STANFORD — Dave and Kristine Wetzel made the decision at one of the most heart-wrenching moments of their lives.
Just hours before their nearly 8-year-old daughter, McKenna, succumbed to an inoperable brain tumor in July 2011, the Huntington Beach couple decided to donate some of her cancerous tissue to Stanford University for research.
The goal: to grow the cancer cells so scientists can develop drugs and other treatments for a disease that is nearly always fatal.
“It’s macabre — the thing that killed our daughter is still alive,” Dave Wetzel said. “But we think that McKenna’s in a good place.”
Researchers have had few options for studying McKenna’s condition, known as diffuse intrinsic pontine glioma, or DIPG. Because the cancer embeds in the brain stem, it is rarely biopsied and cannot be surgically removed.
As a result, little tissue has been available for testing drugs and therapies.
In the past 30 years, “there’s been almost no progress made in better understanding the disease,” said Dr. Michelle Monje-Deisseroth, an assistant professor in neurology at the Stanford Institute for Stem Cell Biology and Regenerative Medicine.
“We don’t know of anything that causes it,” she said. “It’s just one of those seemingly random events that comes out of nowhere. There’s no genetic predisposition for it.”
DIPG is the second-most-common malignant brain tumor in children, with about 400 new cases each year in the United
States. It typically strikes school-age youths.
Monje-Deisseroth heads the Stanford laboratory overseeing this work. In 2009, her team created the world’s first DIPG stem cell line with tissue from another child.
Since then, 10 families from around the world have donated portions of their child’s DIPG tumor to Stanford. Scientists have been able to create cancer stem cell lines from four of those donations, including McKenna’s.
The stem cells have been shared with researchers
at nearly two dozen institutions, including Harvard, St. Jude, Duke, Johns Hopkins, and in facilities as far away as Spain, Australia and the United Kingdom.
Knowing that Monje-Deisseroth would widely distribute the cells drew the Wetzels to the Stanford researcher.
“You can tell she really doesn’t care who gets credit for curing cancer,” Dave Wetzel said. “You can tell this is her life’s passion.”
Years ago, Monje-Deisseroth chose to focus on DIPG after caring for a young girl with the disease and being frustrated by how little she could help her.
“No chemotherapy strategy to date has worked at all, so it’s a pretty dismal disease,” Monje-Deisseroth said.
Most children die within nine months of a diagnosis, although radiation may give them an additional three months or so.
Stanford researchers have used the stem cells to create DIPG-like tumors in mice so they can gain more understanding about how the disease develops and test potential drugs and drug combinations.
“I want to know what we can bring to clinical trial as quickly as possible,” Monje-Deisseroth said.
Doctors did not sugarcoat their prognosis when they told the Wetzels that McKenna had DIPG.
After stressing that no cure exists, one doctor told them, “You need to make her smile.”
So the family kept her out of the hospital as much as possible, trying to make her last days as joyful and comfortable as they could.
With the help of the Make-A-Wish Foundation, they squeezed in a trip to Hawaii where McKenna tried surfing. Many of the family’s friends joined them.
“She got to swim with some dolphins,” Wetzel said. “We’re grateful and humble we got to do that.”
But such trips soon became impossible.
“Watching your child die is brutally graphic,” Wetzel said. “The tumor robs them of the ability to breathe. They can’t eat.”
As the end neared, their neighbor Lisa Roberts began looking into the possibility of donating McKenna’s cells and learned about Monje-Deisseroth’s work.
“McKenna was my daughter’s best friend and she was like a daughter to me,” Roberts said. “I felt really helpless to provide them any comfort at all, but I didn’t want them to have any regrets that something great could come out of McKenna’s cells.”
A day or two before McKenna’s death, Roberts broached the delicate subject with the Wetzels and they agreed to the donation.
Monje-Deisseroth hired a tissue recovery specialist who took a sample shortly after McKenna died, embedded it in ice and flew it to the Bay Area.
The Wetzels have formed the McKenna Claire Foundation and held fundraisers to further the research. They donated $30,000 to Stanford initially and recently gave $70,000 more.
Researchers are gaining a better understanding of the disease, and within the past couple of years, other institutions have reported making DIPG stem cell lines although their work has not been published, Monje-Deisseroth said.
“What we hope is to have a clinical trial that is both safe and can extend life,” she said. “We’re working toward finding drugs that can do that.”
As the research continues, the hope that McKenna’s cells may help other children comforts the Wetzels.
“She was the light of our world,” Dave Wetzel said. “We want to keep that light shining.”
Sandy Kleffman covers health. Contact her at 510-293-2478. Follow her at Twitter.com/skleffman.
A deadly cancer
Facts about diffuse intrinsic pontine glioma (DIPG):
The cancer primarily strikes children ages 5 to 9.
Malignant cells entwine with healthy cells in the brain stem so they cannot be removed.
It takes away control of basic body functions such as talking, swallowing and moving eyes or limbs.
Up to 400 new cases are reported annually in the United States.
No known cause or cure exists and chemotherapy generally is not effective. Ninety-nine percent of children who contract DIPG die.
The average survival time after diagnosis is nine to 10 months. Radiation may extend life by three months.
Source: Stanford University, Dr. Michelle Monje-Deisseroth
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