Parents of pediatric cancer patients running to defy cancer with Team Beans
Team Beans was established in 2020, when Andrew Kaczynski and Rachel Ensign’s 6-month-old daughter, Francesca, was diagnosed with an atypical teratoid rhabdoid tumor (ATRT), one of the most malignant and aggressive brain tumors that affect infants. Both reporters in New York City, Andrew and Rachel decided to travel to Dana-Farber Cancer Institute in Boston for Francesca’s treatment. Francesca passed away in December 2020, but her family, friends, and community joined together to create a powerful movement to honor her legacy—ultimately leading to incredible financial support for pediatric brain tumor research at Dana-Farber.
The Infant Brain Tumor Program, which Team Beans’ funding helped to launch, is led by Susan Chi, MD, who was Francesca’s neuro-oncologist. “We want to support research that fundamentally changes the treatment options and improves survival rates for pediatric brain tumor patients and their families,” shares Rachel. “Right now, families like ours have poor treatment options and little information on how likely those treatment options are to work. We have created awareness so that people now understand that the scales are cruelly stacked against our children and are motivated to help us change that.”
Team Beans has raised more than $2.2 million for Dana-Farber, including $1.1M through the Pan-Mass Challenge and more than $800,000 through the Boston Marathon®. Andrew ran the Boston Marathon to support Dana-Farber in October 2021 and is ready to head back to Hopkinton on April 18 to run again, a quick six months later. There will be nine runners joining Andrew to run the marathon with Team Beans, with the goal of defying pediatric brain cancer with every mile. Christen Gray and Tara Lewis were inspired to run with Team Beans after experiencing the same shock, disbelief, and pain that Rachel and Andrew felt when their children were also diagnosed with cancer.
Christen’s son, Finn Gray, was experiencing back pain and was sent for an MRI after seeming unsteady on his feet throughout his first few days of kindergarten. He was diagnosed with Ewing sarcoma after an emergency surgery that was called just one hour into his initial MRI. Finn started experiencing the same pain just a few days into his post-surgery recovery and upon return to the hospital, the Gray family learned that the tumor had grown back in the same place within seven days. Finn bravely underwent many surgeries, procedures, blood transfusions, chemotherapy infusions, and protocols, but passed away in January 2020 at age 6.
Christen was inspired to run with Team Beans to show her gratitude for Steven DuBois, MD, who led Finn’s care team during his treatments in Boston. “The Dana-Farber team only knew us for a short time but did everything they could for Finn and our family. I have always wanted to find a way to give back,” shares Christen. Christen is aware that her efforts won’t change her own family’s outcome but is motivated to do everything she can to help create less toxic treatment options, improved survival rates, and ultimately cures for the next family that hears “Your child has cancer.” Though the Gray family has experienced the unimaginable through the loss of Finn, they fondly recall the support and care that they received at Dana-Farber through this emotional and difficult time. “Even from afar, we will forever be supporters of Dana-Farber,” remarks Christen.
Tara’s son Emmett was diagnosed in September 2018 at age 3 with a dysembryplastic neuroepithelial tumor (DNET), after a seizure led the Lewis Family to seek medical attention. Eighty-five percent of the tumor was successfully removed from Emmett’s first brain surgery, but the family learned in October that the remaining portion was growing uncharacteristically fast. The Lewis Family was again faced with many appointments and a difficult decision to be made for their son. “As a parent, I can’t stress how hard it is to make these decisions and weigh the risks and rewards,” shares Tara. “There are many different possible approaches, with different potential outcomes. We opted not to do chemo and attempt a full resection, with one of the biggest risks being complete loss of vision.” Emmett underwent his second brain surgery in December 2021, where his team was able to complete a total gross resection, while maintaining his full vision.
The Lewises’ journey with Emmett has inspired Tara to run a marathon in all 50 states to raise awareness for pediatric cancer. She has completed four marathons to date and considers herself lucky to be running the historic Boston Marathon with Team Beans this April. Tara is frustrated that pediatric cancer is underfunded and has taken the lives of so many beautiful children, yet equally motivated and inspired that Dana-Farber has the talent to find a breakthrough that could lead to cures for various types of brain cancers with the funds from supporters like Team Beans. She also recognizes that there are near-term areas to be addressed for pediatric oncology, such as finding alternatives to the toxic chemotherapies and gadolinium-based contrast agents used for MRIs, which are often harmful to children’s systems; and further researching cells and how cancer starts, spreads, and grows—especially in the brain. “This tumor has taught us how to advocate and endure challenges,” shares Tara. “We will always see the world from a slightly different angle. Emmett’s tumor represents an amazing community that came together and rallied for him. It represents the hands of a skilled medical team who saved him, but also the delicateness and fragility of life, which can turn upside down after one visit to the hospital and an MRI.”
Support patients like Francesca, Finn, and Emmett by supporting a Dana-Farber runner, participating in the PMC, or making a gift to support The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.