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Vivienne’s Story
Light in the Darkest Fight
On November 16, 2018, Vivienne Cecilia Finn’s world, and her family’s, shifted forever.
What began as a visit to the pediatrician for what was thought to be a cold or strep throat turned into a life-altering diagnosis. After weeks of subtle signs, her tilted head, a softening smile, and a mother’s instinct that something wasn’t right, Vivienne was rushed to Yale New Haven Hospital, where an MRI revealed a mass in the pons region of her brainstem.
It was DIPG, Diffuse Intrinsic Pontine Glioma, a rare and inoperable brain tumor that affects children with brutal speed. Families are often told the prognosis is 6 to 9 months. Vivienne and her family would fight for 17 months.
The Marathon That Is DIPG
The days that followed were a whirlwind: neurological exams, an ambulance ride, and a team of doctors preparing Vivienne’s family for the unthinkable. She underwent 31 rounds of radiation, bravely tolerated steroids, and enrolled in an immunotherapy trial at Memorial Sloan Kettering Cancer Center, receiving a combination of Nivolumab and Ipilimumab.
For a brief window, Vivienne found joy. She entered 5th grade, joined her middle school soccer team, and grinned onstage during school plays like Frozen and Annie. A special family trip to Walt Disney World, gifted by generous friends, gave Viv and her siblings a magical day to simply be kids again, just once more.
But cancer doesn’t let go easily. In September 2019, on her father’s birthday, the family received devastating news: the tumor was growing again. They exited the immunotherapy trial and fought for access to ONC201, a promising new treatment. With the help of Yale, The Musella Foundation, and Cancer Commons, Vivienne continued her treatments, supported by a team who treated her like one of their own.
Her tumor remained stable for a time, but side effects from necrosis and inflammation slowly returned. School ended early, and on March 10, 2020, Vivienne passed away at the age of 11.
She died surrounded by love, faith, and the unshakable strength that had defined her life.
A Legacy of Action
Vivienne didn’t sit around waiting to be asked to help, she acted. Her spirit lives on in the work we do through this foundation.
We fight to make pediatric cancer treatable in our geographic area so kids can live to adulthood and realize their dreams.
We fund research for therapies designed for kids, not just downsized adult regimens.
We walk, we raise, we advocate, and we honor her every step of the way.
Vivienne once said:
“A heart that with the help from God could do no wrong… My heart’s goodness shall be shared.”