I went away, up North to Chicago to hang with Lily and Blaise. I knew the timing wasn’t ideal, but Blaise in particular will be affected by my absence as he grows older. He feels more than he lets on, as many 11 year-old boys do. Lily is better with expressing herself, and for that I am grateful because not ALL 14 year-olds can do that.
While I was gone, Linda stayed and Donna stayed one night. It was the usual, which is HARD. Even with help it is hard. It’s horrible for him, and just plain hard on any caregiver. It’s hard on your body and your mind, mostly your heart.
The Happy Dance is for 100% engraftment of Ashton’s donor’s cell’s based on preliminary test results. Everyone did a happy dance! And then we were sort of crestfallen…it’s wonderful news because it indicates he’s cancer-free RIGHT THIS SECOND. Then, I was on the phone with several doctors, frustratingly so, trying to get to the bottom of the next PROBLEM(s). To be honest, without any medical background, I could have (and did) tell them there was a problem weeks ago. Standard answer was always, “it’s just part of engraftment”. “It’s normal for this many days out from transplant.” Hey, what the hell do I know about BMT? Nothing. But, I recognize pain. I also recognize the passing of time. They kept saying that the first two weeks were they hardest and it just kept getting harder and I kept getting the same answers. I would just nod and smile and say thank you.
Not anymore, folks. I’m going to be THAT mom.
Suddenly, the doctors who said Ashton was not a patient who was, “keeping them up at night” <oh, that comment pissed me OFF. are worried. Given, they were concerned about his liver last week. But they had kind of led me to believe I had the final say, ultimately, if he got an NG tube.
Today, he’s just getting one, no matter what. He’s getting a stomach biopsy, as well. That is to look for the GvHD that they are suspecting he may have based on his prolonged illness in his gut. His insides are just icky. His body doesn’t seem to like these cells and that’s not a shocker. He doesn’t like other people’s plasma or platelets either. He tends to have a reaction to them. So an entirely new bloodline? I’m not surprised his stubborn little body is fighting it. It’s supposed to fight it a bit, but not like this.
He’s also getting his next bone marrow aspiration to confirm (hopefully) the absence of cancer in the marrow. If there are no cells hiding there right now, they can likely treat any GvHD and get us out of this mess?
We want to do a long-term happy dance. ok?