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Old Thu Jul 27, 2017, 08:12 AM
Callie Callie is offline
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Join Date: Jan 2014
Location: Fayetteville, NC
Posts: 25
Dad (Bailie), as you know, researched everything and wanted to go into all of his appointments as prepared as possible, with relevant questions. His doctors said he was the most informed patient they'd ever had - and they welcomed it, actually (I was at many of his appointments and talked to the doctors, too, so not just taking his word for it )!

I honestly don't know if they'd have been as aggressive in his treatment (again, positive) had he not brought up the various studies he found, treatment possibilities, questions, etc. His doctors (and entire care team throughout the illness) were amazing to work with, welcomed his insight, and while there were, at times, minor disagreements on the findings, they were never, ever negative. And from a personal standpoint, I don't know how we (mainly Dad, but I researched almost as much as him, hoping to find something positive for every negative piece of information found) could have done the journey any differently. I know there are many who go by the saying, "ignorance is bliss". That just wasn't us. We were very fortunate for the many websites, this forum, and his doctors having very open minds.
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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