Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on July 12, 2024 in CommunityEOY, Stories
Jessica D. recalls feeding the giraffes at a local zoo with her toddler Ellie and husband Stan, who was not acting like himself and seemed noticeably cranky. The following day, she ran a 5K and returned to her car to find 75 missed calls and text messages because Stan had a suspected seizure at the golf course with his friends.
He was rushed to a nearby trauma room, where Jessica ultimately arrived after Stan’s CT scan to hear from a doctor, “The reason why you had a seizure today is because you have a brain tumor.” The couple was shocked because his only symptoms prior had been GI concerns and mild headaches that could be treated with Tylenol.
“I’m a nurse practitioner, and I think I had only heard of glioblastoma (GBM) — outside of a brief reference in school — from my first roommate in San Diego when I finished nursing school because her dad had GBM,” Jessica said.
The medical team performed an MRI, and they believed his brain tumor was a high-grade glioma based on the imaging. Two days after being admitted, Stan underwent a craniotomy to resect the tumor and returned home 48 hours later.
Based on her own medical training, Jessica knew the value of finding a clinical trial, so she frantically called her medical contacts for recommendations after they discovered the brain tumor.
“I advocated for my husband to get enrolled in a clinical trial following his glioblastoma diagnosis,” Jessica shared. “We considered a few options and made an informed decision about which clinical trial made the most sense for us.”
Jessica and Stan thoughtfully evaluated three different clinical trials, ultimately going with the Trident clinical trial evaluating Tumor Treating Fields for individuals newly diagnosed with GBM.
The biggest challenge wasn’t enrolling in the clinical trial but getting insurance coverage.
Jessica and her family belonged to a local health insurance plan that did not have a neuro-oncologist in its network, nor did they offer any clinical trials for patients with brain tumors.
“It took from November until January — the day before the clinical trial cutoff — to battle our insurance for coverage,” Jessica shared. “Our insurance kept denying, and they wanted him to see an oncologist who specialized in breast and colon cancer — no brain experience.”
Jessica advocated for an independent review with the state of California to get him from their health insurance hospital system to the University of California, San Diego (UCSD), and into their clinical trial on the last day of enrollment. As part of the trial, he started Optune, a medical device using Tumor Treating Fields, chemo, and radiation, all on the same day — his birthday, January 11.
“That’s what fueled me even more,” Jessica said. “Stan had scans at two different hospital systems, and it took a doctor at UCSD to say that he had a second tumor. If we had stayed at the first hospital, that second tumor would not have gotten radiated.”
While searching online, Jessica stumbled upon the National Brain Tumor Society and Gray Nation Endurance, NBTS’s official endurance program. She was inspired to apply to run the Big Sur 11-Mile Race.
“We can channel our energy in poor decisions, or we can channel our energy in good decisions,” Jessica said. “Since Stan’s diagnosis, I’ve probably run 15 races because it gives us, as a family, something to look forward to and an opportunity to fundraise and blast social media so there are more eyes on what GBM is.”
Since her initial race with NBTS in spring 2023, Jessica ran in the 2024 Big Sur 11-Mile Race with NBTS and has signed up to participate in the New England Walk this October.
“After Big Sur, I was motivated,” Jessica said. “I met people and felt like I was part of a good community. We have so many advances in 2024, so it’s ridiculous that there have been no changes in treatments for GBM. We want more research, more awareness, and more funds to find other treatments and cures.”
Running is also an opportunity to involve their 4-year-old daughter.
“Ellie doesn’t know the word cancer,” Jessica said. “She just knows that daddy has a boo-boo in his head, and we call Optune his superpowers. I think it’s good for her to see that we still push through, making good choices in the face of challenging times. It’s good for her to see health habits and fundraising for something important.”
As she runs, Jessica glances down at her tattoos, which she got on her forearm after Stan’s diagnosis before he started treatment.
“I’m not a tattoo person at all, but I got it for Stan’s birthday that first year,” Jessica said. “I wanted something permanent. It’s his initial that he wrote and a gray ribbon. They’re a reminder that if he can get through having his head drilled open, chemo, radiation, and all that, I need to remember to stay strong. I wanted a good reminder to keep going, especially in those early months when I was so overwhelmed with it all and worrying about whether I was going to be a widow.”
On the sixth annual Glioblastoma Awareness Day, July 17, 2024, we will gather to amplify the voices, experiences, and urgent needs of everyone living with glioblastoma (GBM), the most common, complex, treatment-resistant, and deadliest type of brain cancer.
From July 15-17, your gift will have twice the impact; thanks to the generosity of Deborah Sharpe and Today is a Good Day Foundation, all gifts up to $25,000 will be matched.
For everyone with a glioblastoma diagnosis, it’s time for a better chance.
TAGGED WITH: glioblastoma, caregiver