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Neil,
I'm Tree's husband, the results from his Bone Marrow were abnormal and no they haven't really discussed this in detail. Our son is under the care of quite a well known Hospital in the UK with a dedicated Pediatric Hematologist, his results are with Oxford for research at the moment (And have been for the past 6 months). What my wife is referring to, is the shear frustration of not knowing what the future holds for him, as he is in pain most days with either aches and pains in his legs, to chest pains and more and more commonly sever headaches (inc pains in the backs of his eyes). When we mention these symptoms to the Dr, they don't shrug it off, but nor do a great deal about it.
I accept what ever has gone, we can't change, but we do need to try and find out what we can do to make his life a little more comfortable.
He's due his 9th Blood Transfusion in the next two weeks, his Hb levels are kept topped up by regular transfusion, on the last transfusion 2 weeks ago he was 6.7 before he was transfused. If we go every 4 weeks, his levels slowly creep up to 12-13 but this took best part of 6 months. During the period between his 7th and 8th BT we left it 5 weeks instead due to Bank Holidays and this had a massive effect on his Hb level dropping, this extra week took us back 4 months.
I hope this helps, to try and get a greater understanding of where we are.
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