BOSTON (CBS) – In the throes of their daughter’s battle with a rapidly growing brain cancer, Andrew Kaczynski and Rachel Ensign could not have imagined the legacy Francesca would leave behind. They planned to save her – to find the best doctors to treat her atypical teratoid rhabdoid tumor (ATRT). They say they found those doctors in Boston. “I would never change 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 care she received from the amazing oncologists. But the people and the community and how welcome and loved we felt.” That love was balm during the three months that Francesca was in the hospital.
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 cuddle. They nicknamed her “Bean” because of her appearance – in utero – on an ultrasound and it stuck. She was six months old when she became ill. ‘She started vomiting one night,’ Rachel explained. ‘Of course it’s usually not serious when your child vomits. But it is a common symptom in brain tumors. We took her to the pediatric ward. They said it was a stomach flu. But it seemed more than that. So we took her to the emergency room and we couldn’t imagine what they were going to tell us.”
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Francesca’s tumor blocked the fluid in her head and required emergency surgery. “It could have killed her,” Andrew recalled, “we’re very lucky it didn’t.”
As reporters (Rachel for the Wall Street Journal, Andrew with CNN), the pair delved into what Andrew calls “the worst reporting project ever,” to learn more about ATRT and find the specialists who would treat Francesca’s cancer. Within days, they chose Dana Farber Cancer Institute. The collaboration between the hospital and Boston Children’s Hospital would give Francesca the best chance of survival. They packed up their lives in New York and headed for Boston.
Francesca has had five surgeries in her short life. Andrew wrote down their story in Twitter posts. Hundreds of thousands of followers read their story, captivated by the beautiful baby who – always – seemed to smile despite grueling treatment. Dana Farber’s team 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 that reinforced their belief that Francesca received the best possible care.
They found comfort in that relationship and support from 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 row against the Red Sox. Andrew remembered how nice the people were, especially when they heard about Francesca’s diagnosis. “The sense of community in Boston and the way people give back to kids with cancer and the way the Red Sox – the way everyone here supports that – there’s such a sense of community here…”
Their introduction to the Pan Mass Challenge community came from a total stranger touched by their story. Winter Cycle rider Danielle Pourbaix of Walpole followed Andrew’s Twitter feed. She had already signed up for the Fenway ride and wanted to know how Rachel and Andrew would feel if she rode in Francesca’s honour. “I made an email, sent it and said, ‘Hey, you don’t know me, but I’d love to do this.’ They got back to me pretty quickly and said ‘Of course.’ Frankly, I thought that was it.”
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Weeks later, on Christmas Eve, Francesca Kaczynski died of an infection. She was nine months old.
“I felt so terrible for them,” Danielle said. “Such a sad day for so many people.” (During her interview with Lisa Hughes of WBZ at the Kraft Center in Dana Farber, Danielle donated platelets for patients undergoing chemotherapy and/or radiation.)
Rachel and Andrew referred people – wanting to honor Francesca’s life – to Danielle’s fundraising page. Her Winter Cycle team took the name TEAM BEANS. The donations started pouring in. Right now, the team is approaching a million dollars in fundraising. For perspective, the 2020 winter cycle has raised a total of $820,000.
Rachel described it as a “wonderful connection that shows the kindness of strangers.” They hope those donations can play a role in addressing a shocking reality. Andrew explained, “I’ve learned that there has never been a drug developed just for brain tumors in babies.” He also learned that pediatric oncologists, like Francesca’s doctor, have to fight for access to drugs, even to do clinical trials. “That’s when I discovered how little money there is for the doctors who are trying to do research to save these children,” 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 laboratory research. “It’s going to make a difference,” Andrew said proudly, adding, “Why are there brain cancers for children that are 100% fatal?! All this research is going to make a difference.”
When Danielle and TEAM BEANS take to the field at Fenway Park for the Winter Cycle on Sunday, June 6 (postponed from January due to the pandemic), they will be thinking of Francesca. Danielle’s Peloton bike carries a smiling Elmo sticker that, she says, reminds her of the girl who inspired her to ride. It’s the kind of support, to this day, that makes Rachel appreciate how much people care about her. “To think that she – and that we can – and all the wonderful strangers who have donated – could improve the situation for children with brain cancer. That would be the most incredible legacy.”
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For more information or to donate, visit PMC.org.