Beyond the Protocol: How a Family Stays on Treatment

Tech, timelines, and trial arms matter — but they’re not what keeps people going. This is what does.

Hi everyone,

I want to offer a full and honest update from Charlottesville, where Tracy completed Cycle 1, Day 1 of the Phase II Fibromun + lomustine trial for recurrent glioblastoma (NCT06336291).

We arrived at UVA on Monday knowing it would be a long day. Based on guidance from the trial site, we believed her lymphocyte count needed to be >500, so she was told to vigorously exercise before labs — and she did, running hard around the hospital, determined to qualify.

This is how our day began: labs, pre-meds, infusion, post-infusion observation, and medication adjustments — all while living out of a hotel room, several hundred miles from home, our kids, and any extended family. We expected intensity, but the day unfolded into much more than that.

At first, Tracy handled the infusion well. But near the end of the observation window, everything changed. She was suddenly hit with severe nausea and vomiting. The kind that comes in waves. The kind where she couldn’t sit upright. After a full 10 hours at the hospital, instead of being discharged, the team found her a hospital bed so she could sleep for 90 minutes and stabilize.

Meanwhile, I had been quietly dealing with intense calf pain for days. I'd just driven from North Carolina to Cincinnati and back over the weekend — and then straight to Charlottesville the next morning. My calf felt tight and hot, but I brushed it off until the PA noticed me limping. He urged me to get checked. So while Tracy was being monitored, I went to the UVA ER for an ultrasound. It confirmed a deep vein thrombosis (DVT). I was immediately started on blood thinners and told to wear compression socks and rest — a nearly impossible prescription for a caregiver hundreds of miles from home.

That’s when the clinical research coordinator stepped in. She walked me to a local running store near the hospital and even let me use her employee discount to buy compression socks. It was a small act of kindness in a day that had already asked everything of us.

Eventually, we were discharged. On the way back to the hotel, I stopped at Whole Foods to grab some dinner and drinks for Tracy. I left her in the truck, trying to rest — but when I returned, she was vomiting again, slumped over and drained. We weren’t okay.

Back at the hotel, she was still sick, and I was at my wits’ end — physically wrecked, emotionally spent. But finally, I was able to get anti-nausea medication into her, and she began to rest. It was critical — she had just started a 6-week course of lomustine, which is known for its GI toxicity. This was just the first dose.

All of this was happening while my father-in-law and his wife were driving from Maryland to our house to care for the kids. At home, our five children were waiting for someone to arrive — unsure when we’d be back, uncertain of what the day meant. Our youngest is four. Our oldest is seventeen. They waited and managed. They were scared too.

We were alone in a town where we knew no one.
But what we did have — was the clinical team.

From the moment we checked in — at a tiny cancer center where registration is literally just taking a paper number — we were met with people who made this survivable.

A CRC who had been there for 20 years, who didn’t just know the protocol — she knew us.
An infusion nurse with 40 years of experience, who didn’t flinch when Tracy began vomiting, but held her with grace — and later, with tears in her eyes, saw again the brutality of this disease and connected with me in a way that shattered my resolve. I broke.
A PA who cared not just for Tracy’s labs but for my limp — who saw me, the caregiver, in need of help too.

And back home — a community showed up.
People brought meals.
They prayed.
They checked on our kids.
They reminded us that we weren’t forgotten.

In the middle of all this, I kept thinking about my career in digital health.
We always talk about improving enrollment.
Only 3% of patients enroll in clinical trials. We build portals, dashboards, workflows.
And yet — if someone had handed me a tablet that day to explain the trial to me, I probably would’ve thrown it away.

Because when your wife is vomiting in a truck and you’ve just come from the ER with a blood clot, what you need isn’t better tech.
What you need is a human being.
You need someone to look you in the eye and say, “I’m here. We’ve got you.”

That’s how a family stays on treatment.
Not because of an app.
But because of a nurse with tears in her eyes.
Because of a research coordinator who walks you to buy socks.
Because of a community back home making sure your kids are okay.
Because someone truly cares.

This was Day 1.
We have a long road ahead.
But this is what made it possible to take another step.

Thank you for walking it with us,
Jason