As of Monday, February 23, Anson successfully enrolled into the PNOC022 clinical trial (Cohort 5) with UCSF Benioff Children’s Hospital.

...And he had surprise brain surgery while we were in San Francisco over the weekend. There are a lot of strong words I want to call cancer, but today I’ll call it a rollercoaster. Here’s how our clinical trial enrollment trip went:

We originally planned to drive, but a snowstorm blew in (bringing an avalanche that killed 8 skiers) and closed down the route to San Francisco from Reno, so we had to book last minute flights.

Wednesday we arrived, enjoyed the best sushi Anson has ever had (and is also a meal he doesn’t remember), checked into our hotel, and had pretty good sleep.

Thursday at 8:45 am was a bloodwork appointment. Then the consent paperwork appointment at 10:45 am. Then a MRI appointment at 2:00 pm that lasted two hours. It was an exhausting day, so when Anson dragged his feet to dinner we thought he was just tired like the rest of us.

Friday’s only appointment was a spine tap at 3:00 pm, so we enjoyed a slow morning and by slow morning I mean it took Anson 30 minutes to put socks on. We just thought he was tired and distracted by his phone. He walked slowly to breakfast and was kind of leaning, but we just thought it was the hilly streets of San Francisco. He had small headaches, but we all did, so we just thought it was the stress. He was also experiencing minor confusion (for example, our sister Ashlyn didn’t come with us to San Francisco, but in our hotel room Anson asked where she went). We noticed his confusion would show up anytime we discussed appointments or medical stuff, so we just thought he was experiencing PTSD and becoming forgetful as a stress response to all things medical.

We just thought... we just thought... we just thought.

As we’re in the waiting room for his spine tap appointment, we get a call that his MRI revealed brain swelling in the left ventricle. They promptly cancelled the spine tap, sent us to the ER, and by 7:00 pm Anson was admitted to the ICU again with surgery scheduled first thing in the morning. It turns out, the shunt that was added back in January was clogged. It’s on the right side of his brain and it travels down his neck and connects into his abdomen to drain (it’s all internal).

Saturday morning, the neurosurgeon revised his shunt and added a catheter “bridge” to connect his left ventricle to allow better drainage and prevent clogging. They collected the fluid needed for that original spine tap while they were in surgery. Anson woke up around noon, and with a freshly drained brain he said to my mom, “Mom, tell me about this clinical trial.”

Sunday morning, Anson was discharged and had one goal in mind: go to the beach, so we headed back to the hotel to freshen up. He was the first one to get his socks and shoes back on. He was the first one out the door as we headed to get lunch and blankets for the beach. He didn’t drag his feet, he didn’t lean, he wasn’t confused, and he didn’t have any headaches. We couldn’t believe he had brain surgery 24 hours ago, and now we were at Crissy Field East Beach enjoying the fresh air, waves, and view of the Golden Gate Bridge.

On Monday, Anson was officially enrolled in the clinical trial and we flew home with a supply of ONC201 for him to take alongside radiation. Part of this rollercoaster was eligibility. Enrollment depended on radiation starting within six weeks of his biopsy, with February 27 being that deadline. His original radiation start date was February 24 — already narrowly within that window, despite us being proactive throughout this process. However, this unexpected brain surgery delayed radiation to March 9, just beyond the deadline.

While Anson was in the ICU, his doctors were able to discuss behind-the-scenes and ultimately apply protocol flexibility, allowing him to thankfully remain in the trial. We are so relieved. In hindsight, the symptoms of his brain swelling were there. We just thought... well, now we know. Now we know we need to go back to that delicious sushi restaurant for Anson to remember.

Jokes aside, it was a great learning experience to understand what his true baseline is, and we’re better for it as we continue to ride out this damn rollercoaster.