He Lost His Newborn to Childhood Cancer but for Andrew Kaczynski, the Fight Has Only Begun
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When their six-month-old daughter Francesca was diagnosed with a rare form of brain cancer over Labor Day weekend last year, Andrew Kaczynski and his wife Rachel Ensign used their journalistic acumen (he’s a reporter at CNN, she at the Wall Street Journal) to gather as much information as possible about her disease. “It was literally like the worst reporting project ever,” Kaczynski says. They discovered that there were only four oncologists in the country who specialized in Francesca’s type of cancer, an aggressive tumor known as ATRT, and within a week of the pathology report they packed up and moved from Brooklyn to Boston, where their baby girl could begin treatment at the Dana-Farber Cancer Institute. After a three-month battle, Francesca died on Christmas Eve. She was just nine months old.
“My mission in life has changed,” Kaczynski says. “When something traumatic like this happens to you, it makes you realign your priorities.” While Francesca was in the hospital, he came up with a project called Team Beans (“Beans” was her nickname) and made T-shirts for friends and family. It caught the attention of a woman who wanted to ride in Dana-Farber’s PMC Winter Cycle charity event in Francesca’s name. After their daughter’s death, Kaczynski and Ensign requested donations to the PMC challenge in lieu of gifts. “It went absolutely insane,” he says. The rider, Danielle Pourbaix, raised more than $610,000, all of which went toward ATRT research at the hospital (the cycling event, postponed due to the pandemic, took place on June 6).
What started as a simple way to show support for baby Francesca has turned into a burgeoning grassroots movement. In March, to commemorate what would have been her first birthday, Kaczynski, with the help of his CNN colleagues, made Team Beans hats to sell via the network’s online store. They have so far raised $130,000. In May, the Team Beans Infant Brain Tumor Fund was created to benefit Dana-Farber's new Infant Brain Tumor Center—it has already raised more than $150,000.
And every dollar counts. Because of the relative rarity of pediatric brain cancer—there are 5,000 cases a year, as opposed to breast cancer, which affects more than 200,000—research and clinical trials in the field are vastly underfunded. Plus, pharmaceutical companies have little incentive to invest in developing drugs for treatment. Francesca’s parents were shocked to learn that there has never been a drug developed for pediatric brain cancer, ever. Their baby was receiving decades-old chemo treatments that had been developed for adult cancers.
It’s not just about the money. With Team Beans, Kaczynski is committed to raising awareness and informing legislation. “There are so many issues for childhood cancer,” he says. First, it’s getting a law passed called the Gabriella Miller Kids First Research Act 2.0, which would redirect fines collected from pharmaceutical, cosmetic, medical device, and supplement companies that break the law to fund childhood cancer research at the National Institutes of Health.
Then it’s persuading landmarks to “go gold” for Childhood Cancer Awareness Month, which is September. He has already gotten Niagara Falls, Toronto’s CN Tower, and New York’s World Trade Center to honor the cause by changing their lights. At press time he was campaigning for the Empire State Building to get on board—activists have been trying to convince the skyscraper since 2014. “There are kids with cancer whose hospital rooms face the Empire State Building,” Kaczynski says. “It would mean so much to them just to see that people know they exist.”
This story appears in the Summer 2021 issue of Town & Country.
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