Day +143

I have always operated as a glass half full person but lately there has been a lot of frustration and asking the question why. I thank god every day for Georgia, she is literally the light of my life and what keeps me going, she makes me smile and is my reminder that there are good things in the world.

Last week when talking with Georgia's doctor, I said, when all of this started we were told this would be a marathon.. it's a not marathon, it's more like 10. She looked at me and said it's so hard to tell families how to prepare for this because it is such a long, hard haul.

I am frustrated because we had to restart Georgia's steroids because essentially she wasn't set up to succeed. The one drug that was suppose to be supporting her whole body as three medications were tapered off wasn't watched closely enough and fell below therapeutic levels for a bit.. this allowed the GVHD to flare so we start again. Starting again isn't as simple as a few days of medicine, it is a minimum of a 50 day course of two steroids then we try again to taper.

Life right now is a game of what I should be afraid of.. it's always changing but it's always there. I'm scared of her not eating or weighing enough, I'm scared of her lab results, I am scared of GVHD, I'm scared when my phone shows 987-0000 is calling.. Children's Hospital but most of all I am terrified of disease. I want the world to leave us alone and let us move on, instead this week we gear up for our Monday clinic visit and an MRI on Thursday.

I hate complaining or feeling bad for myself, it's not who I am .. I'm certainly not moping around the house or throwing my hands up, Georgia and I play and dance like nobody's business and we make the very most of every single day - I know we have years ahead of us where things will be simple and not filled with fear.. I'm just trying to let it go to keep up the fight.