Day +166 - Independence Day

Today as we celebrate independence in America, we are celebrating independence from a regular clinic visit, a week off.. this is the longest we've gone since December.
The past couple of weeks have had ups and downs and the jury is currently out on where we stand.. Georgia's labs have been holding steady which is great, liver functions are back to normal or just slightly above, we finished our Tacrolimus taper but eating is still hit and miss. Last week we had our first "Continuing Care Clinic appointment at the SCCA, in the days leading up to this appointment I found myself very bitter that we had to go - I so badly wanted to be done with the SCCA but because of the GVHD flare we needed to be seen by one of the docs that specializes in GVHD - fortunately this is a doc whose been with us all along. No surprise the message was the same as it's always been - we want her weight up. I understand and agree, I want her weight up too.. the one factor they don't give any leeway on.. she's a very active, picky toddler! Some weeks she wants avocados and french fries but others all she'll eat is broccoli and bananas. There was a new discovery, upon examination of Georgia's mouth the doc saw some white "spidery" lines.. this is chronic GVHD... they don't treat this type of GVHD, at first my stomach sank - not more GHVD... but we were told that this is a positive, patients who have chronic GVHD have a lower risk of relapse. I know this is a good thing, but in this case it's just a different version of scary. All in all the doctor looked at us and said "I want you to know Georgia is doing fantastic." I wish that made me feel the way I think the word fantastic should. Of course I am thrilled that he's able to say this about my daughter, but our day to day life is hard and filled with uncertainty. If Georgia's GVHD flares again, or her eating drops off when the steroids are tapered (again) she will certainly be put on Prednisone, likely at a low dose but likely for a minimum of nine months.
As we move forward, our hope is for continued independence, independence from clinic visits, labs, overnight hydration and medicine. Our family, but certainly Georgia belongs in the "land of the brave".. we'd just like feel a little more a part of the "home of the free!"

Happy 4th of July