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Cancer, Pediatrics, Stanford News

New Stanford trial targets rare brain tumor

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Today is the first anniversary of the death of five-year-old Dylan Jewett, a cancer patient I wrote about last summer in Stanford Medicine magazine. Dylan had diffuse pontine glioma, a rare pediatric brain tumor so aggressive that, tragically, only one in 100 patients survive five years. He died less than eight weeks after his diagnosis – one of Dylan’s doctors called his tumor “the worst of the worst.”

“It’s a death sentence for kids,” said Dylan’s dad, John, when I interviewed his family last year.

But, thanks to the Jewett family, that grim prognosis may change.

After Dylan’s death, his parents John and Danah donated their son’s tumor to Stanford for research. “This family was so generous and selfless in the face of unimaginable tragedy,” said Michelle Monje, MD, PhD, a neuro-oncology fellow at Lucile Packard Children’s Hospital who provided much of Dylan’s care and played a key role in studying his tumor tissue.

Just a year after Dylan died, the Jewetts’ generosity is enabling a clinical trial of a new treatment for the disease that claimed their little boy. The trial, funded by a $1.6 million grant from the National Institutes of Health and by money from the Packard Children’s Brain and Behavior Center, will target a cellular marker that Stanford researchers identified on Dylan’s tumor. The cell marker isn’t expressed on healthy brain cells, but has been seen on an adult brain tumor called glioblastoma multiforme. Stanford professor of neurosurgery Albert Wong, MD, has led a multi-year effort to target the marker in the adult cancer; his team’s nascent treatment has already made it through phase-2 clinical trials.

Now, the same treatment will be offered to kids with diffuse pontine glioma. Just a year ago, these children and their families would have faced a nearly hopeless situation. Now, neurosurgeon Michael Edwards, MD, and neurologist Paul Fisher, MD, who are leading the new trial, have a very different message: There’s something that may help.

After having cried into countless cups of tea while writing about Dylan’s illness and death, this change makes me really, really happy.

So, from everyone at Stanford: Thank you, Dylan. Thank you, John and Danah.

Photo courtesy of the Jewett family.

3 Responses to “ New Stanford trial targets rare brain tumor ”

  1. Danah Jewett Says:

    Dear Erin,
    Oh thank you so much for this gift. It was so unexpected to see anything written about Dylan today (other than what I have been writing).
    I was moved to tears, Thanked my Lord in Heaven, and Brought the computer out to have John read it…..He sentit to his email……
    Oh words cannot express……
    Thank you…..

  2. Kim Roberts Says:

    I am the grandmother of our precious Dylan (Danah’s mother) and I too am moved to tears reading of this wonderful news. I have struggled this last year to find what good could possibly be found in the loss of our angel… and now, here it is. Thank you so much for this news of hope. In Christ, Kim Roberts

  3. sherri Says:

    How touching!! I often wonder who did the clinical trials for our 3 year old son’s cancer years ago. I’m so thankful for all the research.. and dedicated doctors..

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