In the fall of 1986, I felt sick at school and ended up going to the nurse’s office and then to my pediatrician. He took some blood tests. The next thing I knew I was at Children’s Hospital in Boston receiving many more tests. I spent the night at the hospital and was admitted so that more tests could be done. One that I remember was the bone marrow biopsy because having a large bore needle stuck into your bone and having the marrow sucked out is painful enough to be remembered for a long time.
The result of the tests at Children’s Hospital and the further tests across the street at the Dana-Farber Cancer Institute determined that I had a form of myelodysplasia and was missing half of chromosome 13. At this time, genes and all the proteins they encode was still a bit unknown. It was known that chromosome 13 contained many genes encoding tumor suppressors. It was also know that my specific problem had only been diagnosed in a handful of people. (Later, I think I remember hearing I was number three.)
The Bone Marrow Transplant…
Previously to 1986 someone presenting the same symptoms I had would be diagnosed with ‘pre-leukemia’ and almost nothing was done until actual leukemia presented. The doctors knew how to treat leukemia so they would wait. But in 1986, there was an experimental procedure the doctors felt could help me: a bone marrow transplant. They first took blood samples from my parents and brother, and felt my brother offered the best match. They gave my parents about a 10-20% chance it would work.
In 1986, there were only a dozen or so pediatric bone marrow transplant rooms in the entire United States. There was talk of moving to Seattle or Houston, however I was lucky and there was an opening at Children’s Hospital just minutes away from our home in Boston. After almost two months in the sterile, isolation room, and having total body radiation, chemotherapy, and receiving my brother’s bone marrow, I was released home on Christmas Eve.
Nearly twenty five years after the bone marrow transplant, my brother’s bone marrow turns out to be a perfect match resulting in a normal life without any medical complications. I played sports in high school and college, traveled over 30 countries on six continents, scuba dived on the Great Barrier Reef, saw lions while walking in the African bush, watched the sun rise from the top of Mt. Fuji, been to places in Antarctica where nobody had ever been before, and had many adventures.
I asked my doctors what I have to expect in the future, and they said they aren’t sure – being one of the first bone marrow transplant recipients I am one of the longest term survivors.
Cycling to Celebrate…
Realizing that the twenty fifth anniversary of my bone marrow transplant was coming up, I began thinking about what I should do to celebrate it. I always enjoy traveling so I decided to ride across the United States from West to East and arrive back in Boston for the anniversary.
I hope my ride is able to inspire others that life is special and should be celebrated in addition to bringing recognition to both Children’s Hospital and the Dana Farber and the doctors I had and the wonderful stories of their work.