Chenia Lloyd-Gascho: Living Fully, Thanks to a Breakthrough in Targeted Therapy

At 18 years old, Chenia Lloyd-Gascho is thriving as a first-year civil engineering student at the University of Toronto, with plans to one day design cities and improve public transportation systems. But behind Chenia’s bright future lies a journey shaped by rare genetics, remarkable science, and resilience.

When Chenia was 8, he and his older sister were diagnosed with Li–Fraumeni syndrome (LFS)—a hereditary condition that dramatically increases the risk of developing cancer. The diagnosis came after the family had already endured several losses to cancer, including Chenia’s aunt and grandmother. “It was pretty confusing, and I didn’t fully grasp what was happening at the time,” Chenia said. “I got pulled out of school every 3 months for scans and tests, but I didn’t fully understand why.”

For several years, blood tests and MRIs were regular parts of life for their family. Then, in late 2021, the phone rang. Chenia’s mother, Denise, immediately recognized the number—it was The Hospital for Sick Children (SickKids) in Toronto where Chenia is being treated.

“The doctor said, ‘We found something,’” she remembered. “It’s surreal to hear that news over the phone. Your life has just been turned upside down, and you don’t know what the other side of this looks like.”

A biopsy confirmed a genetic mutation in the IDH1 gene, and the diagnosis became official: a grade 2 astrocytoma, a type of slow-growing glioma (brain tumor). “I was 14, at my dad’s family cottage when my mom called and told me that they had found some sort of mutation,” Chenia said. “At first, I didn’t process it. Days later, I realized—this means I have cancer.”

Because the tumor was slow-growing and caught early through LFS surveillance, Chenia’s doctors recommended laser ablation, a procedure that uses focused heat to destroy tumor tissue. The surgery, performed in April 2022, was successful—but recovery was grueling. “I couldn’t tell where my hands or feet were in space,” Chenia said. “I kept bumping into walls. It was funny for like an hour, then it wasn’t.”

For Denise, watching this unfold was heartbreaking. “There are ways in which brain surgery changes your personality and confidence,” she explained. “The hope of new treatment options meant maybe no one would ever have to cut into my child’s head again.”

That hope became a reality in the form of an emerging targeted therapy called vorasidenib, an oral IDH inhibitor designed to slow tumor growth in patients with the same genetic mutation driving Chenia’s cancer. “We were on vacation in Jamaica for Chenia’s 17th birthday,” Denise said. “Our oncologist called to say you’ve been approved for vorasidenib. I said, this is the best birthday present ever, the best of all worlds.”

Starting the drug was not easy; fatigue and neck pain made school difficult at first. “Sometimes I would have to come home early because of how tired I was. I would fall asleep at 4 p.m. and sleep through the entire night,” Chenia recalled. “But compared to the alternative, it was definitely better.”

The drug has allowed Chenia to regain a sense of normalcy—balancing coursework, friends, and hobbies while managing ongoing monitoring. For Denise, the change has been transformative. “This treatment gave me my child back,” she said. “It means Chenia can go to school, see friends, live life—and not face another surgery.”

This journey shaped Chenia’s deep appreciation for the importance of continued research and mental health support. Now, they speak openly about living with LFS and cancer, hoping to reduce the stigma and highlight the power of science. “I used to hide it,” Chenia said. “Now I’m honest about being tired, about what I’m going through. This medication didn’t just change my health—it changed how I think about my future.”

To policymakers, Chenia’s message is clear: “Cancer research changes everything. It turns what used to be a death sentence into something you can live with. Every discovery gives people like me a future. That’s why funding this research matters—it’s what keeps hope alive.”