By Sandy StricklandWhile she was dying from a brain stem tumor, 11-year-old Ellie Kavalieros showed others how to live.
She participated in a painful vaccine trial that she knew probably wouldn't save her but would provide valuable data for those diagnosed in the future.
She inspired events that brought in more than $350,000 for a research fund in her honor.
She did 100 paintings and had a show at the Cummer Gallery of Art & Gardens.
She dressed as a banana last Halloween, her favorite holiday.
The Jacksonville Country Day School sixth-grader died at home on Christmas Day with her big stuffed kitty and the blanket that swaddled her as a newborn in the crook of her arm.
So inspiring was her story that she received 107 messages of condolence on a tribute page.
"She lived every day to its fullest," said her father, Nick Kavalieros. "She was passionate about the way she lived."
The Jacksonville native was diagnosed in May 2010 with Diffuse Intrinsic Pontine Glioma, an inoperable brain tumor and deadly pediatric cancer. There is no cure.
After agreeing to the vaccine trial designed to stimulate her immune system, Ellie and her parents made about 13 trips to Pittsburgh for the experimental vaccine. Most people with the disease live nine months, said Kavalieros, adding that she lasted longer than the 14 or so others in the trial.
"She fought for 19 months and largely because she did love life so much," he said. "A lot of the reason she lived as long as she did and fought as long as she did is that she looked past all the deficits, the pain and the frustration that this horrific disease gives you and found laughter, love and that quality of life that she needed."
Her brain images became a major topic at pediatric brain conferences across the world because she was so unorthodox in how the disease affected her and how she fought it, he said.
She met celebrities, such as Tim Tebow and tennis player Roger Federer, and had a touching phone conversation with surfer Bethany Hamilton, who lost her arm to a shark and inspired Ellie in times of frustration, said her mother Lisa.
The "A" student also was an avid surfer and tennis player who enjoyed being outdoors and trying new things such as scuba diving or unusual cuisine. When her body stopped working, she met the challenge of being inside by turning to art.
It was difficult because she would breathe so hard and fast that her chest would heave up and down for days, Kavalieros said. A week before she died, she painted for hours at the kitchen table barely able to prop herself up.
The Kavalieroses said they are grateful for the care she received from pediatric oncologist Michael Joyce at Nemours Children's Clinic and the staff at Wolfson Children's Hospital, where she spent many weeks.
Friends and classmates raised money for the research fund through birthday parties, lemonade stands, cookie sales, a rock concert, a golf tournament, a haunted house designed by a Mayo surgeon who is their neighbor and a 150-mile bike ride made by a family friend in Massachusetts and 13 of his friends. Donations may be made to The Ellie Kavalieros DIPG Research Fund at Dana-Farber Cancer Institute,www.jimmyfund.kintera.org/Ellie-DIPG.
Other survivors include two younger sisters, Mila and Penelope, and grandparents Theodoros and Aphrodite Kavalieros and Jack and Rosemary Arnold of Jacksonville.
A celebration of her life will be at 2:30 p.m. Friday at Deerwood Country Club, 10239 Golf Club Drive.
For more on her life, visit www.caringbridge.org/visit/elliekavalieros. (You must be a registered user of Caring Bridge to see this page. It is free to register.)
She participated in a painful vaccine trial that she knew probably wouldn't save her but would provide valuable data for those diagnosed in the future.
She inspired events that brought in more than $350,000 for a research fund in her honor.
She did 100 paintings and had a show at the Cummer Gallery of Art & Gardens.
She dressed as a banana last Halloween, her favorite holiday.
The Jacksonville Country Day School sixth-grader died at home on Christmas Day with her big stuffed kitty and the blanket that swaddled her as a newborn in the crook of her arm.
So inspiring was her story that she received 107 messages of condolence on a tribute page.
"She lived every day to its fullest," said her father, Nick Kavalieros. "She was passionate about the way she lived."
The Jacksonville native was diagnosed in May 2010 with Diffuse Intrinsic Pontine Glioma, an inoperable brain tumor and deadly pediatric cancer. There is no cure.
After agreeing to the vaccine trial designed to stimulate her immune system, Ellie and her parents made about 13 trips to Pittsburgh for the experimental vaccine. Most people with the disease live nine months, said Kavalieros, adding that she lasted longer than the 14 or so others in the trial.
"She fought for 19 months and largely because she did love life so much," he said. "A lot of the reason she lived as long as she did and fought as long as she did is that she looked past all the deficits, the pain and the frustration that this horrific disease gives you and found laughter, love and that quality of life that she needed."
Her brain images became a major topic at pediatric brain conferences across the world because she was so unorthodox in how the disease affected her and how she fought it, he said.
She met celebrities, such as Tim Tebow and tennis player Roger Federer, and had a touching phone conversation with surfer Bethany Hamilton, who lost her arm to a shark and inspired Ellie in times of frustration, said her mother Lisa.
The "A" student also was an avid surfer and tennis player who enjoyed being outdoors and trying new things such as scuba diving or unusual cuisine. When her body stopped working, she met the challenge of being inside by turning to art.
It was difficult because she would breathe so hard and fast that her chest would heave up and down for days, Kavalieros said. A week before she died, she painted for hours at the kitchen table barely able to prop herself up.
The Kavalieroses said they are grateful for the care she received from pediatric oncologist Michael Joyce at Nemours Children's Clinic and the staff at Wolfson Children's Hospital, where she spent many weeks.
Friends and classmates raised money for the research fund through birthday parties, lemonade stands, cookie sales, a rock concert, a golf tournament, a haunted house designed by a Mayo surgeon who is their neighbor and a 150-mile bike ride made by a family friend in Massachusetts and 13 of his friends. Donations may be made to The Ellie Kavalieros DIPG Research Fund at Dana-Farber Cancer Institute,www.jimmyfund.kintera.org/Ellie-DIPG.
Other survivors include two younger sisters, Mila and Penelope, and grandparents Theodoros and Aphrodite Kavalieros and Jack and Rosemary Arnold of Jacksonville.
A celebration of her life will be at 2:30 p.m. Friday at Deerwood Country Club, 10239 Golf Club Drive.
For more on her life, visit www.caringbridge.org/visit/elliekavalieros. (You must be a registered user of Caring Bridge to see this page. It is free to register.)
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