[Stephanie]

Alida,
I am amazed at how similar our stories are! My son's journey also began in May of 09 with possible Leukemia- then AA and now MDS. Has your son undergone a Bone Marrow Biopsy? It took 5 for us until his doctor was satisfied, before the FISH test he was borderline Aplastic Anemia or MDS. It was a very frustrating time, if you need any help or have ANY questions please ASK! The first doctor we went to didn't act like they'd ever encountered anything like what my son was experiencing so we went for a second opinion. The second doctor said much the same as yours "it is a faily common disease (AA), see- we have a space for it on our appointment sheet" like that meant they saw it often. I had to ask specifically HOW MANY children and what the youngest age was they had treated- turned out they had only seen about 10 children and my son was the youngest. I agree that there aren't any support groups that I could find in dealing with PEDIATRIC AA or MDS. There also isn't much research which makes it difficult to decide which route to take. Has your son been HLA typed just in case he does need a BMT in the future? Does he require blood AND platelet transfusions? I hope things continue to go smoothly and you find answers to your questions. Please let me know how things progress.