A mother's worst nightmare: the fight for her child's life against brain cancer.
In a heart-wrenching story, Jenn Janosko, a former pediatric cancer nurse, finds herself on the other side of the battle, with her own daughter, Izzy, diagnosed with the deadly diffuse intrinsic pontine glioma (DIPG). This rare and aggressive cancer, with no known cure, has a devastating impact on children's lives.
The walls of the pediatric ward, once filled with laughter and hope, now echo with a different reality. Janosko, intimately familiar with the sights and sounds of the ward, returns with Izzy, her four-year-old daughter, to face a battle she knows all too well.
DIPG, a cancer that affects the brainstem, progresses rapidly, leaving little time for treatment. The standard radiation and chemotherapy often fall short, offering little hope for a cure. Janosko's only glimmer of hope lies in finding a clinical trial that could extend Izzy's life, even if just for a few more months.
But here's where it gets controversial...
Politics steps in, and the Trump administration's policies on cancer research funding create an unexpected hurdle. The administration's dismantling of federal agencies, including cuts to the National Institutes of Health (NIH), has had a profound impact on cancer research and clinical trials, especially for children with terminal illnesses.
The consequences are felt by families like Janosko's. With limited access to clinical trials and a lack of funding, the search for a cure becomes an uphill battle.
And this is the part most people miss...
The paradox of Trump's 'Make America Great Again' campaign is that it undermines an area where America has been a global leader: the search for a cure for brain cancer. Over the years, US medical centers have made significant breakthroughs in understanding child brain tumors, and American scientists have been at the forefront of this research.
The advancements in understanding the genetic makeup of these tumors have led to new treatments targeting the cancers' weak spots. While these treatments are not yet a cure, they offer a glimmer of hope and a path forward. A small but significant number of children with DIPG are still alive years into treatment, thanks to these innovative approaches.
However, the lack of funding and support from the federal government, even during 'normal' administrations, has created a challenging environment for pediatric cancer research. Child cancers are now the leading cause of death by disease for children in the US, with brain tumors being the most common. Yet, they receive only a fraction (4-8%) of the federal funding set aside for cancer research.
Donald Trump promised to 'defeat childhood cancer once and for all,' but on the frontlines, scientists and families are witnessing the opposite. The blueprint for this approach was laid out by Project 2025, a report compiled by the right-wing Heritage Foundation, which called for the dismantling of the NIH.
Trump appointed Russell Vought, the architect of Project 2025, as the government's top budget official. Vought spearheaded the assault on the NIH, blocking billions of dollars in cancer research funding and imposing a hiring freeze on researchers.
Even before Trump's inauguration, Elon Musk's intervention had a profound impact on children with brain tumors. Musk's actions, including his use of his platform, X, to spread falsehoods and sink a bipartisan spending bill, resulted in the scrapping of provisions that would have boosted funding for child cancer research.
The Trump administration's funding freeze on federal agencies, including the NIH, disrupted clinical trials for various conditions, affecting thousands of patients. The administration also changed the criteria for federal research grants, reducing the approval rate from the top 9% of peer-reviewed applications to just 4%.
In August, the Trump administration announced its withdrawal of support from the Pediatric Brain Tumor Consortium (PBTC), the oldest and most productive pediatric brain cancer research network in North America. This decision brought many promising clinical trials to a halt, leaving families like Janosko's with a bitter pill to swallow.
The Janoskos, living in their idyllic lakeside home, face a reality that contradicts the idealized vision of American family life. Janosko, amidst tears, struggles to make sense of her daughter's diagnosis. The anxiety she carried as a pediatric nurse has now become a personal battle.
Dr. Mark Souweidane, Izzy's neurosurgeon, had designed a promising clinical trial involving the insertion of tiny catheters directly into the brain tissue to deliver therapeutic agents to the tumor. Early tests showed promising results, with several children living longer than three years. However, the closure of the PBTC forced Souweidane to call off the launch of this expanded trial.
Another groundbreaking treatment, Car T-cell therapy, which involves training a patient's T-cells to recognize and attack cancer cells, also faced challenges. Janosko, who had nursed the first children receiving this therapy for leukemia, now finds every door closed for her daughter.
Professor Sarah Leary, who runs a similar program in Seattle, understands the emotional toll this takes on parents. She believes every child should have the option of participating in research, but the reality is often different.
Dr. Eugene Hwang, a pediatric neuro-oncologist, expresses concern about the future of science with the wind-down of the PBTC. He questions where and how transformative experiments will continue. Hwang's own research, involving an mRNA vaccine similar to the Covid vaccine, has shown promising results in destroying tumors in mice. However, with the reduced funding and talent flight, the pace of discovery slows.
Dr. Souweidane's groundbreaking catheter delivery trial, which Janosko hoped Izzy could join, is one of seven cutting-edge clinical trials closed to new patients. Souweidane is baffled by the countercurrent against the march of science in the US.
The consequences of Trump's regime are felt not only in the research world but also in the language researchers now use to avoid antagonizing the health secretary, Robert F Kennedy Jr, over his stance on childhood vaccinations. The contrast between Trump's pledge to defeat childhood cancer and the reality on the ground is stark.
For parents like Nikki Owens, whose daughter, Kinlee, was diagnosed with a brain tumor, the trauma is compounded by the multiple knockbacks due to funding cuts. Owens, a nurse herself, had never heard of DIPG before her daughter's diagnosis.
The story of Mike and Kate Henry, whose daughter, Blair, died from a rare brain tumor, highlights the transformative power of tragedy. The Henrys now devote their lives to finding a cure for pediatric brain tumors, driven by Blair's legacy.
Mike Henry, who used to work in public policy, reflects on how his perception of government and caring for one another has changed drastically since Blair's illness. He understands the fragility of life and the importance of empathy.
The Pediatric Brain Tumor Foundation, alongside other charitable groups formed by bereaved parents, is scrambling to fill the void left by Trump's cuts. While they cannot compete with federal funding, their voices and passion send a powerful message to politicians.
And in a ray of hope, Janosko receives news that Stanford has offered Izzy a place on their Car T-cell clinical trial. Despite the challenges and potential side effects, there is a chance, and that chance is worth fighting for.
