The past few days have felt like a lovely little bubble of time.. we were officially discharged from the SCCA on Friday, had a nice weekend and yesterday had our first appointment back at Children's Hospital where our doctor said Georgia is doing great. This is the same doctor who has literally been with us since day one - she was the on call Oncology Attending the night we were in the Emergency Department, she also happens to be the oncologist who specializes in JMML. This doctor gets me, she has said on more than one occasion if that every time I met with her I yelled and screamed at her she would understand... and how she didn't know how true the statement "I would throw myself in front of a bus for my children" really was until she became a mom. I felt a great sense of ease knowing that we were going back into her care.
Georgia started a taper on three of her medications on Sunday, the two steroids that are treating her GVHD and one of her immune suppressants.. this is where my worry starts to creep back in, I am again tracking every bite, psychoanalyzing her fussy times and trying to remain calm. If we can successfully follow the taper schedule over the next several weeks we will be in a very good place, right now I am just watching for her body to let us know what it is ready for.
Just before we were discharged after transplant I was contacted by a photographer who had heard about our blog through a friend and offered to take pictures for us.. not knowing what our clinic schedule would be I suggested a Day +100 photo shoot, feeling that the milestone certainly warranted something to commemorate it. Today we made that happen, the weather held, Georgia turned on her charm and away we went.. I will see the photos in the coming days but the photographer, Michelle Enebo sent me one sneak peak.. this was an idea that she had, a special way to honor where this journey began and I love the way it turned out.
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