Parents open up about losing 9-month-old daughter to rare brain cancer

By JOANNE ROSA, ABC News

(NEW YORK) — Journalists Andrew Kaczynski and Rachel Ensign endured a loss that no parent should ever have to on Christmas Eve when their 9-month-old daughter Francesca died of complications from a rare pediatric brain cancer.

Prior to being diagnosed with Atypical Teratoid Rhabdoid Tumor, Ensign told ABC’s The View Tuesday that their daughter, lovingly called “Beans,” was a “very healthy, happy, lively baby” until she began uncontrollably vomiting one night. A pediatric urgent care identified her symptoms as nothing more than a stomach bug, but parental instincts told Kaczynski and Ensign it “felt like it was more” than a stomach bug.

When they took Francesca to the emergency room, doctors suspected it could be a brain tumor causing her symptoms.

“It was just the most horribly devastating moment of our lives,” Ensign said.

Kaczynski recalled the moment he and his wife received the call confirming the official diagnosis of Francesca’s rare and aggressive rhabdoid brain tumor.

“I was crying, holding Francesca and saying I’m sorry. I’m so sorry. I actually threw up and Rachel had to take the call,” he said.

Days later on Sept. 12, 2020 he took to Twitter in search of advice.

“Our six month old daughter Francesca was diagnosed with an extremely rare and very aggressive rhabdoid brain tumor this week,” Kaczynski tweeted. “We’re looking at any and all treatments right now, including experimental. Please keep my family in your thoughts and prayers.”

Kaczynski told The View that when he first tweeted about his daughter’s diagnosis they didn’t know anything about the rare cancer.

“We needed help. We didn’t know what to do,” he said.

While Kaczynski was vocal about Francesca’s battle with brain cancer, Ensign said she was uncharacteristically quiet about the diagnosis.

“I’m generally actually the much more outgoing one,” Ensign said. “When this happened, Andy really wanted to share and talk to the world and my instinct was just to not even talk to anyone, not even my own mother about this and what was going on.”

“It was so devastating that I think I really shut down in a lot of ways just to try to focus on Francesca and getting through it,” she continued. “Once I saw the incredible outpouring of love and support from the world, that Andy sharing brought, it gave me so much comfort.”

After months of chemotherapy treatments, surgery and spending her last few days in ICU on life support, 9-month-old Francesca succumbed to complications from her cancer on Dec. 24, 2020 in the arms of her mother and father. Francesca would have celebrated her first birthday on Thursday, March 11.

“The one thing that Rachel and I have said about that day is our plan is to have no plan,” Kaczynski said of his daughter’s upcoming birthday. “We’re just, just gonna let that day hit us and figure out what we want to do.”

“She got her first tooth when she was in the ICU and she smiled and played with that Elmo balloon and laughed and giggled,” he continued. “There were some really good times even through the horribleness of the treatment.”

According to a September 2016 data brief from the U.S. Department of Health and Human Services, brain cancer replaced leukemia as the most common cancer causing death among children and adolescents aged 1–19 during the years of 1999-2014.

Since Francesca’s passing, the parents have devoted their spare time to learning more about pediatric brain cancers and bringing awareness to the lack of research.

“The big picture is that pharmaceutical companies will never develop a drug specifically for pediatric brain cancer, they never have and these diseases are thankfully so rare that there’s really no financial incentive to do so,” Ensign said adding that funding for research is largely dependent on the government and private charities.

“We’ve been devoting our energy to raising awareness about the fact that kids do get cancer,” she continued. “This is a horrible reality that is way too many people’s lives right now.”

In Kaczynski and Ensign’s efforts, they’ve raised more than $575,000 for ATRT research at Dana Farber Cancer Institute where Francesca was treated.

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