I’m so lost, I don’t even know what I wrote about last so forgive me for any repeats in advance.
In exchange, I will try to punctuate.
A slew of tests day before yesterday knocked our boy on his ass. He usually comes out of sedation like The Four Horseman from the Apocalypse wrapped up in a 50 lb pound bald boy, but he was only mildly grumpy and slept all day and all the next night except for the usual (TMI) hyper pooping/hyper bloody painful urination and go-ahead-and-throw-in-some-random-new-kind-of-belly pain in there so we had more scans at 3am. He threw up and his NG TUBE came out his nose and he said, “Oh My GoD! What are we gonna do now?” poor baby. Everyone was baffled. I wasn’t. I called it weeks ago.
There was no freaking way we were going to be THE ones to escape GRAFT VERSUS HOST DISEASE. Not when he has so many problems. To top it off, they never see GvHD this EARLY. Usually 100 days out. We are 32 days from transplant and he was having symptoms which they were blaming on engraftment 2 weeks ago. They say GvHD is 50/50. Some say it’s 60/80. They also said they would tell me if they could not cure him. Well, fucking -A. It looks like I am watching my son die. He has this horrible rash from the rejection of cells all over his body. Distended stomach. No nutrition as his liver can’t tolerate it. Only fluids.
I felt more positive the day he was diagnosed.
I have mediation chain going. feel free to involve yourself. Just sit quietly for a few minutes and think about his health, his liver recovering, his cells assimilating, his rash to go away, his pain to go away, his smile to come back.
His GvHd is stage 3. The highest stage is 4