Four-year-old Izzy has an uphill, against all odds fight ahead of her against a deadly brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). This infiltrating, aggressive form of cancer has thrown her family into a heartbreaking race against time. Along with her parents, they are aggressively seeking experimental treatments to save her life. As her eyes crossed, Izzy’s situation forced her family to find proper medical care, which unfortunately resulted in the devastating diagnosis.
As the oldest of three siblings, Izzy’s brief life is marked by anxiety. Her mother, Jenn Janosko, has been tirelessly advocating for Izzy to gain access to clinical trials that could provide potential treatments. In a world that sometimes seems overrun with hate, the Janosko family has transformed into a beacon of hope and perseverance during difficult times.
Izzy’s neurosurgeon, Dr. Mark Souweidane from Memorial Sloan Kettering Cancer Center, has developed an innovative clinical trial that utilizes tiny catheters to deliver therapeutic agents directly into Izzy’s tumor. Despite these advancements, the family faces tremendous obstacles in securing a spot in a clinical trial at Stanford Medicine in California.
The Struggles of Finding Treatment
Though Izzy’s family have weathered the emotional gale of extensive medical trauma, their story paints a vivid picture of their journey through the medical system. Jenn is still in constant communication with each medical center on our journey. Now she’s fighting tooth and nail for CAR T-cell therapy to be used to treat DIPG.
“I want to pick up the phone and bug them every day,” Jenn confesses. I’m always afraid of being a nuisance to clinic staff, but time is not on Izzy’s side.
The urgency of their situation is palpable. Jenn knows that without access to a promising clinical trial, Izzy doesn’t have long left. “If we don’t find a clinical trial soon, she will be dead within a year,” she shares, shedding light on the dire reality that many families face when dealing with pediatric cancer.
Izzy’s treatment journey started on a Tuesday, but the emotional burden on her family has been very heavy. “Every one of those kids is one of my patients who has passed away,” says Dr. Eugene Hwang, reflecting on the gravity of pediatric brain cancer and its devastating consequences. He understands the barriers families experience in their greatest time of need and recognizes their plight.
“It’s such a major task to walk these families through their darkest times.” – Dr. Eugene Hwang
The Role of Research and Advocacy
The search for promising treatments for DIPG has been increasingly plagued by the environment of cancer research funding and priorities. Unfortunately, Project 2025 is exerting pressure for damaging reforms at the National Institutes of Health (NIH). Their aim is to increase the amount of research funding going to pediatric brain cancer.
“The NIH monopoly on directing research should be broken,” advocates Project 2025, emphasizing the need for diverse approaches to combatting this disease. The Department of Health and Human Services (HHS) continues to provide families with confidence that ending childhood cancer is a fundamental priority.
“Ending the scourge of cancer is one of our highest priorities, as reflected in the National Cancer Institute’s budget of more than $7 billion – the largest of any NIH institute or center.” – HHS
Dr. Anthony Letai highlights the importance of pediatric brain cancer research, asserting that it remains a focus for medical innovation and discovery.
“Pediatric brain cancer research remains a high priority.” – Dr. Anthony Letai
As the Janosko family’s fight demonstrates, much work and advocacy and funding remains in the pediatric oncology space. So far, they’ve reached out to almost a dozen academic medical centers around the country. They’re looking for innovative trials that might provide Izzy with a competitive edge.
A Message of Hope from Izzy
Inspite of all her challenges, Izzy is a source of light and love, bringing her family together in the most positive way. A recent video of her surfaced online where she cheerfully stated, “Sorry I was grumpy. It was nice to meet you,” a testament to her resilience and spirit even in trying times.
Her golden ringlets are bound with a scarlet ribbon. They represent her childhood and purity that she brings with herself as she charges against a disadvantageous adversary. The Janosko family is eager to share their story in order to raise awareness about DIPG. They hope others will be encouraged to invest in promising research programs that look for real treatments.
“Giving in is not in our vocabulary,” says Nikki Owens, another advocate for pediatric cancer research who has followed similar struggles. Her resolve resonates with families like the Janoskos who refuse to succumb to despair.