A family’s story changes the science of a rare tumor

When Danah Jewett’s 5-year-old son, Dylan, was dying from a brain tumor in 2008, she wanted to know if there was anything her family could do to help other children who might someday face the same terrible diagnosis. Yes, said Dylan’s doctor, Michelle Monje, MD, PhD: Would you be willing to donate his tumor for cancer research after his death?

Danah and Dylan’s dad, John, didn’t hesitate. If it will help, they said, we’ll do it.

Monje explained that scientists needed a way to study Dylan’s rare tumor, diffuse intrinsic pontine glioma, in the lab. The tumor grows tangled into a part of the brain stem that is risky to biopsy in living patients, and decades of chemotherapy trials had not budged the disease’s five-year fatality rate of 99 percent. But having DIPG tumor cells in a dish would open a new world of research options for understanding the biology of the tumor and – Monje hoped – developing new treatments.

After Dylan’s death in early 2009, Monje’s team succeeded in transforming his tumor cells into the world’s first DIPG tissue culture. A few months later, I wrote a feature story for Stanford Medicine magazine about the Jewetts’ donation and its impact. In the intervening years, as I’ve continued to report on Monje’s DIPG research, she has also kept me abreast of the effect of Dylan’s story. It’s pretty remarkable: So far, 21 other families have donated DIPG tissue from their deceased children, many after reading the Stanford Medicine story. And DIPG families have also raised more than $1 million to help fund Monje’s work. Their generosity is enabling new understanding of how the tumor functions, and has helped Monje’s team identify an existing drug that slows DIPG in mice.

I recently interviewed Danah for a short follow-up piece for Stanford Medicine about the impact of Dylan’s story. I asked her to reflect on why she felt able to share the story, given that many families wouldn’t want to open a window for the world into such a heartbreaking part of their lives.

“It’s a hard one,” Danah told me. “I do know a lot of families stay private, but it didn’t dawn on me at the time. I knew then that I just didn’t want to let his memory die. By sharing the story, it helped Dylan to be living on – in my heart and other people’s.”

Her sense that sharing the story was the right thing to do was reinforced by meeting another family who had decided to donate DIPG tissue after reading it. “I thought, wow, this really encouraged another family to do this,” she said. “It was a really good feeling.”

She also had a few thoughts for other parents facing the grief of losing a child.

“It’s the most painful thing I’ve ever gone through, and it doesn’t ever go away and stop, but as time goes by, your life changes and you grow,” she said. “I’m saying this as an encouragement to newly grieving parents: It doesn’t always hurt the same way. There can still be a joyful life with time.”

For her, some of that joy has come from seeing the progress of the DIPG research at Stanford. “As bad as it is to have lost Dylan, this may not have happened if it hadn’t been for him,” she said. “He’s still making a difference. He still mattered.”

Via Scope
Artwork by Mark Matcho