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Changing plans

Posted Oct 13 2009 10:05pm
I got a call from Moffit yesterday regarding a donor for transplant. I was told that there are no adult donors compatible for me. They ran a search and four people came up. One was unavailable and the other three were only 8/10, they want 10/10. 8/10 is acceptable if they are matched in certain criteria, and these were not, so they know it is not OK to use them as the transplant will fail. They are recommending that I have a cord blood transplant, which is infant's cord blood. At this time this is my only option, I am okay with that, but it is changing my thinking pattern from an adult donor to a child that I am having a hard time with. I will actually receive two different children's blood to equal the amount you would get from an adult.

Moffit does not do cord blood's that frequently, so that has me concerned and now it comes into play is it the best hospital for me to go to? They have a new doctor on staff who did them at her old hospital and they are now beginning to do them more and more, she would be on my transplant team, but the nurse I was speaking with could not give me a lot of information. I spoke with my local doctor and he agreed cord blood was a good choice for me. He had a patient who had it like 14 months ago and is doing well, he went to Duke, so he is going to work with Steven and I talking to Moffit and ensuring that they are best fit for me, or help find us a place like Duke or somewhere else that is.

With cord blood, I will also have to receive total body radiation, which does not sound like fun to me. There is a higher risk of infection and your counts take longer to recover with cord blood. On the plus side, there is a lower risk of Gvh, which is something that happens after transplants, it can range from mild to life threatening.

Please keep us in your prayers for figuring all of this out, nothing is simple it seems we are destined to travel down a difficult road this whole experience. I want to ensure that I get the best possible care with doctors who have a lot of experience doing this so that I can have the best outcome. It does not matter where we end up, whether Tampa, North Carolina or somewhere else, as we are going as a family for the three months I have to be there, but when plans have been in place, to think about changing them now is overwhelming.

I have an appt tomorrow in Tampa with my oncologist to discuss when and if I need another chemo treatment before transplant. I will be just going for the day for the appointment.
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