The battle against pediatric brain cancer is a race against time, and every child's life hangs in the balance. But when politics and budget cuts interfere, the consequences can be devastating. This is the story of Jenn Janosko, a pediatric nurse who finds herself on the other side of the hospital bed as her daughter, Izzy, is diagnosed with a deadly brain tumor.
For seven years, Janosko worked on the ninth floor of New York's Memorial Sloan Kettering hospital, caring for children with cancer. It's a place of both joy and sorrow, where colorful artwork adorns the walls, and children with IV poles and wagons navigate the curved floor. The playroom hosts themed events to bring some fun to a place filled with illness and death.
But when Janosko's own daughter is diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare and almost universally fatal cancer, the reality of the situation hits home. DIPG arises in the brainstem, making surgery nearly impossible, and the median survival rate is a mere 11 months.
Janosko's knowledge as a nurse becomes a double-edged sword. She knows the standard treatment of radiation and chemotherapy is ultimately ineffective, and her only hope is to find a clinical trial that might offer Izzy a chance at a few more months or years of life, or even a glimpse of a cure.
The search for a clinical trial becomes a desperate quest, as Janosko discovers that many trials have long waiting lists or are not suitable for Izzy's condition. The Trump administration's dismantling of federal agencies, including cuts to cancer research funding, has led to the suspension or closure of clinical trials, leaving families like Janosko's with limited options.
The paradox is striking. While Trump promises to "Make America Great Again," his actions undermine an area where America has been a global leader in the search for a cure. Over the past 15 years, US medical centers have made significant breakthroughs in understanding child brain tumors, and American scientists have collaborated with colleagues worldwide to expand knowledge of the mutations that cause tumor growth.
These advances have led to new treatments targeting cancer's weak spots at a cellular level, offering a glimmer of hope. However, pediatric cancers, including brain tumors, receive only a small fraction of federal funding for cancer research, despite being the leading cause of death by disease for children in the US.
The impact of these cuts is felt by families like Janosko's, who are left with limited options and a sense of betrayal. The administration's approach to scientific research, influenced by the right-wing Heritage Foundation's Project 2025, has led to the dismantling of the National Institutes of Health (NIH) as the world's largest funder of medical research.
The story takes a turn when Elon Musk, the tech billionaire, intervenes before Trump's inauguration, using his platform to spread falsehoods and help sink a bipartisan spending bill in Congress. This results in the scrapping of provisions that would have boosted funding for child cancer research, including a voucher system for experimental trials.
The White House's funding freeze on federal agencies, including the NIH, cancels hundreds of medical grants and disrupts clinical trials for various conditions, affecting thousands of patients. The administration's shifting of goalposts on federal research grants further exacerbates the situation, reducing the approval rate from 9% to 4%.
The decision to withdraw support from North America's oldest and most productive pediatric brain cancer research network, the Pediatric Brain Tumor Consortium (PBTC), brings many promising clinical trials to a halt. Families like Izzy's are left with a bitter pill to swallow, as the experiments they had pinned their hopes on are closed to new patients.
The impact of these decisions is felt by families like the Janoskos, who live in an idyllic lakeside house outside New York City. Janosko's tears flow as she struggles to comprehend how her own daughter could be struck by the disease she has spent years caring for. Her anxiety about her child's health had led her to seek therapy even before Izzy's diagnosis.
The story introduces Dr. Mark Souweidane, Izzy's neurosurgeon, who designed a clinical trial using tiny catheters to deliver high concentrations of therapeutic agents directly into the brain tissue. Early tests have shown promising results, with several children living longer than three years and three patients becoming long-term survivors.
Janosko's hopes for Izzy to join this trial are dashed when the Trump administration closes the consortium, forcing Souweidane to call off the launch. Another potential treatment, Car T-cell therapy, which has shown success in childhood leukemia, is also out of reach due to the consortium's closure.
The narrative shifts to Dr. Eugene Hwang, a pediatric neuro-oncologist at George Washington University cancer center, who has devoted 15 years to caring for children with brain tumors. Hwang's research, which involves an mRNA vaccine similar to the Covid vaccine, has shown exciting results in mice and adults. However, the reduction in the qualifying band for federal grants from 9% to 4% has set back his hopes and ambitions.
The impact of these cuts is felt across the country, with research laboratories facing hiring freezes and federal funding cuts eating into their ability to answer critical questions about clinical trials. Researchers now contort their language to avoid antagonizing the health secretary, Robert F. Kennedy Jr., over his hostility to childhood vaccinations.
The story concludes with a ray of hope as Janosko receives news that Stanford has offered Izzy a place on its Car T-cell clinical trial. Despite the potential risks and side effects, Janosko is both terrified and overjoyed. The treatment has shown success in some patients, and Janosko and Izzy sign the consent forms, beginning the journey towards a possible cure.
But the question remains: will politics continue to hinder the search for a cure, or will the voices and passion of families like Janosko's prevail in the fight against pediatric brain cancer?
