[Lisa V]

Deanna, I suspect it varies from hospital to hospital what their policy and procedure is on that. I've heard from a number of patients whose doctors had their siblings tested at diagnosis, but ours didn't seem to want to do it until we pushed him on it. It may have been because it can be a very expensive procedure if you don't have good insurance coverage. No, it's not the standard cheek swab test that the general population does when signing up with the bone marrow donor registry. This is high resolution testing, and would be done by the center where the transplant would take place.

We had to meet with a social worker and jump through all of their hoops (counseling, financial statement, etc.) as if we were actually heading towards transplant, even though that is something we've always wanted to avoid if possible. We just wanted to know if he had a match, because our doctor kept bringing up the topic of BMT, and we didn't see how we could possibly have an informed conversation without knowing that. If he didn't have a match, we didn't even want to consider it at his age. As it turned out, he does, but we still don't want to do it as long as he has good quality of life on IST, and the transplant center agrees.

I suggest you ask your doctor what the procedure would involve for you, and how much it would cost. You may not have to go through all the hassles we did. I would certainly want to know.

As far as an MUD search, I would wait. You won't need to do that at all if it turns out you have a sibling match, and you want to know what kind of a match is available at the time you need it. That can change. Most likely if you don't have a sibling match they would want to try ATG before launching a search for an unrelated donor. That's the usual progression.