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Strong Kids

Patient Story: Finn Schillaci

Aug. 31, 2023
A New, Less-invasive Treatment Option Helps a Young Boy Recover from a Brain Tumor Diagnosis

For children with cancer, survival is the most important factor, but it’s not the only one. In the case of Finn Schillaci, his family and care team had to make a choice between two effective treatments: one safer, but with more side effects, and another on a riskier timeline, but with a greater likelihood for a high quality of life.

Finn’s symptoms started with a limp in October of his kindergarten year at school. By the time the Halloween parade came around, Finn’s limp had worsened, and his eyes started crossing unusually. His parents took him to the pediatrician, and he was immediately referred to the GCH Emergency Department.

A CT scan of his head brought devastating results for the Schillaci family: Finn had a brain tumor and would need a biopsy to determine the type of tumor. It would take several weeks for this process to be completed.

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At this point, Finn’s potential treatment plan reached a critical juncture. David Korones, MD, director of the Brain Tumor Program at GCH, suspected—based on the tumor’s location and shape—that it was a Pilocytic astrocytoma, a low-grade glioma that is very treatable.

The Schillaci family could have taken the safe route and started Finn on an intensive program that would include installing a port into his brain and engaging in sixty weeks of chemotherapy. On the other hand, they could wait a few weeks to confirm the specific type of tumor, at which point Finn would be eligible to take a less-exhausting new treatment in the form of a pill that could be taken orally every day, with minimal side effects.

“The standard chemotherapy regime works, but it’s not the be-all, end-all of options,” said Korones. “We thought he had a specific mutation, and we really wanted to confirm this mutation to see if we could give him a more palatable treatment, which would be better for tumor control.”

The downside of this approach was that Finn’s treatment would have to wait, and in the world of brain tumors, symptoms can progress in a matter of weeks.

“While we awaited the results, Finn’s face got swollen, and his weakness had progressed to where he couldn’t reach his arm up. At one point, we had to wheel him to the bathroom,” said Finn’s father, Vince.

Yet the Schillaci family was committed to exploring the better treatment option, based on the data Korones presented to them regarding its effectiveness. To hedge against the worst-case scenario, Korones also scheduled a chemotherapy appointment for Finn to happen immediately if the test for the genetic mutation turned out to be negative.

“Dr. Korones went the extra mile, even negotiating with the insurance company to ensure this treatment would be fully supported for Finn,” said Vince.

The biopsy results confirmed that Finn indeed had the mutation, and he started taking the oral drug. The positive results happened quickly: Within three to four months, Finn’s tumor had shrunk by 50 percent, and he was back to being the kid he was prior to the diagnosis.

“He looks and walks like our son again. He’s riding a two-wheel bike, playing with friends in the neighborhood, and jumping on trampolines,” said Vince.

For now, Finn will need an MRI and bloodwork checkups every three months. His team will also be monitoring the long-term of effects of this relatively new drug. When Finn gets older, he’ll eventually need radiation treatment to shrink the tumor further. But at this point, the Schillaci family can exhale—and enjoy watching their child grow up.

“We’re so far ahead of the curve that it’s not scary anymore,” said Vince.