When we were in Philadelphia in August for Beaudin’s 12 month post-HUCART tests we discussed with the team the next time we would need to come to Philly. They said that because he hit the 12-month mark without disease recurrence, the next time they would need to see us would be at 18 months (February 2023). And that appointment would be “labs and exam, only.”
They didn’t want to see us for 6-months! Wow. I asked how often we needed to get labs back at home and they shrugged their shoulders and said casually, “eh, maybe one time between now and then?”
His life hung in the balance for so long and now things have gotten very casual. I’m not adjusted.
“Ok, well…” I treaded lightly, “I am not sure we will travel all the way here….just for labs.” All I could think of was what over-kill that was.
But it’s tricky because I don’t want to look a gift horse in the mouth, of course. Being a part of this study made a multi-million dollar, less toxic than any alternative, treatment plan available to Beau. Eternally grateful is the only way to summarize it.
But that’s the summary.
The nuances are far more…. nuanced.
Participating in these studies, first CAR T then HuCAR T, has made a way for us. The cost of the cells alone is upwards of $750,000 per manufacture (aka, $1.5M for his two studies), and is not covered by insurance since it is not “standard of care.”
And so for 24 months we have traveled to Philly to participate. We have flown over there 15 times, also once driven there and back. Because that is what the studies required. For obvious reason, like procedures that must be done on-site, like for a spinal fluid sample that is too fragile to ship across the country. But other times, like now, it is to have the labs drawn and to have an exam done by the sponsoring facility. Labs and an exam that can be done, with precision, 40 minutes from our house. But those would be local results that wouldn’t have been performed “by the study” and so they aren’t ideal.
So we’ve traveled to Philly. A flight there and back in February 2021, a flight there March 2021- a flight there and back in April 2021, a flight home in May 2021, a flight there and back June 2021, a long-ass drive in August 2021- a flight there and back in between and a long-ass drive home in September 2021, a flight there and back in November 2021, a flight there in January 2022 and three long weeks, then a flight home, a flight there and back in May 2022, and a flight there and back in August 2022.
February, March, April, May, June, August, November, January, May, August. We’ve seen a lot of that flight path.
Accommodations have been covered, but no other travel costs. Not the costs that rack-up when you manage two households at once. Nor the costs that you don’t consider like eating out in a big city after a long, exhausting day in the hospital. Nor the cost to rent a car so you aren’t stuck within walking distance for your 6-week stay. Nor, for example, the cost of therapy for your other young children because it turns out leaving them for weeks on end does a real number on attachment.
We have spent, rough estimate, $10,000 on out-of-pocket expenses associated with our time in Philly.
And we are the lucky ones!
The ones who had $10,000 to spend! The ones who could flex and bend and not break while money poured out every damn credit card and savings account. The ones who could stay housed, and employed, and financially solvent while hemorrhaging money at every turn. (This doesn’t account for our $7,000 annual out-of-pocket insurance per person max, nor the >$5,000 we spent in 2021 alone on integrative care. Nor all the costs that came in the 3 years prior since diagnosis in 2019).
This should NOT be a treatment only available to those with 6-figures in their savings account, every child should have access to this.
I’m down a rabbit trail, but I guess what I am wrestling is, “What is our moral responsibility to stay in the trial at this point?” and perhaps, not to withdraw completely, but to cloud up their data by sending them lab results performed locally rather than traveling to have them done on-site?
I’m pulled between two feelings.
One, oh FOR THE LOVE OF ALL THINGS HOLY can we NOT GO TO PHILLY AGAIN, EVER! Send the labs from Denver, for goodness sake, they are the same labs!!! Why! Why! Do we have to keep traversing the country for this?
But the other, far more generous in spirit, whispers: to have a choice is a privilege. A choice to travel because Beau is alive and we do have the money for it.
I remember the night we finally decided, like decided in the way where you head lines up with your heart, that CAR T was the path we’d take. It was scaring and horrifying, and oh so easy to forgot on this side of things what making that decision was like. Joshua and I were both wrecked by it for weeks. The experimental nature of things, the unknowns, the fine print that listed things we couldn’t bare. But one evening I said to him, “Despite it all, I just have a peace that this is our path.” And he agreed, “It’s the closest I’ve ever been to ‘a peace the passes understanding.”
“Imagine if this happening to us, and us choosing CAR T, just imagine if it allows other kids to have access to better treatment?”
“Imagine if we pave a way where kids don’t have to do three years of toxic chemotherapy.”
“If there is a way for that, then it’s for us to participate.”
My faith had been all over the board since diagnosis and relapse didn’t help, but that night, while brushing my teeth, I remember looking in the mirror and thinking, “We’re here, God, send us.”
So despite the voice inside me that kicks and screams like a toddler at having to spend one more dime on this- a much more tender and sweet side of me whispers: It’s a privilege to honor the commitment we made to furthering this science.
The commitment that swirls inside me isn’t a commitment to the team running the study at CHOP. If it was between us and them, I would say, “Thank you kindly, and now here is your cross the country blood sample.” But it’s not about us and them. It never has been.
The commitment we are honoring is the one that we made, as a family, to the children who this science will serve down the road.
It is a commitment to the kids and families for whom the science wasn’t good enough for, yet.
It’s a commitment to our Sweet Emily.
And with that, with knowing that my commitment isn’t to the data of a study at a research hospital, but to the sweet children along the way, well with that, I suppose the least we can do is shell out another couple hundred dollars to travel all the way across the county for “labs and exam, only.”
To ensure the data is clean and clear and the science keeps moving forward. We want studies about CAR T to be clear as day, without confusion over where the samples were drawn. We want to be in the room, speaking to the team face to face, so that they can consider every possible reason why this science works for some, but not for all.
We want this treatment to be made available to all children, to be deemed safe and made cost effective and to become the standard of care. We believe it could be, just that, but to get there we need the data. CAR T needs a chance at being standard of care, so then the price can come down and children everywhere can have access. There is lots here on how and why products become ‘standard of care,’ and how they are made available at cheaper prices in the absolute racket that is our medical system, but high level- studies deeming them safe is step-one.
When Beau was diagnosed with Leukemia in January of 2019, I would have given anything for a less toxic path. To be able to move this forward, is forever, a gift. (How precious is this pic of baby Beau the day after he was diagnosed? oh my heart.)
I get wrapped up, swimming in the numbers of our budget, the money we have poured into this unexpected life.
And yet when I type it out and see the words on the page the decision is not only clear, but really not a decision at all.
It’s a movement towards what we are meant to be, towards being fully fucking alive as I mentioned in my last post.
We’re here, God, send us. With finances and survival we didn’t earn*, send us.
Looks like we are hitting up Philly in February and honestly, now that I have thought it through, I can’t wait.
*My dear Joshua works so dang hard at his job, so I do not mean to say he doesn’t “earn” the financial stability he brings to our family. However, you are in this long enough and you see a lot of families working really dang hard who are bankrupted by this system, who loose their jobs because of the time commitments, who drain their savings, who don’t have friends that can contribute over $25K to a GoFundMe, who don’t have the credit to float 15 flights across the country. Couple that with seeing families that “tried” just as hard as us to survive, that still loose their children to this terrible disease. And, well, you just come to see that our survival, physical or financial, isn’t earned, it’s a miracle beyond human reasoning.
There are no bootstraps in pediatric cancer. Just fucking luck.
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Thank you. For your amazing candor, your dedication, your perseverance, your sharing of this incredible journey of the deepest love ever.
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