In December of 1995, I had an odd rash and an hour long nosebleed that my parents could not explain. Blood work at my doctor's office revealed dangerously low blood counts. My platelet count was 4,000. Normal is 150,000 – 400,00. A platelet count below 6,000 leaves a patient at risk for spontaneous brain hemorrhage.
I was sent to Children's Hospital, where I was diagnosed with Aplastic anemia on January 12, 1996. Since none of my immediate family members matched my bone marrow type, I underwent a round of immunosuppressive therapy.
A short time later, doctors began to think that I might have Myelodysplasia. Since this is a more serious diagnosis, I was prepped for a transplant with my uncle as the imperfectly matched bone marrow donor. But a bone marrow biopsy done the day before the treatment was to start revealed that I was unexpectedly in remission. I was released from the hospital and monitored closely with regular blood work and doctors visits.
About a year later, a virus led me to relapse with low blood counts again. I began immunosuppressive medication, and improved slightly. The medicine was tapered off, and I was monitored as I remained stable, albeit with lower counts than normal, for about two years. During this time, my brother Alex was born. I was lucky that he was a bone marrow match, because there is only a 25% chance a sibling will match perfectly.
In 2000, another virus dropped my platelet count. This time it did not recover. I became dependent on platelet transfusions every 7 to 10 days, and red cells every two weeks. Based on this deterioration, my parents and doctors began discussing options for bone marrow transplant. We spent lots of time researching to find the least toxic, but most effective conditioning method for the transplant.
Eventually, we decided that I would be treated in New York. I was prepped and went to transplant in June 2001. I received bone marrow and cord blood from my brother on June 26 and 27, 2001. Then we began a year of recovery. I remained in total isolation for 100 days, then in isolation from crowded places for 1 year. This was accompanied by some mild complications including infections, rashes, many medication side effects and a mild graft reaction. After 1 year I was pronounced cured. I now see the doctor only once a year for routine blood work and celebrated official 5-year survivorship in 2006.
I am thankful to all the doctors, nurses, family, friends, and of course Alex, for all the help they gave me.
By My Numbers (estimates)
20 bone marrow biopsies/aspirates
187 blood/platelet transfusions
27 finger sticks/other IV insertions
340 blood draws
13 total weeks in the hospital
4 surgeries (to place and remove two central lines)