Seeing the Good
Strother’s sleep schedule isn’t unlike when he was 15 months old. Daytime and nighttime norms typically didn’t apply then. And they seem to be difficult now.
Let’s talk about the bad first. Honestly it’s not that bad. (Other than cancer in a paraplegic kid who JUST started college and will probably need to take the semester off.) He’s still tired. So very tired. Napping like he probably did when he was a growing one and a half year old.
The good news is he is eating three meals. Sipping a bit of protein shakes. Getting out of bed a little. Probably not unlike a growing one and a half year old. It’s a different kind of growth spurt. A healing spurt I suppose.
This is a three month course. We’ve done five days of chemo. We have fourteen days off and an expected dip in white cell counts and then recharge. Chemicals kill the bad cells and some of the good ones and then bone marrow kicks in and brings him back up. Just in time for more chemo. The science is fascinating. It’s also finely tuned according to his bloodwork which will be followed twice a week. One out of four chemo rounds done!
My sister was a pediatric bone marrow transplant nurse at Cooks and has us deep diving into the numbers. Her knowledge is incredible. Her ability to turn this journey into a science project in real time has Strother digging into the details of his own bloodwork and temperature data and day to day reactions to all the meds he’s on. She’s been holding my hand this entire week. And keeping Strother entertained and laughing with all of us because she knows, like no one I’ve ever met, humor and laughter is free strength and healing, all in one.
Strother knows the nadir (his lowest white blood cell count) is when we will absolutely avoid unnecessary risks. That’s where we are today and for the next 5 or 6 days. It’s like Covid, but without the collective knowledge with the entire planet that we’ll be not hugging or sharing close spaces this week.
He has a clinic visit tomorrow. Blood work and vitals and weight checks, etc. We are looking for stability in his weight. Hope those little meals and snacks all day are working. We will see if there are significant changes in blood markers that show improvement, even in this early time, or if there are ways to redirect the plan of action.
Marme (Marty for those of us who aren’t her grandchildren) and I have been thinking about how we as a community can DO something for Strother. And we are hatching up a plan. Stay tuned friends. Strother’s life is going in a new direction. Let’s keep up with him.
With love,
Blythe