New member with questions regarding BMT and donor process
My 2 yr old son was diagonosed with MDS on 11-4 after 1 1/2 yrs of having neutropenia. The dr's think now he had MDS the whole time but it was evolving slowly. The doctors want to do a BMT in 3 to 6 months. My daughter was tested and is not a donor match. His HLA was entered into the BMT donor bank this week. We are meeting with the transplant team hopefully in the next 2 weeks. We live in Phoenix and his is currently being treated at Phoenix Children's Hospital. I'll post our full story on the tell your story forum.
I have read all the information on this forum and I still have some questions. I have some questions for families that have gone through this process with your child.
1. How long did it take to find a donor?
2. Did any of the patients get cord blood transfer instead?
3. How long was your child in the hospital?
4. Was your child feeling sick the whole time or did he or she have good days and wanted to play?
5. Can you recommend activities that you did with you child in the hospital when they were feeling well?
As you can image it is difficult to entertain a 2 yr old. When he has been hospitalized for a few days we go stir crazy. Any information would be greatly appreciated.
Nancy (the mother of Noah) DOB 9-18-09 diagnosed with neutropenia 7/10 and MDS on 11-4. Waiting on BMT
Last edited by nbullock11 : Wed Nov 30, 2011 at 04:19 PM.
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