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Old Sat Aug 29, 2009, 02:01 AM
Stephanie Stephanie is offline
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Join Date: Aug 2009
Location: Arizona, USA
Posts: 6
I am the mother of Dylan. After his third BMB we thought we would have some answers but that wasn't the case. They kept us waiting for two weeks afterwards saying that all of the results were not in. They weren't sure if it was AA or MDS. His doctor believed it looked dysplastic but wasn't sure and had one of her collegues look as well, she also believed it looked like MDS. They sent his slides off to a specialist at Duke University and he said it was AA. So we waited another month and on wednesday we will do his fourth BMB. They have already scheduled him to recieve ATG one week after, which frankly upsets me. I was ready to start treatment after his third biopsy but they wanted to wait to be sure because, "ATG treatment isn't benign." What will it do to my son then? And why schedule BEFORE the results of the fourth biopsy are in? Their answer: they did a preliminary search for an unrelated donor and came back with nothing and his doctor ran his case past some collegues and her mentor from Johns Hopkins who said to treat him with ATG. So NOW we are doing something. I guess I should be happy, it is just frustrating. I want them to know exactly what is going on with my son and FIX IT RIGHT the first time. I know it's never as simple as that, thanks for letting me vent....
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mother of 3 yr. old diagnosed MDS with Trisomy 8 September '09
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