HuCAR T boost, b-cell return
Yesterday we got some results that I am still trying to understand.
When you participate in CAR T-cell treatment, you are hoping that you maintain b-cells aplasia for 6 months. This is how you know the T-cells are working, the b-cells are absent.
This is why when Beaudin showed 2.5% b-cells at his 4 month check-up, we started down the boost path. A week later, his b-cell levels were up to 6% and that made us feel good about moving forward with the boost. So we moved, quickly, throwing together a month in Philly in 72 hours.
Facebook advice, a dad’s single comment
I had asked about early b-cell return on the pediatric CAR T-cell families FB group. There were many stories of children who had been boosted- some of whom sustained remission for many years, some of whom didn’t, and had to go on to other treatment options. But one comment stuck out. It was the comment from the dad of a patient who had low level b-cell return, between 5-10%, for months that did not boost and remains, many years later, cancer-free, in remission.
When you have the data set that is basically “a handful,” it is impossible to really know what to do based on numbers. When Beaudin’s levels jumped from 2.5% to 6% in one week, we felt good about moving forward with the boost because regardless of one dad’s single Facebook comment, Beaudin’s levels were showing a rise over time.
Boost Pre-chemo
Beau and I arrived in Philly Monday. We went to clinic to start the pre-chemo process of administering chemo to wipe out all the b-cells, good or bad, and clear space for the CAR T-cells. This process also kills off all remaining CAR T-cells. First, before anything else, they drew a ton of labs. Then we walked over to the chemo bays and got started on a multiple hours of chemo infusions.
Tuesday morning, as we got hooked up for another long chemo day, our nurse asked if we’d had a chance to review his labs from the day prior. Normally I check the labs from my phone at some point during the day, but I hadn’t this time.
“Beaudin’s b-cells were back down to 2.1%”
I stared at her, through her.
We wouldn’t boost at 2.1%. We would never boost at 2.1% I thought to myself, saying nothing.
“Well, we can’t know what would have happened…. and we are here now,” she surmised and looked to move to the next subject.
I turned around and walked to the floor to ceiling windows the lined the chemo bay.
I thought of the dad and his single Facebook comment. I thought of explaining to Selah that mom and Beau were going back to Philly and how hard she had cried, of how Jude heard the news and slammed the door to his room and screamed into his pillow.
It was too late to change course. The labs were drawn before the pre-chemo was administered. That meant that any CAR T-cells that were in his body, working, are now damaged beyond repair by the chemo and are useless.
I walked through the rest of yesterday in a haze. Everything and nothing making any sort of sense. We are here, the chemo was already underway, there was no turning back. But did we even need to be here? Well, now we did. But existentially, did we need to be here.
Once we got home last night Beau crawled into bed early. By the second day of pre-chemo he doesn’t have a lot left to offer. I tried to FaceTime Selah, but when she saw me on Joshua’s phone she just started crying. I recorded a video instead, telling her about my day, reading her a board book that I had brought along with me in hopes I could FaceTime read it to her.
We are here in Philly for a month. It is cold and terrible. Everything is closed bc of COVID.My kids back home are wrecked. Joshua and I are really ready for this season to end. And frankly, I am not even sure we needed to come.
Weak and Weary, but headed into Day 3
Beau woke-up this morning at 5am terribly nauseous. The pre-chemo has finally got the best of him. I got him squared away with some meds and he passed out on the couch. I couldn’t fall back asleep. I made a coffee and watched the sunrise. I emailed the clinic and asked if we could push today back a couple hours- try and let him get some sleep. They said that was fine.
It’s helpful for me to sit in the high-rise and watch all the tiny cars travel the highways through the city. Headlights glowing far into the sunrise. A reminder that each of those cars is filled with people with their own causes for concern, their own fears, their own dilemmas.
I am reminded that it’s not just me that is weary and hesitant to take on today. It’s all of us. Waking-up and starting our day, knowing it may be harder than we’d hoped, but believing that we can manage.
We always do.
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