Tuesday, October 21, 2008

Another wrinkle in the works

Things don't always happen the way we planned, and I sometimes think nothing in my life ever happens smoothly. There just always seems to be some wrinkle in the works, some thing, big or little, that shows up and makes things more difficult.

I got a call from NIH today, from the director of the marrow donor program with some news. Since my brother died they have discovered a genetic mutation, a protein, that is associated with bone marrow transplant failure. This may have been the reason my brother's transplant did not work. If I have this mutation, I cannot donate marrow because the recipient would die. I might be a carrier who never develops the disease, but if I have this protein I can't give marrow. SO I am now driving up to NIH on Friday with my mom and the kids for some genetic testing. I should know within a week if I am still eligible to donate. It's frustrating to think that they didn't have this information in time for my brother. If we had known that a transplant would have failed, he would never have had it. And then how much longer would we have had him? I miss him a lot, but more so in this month when all the memories seem to be sharper.

This is really difficult for me. I was hoping to be able to donate, not to be heroic or noble, but because I feel it would somehow redeem the month of October for me and my family. But my mom reminded me that God is still in this because even if I can't donate, we'll have discovered something that could help my children, my brother, others in our family. We have lost so many family members to illness and have never had a name for it. There have been some genetic things discovered, but there were still so many unknowns. Maybe this is finally it. It's just another long trip to Maryland when I was hoping that my next long trip would be the donation process.

No comments: