BOSTON (CBS) - In the throes of their daughter's battle with a fast-growing brain cancer, Andrew Kaczynski and Rachel Ensign could not have imagined the legacy Francesca might leave. They were intent on saving her—finding the best doctors to treat her atypical teratoid rhabdoid tumor (ATRT). They say they found those doctors in Boston. "I would never ever change a single thing about the decision we made to come here because of how well she was treated," Andrew explained to WBZ's Lisa Hughes. "Not just the quality of the care she got from the amazing oncologists. But the people and the community and how welcomed and loved we felt." That love was a balm during the three months Francesca was hospitalized.
Their cancer journey began in the fall of 2020 when Francesca was six months-old. They describe her as a happy, healthy baby who loved to snuggle. They nicknamed her "Bean" for her appearance—in utero--on an ultrasound and it stuck. She was six months old when she got sick. "She started vomiting one night, "Rachel explained, "Obviously most of the time when your child vomits, it's not serious. But it's a common symptom in brain tumors. We took her to pediatric urgent care. They said it was a stomach bug. But it seemed like more than that. So we took her to the E-R and we couldn't' have imagined what they were going to tell us."
Francesca's tumor was blocking the fluid in her head and required emergency surgery. "It could have killer her," Andrew remembered, "We are very fortunate that it didn't."
As reporters (Rachel for the Wall Street Journal, Andrew with CNN) the couple dove into, what Andrew calls "the worst reporting project ever" to learn about ATRT and find the specialists who would treat Francesca's cancer. Within days, they chose Dana Farber Cancer Institute. The hospital's partnership with Boston Children's Hospital, they believed, would give Francesca the best odds for survival. They packed up their lives in New York and headed for Boston.
Francesca had five surgeries in her short life. Andrew chronicled their story in Twitter posts. Hundreds of thousands of followers read their story, captivated by the beautiful baby who seemed—always—to be smiling despite a grueling course of treatment. The team at Dana Farber and Boston Children's Hospital put the couple at ease from the moment they arrived. They describe the relationship and respect between the doctors, nurses and technicians are one that reinforced their belief that Francesca was getting the best care possible.
They found comfort in that relationship and support in the people of Boston. "We're New Yorkers," Rachel said with a smile, "My only experience in the city of Boston is because we're Yankees fans." They now say it is impossible to root against the Red Sox. Andrew recalled how kind people were, particularly upon learning about Francesca's diagnosis. "The sense of community in Boston and the way people give back for kids with cancer and the way the Red Sox—the way everybody here supports that—there's such a sense of community here…"
Their introduction to the Pan Mass Challenge community came from a total stranger who was touched by their story. Winter Cycle rider Danielle Pourbaix of Walpole was following Andrew's twitter feed. She was already signed up for the Fenway ride and wanted to know how Rachel and Andrew would feel if she rode in Francesca's honor. "I crafted an e-mail, sent it off and said, 'Hey, you don't know me but I'd love to do this.' They got back to me pretty quickly and said 'Sure.' Honestly, I thought that was it."
Weeks later, on Christmas Eve, Francesca Kaczynski died of an infection. She was nine months-old.
"I felt so horrible for them," Danielle said. "Such a sad day for so many people." (During her interview with WBZ's Lisa Hughes at the Kraft Center at Dana Farber, Danielle was donating platelets for patients undergoing chemotherapy and/or radiation.)
Rachel and Andrew directed people--who wanted to honor Francesca's life--to Danielle's fundraising page. Her Winter Cycle team adopted the name TEAM BEANS. Donations began pouring in. At this writing, the team is closing in on a million dollars in fundraising. For perspective, the 2020 Winter Cycle raised a total of $820,000.
Rachel described it as a "wonderful connection that shows the kindness of strangers." They hope that those donations can play a role in addressing a shocking reality. Andrew explained, "I learned that there has never been a drug developed just for infant brain tumors." He also learned that pediatric oncologists, like Francesca's doctor, have to fight for access to drugs—even to do clinical trials. "Then I found out how little money is out there for the doctors who are trying to do research to save these kids," he said. Their goal is to change that.
In late May, they announced the creation of the Team Beans Infant Brain Tumor Fund. It will benefit a new program at Dana Farber that brings together pediatric oncologists for clinical trials and lab research. "It is going to make a difference," Andrew said proudly and added, "Why are there brain cancers for children that are 100% fatal?! All of this research is going to make a difference."
When Danielle and TEAM BEANS take the field at Fenway Park on Sunday, June 6 for the Winter Cycle (delayed from January because of the pandemic) they will be thinking of Francesca. Danielle's Peloton bike bears a smiling Elmo sticker that, she says, reminds her of the baby girl who inspires her ride. It is the kind of support, to this day, that makes Rachel appreciate how many people care. "To think that she could—and that we could—and all the amazing strangers who donated—could improve the situation for children with brain cancer. That would be the most incredible legacy."
For more information or to donate go to PMC.org.
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