CAR T Day +65: the three year old brain and moving on from the boost option.

Yesterday we were finally able to connect with the CHOP team and make a plan on how to approach Beaudin’s early b-cell return. We had played phone tag much of last week and finally on Friday afternoon I declared triumphantly, “Fine! If we can’t get in touch, then we will have a cancer-free long weekend!” And that we did. Despite the fact it rained almost straight through, we enjoyed the holiday weekend and even snuck in a cul-de-sac BBQ in to a break in the rain clouds. Selah referred to it as a party and kept asking who’s birthday it was. This was sweet and precious and worth noting here, in print, because girl friend is in a HARD season.

Turns out when you leave you babe for, on and off, 6 weeks, she’d prefer to re-attach by having you within arms reach for every waking hour. Couple that with a normal “mommy phase” which makes even eye contact with Joshua something to shriek over, and standard three-year-old independence and well, here we are.

The other day I stared myself down in the bathroom mirror, as Selah screamed bloody murder in the adjacent room because she both wanted her swimsuit on (atop her clothes), but couldn’t get her swimsuit on (atop her clothes) with out my help, and DID NOT WANT MY HELP, and I said sternly to myself, “Now you listen here Betsy, the next time you ever for a split-second ioda see a cute baby and think, ‘maybe, one more?’ You just remember this moment. Remember all those cute babies turn three. And three is an impossible year that, if you stay the course, you never have to endure again after this.” It’s a pep talk that I am sure every parent of a three year old has given themselves at least once.

To further diffuse things, I recalled that when another one of our children was three I had a very specific conversation with Joshua that went like this:

“He is a maniac.”

“Like, true maniac.”

“Do you think he is possessed? Seriously?”

“It’s possible. We should talk to someone.”

“There is a child therapist in my Mops group, I am going to ask her if this is normal.”

“There is no way this is normal….”

You guys, it was normal. Oh the three year old brain. This was not even where I meant to go with this update, and yet here we are. And as coincidentally as it sounds, like I would have to be completely making this up with creative license, Selah has just woken up, taken one step outside her door, seen me typing on my laptop, and is now kicking and screaming on the floor for me to “CLOSE [MY] LAPTOP!”

Be right back.

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Anyhow, where was I?

Yesterday we connected with Beaudin’s team at CHOP and we agreed that moving Beau on to a humanized CAR T-cell trial was the best next step. Basically, because Beaudin dropped almost 100% of his CAR t-cells by day 28, they do not think that a boost of the current cells would persist. It would buy time, but we also have to consider the framing that “buying time” can also mean “using up” time. The idea being that with a CNS-only relapse you have a window of time to get it under control before it progresses to a full bone marrow relapse. How long is that window? Oh, that’s the million dollar question!

There is some benefit of simply “buying time” and chalking up consecutive months of being disease-free. This is because there is no exact science about how and why CarT works. Well, I mean, there is clearly a lot of exact science about it, but there are no exact bounds on when it “works” vs. when it “fails.” For example, the ideal persistence of t-cells is 6 months. However, there are kids who have had Car-T, their b-cells have returned too soon, they have had a booster, their b-cells have returned too soon, they move on to a humanized CarT trial, their b-cells have returned too soon, they have gotten that boosted, and yes, exactly, their b-cells have returned too soon, again. But now they are in the great unknown of having been cancer-free/no evidence of disease for over 18 consecuitve months. So do they keep treating? Do they assume that though the t-cells didn’t persist, perhaps they did work long enough to get that last pesky cancer cell that is causing the relapse? Or do they move forward with chemo when their child has been cancer for for over a year and a half? This is the game of chess.

So, while we want to buy Beau as much time as possible to be cancer-free, we also don’t want to blindly use up time in this CNS-only remission on treatment that won’t yield a lasting cure. Is anyone still following? Ok, so the boost is off the table.

Boo hiss. As much as I work to adjust to this being a marathon, not a sprint, each time the path of least resistance is no longer an option, it sucks. It’s not just that the easier path is…easier… it’s also that one of the handful of survival options we have left expires. So, is it the end of the world that the boost isn’t an option, surely, no. However, it’s one less survival card in our ever decreasing deck and that will never not suck.

More on Humanized CarT and the timeline for that in the next post.