Quest magazine

Patient Profile: Behind Project Violet

The girl who helped inspire new ‘citizen science’ at Fred Hutch

Violet O'Dell

Photo provided by the O'Dell family

Jess O'Dell knew her 10-year-old daughter, Violet, had two important things to say to Dr. Jim Olson during an appointment on an early summer day:

“She told him, ‘You can say anything to me. Don’t be afraid to tell me because I’m not afraid,’” she recalls.

“And then she asked him: ‘Am I going to die?’”

Violet was diagnosed with a brain tumor in September 2011 and had been through radiation and chemotherapy that shrank the tumor – until it grew again.

“I said that more than likely this tumor would take her life,” said Olson. “But we don’t know when and we don’t know how.”

Violet’s directness didn’t surprise Jess O’Dell or her husband, Jeramie, who remember how Violet met life head on – and tried to improve the world. That’s why she decided to donate the tissue from her tumor to help doctors improve treatment.

It’s also why, her parents say, she would be proud of Project Violet, a crowdfunded endeavor Olson started to explore potential new therapies.

While Violet’s life is having an impact on science, her mom remembers her as her bright and joyful little girl.

“She had a shine on her,” she said. “Even adults who didn’t like kids – they all loved Violet.”

Jeramie O’Dell said Violet always wanted to help with projects around their home in Sequim, Wash. The first sign that something was wrong came when she kept forgetting to feed their dogs.

Not long after, her parents noticed personality changes. Then Violet began falling asleep in her fifth grade class. After she started mumbling her words, her parents took her to a host of specialists. An MRI revealed Violet’s malignant tumor.

“My heart stopped but I had to keep calm,” Jess O'Dell said. “Violet knew if Mom could be brave, she could too. Later we knew it was OK to be scared too. There’s no place to go but forward.”

Making the most of the time they had

Violet started radiation within days of her diagnosis. After what Jess O’Dell calls “the period of false hope,” the tumor began growing again. Violet decided to stop treatment after that appointment with Olson – and then the O’Dells set about making the most of the time they had.

“[Her parents] celebrated her life without mourning the loss of things that she might someday participate in,” Olson said.

Violet, who had a strong faith in God, was never afraid, said her mom. In her last days, her friends and family gathered and kept vigil. “We wanted to surround her with as much love as possible,” Jess O’Dell said.

Violet died quietly in October 2012, as her dogs and cats slept on her bed and her family whispered words of love and told her how proud they were and that they’d see her again in heaven.

“It was amazing and beautiful,” remembers her mom.

Jeramie and Jess O'Dell

Violet's parents, Jeramie and Jess O'Dell

Photo by Robert Hood

‘What are the possibilities of now?’

A year later, Jess O’Dell still finds herself grappling to understand her place in the world. But most days she feels joy, even as she misses her daughter.

“I’ve gone from focusing on ‘What do I do now?’ to ‘What are the possibilities of now?’” she said.

Asked how her daughter would feel about Project Violet, Jess O’Dell doesn’t have to think.

“If it was the sick Violet at the end of her life, she would do what we called ‘happy hands’,” she said. “If it was the healthy Violet, she’d laugh and say, ‘Yeah, I’m rad!’”

Write to Linda Dahlstrom at ldahlstr@fhcrc.org

Learn more at projectviolet.org

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