Friday, August 15, 2014

A Week of Surprises and of Blessings

August 9th - August 15th

So I think that I have officially given up attempting to write two "Camryn" blogs per week. For some reason (six needy children might be a good place to start) I just can't seem to get it done. For now, one per week will just have to do and they will be posted on the weekend, like this one. Now, for Camryn's update...

Camryn continues to progress in so many ways, except in one area; being compliant with her medication regimen. Since I would prefer to not dwell on the negative, let's just move on to the more interesting items. Camryn had her two medical appointments at Vanderbilt this week. Both appointments went very well. Medically, Camryn is doing as well as any bone marrow transplant patient could be doing. In fact, one of her main medications, Prograf, the host versus graft anti-rejection med, is going to be slowly weaned off of Camryn. This is a significant change in Camryn's post transplant treatment. Since the transplant, Camryn has shown no signs of her body rejecting Morgan's donated bone marrow and the disappearing warts are a clear sign of a functioning immune system. Now here is the interesting part in all of this; The Prograf suppresses the body's natural immune response to attack "foreign bodies", or the transplanted marrow. Essentially, the Prograf has been "protecting" Camryn by suppressing her newly installed immune system. This is all my own "lay man's" terms for trying to understand something that I really don't!  The point is, today Dr. Frangoul said, that once Camryn is off the Prograft, her immune system will "really" kick in and that those remaining warts "won't have a chance". Camryn's formerly GATA2 condition will be completely reversed. Dr. Frangoul then shared with Lee Ann a newly published article from a medical journey discussing recent clinical data regarding GATA2. The article discusses the clinical outcomes of all GATA2 patients followed in this particular study. All of the children eventually developed some form of cancer, particularly leukemia, and / or had massive infestations of infections.  The harsh reality of the future of patients with GATA2 who go untreated. Once again, we count our blessings for those nasty, nuisance, pesky, life-saving warts. They have served their purpose, but must now face their demise. So, there you have it, our week of unexpected surprises and an appropriate reminder of blessings.      

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