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.
