Tag Archives: illness

Why you should join the bone marrow registry

Tomorrow my brother Brian would have turned 31. When he was 25, he died of leukemia. I was his bone marrow donor.

He was a quiet and smart person. He was working on his doctorate in computer engineering when he got his diagnosis. He liked computer gaming and anime and was a complete geek without caring at all about the designation. He first introduced me to chaos when I was in high school by showing me the logistic map. “That’s nice,” I said, and went on to other things, only to take up research in the field after his death. He played racquetball somewhat poorly; he was too laid back and unaggressive to play as boldly as the game required. He wore Hawaiian shirts and shorts year round. He liked to be different and to ignore the puzzlement of others. He once had a bad review as a TA because he failed to button his shirt. He was 6’5″ and looked like a viking.

When he got sick he lost his hair and his burliness. He didn’t complain. I donated marrow stem cells once, and some other cell in a similar procedure another time. I complained a lot. He kept trying to work on his research. His greatest vexations in the hospital were getting switched rooms constantly and the poor quality of internet access. When things went bad he entered hospice, again, without drama. His gums would bleed, he was covered with bruises and he hallucinated often. It never broke his spirit. He kept watching anime and kept playing computer games and didn’t complain. He was obviously often upset; once when they made him switch rooms he was so frazzled he cried. But he didn’t complain and he did his best to be helpful to the nurses and document his medication well. Leukemia does not define my memories of my brother but it certainly curtailed them.

Not everyone has the luck to have a bone marrow donor when they need one.  When I was matched with my brother, I was told there is only a 25% likelihood of matching for each pair of siblings. The odds of matching go down significantly beyond sibling relationships. A little less than 50% of marrow donations in 2006 came from a non family member. Matches can be especially hard to find for minorities. We need more donors.

So join the bone marrow registry at marrow.org. It is totally free to join, and you are eligible if you are between 18 and 60 (I tried to look if this extends beyond the US; it should, but I couldn’t find it on their website). They will send you a free kit with several q-tips. You swab your cheeks with the q-tips and then send them back.

There is a 1 in 540 chance you will be selected to donate, but even then, you are not required to do so. When you donate, they sometimes still draw marrow from the hip like you may have seen in TV shows. More often, the donor is given a drug for several days that causes marrow stem cells to circulate in the blood stream. Then they draw blood and separate out those stem cells, and put the rest back. It’s a lot like giving blood except the procedure takes a few hours. If you have more questions, marrow.org has a lot of helpful information. Please join, and thanks!