Embracing Every Moment: Austin’s Parents Encourage Others to Not Lose Hope

On the surface, Austin is like any other 11-year-old. He loves sports—basketball is currently his favorite—and he is a HUGE Boston Celtics fan. But behind his bright smile and endless energy lies five years (nearly half his lifetime) of unimaginable challenges—challenges that have only made him stronger.

Austin’s story isn’t about the hardships he’s faced; it’s about how he and his family have chosen to live life fully despite them. His mother, Diana, puts it best: “Austin’s story does not define him. It empowers him. He is the strongest, bravest, and most fearless warrior I have ever met.”

A Life-Altering Diagnosis

For most, early 2020 will always be synonymous with the COVID-19 pandemic. But for Austin’s family, who live in Newtown, CT, that year brought a different kind of upheaval. At just six years old, Austin began experiencing seizures. Trusting their instincts, his parents sought answers from top doctors in Connecticut. On April 7, 2020, following a series of tests and scans, they received devastating news. Austin had a golf ball-sized brain tumor.

Two days later, on his sixth birthday, Austin underwent a craniotomy at Yale New Haven Hospital. His neurosurgeon successfully removed his tumor, but the associated wave of relief was short-lived as pathology reports introduced more uncertainty. Austin’s tumor was so rare that multiple specialists across the country offered differing opinions on its classification. One diagnosed Rosai-Dorfman disease, another a histiocytic sarcoma. Ultimately, the answer remained elusive, so doctors recommended close monitoring for the foreseeable future.

For the next three years, Austin underwent 12 MRI scans, each returning with the best possible result: all clear. But just as his family was beginning to exhale, the nightmare resurfaced.

A New Challenge Emerges

On March 2, 2023, almost exactly three years following his first seizure, Austin experienced another. The terrifying cycle repeated: electroencephalogram (EEG), CT scan, MRI. But this time it was different. Doctors diagnosed him with epilepsy.

The treatment? A regimen of intense anti-seizure medications. “The side effects of the anti-seizure meds were almost unbearable, and getting the right medication in the right dose was all trial and error,” Diana says. “But we knew we had to control the seizures because at this point he was having up to three a day.”

Summer 2023 was grueling. The medications were taking their toll, but despite everything, Diana recalls, “Austin never complained once.”

Then, in July, while playing in a baseball tournament on Long Island, Austin collapsed on the field with another seizure. That was the turning point. “We knew we couldn’t continue like this,” Diana says. “It was time to seek new options.”

A Search for Answers

The family reconnected with Austin’s neurosurgeon, now at Massachusetts General Hospital, who introduced them to an epilepsy specialist pioneering ground-breaking epilepsy surgeries. The next step was to determine whether Austin was a candidate for this type of procedure. After an exhaustive evaluation, which included a five-day EEG along with several other tests and scans, Austin was deemed eligible for the surgery.

On September 19, 2023, Austin underwent his second craniotomy. This time, the goal was to remove brain tissue triggering the seizures. The surgery was successful, and for the first time in months, Austin was seizure-free. It felt like they had turned a corner.

But the battle was far from over.

A Rare Diagnosis

On October 11, 2023, the pathology results came back. Austin had ALK+ histiocytosis, a rare form of cancer first diagnosed in 2008 and only recently recognized as a distinct disease in 2019. The same abnormal tissue from 2020 had been growing slowly all along. “As unbearable as it was to hear, we finally had a diagnosis,” Diana recalls. “And with that came the hope of finding the right treatment, though there is not a lot out there on ALK+.”

Austin’s seizures were gone, and he was finally able to wean off his anti-seizure medications. But the question remained: Now what?

Doctors recommended continued monitoring via MRI every three months, a regimen Austin still follows  today. However, given the rarity of Austin’s diagnosis and the unpredictable nature of his condition, his parents wonder if this is truly enough.

Choosing Hope, Every Day

Austin’s latest scans reveal residual tissue near one of his brain’s ventricles—a cavity filled with cerebrospinal fluid. ”The thought of a third brain surgery is unfathomable, but we know it can’t be ruled out,” Diana shares. “If surgery becomes necessary, it would likely involve placing a permanent shunt in Austin’s brain.” Another option on the table is oral chemotherapy, though it comes with no defined end date.

It’s an impossible choice. Yet, despite the weight of these decisions, Diana and her family refuse to let fear dictate their lives. “Rather than feel sorry for ourselves, we choose to live life to the fullest. We embrace our journey as much as we can, learn from it, lean on others for support, give ourselves grace on the hard days, and never give up hope.”

Through it all, Austin remains resilient. He takes each MRI like a champ. He continues to play sports, smile, and inspire everyone around him.

Finding Strength in Community

Navigating a rare brain tumor diagnosis can be isolating, but Austin’s family has found solace in their community and newfound connection to the Pediatric Brain Tumor Foundation. “We are just beginning our journey with PBTF after discovering it on social media. We’re looking forward to what it has to offer.”

Austin’s story is far from over. His journey is one of perseverance, hope, and the unwavering belief that more options are always out there. As his family continues to push forward, one thing is certain: they will never stop fighting for Austin. Because as Diana says, “All we have is today. Yesterday is gone, and tomorrow is unknown. So we choose to make today count.”