Lisa Kavalieros remembers her daughter, Ellie, as determined from the very beginning. Born on Feb. 17, 2000, Ellie hit developmental milestones early. She slept through the night early, spoke her first words early and walked before other children her age.
“She was just special,” Kavalieros said.
As Ellie grew older, she was happiest in the sunshine and salty air.
She was athletic and enjoyed surfing at the beach and playing tennis. She would swim out on the water and bring back the “critters” she found. She loved visiting Greece, her father’s home country, and spending time in the kitchen cooking with her Yaya. Ellie shared an incredibly close bond — and hours of belly laughs — with her younger sisters, Mila and Penelope.
Always a healthy child, Ellie suddenly developed blurry vision and weaknesses in her left arm and leg.
In May 2010, she was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare and aggressive pediatric brain cancer. DIPG occurs in pons of the brainstem and is the deadliest and most aggressive of all pediatric cancers.
When Ellie was first diagnosed, the family was told there was little that could be done because biopsies were too risky, and many treatments couldn’t reach the tumor.
“That didn’t sit well with us,” she said.
They scoured the world for physicians and treatments that could offer some hope. They connected with a researcher doing promising work tailor-making a vaccine, but unfortunately, the researcher was not at the point where this could be done for Ellie.
With the support of their friends and community, the Kavalieroses raised funds to help launch the first trials that biopsied tumors and analyzed the genetic makeup of the tumors to better understand the disease.
“We knew once researchers had the tissues, they can better sequence the tumor,” she said, emphasizing the importance of this step in developing targeted therapies.
Throughout the 19 months that followed, Ellie faced each day with remarkable bravery, courage and maturity beyond her years.
As her symptoms worsened, the family focused on Ellie’s quality of life.
“She never required anesthesia, even during two-hour MRIs, and she insisted on listening when doctors shared her reports, wanting to understand every step of her treatment,” she said.
Sadly, Ellie passed away Dec. 25, 2011, at the age of 11.
The family donated Ellie’s brain tissue and tumor for research, hoping to advance discoveries that could help other children in the future.
“She was very determined to make sure this didn’t happen to other children. That’s her spirit,” she said.
In Ellie’s memory, the Kavalieros family partnered with Golf Fights Cancer to raise funds that benefit critical pediatric brain cancer research. The funds support the University of Florida Brain Tumor Immunotherapy Program’s work to develop new ways to help the immune system fight brain tumors, including DIPG.
“We have created a promising approach using advanced gene editing to help the immune system better recognize and attack these tumors,” said Duane A. Mitchell, M.D., Ph.D., director of UF’s Clinical and Translational Science Institute and co-director of the Preston A. Wells Jr. Center for Brain Tumor Therapy.
The project, Next Generation Stem Cell Immunotherapy for Pediatric Gliomas, uses blood stem cells from bone marrow, which can become any type of immune cell.
“We are testing whether we can guide these cells to become the kind that attack tumors while reducing the cells that help tumors grow,” Mitchell said.
The Kavalieros family recently met with the research team lead by Dr. Mitchell and Catherine Flores, Ph.D., an associate professor at the UF Department of Neurosurgery, and are impressed by the direction they are headed.
“This work is so critical because finding a cure for DIPG is also believed to hold the key to curing many types of cancer,” Kavalieros said.
The decision to support research at UF was made easier by the fact that Lisa and her parents, John and Rosemary Arnold, are proud alumni.
“There are Gators on all sides of our family,” she said.
By supporting research at UF, the Kavalieroses are honoring Ellie’s wish to help other children while fueling discoveries that could lead to better treatments and, one day, a cure.
The Kavalieroses partner with Golf Fights Cancer
Early in their fight, Ellie and her family teamed up with Golf Fights Cancer, a non-profit organization that draws on the passion and generosity of all golfers and raises funds for cancer-related organizations and families living with the disease.
Through this partnership, the Kavalieroses created the golf event originally known as the Good Guys Good Gals Invitational, now affectionately called The Ellie Invitational, where 100% of the proceeds go directly to DIPG research.
To date, GFC has awarded $15 million in funding to over 90 different cancer-related charities, and the Kavalieroses have raised more than $1 million to advance the understanding and treatment of DIPG. Lisa serves as a member of the board of directors.
“With Ellie, we were provided a deeper appreciation of life and love,” she said. “We have a moral responsibility to do what we can.”
Through every gift and every step forward in research, Ellie’s spirit continues to guide her family’s mission to bring hope to others. In helping children and families facing DIPG, the Kavalieros family honors the way Ellie lived — determined, kind and full of courage.
Golf Fights Cancer’s Kavalieros Family Fund for DIPG Research
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