Janet Demeter of Agua Dulce first heard the words “diffuse intrinsic pontine glioma” in 2012, just after her son Jack celebrated his third birthday.
The little boy whom Demeter remembers “lit up a room” with his joy and his belly laugh was diagnosed with that form of pediatric brain cancer at the time. He did not live to see his fourth birthday.
“He was the love of my life,’’ Janet recalled on Tuesday by phone from Washington D.C., where she was on hand as Rep. Steve Knight introduced a congressional resolution a day earlier in support of research and awareness for DIPG.
“He got to go to preschool for just a little while, and he loved it,’’ Demeter recalled. “All the teachers loved him. He would get there and go, ‘I’m here! ’ ’’
After Jack’s death at age 3 years and 11 months, Demeter founded the Jack’s Angels Foundation, which pushes for awareness of DIPG, a highly aggressive form of pediatric brain cancer that kills virtually 100 percent of those diagnosed within nine months – and about which, she said, there is very little specific research.
That’s what led her to Washington this week as Knight, a Republican from Santa Clarita’s 25th District, and Rep. Jackie Speier, a Democrat from San Francisco, co-sponsored House Resolution 69 to support expanded research, and also to declare May 17 as a national “DIPG Awareness Day.”|
“This resolution would help bring much-needed awareness to a tragic reality and could bring us one step closer to ending childhood cancer once and for all,” Knight said in a statement.
According to Knight’s office, “DIPG is one of the more common pediatric brain tumors, and less than 1 percent of its victims live more than five years after diagnosis. … Despite its prevalence, the cancer has not garnered significant attention from the media, government agencies, or research investors, and as a result parents are regularly told there is nothing outside of palliative care they can do for their children.’’
The Knight-Speier resolution is actually a reintroduction of one introduced in the last Congress, but which stalled in committee before the session ended. “Now that people know it’s there, I think we’ll have good luck this year,” Demeter said of the resolution.
Demeter called DIPG “the great embarrassment of the medical system,” because, “It’s the deadliest form of childhood cancer. There are no survivors.”
As a result, she said, the disease has been marginalized in the medical community, and research has lagged.
“Standard treatment is radiation and hospice — that’s it.
There are other things going on experimentally now, however, because parents are trying to band together and get funding.
“In the medical industry, it’s all about silos, and selling the most drugs. If we really wanted to save lives, we’d go after the deadliest cancer that completely escapes our science.’’
Demeter said that between 200 and 400 cases every year are diagnosed in the U.S., while Boston Children’s Hospital puts the estimate at 300, most diagnosed between the ages of 5 and 9.
Scott Wilk – then an Assemblyman from Santa Clarita, now one of the city’s state senators – first introduced a statewide DIPG awareness day in 2014. Knight, then a state senator, was also active in the cause back then, Demeter said.
Demeter said she first met Wilk that year and told him about losing little Jack.
“It’s because of (Wilk’s) compassion and almost disbelief and horror (about the disease) that this (push for a national awareness day) happened,’’ she said. “If it weren’t for these people, like Wilk and Knight … it inspired me to get a national day for DIPG.’’
Demeter’s goal, she said, is for no parent to ever have to go through the hopelessness that she and her husband Barry did when Jack was diagnosed.
“I can’t explain to you the place of darkness we experienced,’’ she said. “The doctors wouldn’t even look us in the eye. Everywhere I turned to ask, ‘Why isn’t there more research?’ I was told, ‘It’s one of those orphan diseases, there’s not enough money in research.’ ’’
Beyond the current push in Congress, the Jack’s Angels Foundation is also sponsoring a “Run The Rocks” fundraiser at Vasquez Rocks County Park on April 30.
For more information on the disease and the fundraiser, go to https://jacksangelsfoundation.com.