My People, in Europe
Last week, I recorded a 2-minute video for the EASYGEN consortium. They’re working over in Europe, building optimized workflows for CAR-T manufacturing, trying to get this life-saving therapy closer to patients, faster, more affordable, more accessible.
These are my people… but the European version.
They reached out and asked if I could tell our CAR-T family story to their general assembly. All they needed was a “quick 2-minute video” explaining how the timelines around CAR-T therapy were experienced by our family.
Sure, I said. No problem.
Two hours and 100 takes later, I wondered if I could ever get this simple video done.
Two hours of trying to condense seven years into something coherent. Seven years of diagnosis and relapse, of apheresis and chemotherapy, of CAR-T cells and humanized CAR-T cells and hoping and breaking and holding on.
I finally came away with a 2-minute video I felt good about. I also had 110 minutes of bloopers and false starts and me saying the same thing five different ways because the only time anything felt true was when I cried, and no one needs a weepy cancer mom.
I sent the video to EASYGEN, thankful for the partnership. They replied with a photo of the General Assembly. Our faces on the powerpoint slide in front of cell therapy leaders in Europe. In what world!
I threw the bloopers into an outtake reel that you can watch here. I am sure you will laugh, but if you haven’t cackled out loud by the time I fake punch the screen – you have no soul.
The Next Day, Another Go
The next day, I had another go at telling our story.
This time it was on the Before the Cure Podcast with David Tsai and Timothy Wheeler. Before the Cure is a conversational series podcast exploring the human stories behind today’s most meaningful advances in medicine. It is a humanity-first look at what’s required to move from promise to impact. It launches this summer and frankly me as a guest felt like a match made in heaven.
We spoke for over an hour and a half about everything, but one vignette that caught me was when we talked about May 4th, 2021 – the day we flew home from Philadelphia after Beau’s first CAR-T. I explained how after 6 arduous weeks living in Philly, apart from the rest of the family, it was finally the day to fly home.
But the day of our flight was also the morning of our day 28 results appointment at CHOP. All I remember from the hospital is the word: hematogones. Immature B cells. In his marrow.
The CAR-T wasn’t holding.
Maybe it never had.
Timothy paused. He’s good at pausing. He asked me to tell him more.
I explained how the whole thing felt like a catastrophe, how the months away from home felt like a fracturing of our family – of our other kids. I explained how it was May the 4th and I remember that because it’s #MayTheFourthBeWithYou (a Star Wars reference) and when Beau realized that he begged me to order him a Luke Skywalker costume, complete with a light saber, to be able to wear to the hospital appointment and then through the airport.
I thought about, but didn’t say, how while I had been packing the night prior, I heard Beau on FaceTime with Jude explaining May the Forth, and caught him say, “Jude, full costume, promise?”
I detailed leaving the hospital. I told them how we stopped at a gas station on the way to the airport to fill up the rental car. How I stood at the nozzle and heaved sobs, the tears I had held in during the appointment, crying where Beau couldn’t see me. I explained that we got to the airport and I watched Beau walk to TSA with all the hope a child could muster, really hoping the light saber wouldn’t be confiscated.
He wanted his weapon, I wanted his survival, but wasn’t it the same thing?
I told them how that was one. One of the many moments during this whole cancer thing where I have felt suffocated in equal measure by the horrific fear this may all end with his death, and the chilling realization I am the luckiest mother to have ever walked the earth.
I left the podcast feeling like I’d told it – really told it. I’d managed to hold all of it: the fear, the guilt, the love, the not-knowing if we’d made the right choice. Like maybe for once, the story was big enough to contain the actual thing.
I will publish the episode when it goes live.
Looking for Luke
This morning I realized it was May the Fourth. #MayTheFourthBeWithYou. I thought, why not post a bit of our family Star Wars lore to LinkedIn.
I went looking for a picture of Beau from May 4th, 2021, as Luke (Skywalker).
That’s what I expected to find – him in Philadelphia, him in his Jedi robes at the airport, him with the lightsaber TSA somehow let him keep. The version of that day I’ve been carrying: the wreckage, the fear, the certainty that I’d made the wrong choice in introducing CAR-T to the equation and fractured everything in the process.
I found that picture, but I found another. Another I had all but forgotten about. Another that caused hot tears to swell fast.
Arriving in Denver that day we were greeted by a Jawa.
Jude our middle son. Our fearless little brother. The kid who reminds Beau of relapse symptoms and corrects my own explanation of CAR T. Jude, the brother who has always felt a bit sold short on not getting his own go at cancer.
Jude, our Jawa. In full costume, in full character.
The memory I’ve been holding all these years is the gas station. The sobs. The spiral about what the failed CAR-T meant, about how I’d taken this family down the wrong path, about whether Beau would survive and what it would cost the other two if he did. The memory was in the heartbreak of a mom carrying test results through an airport behind a 9-year-old in full costume.
Finding a Jawa
And I suppose all of that is true. But the truer truth. The truthiest truth? Well, that is the story of the Jawa.
Beau asked Jude to show up to the airport in a Jawa costume. And he did. He didn’t know about the hematogones or the failed infusion or what it meant that we’d been gone so long. He just knew his brother had asked him to show-up, fully.
Between the catastrophe of test results and next steps there is a kid in the Jawa costume at baggage claim.
The Story Lives in the Gaps
No matter how many times and with what focus I tell our story – 2-minutes for EASYGEN, or one hour for a podcast – I keep trying to make it about the breakthrough. The treatment toxicity and the medical markers and the clinical protocols and the complex logistics and the need for decentralization and the financial burden to a family, and…and…and
EASYGEN is building something necessary. Making CAR-T faster, cheaper, more accessible – that’s not nothing. That means more families get a shot. More cancer kids get to wear their costumes.
But that’s not what saves them. That’s just the gaps in logistics that industry can fine-tune (and fine tune they should!)
What saves them is the Jawa at baggage claim.
May the Fourth, and the force be with you.
The Before the Cure Podcast episode will be available soon. [Link coming soon!]
And if you want to learn more about EASYGEN and what they’re building in Europe to democratize access to CAR-T therapy, visit the website here.
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