Ok. It’s 6am and my search history so far has been around the topic of humanized mice protein and clinical trials in Seattle, Philadelphia, and anywhere in between. It’s going to be a lively Saturday to say the least.
For now, we are planning to move forward with the Humanized CarT trial at the Children’s Hospital of Philadelphia (CHOP). The Humanized trial is a bit different from the trial we just did in that the CAR T-cells are engineered in a way to look more human, thus humanized. I wish I had a better way of detailing this, but the long and short of it is that the scientific community experiments on mice. We all know that, but we don’t very often consider what that actually means. For Car T-cell purposes, we’ve used the outcomes of those mouse experiments to splice cancer fighting proteins into a child’s t-cells in hopes of fighting cancer. The trouble is that some kids body’s reject those proteins because they are from a mouse, and are thus seen as “foreign invaders”. The idea is that if you can get those mouse proteins to appear more human-like, a child’s body will accept them. So the Humanized trial use CAR proteins still produced from mice, but the mice look more human.
This must be science fiction, you think to yourself. But no, this is actual science non-fiction. And if it makes you squirm like it does me, welcome.
After the call with the CHOP doctors I understood that the HuCarT trial took the the mouse protein and made it appear more human-like, thus ‘humanized’ in the trial name. But upon google review, trying my best to get a layman’s understanding to reproduce here, I think that it’s actually that we use human cells, to genetically alter the mice, then from humanized mice, take the protein.
I mean, IN WHAT WORLD IS THIS WHAT I AM THINKING ABOUT AT 6:37am on a Saturday.
I like to think that Beau’s body rejected the first CarT because he knew it was foreign. “Get this mice crap out of me.” And then as soon as that pride fills me, I consider that now I am hoping that we can really fool his immune system by putting lipstick on the pig. It’s a roller coaster inside my brain. Really is.
So, next week we go to the hospital (Denver) for a host of consults and baseline measurements, similar to when we started this process in January. Aphaeresis, ECHO and Lab work, and the like.
Then, the following week we will go to Philly for our consent meeting to sign on with the HuCarT trial. Before that consenting though, we will complete our month-3 bone marrow biopsy and lumbar puncture, associated with the current trial. It will be good to get a view of what’s going on in those spaces since Beaudin has not had chemo in 10 weeks, and his t-cells fell off, give or take, 6 weeks ago. So, he has had no surveillance in 6 weeks. Our prayer is for cancer-free results, obviously.
After consenting in Philly, we will have 6-8 weeks to chill out max, relax all cool before we return to Philadelphia for 7 weeks.
7 more weeks, Lord Help Me.
We are also double-checking all the trials available country-wide to ensure we are taking the right next step. But, no stone unturned.
Last go round they also told us we’d have to wait “6-8 weeks” for cell production and they were ready in, I think, like 5. Couple that with the emails of “we are waiting on insurance approval”. We hold lightly to allllll timelines. Either way, I am taking this detour and claiming that we are going to have a kick-ass (pseudo) cancer-free summer. However many weeks of it we can eek out, and however many doctor appointments we have to juggle between.
The results from the month-3 tests will help indicate what we do between now and HuCarT in Philly. Hopefully, it will be nothing, or very mild chemo to maintain the status quo. We are eager to continue IV VC and a couple other complimentary therapies to continue to keep Beau in fighting shape.
It’s easy to get real in the weeds on the nuts and bolts of how we move forward. There are so many things to list off and data points to explain. And then there is the part of this that isn’t scientific. The part of the story where we spontaneously go to get shaved ice and margaritas with good friends after baseball this week, staying out entirely too late, and I catch myself thinking, “This can’t be the end…” while Beau runs around chasing his friends, cackling. The part of the story where I spend all day emailing back and forth with CHOP and Denver, and insurance, texting Joshua to confirm schedules, texting Meemaw to confirm child-care, texting friends to ask about carpool, and all anyone sees is a distracted mom at the splash pad.
The part of the story where I listen to really loud summer music in my ear buds to drown out my thoughts, but still find myself holding back hot tears when I see Beau hold Selah’s hand on the playground.
The inhale. I can’t believe we are back here. What feels like back to square one.
The exhale. Another chance. Another gift. More time.
The part of the story where I listen to the Hamilton sound track start to finish every day and decide that singing every single part in the show, at once, would be easier than managing this shit. That would be, more than, enough.
My friend asked the other day, “How are you?” and all I could say was, “I am back in it.” I didn’t know exactly what I meant by it, but it was what came to me. Back in it. In the time warp, in the liminal space, swallowing so much salty water.
If you want to know more about IV Vitamin C, take a gander at these articles, or you can do a simple search of “Pub Med IV vitamin C”: https://pubmed.ncbi.nlm.nih.gov/23249337/. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5927785/
6 thoughts on “Humanized CAR-T and late summer in Philly.”
Everyday, you are all in my prayers!
Thank you for sharing, Betsy, so we can be with you in thought.
Joetta Brandt (Shelly’s mom)
Oh, thank you for reading along Joetta. Love to you all.
OMG….your ability to express the depths of your emotions is remarkable….we are “with” you in so much thought and prayer, such gratitude for your sharing this all.
Glad I got to give you a real hug today, because all I can think when reading this is that I need to give you more, and just hold space for all of this.
What an unexpected pleasure to see you and hug you in real life. Thank you friend, for always being the realest.
[…] plan is to move forward with HuCarT in Philly this fall, despite the conversation in the bar with the bone marrow doctor. (….was it a bar? Pretty […]