Written by Liz Piña

Liz Piña’s husband Julio was diagnosed with anaplastic ependymoma in 2018 when they were both 34 years old. Julio had just begun a new career after serving eight years and one day in the US Navy when the diagnosis came after many months of seemingly random issues with his speech. Julio had an awake craniotomy at UCSF, followed by six weeks of radiation closer to home, and then life mostly went back to normal. 

“We had this feeling that the brain tumor part of our lives was behind us as Julio had multiple clear scans throughout 2019 and most of 2020,”  Liz said. In September of 2020, Julio had a recurrence scattered along nearly the whole left side of his brain and dura.  She recalls, “We were devastated. This was the first scan they pushed out to six months, and it was at a different location than normal. Because of the pandemic, we had a video visit with Julio’s neuro oncologist. So everything was totally off. We were both going to join the appointment from work, but I happened to see the results pop up in MyChart that morning. I opened them and knew I needed to drive to Julio’s work so we could be together during the appointment.”

Liz says her role as a caregiver really started to change in 2022 when Julio experienced quite a few seizures and began noticing weakness on the right side of his body and increasing expressive aphasia to the point that he could not speak at all for a couple of months. In September of 2022, Julio was told that he probably only had about 3-6 months left. Knowing that neither of them were ready to accept that reality, Liz doubled down on the integrative medicine principles they’d learned and started searching for outside-the-box treatment options. Julio accepted a hail Mary offer for a short run of targeted proton therapy, which they both feel absolutely saved his life. It’s been two and a half years, as of March 2025, since that terrible conversation about considering hospice care and Liz and Julio are still looking for an effective treatment as some tumor has made its way through the skull and is now growing outside Julio’s brain.

She feels that creating community has been a big comfort throughout the ups and downs since Julo’s diagnosis, “After Julio’s recurrence, we leaned into the brain tumor community hard together. It was so comforting to have other people around who understood our experiences on a personal level, and it helped to both share our story and hear stories from other people as well. Once we had that awful conversation in the fall of 2022, I also leaned into the brain tumor caregiver community. I don’t know what took me so long. I guess I kept thinking I’ve got this, and at some point I was thinking I better set up a space for myself because I might not have this all figured out after all.” 

Liz has dealt with a wide range of hurdles since 2018: limited treatment options, clinical trials, navigating the VA, career balance, side effects from treatment and symptoms from tumor, fertility, and long distance travel for Julio’s medical care. She is frustrated by the lack of treatment options and the hoops that brain tumor survivors and their families have to jump through to get what they need, which motivates her to consistently advocate for the brain tumor community.

“All of this is a lot. It’s a lot for survivors and it’s a lot for caregivers too. The stress of all of this could easily break a person or a relationship and maybe I have some stress cracks, but Julio and I are truly an awesome team. We both need each other to get through this, and I am honored to be able to support him in the ways he needs me even though it can be challenging. We never would have chosen this life, but I always tell people this is the life we have so we’re going to live it the best we can as long as we can.”