When Trial Medicine means redefining family

“Bo…dean?” she called into the lobby, hesitating for only a brief moment.

Barbara, the intake nurse, with her thick Philly accent, was doing her best with a name that doesn’t read the way it’s pronounced.

And so, just like my Southern Aunt Jonella, his name rang out into the waiting room: Bo-dean.

It was a small thing. Harmless. But everything already felt unmoored. Hearing his name spoken in a way foreign to our mother tongue made it clear we had crossed into unfamiliar territory—present, permitted, but nowhere near belonging.

Running alongside the mispronunciation was the moment of correction.

“Yup, that’s us,” I said, standing quickly and motioning to Beau, who hadn’t given the name a second thought because it wasn’t his.

“And—hi. It’s Beaudin,” I added. “Bow-den.” I offered it gently, almost apologetically, as though I were the one at fault for having given him a name that wasn’t phonetic.

“Alright,” she said flatly.

At the time, it landed as dismissive. Later, I would come to understand it as the plain, literal way people from Philadelphia often engage. But in that moment—new place, new team, new rules—it carried weight.

This is the quiet disorientation of arriving to trial medicine.

When Your Care Team Becomes Family

Trial medicine frequently comes on the heels of an established diagnosis, after a local care team has already formed and often cared for you for months. For us, entering a trial meant stepping away from a team that had become family. During the twenty months of treatment before we entered a trial, our local hospital team held us in ways that went far beyond medicine.

It was our nurses’ voices singing Beau “Happy Birthday” on his seventh birthday.
It was our Fellow assuring me our middle son would be okay, after sharing that his own brother had died of cancer when he was young—and that type of childhood didn’t make him afraid, but compelled him to help.
It was our Attending physician retelling the story of Beau starting lumbar punctures un-sedated with the pride of a grandparent.

It was this family on the other end of the phone when results came back marked abnormal.
It was this family who Zoomed us from their home offices after hours to make sure our plans for trial participation were sound.

Leaving One Care Team for Another

And then it was this family who handed us off.

They wished us well and transferred our care to another team—another family, in theory—but one oriented differently. This team was focused on the trial. They were not unkind. They were skilled, professional, and deeply knowledgeable.

Everyone would say they were the best of the best.

Their language, by necessity, leaned toward what the data shows, rather than what we expect for Beau—a subtle but meaningful shift for a parent already holding so much.

Yes, I wanted the data to show sweeping healing across all risk stratifications. I wanted cures that scaled. But what I ached for was a team that would say my child’s name with confidence—and whisper to me that this Beaudin, this N of 1, would be the most unique and perfect survivor among them all.

I was asking for an assurance trial medicine isn’t built to give.

The nurses’ voices carried “Go Birds” this and “Wawa coffee” that—small reminders that we were no longer fluent in the language of the room. We learned the lingo quickly enough, but true fluency came slowly. It felt like moving through something dense, every interaction requiring translation. And while we quietly tried to understand what our role was here, the medicine moved forward.

What Trial Medicine Reveals About Who Holds Continuity

At the time, I thought our team in Denver had sent us off to find a new family. Another home base. A place that would hold us the way they had. That belief made sense—because for a long time, they were our family.

There is something about our local team—Dr. Zack, Dr. Malloney, Nurse Ricardo—that will never not feel like a family tie. I suppose that is what happens when your world falls off its axis: the first people who step into the room to help you put it back together are written into your DNA forever.

But what I understand now is that they didn’t send us away to find a new family. They sent us forward to discover something truer.

Trial medicine didn’t give us a new care family.
It revealed what had been true all along.

It was Joshua and I who were the sure ground. It was Beau’s siblings who were the fixed point. It was our family, our nuclear family, that was the truest north. We were the ones who carried continuity when everything else changed. We were the ones who knew his name—not just how to pronounce it, but what it meant, and which family it belonged to.

Nurse Barbara never did learn to say his name correctly.

And over time, that stopped feeling like a jolt to my nervous system and began to feel almost endearing.

Teams rotate.
Protocols evolve.
Trials open and close.

It is our family that remains—the constant presence, the translators between systems, the ones who hold identity in a world built to hold data.

This is our child in the trial.
And his name is Beaudin.