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Hi Patti,
First of all thanks Greg for providing the links. I'm not too efficient at that.
Patti, you asked how you get through watching them suffer. Once they started the testing, transfusions and finally the Campath treatment, I just got caught up in getting Don where he needed to go, sitting with him during transfusions, and dealing with whatever health situations would arise. I think at some point the mind just kind of goes into shock and the fear of the future is replaced with the logistics of the day and whatever comes up that you may have to deal with.
More important than anything - don't give up hope. There are many on this forum who have had a grim prognosis that are still here posting. Just make sure you have a specialist in treating MDS. You may also consider clinical trials at some point. The world of hematology is make huge strides every day in dealing with this disease.
We are all here for you - you are definitely not alone.
With prayers and hugs,
Sally
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