Story of family's tumor donation inspires more donations

On her son’s first day as a brain tumor patient at Lucile Packard Children’s Hospital Stanford, Danah Jewett asked one of his doctors if her family could donate 5-year-old Dylan’s organs to other children when he died.

Most organs from cancer patients can’t be transplanted, the pediatric neuro-oncologist, Michelle Monje, MD, PhD, explained. But the Jewetts could make an even bigger difference by giving Dylan’s tumor to Stanford for research, a donation with the potential to fill a gaping hole in the science of childhood cancer.

Surprised, Dylan’s parents said yes.

After Dylan’s death on Jan. 8, 2009, Monje and her colleagues transformed his tumor into the first cell culture of its type anywhere in the world. A few months later, a story in Stanford Medicine magazine about the Jewetts’ gift inspired more families to make similar donations, further boosting the research.

Dylan had diffuse intrinsic pontine glioma, which grows in the brain stem region that controls breathing and heartbeat, tangling its cancerous cells with healthy cells “like a sweater knitted of multicolored yarn,” said Monje. It’s rare, striking a few hundred school-aged children in the United States each year, but not rare enough: Of every 100 patients, 99 die within five years of diagnosis. And DIPG’s dismal prognosis has not improved in 40 years.

Monje, now an assistant professor of neurology, was motivated to study the disease by the plight of a young patient she cared for while still a medical student. But when she began her work, she hit a roadblock: Because of its location, the tumor isn’t usually biopsied. There were no DIPG cells to examine in the lab.

In 2008, when Monje received approval for a protocol to collect tumor tissue from recently deceased DIPG patients for research, she worried about how parents of dying children would feel about being asked to donate the tissue. Shortly thereafter, Dylan came to Stanford, and his parents wanted to help doctors change the course of a disease his dad, John, called “a death sentence for kids.”

Inspiring others

Their generous donation and openness about sharing their story made a difference: Twenty-one families, many of whom learned of the need for donations by reading Dylan’s story in Stanford Medicine, have now donated tumor tissue to Monje’s lab.

With the donated tissue, Monje’s team created the first cell line and mouse model of the tumor, which they have shared with scientists around the world. They’ve identified a candidate cell of origin for DIPG, learned that the tumor hijacks part of the brain’s normal mechanism for neuroplasticity to promote its own growth, and identified an FDA-approved drug that extends the lives of mice with the disease. The team is now planning a clinical trial of this drug, panobinostat, to see if it will also help children.

Danah later met one family that donated tumor tissue after reading the story about Dylan: “I thought, ‘Wow, this really encouraged another family to do this,’” she said. “It was a really good feeling.”

Many families of DIPG patients have also raised money for Monje’s research, contributing a total of more than $1 million to date.

“The story doesn’t end when Dylan died,” Danah says. “It feels good to know that my child’s life wasn’t just those five years. He’s continuing to make a difference.”