Whiplash.

A week ago, Anson’s prognosis was... not good. Yesterday, Stanford completed genetic testing with his tumor biopsy and discovered a mutation called “BRAF V600E” and sent the results to UCSF, who then promptly scheduled a video call with us.

This mutation changes everything for Anson. It is rarely ever seen in DMG tumors; it’s usually seen in melanoma cases. This mutation is targetable, and the doctors have said it responds “exquisitely” to medication that is already FDA-approved. This discovery also now qualifies Anson for the PNOC022 clinical trial (!!!).

Traditionally, treatment consists of radiation every day for five weeks, followed by starting a medication called ONC201—which was actually just fast-tracked and FDA-approved in the fall of 2025. With his enrollment into this clinical trial, he will instead start radiation and ONC201 at the same time. After he completes radiation, he will continue ONC201 and add on combination medication(s) that target the BRAF V600E mutation. There is no placebo in this trial, and it does not close the door on future treatment types.

Today, we got confirmation on a video call with the Mayo Clinic that they agree this treatment plan is the right and best path forward. And it means we don’t have to hunker down in Arizona for 5 weeks where the Mayo Clinic is. Anson will be able to receive radiation right here in Reno, with the occasional trip to San Francisco for clinical trial appointments at UCSF. One of the reasons we were in discussion with Mayo is because they offer proton radiation, a type of radiation that enters the body and does not exit. However, after talks with all the doctors, everyone agrees proton radiation is not necessary for Anson and may even cause more harm because it does not exit the body (proton radiation is better suited for near-surface tumors). So, regular ’ole radiation it is!

We have been thrilled to hear of this update, and it has certainly shifted the vibe in the house. Last week we were in shock and terribly sad. This week we are rallying. It’s time to shift our mindset, and much to Anson’s dismay, I have been forcing a morning family chant: “My body knows how to respond, repair, and regulate.”

There is hope. I repeat, THERE IS HOPE!