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READ MOREPublished on September 19, 2023 in Advocate
Whether hiking through trails perched atop twenty-foot cliffs or touching live sharks and stingrays, middle schooler Ava Q.E. was fearless — always volunteering to go first, thanks to her adventurous personality. It was a shock when Ava started repeatedly losing her vision for 5-10 seconds each time she stood up.
Her eye doctor ordered an MRI and lumbar puncture before diagnosing her with idiopathic intracranial hypertension (IIH), which is when fluid around the brain and spinal cord builds up and causes pressure in the brain and on the optic nerve that can lead to vision changes. They treated Ava with medication, which eventually resolved her symptoms after nine months.
Several months later, Ava began experiencing the same symptoms and a few new ones — severe headaches, nausea, and urinary difficulties. Her doctor suspected these symptoms were due to an IIH recurrence and had her resume the medication. Unfortunately, no medications helped this time around. By October 2021, Ava had suffered a stroke.
“She couldn’t walk on her own,” Ava’s mother, Sasha, said. “She couldn’t even get out of bed on her own. After numerous visits to the local ER, they told me if she didn’t get better in the next couple of days, to take her to the ER at the Mayo Clinic, 10 hours away. That’s what we did.”
There, Mayo’s medical team found left-sided neurological deficits and performed an MRI, which uncovered abnormalities, including an indication of a stroke. Later, seven doctors entered Ava’s hospital room to talk to her and her family about the MRI results, which uncovered multiple tumors. After a biopsy, she was given the diagnosis of pediatric glioblastoma.
When the doctor who explained the MRI results stopped to search the hospital room for a foldout chair before talking with the family, the family realized it was bad. Sasha explained, “I started crying right away because I was so devastated. With her cognitive deficits and other symptoms, and so much wrong on her MRI, I knew she would die.”
With a six-week hospital stay 10 hours away from the family’s home, Sasha and her husband Chad had to quickly improvise to stay afloat financially.
“Chad’s work was amazing, so they really supported us,” Sasha shared. “My job let me do a little bit of remote work, so at least we could pay our bills. Initially, before we figured out all of that, we were discussing whether we would have to sell the house and how we would pay our bills. It was definitely overwhelming.”
Sasha’s sister created a GoFundMe page about what was happening on the recommendation of family friends.
“My sister encouraged me to post updates because the texts, calls, and messages were overwhelming — you just can’t answer them all,” Sasha explained. “I tried to post as often as possible, even daily. It became like my diary. I kept writing even after Ava passed. I’m actually in the process of writing a book now.”
Sasha hopes the book will help other people and keep Ava’s memory alive. By sharing Ava’s brain tumor experience with the North Dakota community, the family raised funds through the GoFundMe page to help with costs. Additionally, Ava qualified for Medicaid after the stroke due to disability, which reduced medical expenses.
The family stayed at the nearby Ronald McDonald House once they received a spot in November 2021, during Ava’s five weeks of radiation and oral chemotherapy treatments. That still meant weeks of hotel stays for this and multiple other trips to Rochester, Minnesota, where they had to pay for every meal out and essentially live out of a suitcase.
“She basically had no social life whatsoever after her diagnosis,” Sasha said. “You go into these radiation appointments, and it’s all older people, so there was no socialization with kids her age. We only saw one kid her age once. Ava really liked being independent, so it was hard to see her physical abilities change and later would have trouble with falling.”
After going through a three-month appeal process with their insurance company because of denials due to her age, Ava started using Optune, a medical device approved to treat glioblastoma for patients 22 and older, while continuing oral chemotherapy. While Ava initially had to shave her head due to hair loss from radiation treatments, shaving Ava’s head again in April 2022 to begin Optune was quite emotional.
“I was more sad about shaving her head than I expected,” Sasha said. “These occasional cancer-driven events reminded me of reality. They were a harsh awakening from our everyday routine, which we’d tailored to happiness.”
In late September 2022, Ava’s medical team learned that the cause of Ava’s increasing weakness was a new brain tumor about the size of a peanut in her left frontal lobe. This tumor affected the stronger right side of her body, making mobility nearly impossible. She started radiation for the second time shortly after that.
“I kept thinking if we can give her a couple more months, maybe they’ll find a trial she would qualify for,” Sasha explained. “That’s what is running through your head as you’re trying to make sure she has a decent quality of life with treatments but also find a trial that could save her life. It’s a delicate balance.”
Sasha understood her daughter’s tumor prognosis and searched for clinical trials that might give them more time with Ava. She enlisted the help of Ava’s doctors and the Brain Tumor Network.
“I wanted Ava to be in a clinical trial for novel treatment of tumors,” Sasha said. “I put the work in to get clinicals sent to us and talked with different trials around the country. The answer was always no because she had multiple tumors and no progression yet.”
Her medical team told them Ava could get into a trial once the standard of care stopped working. Tragically, Ava passed within three months of her tumors progressing. Her functional status declined so quickly that they couldn’t obtain compassionate use.
“There was no actual trial for treatment of her tumors that she ever was able to get into,” Sasha said. “I think the criteria are way too strict for people diagnosed with such a deadly cancer or disease…We were never given the chance to have hope.”
Sasha, Chad, Ava’s twin sister Ana, and Sasha’s sister Amaya traveled to Washington, D.C., in May 2023 to participate in NBTS’s Head to the Hill to meet with their local representatives and discuss the urgent, unmet needs of the brain tumor community.
“We’re always trying to find a way to remember and do things to help people in Ava’s honor,” Sasha said. “It was good to share Ava’s story and hopefully make our representatives realize that it can happen to anyone.”
The family also acknowledged the emotional challenges of participating less than five months after Ava died.
“Everyone there reminded me of Ava,” Sasha said. “I had to excuse myself from the table at training and bawled for the first half hour. They knew exactly what we were going through.”
As they near the first anniversary of Ava’s passing in December 2022, Sasha and her family remain dedicated to advocating for improved clinical trial access in her daughter’s memory.
Understanding which clinical trial may be best for you or a loved one can be confusing and overwhelming. NBTS’s Clinical Trial Finder allows you to search for a local trial treatment for a specific tumor type.
Increased participation in clinical trials helps facilitate brain tumor research and accelerate the development of new drugs and treatments for patients.
“I know some may think that clinical trials are making your child a guinea pig, but that is not the case,” Sasha shared. “It’s highly regulated and monitored. It’s not being a guinea pig — it’s getting a chance.”
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TAGGED WITH: brain cancer, brain tumor, pediatric brain tumor, Clinical trials, #CCAM
