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No answers yet! We traveled from Ohio to Boston Dana Farber where we met with a bone marrow failure specialist and extensive genetic testing was done for bone marrow failure syndroms and I recieved an email yesterday stating all testing came back negative. They have done FISH testing but nothing on that as well.
I am kind of unsure of where to go or what to do from this point? I am waiting on a call from Bostons physicians to go over their plan....He currently sees a Hematologist at Nationwide Childrens in Columbus every 3 months and another BMB scheduled for December 28. I am amazed with today's technology no one can figure out what is going on with my child.
Do I stop doing BMB and back off on testing and watch and wait or do I remain aggressive and continue BMB every 6 months and bloodwork every month????
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