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Old Thu Nov 20, 2014, 05:48 PM
edithr edithr is offline
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Join Date: Feb 2011
Location: 30 mi West of Cleveland
Posts: 86
Hi Lizab, and welcome to the forums.

I am in a similar situation with my son. He was diagnosed nearly four years ago with SAA at age 15, and is now considered to have "bone marrow failure not otherwise specified". His counts are low, his celularity is low, and he gets yearly marrow biopsies (on top of frequent blood work). We too are just waiting to see whats going to happen, they've told us that "something is cooking but we don't know what yet". It's wears you down, the worry.

For a long time I would wake up every day and my first thought was, "is today the day he gets sick again?" I went to counseling, and his suggestion was to assume each day was his last healthy day and enjoy it. I know it sounds like a cliche, but it has worked for us.

By the way, I live about an hour and a half from you, and my brother in law and father in law both had leukemia.

So sorry you're going through this, prayers are being sent.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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