This week turned out to be far more mentally and emotionally challenging than I'd planned. Monday morning we arrived for our 4+ hour infusion of IgG and about two hours in Georgia had a bad reaction, breaking out in a rash all over her body. They had the doctor come down to take a look and in the five minutes it took for her to get there it was spreading. They stopped the infusion, gave her a dose of steroids and it eventually resolved. It is so hard to be somewhat of a spectator in all of this... I find myself wanting to scream at these people that this is MY daughter and I get to decide what she is given... the transplant team doesn't work that way.
Tuesday we only had one thing on our schedule, our "arrival conference" with the attending transplant doctor. We sat in a small room filling all six chairs - myself, Brian, Leslie (step mom) and Kathye as well as the attending and a nurse. The information that was shared was for the most part things that I had heard before - how harsh this chemotherapy regimen is, what parts of her body could be permanently effect by it, how the transplant works, what signs they will be looking for to see if she is getting Graft Versus Host Disease... something they actually want to see signs of because they have no other way to look for Graft Versus Leukemia - something they want to have happen. They talked about how many medications she will likely be on for a year or more, that we will likely be giving her IV medication at home. The piece that was new was that we asked - so you're sure? You are sure that our healthy, beautiful, lively daughter has JMML? The tumor in her leg is dead, her bone marrow is improving... Is there a chance you should re-run all of these tests to re-confirm your diagnosis? Yes, this is JMML and no we will not be re-running tests was what the somewhat arrogant attending had to say. As more questions were asked and answered something was blatantly clear - the SCCA operates solely on worst case scenario, they give you the most extreme, most devastating data - there is no bad information followed by but a lot of people do well... there is no glass half full. At the end of the conference the attending turned to Brian and asked based on his understanding of the information given if he was comfortable going to transplant. I let out a little uh and then became quiet again. In my head I was screaming are you kidding you arrogant ass? Look, I get it there is no better place in the world to get a transplant, there are insanely intellegent people who work here but no, there is not one piece of information that I am comfortable with, nothing in this process is remotely comfortable to me.
Starting this process with the SCCA has been like getting punched in the gut multiple times a day all while trying to care for my 13 month old that no one cares needs a nap or is hungry or simply wants to move around. This week I have felt myself start to crumble, I am so afraid that if I let myself cry, I mean really cry that I truly won't be able to stop. This is too much, I don't like it, I'm not comfortable with it and we have to do it anyway.