Day +72

Today was.. exhausting. Brian left early for a trip so Georgia and I were on our own for our clinic appointment. We had our routine blood draw then headed upstairs for our date with the dietitian. I knew the food records that I'd filled out over the past three days weren't enough.. not enough to cut back on TPN, not enough to get us where we need to be going. I was candid with her and said that I'd hoped we would have had several days like we did on Monday with over 600 calories but that just didn't happen. Thankfully Georgia's weight was up by about .04kg but still down .005kg from our first weigh in.

When the team came in we talked about the fact that Georgia needs to be gaining weight, that the current drugs aren't solving the whole problem although they have helped. I guess I went into today's appointment thinking that the next step was clear, we'd start the Sirolmius that we had talked about during our last appointment. Instead I found myself smack dab in the middle of conversation talking about several different "options".. the NG tube, Prednisone, Budesonisde (a topical steroid that treats lower gut GVHD) as well as Sirolimus. We talked about my pros and cons for each.. I said I wasn't sure why we wouldn't do the Sirolimus, it has shown in a small study to be effective against mild GVHD as an alternative to Prednisone and although it isn't protocol there might be a secondary benefit that it would combat JMML.

The current attending doctor is the same one we had going into transplant (yes, former said ass whom now we are thankful to have on our team) so he knows us well. He said that he would not start Georgia on Sirolimus to combat JMML that idea is still a theory and not practice (yet?) but that he would consider it because of her GVHD based on the study. Ultimately he said if the time comes when we need to do Prednisone I will let you know but right now I can honor your request to be a part of this process and ask you what you'd like the next step to be... ummmmm is all I could think. I am an advocate and want to be part of this process but I'm not dealing with the same depth of knowledge that everyone else in the room is... I took a breath and didn't allow myself to hem and haw like I wanted to - Sirolimus. The PA also said why not see if we can get her to take the Budesonide (it's a capsule that has to be broken open, put into food... then hopefully she'll be willing to eat) to see if maybe there is a little bit of lower GVHD... just higher than the sigmoidoscopy could show.

I left with my head spinning.. called Brian, this is what happened, did I make the right decision? Called my sister... did I make the right decision? Called my parents... did I make the right decision? There is a voice in my head that occasionally says don't screw this up (we'll that's the PG version) and I kept wondering... am I screwing this up? What I know is this, first off the doctors aren't going to give me any options that aren't viable, second, yes I did choose the one that isn't standard practice but at the end of the day if Georgia doesn't gain weight by our next appointment she will be put on Prednisone. Lastly, every fiber of my being says that we are going to do this and be done with it... move on with our lives but in the chance that JMML were to come back I would always ask myself what would have happened if we tried the drug that "in theory" combats JMML.

Late this afternoon Georgia and I did some serious playing that brought out squeals of laughter.. the kind that you will continue to do anything to get, it was just the mental break I needed. Thankfully Brian's trip has all Seattle overnights so we'll be able to talk this through in person.

This evening Georgia pulled herself up on our wine rack and pointed to each bottle saying "ba-ba", "ba-ba"... she is now asleep and mama is enjoying some ba-ba.