Hi Nicole, Thanks for your reply. I always appreciate your comments as I know you've been down this road and have followed many of the same people that we've been fortunate to have followed along this journey. I value your feedback. It is good to know what markers to be aware of. Thanks for sharing this important information.
I believe you are absolutely right and have pretty much hit the nail on the head as to what "our" thoughts are and how this whole child/adult transition is evolving.
Going from Pediatric Hem/Onc Medicine to Adult, really threw us for a loop as we were transferred during relapse and basically to the "next available doctor!" Very disappointing...very different type of care. In Pedi, the doctors/staff guide you carefully, in Adult Med unfortunately not so much. Fortunately, we switched doctors and are much more comfortable with the "new doc" and the manner in which she's proceeded to treat Yashar.
Currently, we are once again awaiting word on a new appointment to meet with the BMT team at Stanford. We had already met with them last Summer and that unfortunately didn't go well. It seems that with the switching of Dr's, the BMT initial talks/meeting sort of evaporated into thin air or were put in the back burner...very strange.
I'm trying my best not to leave any stone unturned...trying to explore options. I've been keeping up with latest on "Healio/HemOnc Today" and there seems to be a lot on the horizon...the latest med article, "Aryl hydrocarbon receptor may play role in red blood cell development" Very interesting reading sounds promising, but perhaps not for us this late into this whole ordeal...
Overall, Yashar IS very tired of living with the ups and downs of the numbers. Thankfully, he hasn't lost his sense of humor and he LOVES teasing me that the decision will by my call! I know he's just kidding as he tells me that IT will be his decision.
I believe Yashar has received a total of about 25 RBC tx's and a few "Leukocyte Reduced" units of platelets in total. But, I am also concerned about his long-term use of CsA though.
We both are just so tired...
