Tumor that killed girl may hold key to keeping others alive

  • Article by: ASHER KLEIN , Orange County Register
  • Updated: May 4, 2013 - 6:05 PM

Wanting the death of their 7-year-old to have meaning, a California couple donated her tumor to research, hoping to save other kids.

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finding meaning in death: Dave and Kristine Wetzel, holding a photo of their daughter, McKenna, are surrounded by members of the McKenna Claire Foundation. McKenna died in July 2011, just six months after being diagnosed with a rare brain cancer. The foundation supports research that uses cells from her tumor.

Photo: Ana Venegas • Orange County Register ,

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McKenna Wetzel, a playful girl who loved selling lemonade on the corner near her Huntington Beach home, was 7 when a tumor was discovered growing deep in her brain.

It’s still growing in a laboratory at Stanford — the last living part of a girl who died two summers ago, and the part that killed her.

“You could take that petri dish,” her mother, Kristine Wetzel, said, “I could slam it against the wall and I could kill those cells. But we couldn’t kill them while they were in her.”

Inoperable while McKenna was alive, the tumor is sustained in 2 million-cell batches in California, England, Australia and beyond by researchers who see it as one of the best hopes of finding a cure for the cancer.

Wetzel and her husband, Dave, created the McKenna Claire Foundation, which has raised nearly $500,000 to propagate donated tumor cells from their daughter and other children who have died. They hope the research they’re funding will save the next set of kids stricken with the cancer that killed McKenna.

“There’s so much you can’t control with this disease and there’s so much, especially at the end, that’s devastating and out of your control. You watch your child lose the ability to speak, to move, to see, to hear, to swallow, to breathe,” Kristine Wetzel said. “I wanted my daughter’s death to have a purpose.”

McKenna Claire Wetzel was told she had diffuse intrinsic pontine glioma, or DIPG, in January 2011. The rare cancer that weaves through a critical part of the brain is treatable in adults but considered a death sentence in children.

The family was buoyed by the promise of clinical trials, including one with Stanford researcher Dr. Michelle Monje, but none of the leads materialized.

The second-grader kept going to school at Eader Elementary. Classmates would stay inside with McKenna, who was struggling with her balance and needed help simply getting around, a family friend said. McKenna’s friends came to her house every Tuesday night, and nearly 1,000 ­people attended a block party that raised about $50,000 meant to help pay for treatment, her mother said.

The Wetzels wanted McKenna to have as normal a life as possible, so they told her and her sister, Jordan, that they were trying to make McKenna feel better, not save her from a deadly disease.

‘She knew’

“But she knew,” Wetzel said. “She only cried one time that I know of. She was up in her room and I asked her, what’s wrong? She said, ‘You don’t want to know, Mommy.’ Then she wouldn’t talk about it.”

McKenna had begun to feel the effects of the tumor again, her mother said, after a couple of good months after radiation. ­Ultimately, their “last stand” against the cancer, as Wetzel put it, was to donate McKenna’s brain tissue.

McKenna died in July 2011, just six months after her diagnosis. A lab tech flew down from Stanford to pick up the tumor. Today, tumors from McKenna and five other children who died of DIPG are tended by Anitha Pannuswami, a laboratory manager at Monje’s lab at Stanford.

Monje’s lab is one of a few in the world that harvest DIPG cancer cells so they can be bombed with drugs or implanted into mice for further study. The lines of cell ­replicas are key because little is known about DIPG.

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  • Dawn Sparks, a member of the McKenna Claire Foundation makes a point during a recent meeting of the McKenna Claire Foundation in Huntington Beach, California. (Ana Venegas/Orange County Register/MCT) ORG XMIT: 1137734

  • FACTS

    ABOUT DIPG

    While pediatric cancer deaths have been halved since 1975, child mortality caused by tumors in the central nervous system have held steady, the National Cancer Institute said. Diffuse intrinsic pontine glioma (DIPG) kills 200 to 300 children a year and is the leading cause of brain cancer deaths in kids.

    Treatment challenges: Surgery is too dangerous, chemotherapy ineffective and radiation only works temporarily, DIPG researchers say.

    Diagnostic problems: “I think investigations into DIPG lagged because of the lack of ability to analyze the tumors,” said Katherine Warren, head of Pediatric Neuro-Oncology for the national Center for Cancer Research. New techniques in imaging, labs biopsying tumors outside the United States and autopsy collection have changed that, she said.

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