Third time's a charm!
Racing for Will...
Welcome to my Team In Training home page!
I am about to embark in another wild winter NYC season to train for my THIRD triathlon as a member of The Leukemia & Lymphoma Society's Team In Training. All of us on Team In Training are raising funds to help stop leukemia, lymphoma, Hodgkin lymphoma and myeloma from taking more lives.
Everywhere you go, you meet someone who touches your life in one way or another. This year, I'm completing this event in honor of WILL SHORE.
Will was 15 months old when he was diagnosed with type three Acute Myelogenous Leukemia (AML), a fairly rare and virulent form of AML. He did not have any central nervous system involvement, so his chance of survival at diagnosis was about 20%. He was treated with chemotherapy at Memorial Sloan Kettering, a massive, scorched-earth induction round of chemo, followed by eight consolidation rounds in rapid succession (meaning as soon as his counts were back they would hit him again). All in all, he was in treatment for about a year, the majority of which was as an inpatient because he was so immune suppressed. (His diagnostic blood work revealed a neutrophil count of 0, and ridiculously low platelets. It was so extreme that the doctors came to his family and told them that the blood work had been mixed up in the lab because the results couldn't possibly belong to him. That was when his family knew that they had fallen down the rabbit hole.)
Will would have had a bone marrow transplant to give him the best odds at beating the AML if he had had a match. But despite their enlisting the help of the New York Blood Center, which was doing pioneering work in HLA data banking, searching many other bone marrow banks around the world, and running thier own bone marrow donorship drives, he had no match. Now they might do a parental half-match transplant, however the technique was then in its infancy and too many patients died from complications. So his doctors just had to chemo him nearly to death and hope for the best. Luckily, he had no CNS involvement so he did not have to endure radiation of any kind.
He was tough and resilient throughout his treatment, bearing the chemos amazingly well. Of course he lost his hair, had infections and joint pain, and lost a third of his body weight, which is a lot when you only weigh thirty pounds. At one point, he stopped eating for three weeks. Every day his family fought with the nutrition people to keep them from giving him a feeding tube, which comes with its own ugly complications. Finally, on the last day of the last extended deadline they had to get him to eat, he ate and kept down seven Cheerios. It was hugely celebrated, and he managed to avoid the feeding tube.
After about a year, he was seen bi-monthly and then monthly for blood work and spinal cord testing to look for a recurrence. Gradually, over years, the testing became less frequent until now, when he is tested annually, as he will be for life.
He is now 12 1/2, in seventh grade. He is 5' 6" tall and he weighs 120 pounds. He plays varsity football, classical piano, keyboards in a rock band, and computer games whenever he can wheedle his parents into it. He is an A student and will soon begin thinking about where he wants to go to high school. He is a sweet and loving brother and son. His family is grateful every single day to have him here.
Needless to say, his family feels like the luckiest people on earth!
Will and other people like him are the real heroes on our team, and we need your support to cross the ultimate finish line - a cure!
Please make a donation to support my participation in Team In Training and help advance the Society's mission.
I hope you'll visit my web site often. Be sure to check back frequently to see my progress. Thanks for your support!
