Days since Charlie’s diagnosis: 6
Charlie takes a lot of strange medicines.
First and foremost are the highly toxic chemotherapy drugs that target and destroy cells that reproduce quickly. Since Leukemia cells are very rapid dividers, these chemo drugs are very effective at making Leukemia cells explode all over the body. When these Leukemia cells explode they release their contents into the bloodstream, which can wreak havoc on the liver and kidneys, so Charlie has to take medicine to flush all this stuff out of his body quickly. Blowing up all the naughty cancer cells and flushing them out is the primary way the doctors plan to put Charlie into remission. Of course it is a bit strange to see my toddler taking cocktails of medicine that is so toxic the nurses wear full body protective clothing any time they handle the stuff. But really what choice do we have?
Charlie also has to receive a lot of fresh blood and platelets just to stay alive. This is because Leukemia cells crowd out the hemoglobin (and other helpful things) in the blood, which essentially renders one’s blood unable to process oxygen or fight against bacteria. When we brought Charlie into the Emergency Room last week, he was in the process of dying from this. The constant infusions do not fight the underlying problem (too many Leukemia cells), but instead they stabilize Charlie so he can stay alive long enough to receive the chemo (which does fight the underlying problem). At first all this blood was more liquid than Charlie’s little body was used to (his heart had grown accustomed to working with scarce resources), so some of the liquid backed up into his lungs and gave him a wet cough that kept him up all night. But more recently the blood has clearly recharged Char and brought back a lot of his former strength. He’s been joking and acting silly these past couple days, wiggling around the bed and getting up to come sit by the window. Seeing the smiles, watching his personality bloom again, seeing him have the energy to eat and chat and laugh… it’s been so very precious. Gotta live in the moment these days.
And then there’s the steroids. Steroids are a big part of the treatment because they help the chemo more effectively destroy leukemia cells, and they reduce the allergic reaction the body has to toxic chemotherapy drugs. Char is getting roided up, so of course he periodically experiences roid rage (roid rage + moody toddler = ridiculous behavior). Even without the steroids, who wouldn’t be mad at being trapped in a hospital bed for days, feeling depleted and yucky and weak, pumped full of strange meds that make you feel weird, poked and prodded by strangers all day and night? From my perspective, it’s very tough to see my little baby suffering with these weighty problems. He’s being given a course in resilience right now, but he’s still so little that I’m not sure he’s ready for such a lesson. But ready or not, here it is.
Tomorrow Charlie will get his second of many spinal taps, where the doctors will check his spinal fluid for Leukemia and inject chemo into his spine. When I type it out it all sounds so wrong, so cruel, so backward. But if we don’t do this thing, the leukemia cells will continue to overwhelm his body (no matter how much fresh blood he gets), and he will die from it. So he’ll take all the chemo drugs, and fluid flushing drugs, and anti-nausea meds, and steroids, and spinal taps, and fresh blood, and other things too, because that seems to be the only road to a cure. The American Cancer Society says that with the new drugs and treatments available today, “the 5-year survival rate for children with [Charlie’s sub-type of leukemia] has greatly increased over time and is now about 90% overall.” In a strange way, that makes Charlie lucky to have gotten this cancer instead of another one, because the doctors at Stanford know how to kill this disease. It can be done by giving my baby a whole big bunch of poison for a long long while. So that’s what we will do.
Side note: Erica and I have been rotating in and out of the hospital each day, so that one person stays with Char at Stanford and the other person stays home with Jack (who is not allowed at the hospital due to Covid). A massive rain storm pummeled the whole Bay Area all day, knocking out the power in our home from 7am all the way until 8pm or so. It’s my night at home, so Jack and I sat there this afternoon watching our house grow colder and darker as the hours passed, sat there in the gloomy and quiet house, listening to the violent storm, thinking about Char and the strange, eerie quiet, and how not too long ago it was summer and we were all out on the open road camping and exploring and being noisy and living life. I know that summer will return again in the future, and that Charlie may in fact heal and go on to live a long and happy life, that there are real reasons for hope, and that we are so blessed in so many ways…. but tonight, when the rain is pounding and the house is so cold and Charlie is so far away, and I know that tomorrow Char won’t be able to eat all day because of his procedure, and that he’s going to be so miserable and confused, and that he will face so many hard days coming up… when I think about that stuff, well, I just get pissed off.