Last week we had our second "Continuing Care Clinic" at the SCCA, overall Georgia's labs look good, she is happy and developing normally with the exception of weight, it was down again. We are still on the two "topical" steroids (meaning not systemic) and will stay this course until at least our next appointment. There is a delicate balance the doctors are trying to achieve.. I am continually reminded that we "aren't going the typical route" in terms of treating her GVHD.
We were told in the beginning that they wanted to see signs of GVHD, if they didn't they would pull back on her immune suppressants to try and create some - this is done in the hopes that Graft vs. Leukemia is happening. Had we gone the typical route of Prednisone there is a good chance we would be past this point, for a moment I felt frustrated so ready to have weight on my girl but I was reminded, from a GVL stand point, lingering GVHD isn't a bad thing with a JMML diagnosis. If her weight isn't up and stable by our next appointment mid to late next month she will be put on Prednisone.
I know so many people who would be terrified to be in my shoes but I also know some who wish this was their problem, all of this leaves me in a strange place. It's scary to know there are no guarantees in life, I am able to bring myself back to earth with the reminder, there were never any to begin with.
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