Dear Zach. An Update on Beau (& Jude)

Once every six months, or so, I write a letter to the Fellow that Beaudin had during the first 2 years of his treatment. The Fellow moved on from our hospital around when Beaudin began his trial at CHOP. Below is an embellished version of my recent correspondence. I sent a fraction of what is below- mainly bc there is still some level of professionalism that we maintain, and also because, well the pour out below is a landslide of emotion that is more for my creative outlet, than for him specifically.

It’s long and all over the place and I only care insofar as I feel the need to let you know, I am aware. I actually care less than you’d think because this is, after all, my playground and I will do what I want. Oh, and I also changed some names, because some day I will be so famous that I’ll need to protect people’s anonymity. Surely. It is not well- edited. Mostly bc I have been sitting here cry-typing for two hours and have other shit to do like laundry and stuff. So, read without a critical eye for typos, eh?

Gah, ok enough caveats.

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Dear Zach,

How are you? I hope that you guys are doing well. How is your Clara? I am sure she is ever-changing and shocking you in all the ways that she is growing-up. I wonder how your career is shifting as you raise a child of your own?

I wanted to send over a couple updates on Beaudin. 

Beaudin had his 12 month post HuCAR T, 18 month post CAR T, check-up in August and remains cancer free by all the measures we’ve got, including NGS. The boost I wrote to you about, back in January 2022, didn’t hold. As such, he has never maintained the 6 consecutive months of surveillance that everyone uses as the baseline. He has full B cell return now, but he is still cancer-free.

We are so thankful for that. I write thankful and it feels funny. It’s what I am suppose to say, and in a lot of ways it is really how I feel, but it also just makes me kind of laugh. For four years, we kept getting beat to a pulp and then finally the beatings stopped and how people want to describe that is, “thankful.” There have to be better words. Lucky as shit and tired beyond compare, grateful, confused, and forever making sense, may be a better way to capture it.

It’s better than others have had it. Should I be thankful for that? That feels sinister.

Despite the early B cell return, he has been cancer-free since his final pre-CAR T intrathecal lumbar puncture way back in February 2021.  So, we are in a watchful waiting, praying for the best, space. Dr.Grupp at CHOP told us that Beau was one of “only a handful” of kids who have been treated after a first, CNS-only, relapse. So, we really don’t have a data-backed path forward.

I remember when you, Maloney, Joshua and me had the zoom call in December of 2020 when we had all agreed the relapse was official. I remember you were in your house, your bedroom I think, and I laughed at how impersonal it was. Or maybe how incredibly personal. Like, I realized that you actually went home at night and slept in a bed, and in your waking hours, researched how to keep kids like Beau alive. Similar to when a student sees their teacher outside of school, like at the grocery store, and things don’t compute. So, you are human after all?

You and Malloney both told us this was uncharted waters. And we knew that, but I guess I didn’t realize it was that uncharted. Like, we wanted a personalized care plan, but I didn’t put together what it meant for Beau to be among “a handful” of data points.

Anyway, Beau and his N of 1, is cancer-free, today. And all we have is hope that feels radical. Maybe it won’t turn out to be radical after all, once years and years of data are cataloged. But for now? For now this feels like a slow freely fall after a jump off a cliff. Later it’ll feel obvious. Hindsight always is. It will be clear we should have worried more, or hopefully, that we should have worried less.

People will remark, “She let the whole thing drag her down and all along he was cured.”

After the failed boost last January, the official next-step was transplant, but everyone, including Kelly, was hesitant to go that route. Of course, she gave an official recommendation to move to transplant, but she was using that voice, I am sure you know the one, the one that is sterile above all else. She is so fucking smart, and so senior, that mostly that voice feels like comfort. But that day, it felt disconnected. Once she got done explaining the “data backed protocol,” she spoke from the heart and said she couldn’t quite see Beau going to transplant, not now.

We spoke to her on Beau’s 10th birthday. I didn’t put two and two together when we scheduled the call, but once we were having the in-depth conversation about the big unknowns, and the litany of risks associated with transplant and the medical opinions pointing one direction, but the soul-level opinions pointing another…. well, frankly, Zach, I just never thought that would be a conversation that I would have on any of my firstborn’s birthdays.

It’s impossible to imagine. You get it now, now that you have your Clara. It is utterly impossible to imagine the conversations you’ll have on this side of diagnosis.

Anyway, we figure all the time we can buy him without transplant, we will take. We don’t know how long any of this will last, we just want him to be able to be a kid.

So speaking of him just being a kid, let’s see:

Well, first, what he would surely be spouting off to you is that: Beau’s baseball team won the championships this past summer! The Hooks took the tournament!

As you can imagine, Beau was on cloud-nine, and wore that dirty jersey all summer long. I haven’t been able to write about his team winning the championship because I can’t put words to what it means to watch him survive like this. During one of the play-off games, he ran across home plate and I imagined you and Ricardo and Kelly in the stands cheering him home and I was so overcome that I had to do a lap around the parking lot. I imagine the other parents often wonder why my eyes are always glassy.

During the spring we spent in Philly, back in 2021, our friends in a suburbs outside the city got Beau connected to a little league team out there. It was so gracious of the coach to let him be a part, despite being much younger and thus less adept than the other players. The coach knew our situation and ensured everyone was so welcoming. It gave us something to do…really, it gave Beau a purpose.

Philly was such an isolating time for us. Desperately clinging to survival, while being suffocated by thankfulness. We’d drive the 30 minutes outside the city to practice and it was like we were just a normal mom and son, doing things normal families do. We would turn the volume up really loud to the song, “Despacito,” and listen on repeat, the entire drive. I’d laugh as Beau sang lyrics that, translated, would be deemed highly inappropriate.

I didn’t care. I didn’t have a single fucking care about him singing about caressing a women’s body, despacito… despacito. Because, damn it Zach, if we can get him to that point of his life then we will have made it! And then, then!, I will explain to him then that the long drive to baseball was about so much more than those naughty lyrics.

I still can’t listen to that song without tearing up.

What a gift to see him grow older, Zach! I am sure you experience that now, with your daughter. Watching our kids grow-up inside of pediatric cancer is such a bizzare awakening, every moment so fully alive.

Anyway, this last summer, along with winning the championships, Beaudin got his port out. We were very nervous about taking that step, but Kelly reminded us we could always “just put one back in.” Our kid without an implanted device!

I still remember the day that you told us he’d routinely get labs drawn from his port. I felt all the air leave the room. Thinking of a device implanted under his clavicle, that a tender hearted nurse would casually push a 2″ needle into, routinely, made me lungs tight. You promised it would be “simple.” I remember wanting to punch you directly in the face when you said that. But you were right.

Things got easier, and the port became not only simple, but preferred. I always think about how you said, “This will be harder for you than it will be for Beau.” Another thing that made me want to hit you. I see it now, but I wish I had believed you then. I wish I had spent more time being kind and soft to myself, and less time anxious to the core about what was happening to Beau. I don’t even know if that is possible, when they tell you your baby is sick. But with hindsight, well, like I said, it’s obvious.

Anyway, the port removal was so much harder than I ever could have imagined. It felt like we were loosing a part of this tapestry that was woven together with so much heartbreak and hope that it was hard to tell which strands are which.

The other night we were getting ready for bed and Jude said, “Mom, I haven’t seen that bumpy thing in Beau’s chest lately.” He was worried. I reminded him that that was his port, and he had it taken out last summer. You could see the connections being made as he watched me say it. Slow, easy healing on wounds that we aren’t even aware of. “Oh, right, he doesn’t need it,” Jude half-whispered as he snuggled up next to me in bed. I felt him exhale fully.

We are all trying to figure out what it actually feels like in our bodies to believe this all could be over.

In September, we went to Philadelphia to attend a fundraiser for the Emily Whitehead Foundation. It was very interesting. It was fun and also hard- as there were many families in various stages of treatment, and as you know, things don’t always end in rainbows and butterflies. Most of all, though, we were glad to celebrate Beau, and our family. We made the decision to bring Jude with us so that he could be celebrated, too. He has been so “left out” of things with cancer in general, but specifically since COVID protocols have limited hospital guests. Protocols at CHOP have changed so were were able to take Jude along to Beau’s appointment, Friday before the fundraiser, and give Jude a “grand tour” of the hospital. Screen time, fancy visitor badges, frozen yogurt in the cafeteria, the works!

He is workings to put all the pieces together. Jude has always been Beau’s right-hand man. It’s probably why we feel a connection to you. And perhaps you, to us? You had a tenderness for him that never made sense, until, of course, you told me that your brother had died of cancer when you were young.

It took you a while to get there. I am sure it’s not something that’s appropriate to tell just any patient.

The first time you mentioned it, we were all in the pre-op room. You, Kelly, Ricardo, and me. I was explaining that new cleaning people had come to our house and as I explained our situation to them, detailing Beau and his illness and all that. Jude had spoken-up during a break in the conversation and said, “And… I’m Jude… I don’t have cancer.”

I was telling you guys because it felt so shitty. All of these brilliant minds, gathered in a room, focused on Beau, but what about my other kids. Collateral damage.

“It’s just so easy to forget that he is having this entire experience too, but from his perspective… The siblings just get the shaft. They probably end up more fucked-up than anyone.”

No one really said anything, I think because they all agreed. But you did. You said, “Don’t worry, siblings turn out fine.”

And it was like everyone in the room knew what you were talking about. And I didn’t, but I also did. It was in that very moment that I knew there was something more to you than you were letting on.

The others weren’t silent because they agreed with me, they were silent because they knew only you could hold that space.

It was weeks later, I think, though the timeline feels blurry, maybe it was later that same day? Either way, it was later, in one of the east facing chemo rooms, with the big windows. You came to say goodbye. Done with your fellowship and moving-on to a new hospital, across the country. Since that first conversation in the buttercream yellow room, Zach, you had become such a staple to how we would make it through this and now your life was moving on. I was so proud of you, I felt a deep motherly-love for you, beaming with pride. We’d seen you engaged, married, pregnant, and now setting off to start a new life. But you were leaving us. I wondered if this what it felt like to experience your kids leaving home.

I imagined Beau growing old enough to move into his own place, and the swirly mix of pride and pain, I’d feel.

You came in and said that you had to be sure to say goodbye.

And then you told me about your brother.

He had had cancer, and died, after transplant. You were young, Jude’s age, or a bit older. It felt scary for you to say that out loud because Beaudin had just relapsed and I think any of us would admit that, at that point, we really weren’t sure how things would end. But you said it anyway, in a peaceful voice that showed me, you really loved him. Your brother. Beau.

You used the same voice the day you called to tell us Beau had relapsed. It was mid-afternoon and the moment I saw “ONCOLOGY CLINIC” flash on my caller-ID, I just knew, I just fucking knew- the floor was about to be pulled out.

Your voice was so kind and gracious, it almost added to the pain. You felt nervous and sad and I hated that for both of us, because even in that moment, I knew that this was harder on you than you wanted it to be.

I’m probably making half of this up. Well, in fact, I am making 100% of it up because I have never asked you about any of this. I don’t know if it’s “making it up”, exactly. The way I am piecing together the energy that clearly flows between you and Beau, you and Jude, is, well, I think anyway, very real and true- in some realm of reality.

We are all just meaning making our lives, aren’t we. Meaning making, making it up.

I’m meaning making my life. Jude meaning making his. Your meaning making yours.

I don’t know how it all intertwines, but I know it does. You mentioned in one correspondence that you had Faith, and you pray for Beau. It struck me.

I mean, isn’t it wild that you held my son’s life in your hands and you could never tell me that your own brother had died and that you, too, believed in God? We walk, side by side, through the valley of the shadow of death, but we aren’t allowed to reveal that we are souls inside these bodies.

This medical model is weird, Zach. The focus on healing of bodies, but never tending to our souls?

A dear friend of ours (11 year old Sweet Emily, relapsed ALL, CAR T and HuCAR T)  passed away last spring and it was a painful reminder that this road is long. We attended her funeral, just Joshua and I, and I have never felt such despair. Right before the service I had to leave the sanctuary and heave silent sobs in the bathroom. I couldn’t fathom how we had gotten here and perhaps most painful of all, I couldn’t fathom being anywhere else.

Is this how you feel, every day?

How did we get here?

Can you imagine being anywhere else?

Anyway, where was I? We are working hard to enjoy the daily gift that is Beaudin, well and whole.

Whatever comes next, we will deal with then, I suppose. Radical hope. Watchful waiting. The liminal space between hope for cure and waiting for recurrence.

I hope you are well, and finding community and fulfillment in Wisconsin. We would love to hear any updates you care to share! We think of you often and remain so thankful for your role in Beau’s life. And maybe, more importantly, for your role in Jude’s. I haven’t fully captured how to explain you to him, aside from just being one of “Beau’s doctors.”

But someday Zach, someday it’s going to make a lot more sense. To all of us.

Kindest regards, Betsy