 more weeks, I think) for his blood count to return to "normal." If his blood count is clear then he can get a bone marrow transplant.
Apparently San Antonio recently "acquired" a top bone marrow transplant doctor, and transplant success rates have increased since she arrived. Assuming they find a donor, the transplant will take place. They will know 4 weeks after the transplant whether it was successful. Lisa says that the bone marrow transplant survival rate is 40-70%.
Time is not on their side -- this is happening very quickly. I don't need to tell any of you how incredibly scary this is for their family. They are all emotionally exhausted and the circumstances are just overwhelming. Every prayer helps, so please keep Steven, Lisa, Dave, Emma and Meredith in yours. Please forgive any errors in the details as I have relayed them -- this is new territory for most of us.
Laura Esparza(friend of Lisa's)
February 21, 2002: Dave's Letter
You have been getting a lot of emails from Lisa regarding Stevens cancer. I feel it is important to express my thoughts about the recent events that have occurred regarding Stevens battle with Philadelphia Chromosome ALL (Acute Lymphocytic Leukemia). I am speaking from the heart and I hope that you will take heed in my thoughts and insight as we approach this difficult situation. First and foremost, I believe this is a battle that Steven will win. I have great confidence in my son because he is strong, energetic, and positive just like his mother. I need each of you to believe and have faith that he will win the battle as well. Did the apostles and Christ approach life with sorrow, sympathy, and defeat? Absolutely not!!! They approached their life and work on earth with cause, conviction, faith, belief, hope, empathy and victory. Regardless of the situation, good or bad we must approach life in this manner. Nothing has changed except that our family is dealing with an extremely difficult situation. This morning some nurses came in to visit with Lisa and they had a tone of sympathy for our situation. The outcome of this meeting was that it brought Lisa down. As you can imagine, this situation is difficult enough to deal with than to have people visit and talk with us in a sympathetic tone. What we need right now is your prayers, hope, faith, strength and empathy. Let me share with you why I feel we will win this battle:
1) Steven Steven is a child of God and has provided great joy to all who he interacts with. I believe that God has more work for him to accomplish in this world which could lead more people to Christ. Two days before diagnosis (we had a third follow-up appointment scheduled and he was currently on medication), Steven just in a matter of fact tone said, "Dad I need to go to the doctor, I dont feel well". That immediately struck me as odd because he has never asked to go to the doctor. Three year olds do not relish seeing a doctor. In hindsight, was God speaking through Steven? I believe that may have been what was going on. Also, he is a very strong kid. While he was sick prior to diagnosis, he had hemoglobin of 3 (which was described to me as being worse than being on top of Mt. Everest without any oxygen) and though very lethargic, he was still walking around and up and down our stairs at home. In addition, even with this nasty Philadelphia chromosome ALL cancer in him, he still responded to getting his cancer out of his bone marrow from 92% to around 10% with first step therapy. I believe he will go into remission so that we can proceed with the transplant. Steven is a tough kid with a can do attitude and I believe that God has more work for him on this earth.
2) Steven has great medical care. The pediatric oncologists Dr. Estrada and Dr. Greyson have done a superb job and have made the appropriate decisions along the way. Dr. Donna Wall, the director of the pediatric bone marrow transplant program, is well renowned in her field and has had great success. She has an incredible can do attitude. Though she is a straight-shooter and has explained to us that this is a nasty leukemia she offers great hope and to quote "I like the fact that I know what the enemy is (Philadelphia chromosome)" and "our team takes great pride in winning the battle" and "church and prayers are good; we like divine intervention". There is no need to second-guess the care that we are receiving in San Antonio. Also, there are new drugs that have been approved in the last 6 months that may block the effects of this foul chromosome. Regarding transplantation, Dr. Wall has had great success with umbilical cord stem cell blood transplantation if his sisters do not provide a match. We are so fortunate to have great medical care 15 minutes from our home which will make it easier to provide the parental support that Meredith and Emma still need.
3) We are blessed to have health insurance that affords us the opportunity to get the best care possible. Also, my Region Vice-President and company (Medtronic) have been extremely supportive and have allowed me to take the time away from work that is necessary to deal with Stevens cancer.
4) Most important - the prayers, friendships, and support that each one of you has given has been invaluable. We will definitely need your help.
Now, I would like to share with you how we are going to implement Stevens care from this point forward. With your help, we can all provide Steven with the best possible chance for success as defined by getting Steven in remission and ultimately a successful bone marrow transplant with no relapse. The most difficult part of this process has been trying to manage the emotional and physical demands that have burdened us with this malicious disease.
First, to all of you, a positive attitude and outlook is absolutely critical to our success in life and dealing with difficult situations. Please approach any prayers with cause, conviction, hope, faith, and empathy. Dont feel sorry for us, we need to celebrate the fact that Steven may have touched you and your family in a positive way because of this illness. Hopefully you have spent more time saying yes to your kids and hugging them because of our experience. Life is fragile and everyday needs to be approached with the same convictions that the apostles had.
Second, to our great friends outside of San Antonio: Your emails and prayer support has been invaluable. Though we may not respond back to your emails, trust me we read all of them from our college friends (it has been great to hear from all of you guys), friends from Oklahoma City, work colleagues, and those dispersed throughout the country. The management of information can be very tricky and difficult because of the time-constraints we are under at this point in the process. Just know that we need you, we love you, and we love getting your emails. I cant wait to personally respond to you after we win this battle.
Third, to our great friends in San Antonio, we will be leaning on you more because of proximity. The meals have been great!! It is imperative that Lisa and I stay mentally and physically strong which means great attitude, good nutrition, exercise, sense of humor, and sleep. We need to be at our best so that we can be there for Steven, Emma and Meredith. We now have a new normal routine which entails a day by day approach with less concrete planning. Lisa will need some moms that Steven is comfortable being around to relieve her during the day for a few hours so that she can run errands, exercise etc. With respect to phone conversations, we need to be respectful to our kids pertaining to time on the phone and content. We will not be discussing the particulars of his illness in front of them because this causes significant stress to them. They know a lot more about what is going on than we realize. Steven needs to be filled with confidence and a positive attitude. Regardless of age, our individual performance (health, work, motherhood, sports, etc.) is significantly enhanced when we have confidence. The mind is extremely powerful and we need to create an environment that lends itself to winning. So dont hesitate to call, but if we do not answer or return calls it is because of time constraints or activities with our children that try to keep our new normal, normal. There will definitely be times when Lisa and I will need to talk to you regarding the struggles, burdens, and celebrations that we have. We sure appreciate your listening ear.
Finally, I would like to share with you what I have learned from Stevens cancer and what I hope you take with you.
It has been humbling to receive all of the support that each one of you has given to us. Gods presence is among us and we celebrate the goodness and love that each one of you has bestowed upon us. We feel as though we are taking more than we are giving and that is not in our familys nature but we need that right now and we cant wait for the day when we can give back to each one of you.
Also, I hope that Gods gift to each of you through Stevens illness is that you have become more connected spiritually to God and your families. There are numerous extraneous activities in this world that can cause us to become unbalanced and I hope and pray that your families and spirituality have been re-energized because of our situation.
Finally, I hope that each of you affirms that the power of prayer is real and that it is important to live your life with cause, conviction, hope, faith, and empathy. I believe Steven will win this battle and it is my hope that after he beats this illness and you see him out and about in San Antonio or his picture on emails that he will serve as a constant reminder to you of what truly is important in life - your faith and family.
God bless you and please continue to keep us in your prayers,
David, Lisa, Meredith, Emma, and Steven
February 27, 2002: Part 2 of the Journey
Well, after three weeks of feeling like we've been on a roller coaster that was only going down, we've received some news that moves us upward! Today's visit to the oncologist confirmed that Steven was in remission (less than 3% cancer cells)!!! YEA!!! However, (isn't their always a "however"?) since he needs to be at less than 1% to have the best chance at the Bone Marrow Transplant (BMT) "taking" we need to get the cancer cells down to 1 in 1million . Steven is currently at 30,000 in 1million. Soooooooo--here's the next step. We go into the next phase called Consolidation. It's approximately 8 weeks of intensive chemo/recovery periods with the last two weeks preparing him for the actual bone marrow transplant to take place. Our original two week hospital reprieve may be short lived since today they told us to expect to possibly go back into the hospital on Monday. Like everything else, however, we won't know until Monday after the final bone marrow aspiration to determine remission numbers. We keep telling ourselves "one day at a time!!!" The flip side may be that he will go home with a IV pump on a daily basis--we won't know until Monday.
The other good news is thatMeredith is a bone marrow match! What a exciting phone call that was! Of the six Matching categories she was a match in all six! She felt so proud that she will be able to help her brother! Once again another big HOWEVER --Emma on the other hand was extremely upset that she wasn't "chosen". As you might imagine, it is such a difficult concept for a 5 year old to comprehend but after a long crying spell we finally got out of her that the reason she was most upset was that Meredith would get to miss a week of school and she wouldn't! It's amazing what they worry about! We think she is just worried about "missing" out on something (if she only knew........) Anyway, Dave and I told her that she gets to miss as many days as Meredith misses since this really is a "family" thing (how true that is!) Now here's the caveat--Meredith still has additional testing. We still have to meet with the transplant specialist regarding what the best options are ie: sibling match vs. cord blood and statistics on relapse rates, contingency planning, host vs. graft disease and all the other million questions that come up every time we enter a new "phase" in this Leukemia journey. So I guess we could say that it looks really good and we thank God every minute that we have this wonderful option and within the next two weeks we will know for sure what transplant option we will be using. In regards to Emma, however, please if you see her and Meredith together please don't make a huge deal out of it because as fragile as our family's emotions are at this time, we really don't want her to feel as if she is unable to "help" save her brother.
As our doctor said, when the blood counts look good do somthing fun because it can change so fast! Today was a great day in so many ways but the best was--we were able to take Steven outside and to a restaurant for the first time in a month! We had such a great time getting a big boy haircut (total buzz cut--he loves it) and going to the Longhorn Cafe to eat his current steriod driven craving of grilled cheese and tater tots! Dave and I felt so "normal"! And tomorrow a wonderful friend has arranged with Chuck E Cheese to open one hour early so we get the whole place to ourselves! Several other good friends are even going in earlier to "clorox wipe" down all the handles to all the games so it will be nice and germ free (can Chuck E Cheese ever be germ free?) Steven, Meredith, Emma (yes we are taking the girls out of school for this wonderful day--it's a family celebration!) as well as Steven's best little friends Daniel, David and Julia are going to have a blast--it's so good to see Steven smiling again! After 4 weeks of --what would the word be?--we decided Steven needed to have a little fun!
Thanks again for everyones continued prayers! We need them every day because we truly feel not only are they working but I can specifically tell of four hospital instances where I feel that God placed certain people in our life at a specific moment to say just the right thing to help us get through the many incredibly difficult moments we've had over the last 4 weeks. And twice Steven has done something that could only be explained by what I believe is an angel of god talking through Steven. Prayers work--we appreciate everyone of them! Thanks again and we will write again soon! Lisa