From diagnosis to discovery: One family’s journey in pediatric oncology
The Janower family's experience with childhood cancer fuels research and hope at Dana-Farber, inspiring change through the Pan-Mass Challenge.
In the world of childhood cancer, the journey from diagnosis to treatment can be a daunting one. For the Janower family, this journey began when their daughter, Samantha, was just 3 years old. It was a casual conversation with their babysitter that led to a life-changing discovery.
“She told my mom ‘I noticed Sammi’s not really using the right side of her body at all,’” says Samantha, now 23 years old and a former patient in Dana-Farber’s Jimmy Fund Clinic.
Quickly thereafter, Samantha was diagnosed with a juvenile parasitic astrocytoma, the most common form of pediatric brain tumor. Her father, Institute Trustee Andrew Janower, reflects on that moment: “One of her arms was significantly smaller than the other and had atrophied. It was a scary moment when we knew something was wrong.”
Despite the high survival rate associated with this type of tumor, the quality of life for survivors often remains low due to limited treatment options. Faced with this challenge, the Janower family decided to take action. “We could raise money for research,” Andrew realized, “and what we wanted to do was something that the whole family could be involved with.”
This led them to the Pan-Mass Challenge (PMC), a cycling event that raises funds for cancer research. Samantha, despite her physical challenges, joined her father on a tandem bike, becoming the youngest participant to complete the 160-mile ride. “Samantha was not physically able to ride it on her own, so we did it together,” Andrew recalls. “She was my social media director. She was my D.J. She was our photographer. Occasionally, she pedaled.”
Their efforts, along with those of other families and the broader community, have been instrumental in funding research at Dana-Farber. This collective philanthropy has led to the development and recent FDA approval of tovorafenib (Ojemda), a drug used specifically for pediatric low-grade glioma. Dana-Farber played a fundamental role in developing this drug, and had it been available when Samantha was a child, it could have been a viable treatment option for her. “These families raised money that led to research, which led to a drug getting FDA approved,” Pratiti “Mimi” Bandopadhayay, MBBS, PhD, a pediatric oncologist at Dana-Farber, shares with pride. “Now, children all over the world are benefiting from that.”
‘So, Samantha, she’s 23. But every year is a human year,” Andrew says. “So how do you accelerate drug development? You have to find ways to compress time frames, from the time the money is raised to the time it’s invested with human beings and resources in the lab.” The journey from lab discovery to FDA approval was a long one, underscoring the importance of sustained funding and community support. “It takes a village,” Bandopadhayay emphasizes, “and it takes every discipline, from doctors and scientists to the general community that raises the funds.”
But Bandopadhayay has an optimistic view of the future. “What really excites me is that there’s many more of these drugs in the pipeline, that the rate at which we’re making discoveries right now is exponential,” she says. “We still haven’t gotten there yet, but I am sure we’re going to get there, and I know that we’re not going to stop until we do.”
Today, Samantha embodies the spirit of resilience. “Defying cancer is finding your inner strength,” she says. “Not letting the cancer define you, but instead forging your own path.”
The 2024 Pan-Mass Challenge took place August 2-3, with routes ranging from 25 to 211 miles. The PMC has raised $1 billion for Dana-Farber and the Jimmy Fund since 1980.
The Jimmy Fund, established in Boston in 1948, is comprised of community-based fundraising events and other programs that, solely and directly, benefit Dana-Farber Cancer Institute’s lifesaving mission to provide compassionate patient care and groundbreaking cancer research for children and adults. The Jimmy Fund is an official charity of the Boston Red Sox, the Massachusetts Chiefs of Police Association, the Pan-Mass Challenge, and the Variety Children’s Charity of New England. Since 1948, the generosity of millions of people has helped the Jimmy Fund save countless lives and reduce the burden of cancer for patients and families worldwide. Follow the Jimmy Fund on Facebook, X, and Instagram: @TheJimmyFund.
