My daughter has MDS
 

Hello

I have a six year old daughter who was diagnosed with MDS in February 2008. She had a bone marrow transplant on April 7, 2008 with a sibling matched donor. All was well until recently she went from 97% engraftment to 47%. Is there anyone out there with a child who has primary MDS? If so how were they treated with and how are they now? I feel like I am the only one dealing with this type of disease. I dont know if there are other options for treatment out there. If we can not get her engraftment back up there they want to do a another transplant where they will use high intensity chemo to totally wipe her immune system out. She would then be admitted for 4 to 6 weeks. From what I have read a lot of children don't survive this type of transplant. Any information you could share would be helpful.:confused:

My daughter Danica who was 11 at the time had vsAA. She had her BMT with a sibling matched donor on 11/29/06 and is now doing great. She had basically the treatment you are talking about..... High intensity chemo to wipe out her immune system. She was in the hospital for almost 5 wks, She did great!!!! she is back in school and playing soccer. We had great help from Dr. Margolis at the Children Hospital of Wisconsin. We had to stay in San Diego but he consulted on her case. Best thing we ever did!!!!

Linda V.
ljvoight@cox.net