It’s somehow already August.

The last time I wrote an update, Anson had just been accepted into the PNOC022 clinical trial. At the time, everything felt urgent. Every phone call, every form, every appointment carried so much weight because getting into the trial felt like our one shot at changing the course of this diagnosis. Now, six months later, we’re learning a new normal.

Well... not normal. I’m not sure “normal” is a word that really exists anymore, but we’ve settled into a rhythm. Medication alarms instead of weeks, MRI dates instead of seasons, and every other month, we make the familiar drive from Reno to San Francisco for clinical trial check-ins. Somehow, amidst all of that, life has continued... and how awesome is that?

Happy 23rd Birthday

On March 26th, Anson celebrated his 23rd birthday.

It was a meaningful birthday. Just a couple of months earlier, we were still trying to wrap our heads around a diagnosis none of us ever expected to hear. By March, we weren’t pretending everything was okay, but we were celebrating something we don’t take for granted anymore: another birthday.

Our family celebrated with an incredible tasting menu dinner at Smoke Door in Tahoe. The staff went above and beyond to make the evening special, even surprising Anson with a beautiful bouquet of flowers at the end of the meal. It was such an unexpected act of kindness, and one our family won’t forget.

The End of Radiation

On April 17th, Anson finished his six weeks of radiation.

Throughout treatment, whenever he had the energy, he still made time for friends. He’d rest when his body demanded it, then get back out and live life when he could. Watching him balance treatment with simply being a 23-year-old has reminded us that, despite everything, he’s definitely still Anson. However, as expected, the last two weeks of radiation and the two weeks afterward, the effects of radiation finally caught up with him. He slept 24/7 and lost his hair.

Post Radiation Treatment Begins

On May 19th, Anson entered the next part of the PNOC022 trial. This added two targeted medications (dabrafenib and trametinib) to his treatment, alongside his doubled dose of ONC201 he had already been taking. At first, everything seemed almost... too easy. For the first couple of weeks, he had very few side effects.

Then the nausea showed up.

He was throwing up throughout the day and night, and it took us a few frustrating weeks to figure out why. Between the medication timing, fasting windows, and trying to eat enough, it felt like a puzzle we couldn’t quite solve. Eventually, the team found a routine that works. By taking Zofran about an hour before his medications, the nausea is now mostly under control. He still has the occasional rough day, but for the most part, he’s handling the daily routine incredibly well. His days now revolve around medication alarms, fasting windows, and making sure everything happens at exactly the right time. It’s become second nature.

A New Haircut (Finally)

In June, one moment that might seem small but felt huge... was a haircut. In addition to wearing hats, Anson had grown his hair out to help cover up the inevitable hair loss. But eventually, it was time. More importantly, it was on Anson’s time, and he was finally ready. His barber shaved around his head, essentially giving him a military cut.

It looked awesome and it gave him his confidence back. Instead of looking like something was “wrong,” it simply looked like he’d chosen the haircut. Even better, those radiation spots have already started growing back in!

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Dramatic Shrinkage

Then came July 6th. MRI day.

There is always a lot of anxiety around MRI appointments. No matter how optimistic you try to be, there’s always that knot in your stomach while you wait for the results. This time, we got the update we’d all been hoping for.

Not just stable. Not just “no new growth.” The tumor has DRAMATICALLY SHRUNK. Like, the nurse practitioner audibly gasped when she saw the scan for the first time. The team in San Francisco said, “it’s the most dramatic shrinkage for this tumor type we’ve seen in quite some time.” The doctor in Reno even hugged Anson twice. And you know doctors, they like to play it cool.

Treatment is actively working right now. There really aren’t words to describe what it felt like hearing and seeing these latest results, especially because every statistic we read is impossibly heavy. We’re still very aware that this journey isn’t over, but over the past six months, we’ve learned “normal” isn’t something to take for granted.

Normal is celebrating a birthday with family.

Normal is hanging out with friends.

Normal is getting a haircut.

Six months ago, “normal” felt like something we’d lost. Today, it’s something we celebrate. :)