When Beaudin got CarT back in March, he didn’t have any sign of symptom of a reaction until Day +5, at which point, he had a terrible headache and decent fever for about 12 hours. That was it. His inflammation markers (measured in his blood) stayed relatively low, and aside from some uncomfortable hours on Sunday afternoon, he was fine. He did remain fatigued and anorexic for weeks after, but he didn’t have a significant “reaction” per say.
The doctors all say that the level of reaction does not correlate to the success of the treatment. Generally. Except when they don’t. Like that one doctor, that one time, during t-cell collection, in the bar, you recall. She said that the more disease, the more reaction, the more reaction, the better because it give the t-cells something to chew through. But then the other doctors, like the doctors we have here, who are the leaders in the field, say reaction doesn’t correlate to success. They say it every time I ask them. Except the one time they told Emily’s mom that her reaction was a good sign.
And last time Beau didn’t react, and the cells didn’t hold which surely must mean absolutely everything, but really means absolutely nothing, or at least, likely nothing, but maybe everything, but probably not much.
One data point does not a trend make. Except when the data point is your child and you don’t care about the trend, you care about his actual survival.
Anyway. All that to say, when Beau told me that he had a headache on Day +2 I was thrilled. Thrilled in that cancer kind of way where I am both thrilled and horrified at the same time because though it could mean cell expansion which could me success, it could also indicate the precipice of a long couple days, or weeks, of time in the hospital with painful headaches and high-fevers that medicine can’t touch. (These are common CarT reactions.)
There are some kids that have CarT treatment and years later continue to have platelet issues and no b-cell recovery. Which if you have been here a while and have engaged as a proper understudy know that that is both the goal and the problem. We want the b-cells to stay away for a while, but forever? Please no.
So while reaction means expansion, and expansion could mean proliferation, and proliferation could mean success…. it could also mean success…. and that could mean long-term side effects. Problems with platelets, problems with b-cells (aka problems with a nice chunk of your immune system which is not ideal to be missing forever.)
Breath in, yay! a reaction. Breath out, ah shit, this may be working, that’s horrifying.
I haven’t been to the hospital since we have been here. Joshua has been taking Beaudin to each visit. It has been such a reprieve. The other day Joshua got home from their early morning lab check and before heading upstairs to work he casually ran through the list of things we were to be “on watch” for. As he listed it off, so casually, I felt proud of both of us. We are like a well-oiled medical machine. He then told me a detail that doesn’t make any difference to this story except that right when he said it a hot flush went down my spine and I thought I was going to throw-up.
That’s cancer. Breath in, ok, we got this. Breath out, oh no, we’ve got THIS!!!
Day +3- Beau continued to have a significant, but bearable headache through most of the day. He laid in bed, more or less, the entire day. Though consistently painful, he was able to watch shows on his iPad (which was not the case the night before when his head ached so intensely that he couldn’t look at a screen, listen to a podcast, or see any light. Nor could he sleep. So he just laid in a dark room and whimpered. That was fun.)
Day +4- Things seemed to resolve a bit with his headache self-reported as 2 out of 10. We laid low at the house, but he was able to sit on the couch and watch t.v. and walked to dinner with us 3 blocks from our place.
To date he was eaten decently. He hasn’t had a voracious appetite by any means, but he has been willing to eat a big plate of raw vegetables, 1 avocado, olives, sauerkraut, and mixed nuts, every day. I call that a big win. We will see how long it lasts…
By the end of the evening, Day +4, and into the next morning, today, Day +5, Beau said his headache was all, but gone and he felt “ok”. That was both a relief, because who likes seeing their kid in pain, and also gave Joshua and I both “wait, um…. could you suffer just a bit longer so we could be sure about expansion, which would give us a false sense of success, even though the doctors promise it means nothing, and everything…. okthanksbye.” vibes.
Today we woke up, and being a weekend, decided to find a way to escape the city. We found local’ish organic orchard to visit. We had a great time picking white and yellow peaches, smokehouse apples, pears, blackberries, and cherry tomatoes.
I couldn’t believe how different the peaches tasted compared to Colorado peaches. Wow! The white variety were super sweet, like honey. And even the yellow ones tasted quite different- sweeter and less tart than Colorado Peaches. They were good, but I’ll stick with the western slope/Palisade harvest thankyouverymuch.
It was a great time, and everyone enjoyed themselves. Despite being completely soaked after a downpour during our outdoor dining brunch, everyone recovered quickly, went with the flow of being drenched, and rallied to arrive at the orchard with excitement.
I’m feeling very proud of ourselves for finding a way to get out of town, and into nature each weekend. What a gift the past two weekends have been!
On our way home, Beau said his headache was retuning. Upon arrival home he went straight to bed where he hasn’t moved from for 3 hours. Back to the dark room, unable to sleep. This time he appears to be running a fever, holding around 100deg. If it goes much higher we will get a one-way ticket into the hospital. So while Jude and Selah and I wash our yield and snack on our harvest, Joshua is taking a nap to rest up for possible hospital sleep (which is no sleep at all.)
Wish us luck, for all the symptoms and none of the suffering, and all the success and none of the long term side effects, and any other paradoxical prayers you can think to toss up.