When Pleasanton resident Misha Mehta lost her son Neev to a rare and untreatable brain cancer two years ago, her whole life was uprooted.
"Losing a child to cancer completely destroys a family," she told the Weekly.
Mehta, who used to be a researcher at Roche Molecular Systems on Hacienda Drive in Pleasanton, said that Neev's death left her to the point where she couldn't go back to work because she couldn't find purpose in doing that type of day-to-day routine knowing that her son was gone.
That's why she has made it her mission to raise awareness for childhood cancer research.
Mehta attended two recent events at the Capitol Hill and the White House in Washington, D.C. -- one in April and one in May -- in the hopes that she can help other families not have to go through the pain of seeing their child die knowing there is no hope.
"Everything that I do now needs to have a purpose and a meaning behind it, and the only way I can do that is by raising awareness on advocacy," Mehta said. "The only way I can justify living here without my son is by making sure that his story is remembered, his name is remembered and no other kids or no other families have to go through what we went through."
In August 2020, Neev Kolte -- a 5-year-old Fairlands Elementary School student at the time -- first started showing signs that something was wrong. His father Sandeep Kolte previously told the Weekly that Neev's ability to walk slowly started deteriorating, which provoked his parents to take him to the hospital.
It was then that they found out Neev had what is known as diffuse intrinsic pontine glioma. DIPG is a rare terminal brain cancer that, according to the National Cancer Institute, produces fast-growing tumors that form within cells inside the stem of the brain. According to the institute's website, DIPG typically occurs in children and is a disease that is hard to treat.
Neev died from the cancer on Nov. 30, 2021.
"If you look at it ... the survival rate for that is 0% and it has been like that for some 65-plus years," Mehta said. "The only standard of care treatment that is offered is radiation and that is like just palliative at best, it just buys you a couple of months."
That's why Mehta took it upon herself to quit her job and advocate full time through organizations such as the American Cancer Society Cancer Action Network (ACS CAN), which sent her to Washington, D.C. on April 24 for the 12th annual Alliance for Childhood Cancer Action Days event.
The two-day event, which was organized by the Alliance for Childhood Cancer, brought in over 200 other cancer patients, survivors and family members from 34 states and from D.C. who spoke with lawmakers and asked them to allocate more funding toward childhood cancer research.
"Cancer is the leading disease-related cause of death among children and adolescents in the U.S." Chakoma Haidari, grassroots manager for ACS CAN in Northern California, told the Weekly in a statement.
"When survived, the effects of childhood cancer and its treatment can last a lifetime," Haidari added. "Advocates like Misha play an integral role in reminding members of Congress that they have the opportunity and duty to save lives from childhood cancer and help improve the quality of life of patients, survivors and their families."
According to Haidari and Mehta, one of the major requests that they urged lawmakers to consider was providing about $51 billion in funding for the National Institutes of Health and $9.988 billion for the National Cancer Institute, which are both significant funding increases.
They also asked to continue funding for the 2019 Childhood Cancer STAR Reauthorization Act, which Congress unanimously decided in 2022 to continue for another five years.
The STAR Act "expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences and enhances the quality of life for childhood cancer survivors," Haidari said.
"To continue this important work, advocates ask Congress to provide $30 million to fully fund the Childhood Cancer STAR Act for a sixth year and $50 million to fully fund the Childhood Cancer Data Initiative for a fifth year," Haidari stated.
Mehta had separately asked lawmakers during that time to consider two California-specific requests: for the state to recognize September as Childhood Cancer Awareness Month -- which is already federally recognized and is currently being introduced as a senate resolution -- and to list DIPG in the state's Cancer and Control Action Plan.
She said that by adding the rare cancer to the list, it would allow for more federal dollars to be allocated toward research and would bring DIPG into the state dialogue for what types of cancer to be addressed.
"We need to change that dialogue because there are kids that are dying of cancer," Mehta said. "In a year, there are 400 different kids that are diagnosed, and it's 100% terminal."
Mehta's advocacy work at the nation's capital didn't end after that April event. She returned to D.C. on May 25 to the White House, which hosted a Brain Cancers Forum focused on driving progress against Glioblastoma Multiforme -- another type of brain tumor -- and DIPG.
The forum was held in May in recognition of Brain Cancer Awareness Month and was put together through the White House Cancer Moonshot initiative, which brought in leaders from the brain cancer community to develop plans to address these types of untreatable cancers.
Cancer Moonshot is an effort that President Joe Biden reignited with the new goals of reducing the cancer death rate by half within 25 years and improving the lives of people with cancer and cancer survivors, according to the National Cancer Institute website.
The forum, which was led by the U.S. Office of Science and Technology, was meaningful to Mehta who said it was the first time DIPG was included in these national discussions to find ways to fight back against the diseases.
"We've not made any strides in treatment, or even like detection or prevention ... We don't even understand the basic biology of that cancer type," she said. "Just because it's such a small population size -- it's not like breast cancer or like prostate cancer -- industry folks are not really interested in putting in so much money in making therapeutic options or testing for existing small molecules that can actually help with treatments."
She said that at that forum, she and 80 other legislative delegates made up of parent advocates, researchers, industry partners and various health agencies, mainly advocated for more infrastructure to be built so that electronic health records regarding these types of cancer, which she said exist in silos, can used to analyze and find different treatment options.
But even after all that recent advocacy work in D.C., Mehta said she is far from done.
That's why she and her DIPG community established the DIPG-DMG Research Funding Alliance, where 65 nonprofit organizations work toward helping families through the use of a nurse navigator, which helps guide and educate parents whose children were diagnosed with DIPG.
The group also put together a national tumor board that, just like the navigator, is a free service where parents can easily get expert opinions from all across the United States.
She will also be attending the 2023 Brainstorm Summit, which is a program in D.C. that focuses on ending childhood brain cancer.
"As many people, as many families that we can get to advocate to government officials in terms of increased funding to finding cures for pediatric cancer, I think, is really important, because you never know when it's going to change your life," Mehta said.