This bubble was soon popped on April 4th, 1997, when the doctors told our family to start looking for a donor, that he was no longer in remission. This has lowered his odds of survival to 20%. The hunt for a donor was on. The national bone marrow registry said he had nine matches. Five for what ever the reason did not qualify. That left four. Two did not respond or were disqualified for health reasons. That left two! It was down to what donor got the physical the fastest. Then we found out one of the donors passed! We were so excited! Steven had a donor! Then his doctor attended a conference in Florida and found a new chemo that had worked well with adults getting them ready for transplant but had not been tested on children. We weren't even sure what dose to give him. We were afraid to use the new chemo, but knew it was the best chance and could help many others if it worked. The chemo worked! He was able to go to transplant now. Then with just weeks to go Steven found himself battle fungal phenomena. This was very bad we did not know if he would heal in time for the transplant. Just days before the transplant was scheduled, x rays showed it cleared just enough to go to transplant. The fear of the fungal phenomena returning made his odds almost zero. Our family was forced to plan for the worst. Thankfully Steven has received an unrelated bone marrow transplant and after almost of year of battle GVH (Graph verses host, rejection) and post transplant side affects he is now SIX years in remission!! He even got to meet his donor and has become close to him. He still goes in every four months for a quick CBC (Complete Blood Count). and they are watching his organs for any side effects from the chemo and full body radiation he received. His pituitary glad and testicles do not work properly at this time so he takes growth hormones injections(donated because we could not afford them and our insurance would not cover them) at night and will more then likely not be unable to have children. Steven is now healthy enough that the surgeons can now address his clef lip and palate. He has mild cataracts from the long-term steroids and just had bone removed from his hip and put in his jaw to help with the clef repair. He gets his braces next month!! YEAH!! However to look at him you would not be able to see anything but a normal 11 year old. Steven even has his first girl friend! Steven is a fun loving sweet kid. He always wants to please and loves to snuggle. He touches everyone's life that meets him! He loves to read and draw. He hopes to be an architect or cartoonist when he grows up. We made this site to encourage people to donate life saving bone marrow and blood. To help new families fighting our battle and most of all to honor the donor who saved Steven's life and one really tuff kid who we are all VERY proud of! Steven you’re my hero!
Steven loves Drawing, Legos, the color blue, Reading, Playing video games, Nintendo 64, X-box, Computers, and playing with his brothers!
Back to Steven's Main page