During our most intense time in trial medicine, we crossed the country more than 15 times in 3 years. And by “we,” I mean a parent and our child with cancer, leaving behind siblings and another parent at home.
That meant 15 tear-filled goodbyes with siblings who could not understand why mom or dad kept leaving with Beau. And more than a numbered goodbye, it was weeks and weeks of being apart.
Every goodbye felt like being dunked back under the raging sea, held under by a reality of our own making.
We had chosen trial medicine, had we not?
And now, inside this cross country travel hellscape, our family was hanging on for dear life.
Before long we built sacred routines into the leaving. Because that is what cancer parents do when there is no good option:
They make the way meaningful.
Before each trip my 3 year old daughter would lie on the bathroom floor while I packed my toiletries, trying on lip glosses. Instead of packing, we called it, "make-up time."
The night before departure everyone would pile into mom and dad’s bed for a sleepover- where, naturally, no one actually slept.
We would FaceTime from the airport, “This is our gate!” “This is our plane!” and from the hotel, "This is the lobby!" "This is our room!"
We made a way: together, apart.
Together, apart- A tagline we'd try to rah-rah as a family motto during treatment.
In 2023, on the heels of the impossible season of back-to-back-to back goodbyes, when CAR T had failed and HuCAR T was the next hopeful cure, we were finally in the post-trial 'wait and watch' period.
One morning, I woke for a pre-dawn drive to Children's for Beau's procedures- quarterly surveillance of Beau's spinal fluid and bone marrow to confirm that though the HuCAR T cells had not persisted more than 4 months, they had done...something... and maybe that something, was enough.
I didn't want to leave without saying goodbye to Jude, despite it being 6am. Years of travel had left him quite sensitive to a departure without a proper goodbye, even if it was just local clinic.
So, I crawled into bed next to a little brother who was beside himself at being left behind, yet again.
"Look at this," I slowly opened my hand to reveal a small, hand-carved wooden ram. Then I opened my other fist to reveal I was holding another.
Two rams.
"These little guys are you and Beau. You are vicious killers," I knocked the two rams horns against each other. "And sometimes you play nicely," I ran the rams up his arm alongside each other.
"But you are always, always...always.... bothers," I laid one of the rams into his open palm.
"Beau and I are going to the hospital today and I wondered if I can leave this with you? I am going to give the other to Beau....You will be at school, obviously,"
"Obviously," he repeated, smiling.
"But I'd like you to be with Beau, like in spirit. I was thinking if you each held on to one of these rams, it could be like an invisible stringand you'd be..."
"...Together, apart." he whispered, as he looked tenderly as his new trinket.
Travel has gotten easier over time, but it has never become simple.
This week Beaudin and I are in San Diego for 48 hours to participate in a patient advocacy panel at a cell and gene therapy industry event. A quick out and back, so quick I didn’t think to make much of it. I made so little of it, in fact, that when I casually mentioned, “we leave tomorrow,” at dinner, the horrified look on our daughter’s face made me realize I hadn’t really told her at all.
Soooo, last night included a tearful bedtime, to say the least.
'Cancer sibling’ has been a reality for Selah since before she could walk, but she’s 8 years old now and realizing, “wait a minute... not everyone’s family lives like this?" Moreover, she is aware that Beau does not have cancer, so what gives?
The question that sits underneath all of her tears is: why do we keep doing this, especially now that Beau is okay?
It's a reckoning I think of often, but I never waver from. The "send us" conviction that we decided on years ago.
But how much do you explain to a cancer sibling who doesn't actually care much at 8 years old about patient centered trial design, about the democratization of care, about cell therapy access for pediatrics?
So I laid in bed while she cried alligator tears about how much she hates it when I leave. I let her body recall that this is the same, while I reminded her this is different. That we were leaving for days not weeks, and that it was still, always, ok to be sad. And then when she had felt most all of her feels and still asked, "but why!" I said, "So other families do not have to hurt so much when one of their children is sick."
Does that make perfect sense to an 8-year-old? Probably more than you would think.
It does make sense to Luke’s mom, who got his CAR T cells Monday. It makes sense to Carter’s mom, who is waiting on bone marrow results today after chemo did not work and CAR T did not work, and now transplant is the only option. It makes sense to Emily’s mom, who said goodbye to that precious girl four years ago next month because this science is good, but it is not perfect.
This morning Selah woke up with a jump in her step. I asked how she slept and she said, "great!" and followed with, "mom, will you talk to the families today? or the doctors?"
I didn't have the heart to say neither, and explain a cell and gene therapy conference- so I replied, "Selah baby, I am gonna talk to anyone who will listen!
Right before I left I tied a simple string bracelet around her wrist and another around mine. I whispered into her ear, "this feels the same, but it's different. But no matter where we are, we are always together."
I then snuck into Jude's room and put his wooden ram on his nightstand. He is not little like he used to be, almost as tall as me. He is more proud now than angry, beaming when he tells people about why Beau and I go and speak. But I figured we would all appreciate the rams being back in play.
Tomorrow Beau, myself, a pink embroidery thread bracelet, and a hand-carved wooden ram will be at Scale Ready's G-Rex Grant Tour sharing our lived experience with the attendees.
Selah, Jude, and dad are cheering us on from home.
Together, apart. ❤️
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