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My son had his appointment in Boston yesterday. We met with a bone marrow specialist and an oncologist. Since my son has had no blasts, normal FISH studies, and nothing that stands out on his genetic panel for MDS, they feel that we should back off of the testing. The doctor explanned that she has followed children with hypocellular marrow for many years with no changes and they were able to live a very normal life.
They did repeat the bone marrow failure genetic panel and are doing a more extensive blood cancer genetic panel and many other test.
She also said his peripheral blood counts aren't too bad, Actually good considering what his marrow cellularity is so she wouldn't treat him for MDS if his blood showed he had that because he is doing so well.
I have mixed emotions on our visit to Boston Childrens. I am more confused now than ever!! I have been told by so many other doctors, even by the physicians at the NIH, to keep a close watch.....and then they say back off.
I was hoping for some answers but that didn't happen...looks like continued worrying for me.
I hope you get so.excited answers with your daughters next biopsy.
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