CAR T Survivor: The Infinity Stones of It All

Read Part One here. We are jumping in mid-story.

Hotel Cable

We arrived back at the hotel late. Had it possibly been the most perfect evening in both our lives? Indeed. And now back in the hotel, we were on Philly time- which is to say, no time at all. Stay up as late as you want, kid- so long as you survive.

Each of us on our own hotel Queen, Beau scanned the cable channels. It was the Winter Olympics, and NBC was doing their nightly recap of each event. We watched 15-second clips of the most elite athletes win gold.

To each clip Beau commented something more or less to the tune of, “Meh, I could do that.” Or, “Yeah, probably isn’t that hard.”

After the fourth such comment I said, exasperated, “Beau, you can’t claim it’s all so simple. These are the best in their field!”

“Meh, I just don’t think it’d be that hard.”

The nonchalance was infuriating, and yet I was weirdly envious. That’s parenting a teen- they make you insane and envious in the same breath. To be so confident.

Infinity Stones and Alternate Endings

After the Olympics recap, Beau scrolled to the last 20 minutes of Avengers: Infinity War. I have been in the room for many an Avengers movie, but I am not sure I have ever actually watched one. So, too bad for Beau, I was asking questions about every single thing.

Wait, who is she? Hold on, is he shape-shifted now? Ok, but do they know he isn’t who he is?

Beau explained it all, another joy of parenting a teen- if he knows more than you about the topic, he.WON’T.STOP. Yes, this was the Infinity War. No, Thanos wasn’t exactly all evil, and yes, he needs all six of those stones.

Soon enough the movie was over. “Wait, that’s it?”

“Well, yeah, but in the next movie they lose, but then go back in time, and change everything, ever, always.”

“And then they win. Like an alternate universe?”

“Pretty much. Except they had won all along.”

Clinic

The next day started with clinic. You can read about that here.

After clinic, we got ready and headed over to the ScaleReady event.

Not that Hard

I had asked Beau a handful of times to prep for the speaker panel with me. Each time he rolled his eyes and said something more or less to the tune of, “Yeah, it’s probably not that hard.” Which is fair, and also it’s a stage and microphones, and hundreds of people in attendance and for god sake kid would you just run through these questions with me.

He would not.

The attendees at the event had a full-day of keynote presentations from brilliant minds the cell and gene therapy industry before transitioning to a happy hour in the Body Odyssey exhibit. Attendees drank cocktails, Beau and I had Shirley Temples, while we wandered the exhibit that had once been our homeschool.

Statue of Ben Franklin backlit in the great hall of the Franklin Institute.

Soon enough it was time for dinner, and then for the panel discussion. I asked Beau if he was nervous- did he need to use the bathroom real quick? Did he want another sip of water?

“Nah, it won’t be that hard.”

(Narrator voice: it was indeed, not that hard- watch recap the video here.)

Mother and son on stage together at the clinical trial event panel discussion.

In This Movie

There aren’t many words to describe being on stage next to your child talking about survival. On stage in the great hall of a building you once wandered for afternoons on end, just praying that your kid would survive.

So, I’m not going to try to make the feelings into words. All I know is that there was a moment on that stage, when Beau had the mic, where all I could imagine was 2021 Betsy in this version of the movie.

This ending.

2021 Betsy, when the cancer relapsed and the first CAR T didn’t work, and the second CAR T only worked a little and no one was sure about anything and then time stood still for five years.

Well, in this version, in this alternate universe, we had all the stones, we had won all along.**

Teen speaking into the microphone about his CAR T-cell therapy experience.

**I fact-checked the Avenger’s details in this post with Beau and there was lots of eye-rolling correction and he asked that I tell the readers to probably just watch the movies yourself. okthanksbye.

Comments

One response to “CAR T Survivor: The Infinity Stones of It All”

  1. Kate Schade Avatar
    Kate Schade

    The ‘In this Movie’ section at the end had me in tears. The thought of being on stage with your SON who is speaking so ‘nonchalantly’ about overcoming something so momentous. Being on the best side of medical advancement. Just really freaking cool.

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