By Jen DeGregorio
As the Director of Communications for the ChadTough Defeat DIPG Foundation, I talk frequently to parents whose lives have been shattered by pediatric cancer. Every single one of them can easily tell me about the last few normal moments before their lives were abruptly changed forever. For Andrew Kaczynski and his wife Rachel Ensign, it was this distinct feeling that life with their six-month-old baby, Francesca, lovingly known as Beans, was completely and utterly perfect.
There wasn’t a cloud in the sky this past Labor Day weekend, and the new family was taking advantage of the sunshine with a stroll through their quiet Brooklyn neighborhood. The COVID-19 virus was keeping New York tourists at bay, and while most of the world was struggling to adjust to the pandemic, Andrew remembers thinking, “My life couldn’t possibly be any better than it is right now.”
But just a few hours later, their usually happy and healthy baby girl began to vomit non-stop. After a visit to the urgent care, where the couple was told it was likely just a stomach bug, Rachel and Andrew felt in their gut that there was something much worse happening to their daughter. They took her to the ER, where they received the horrifying news that Francesca likely had a brain tumor.
Doctors confirmed that Francesca had an atypical teratoid rhabdoid tumor (ATRT), a rare and aggressive tumor that would almost certainly and quickly rob them of their child.
“That was the absolute worst moment of my life,” said Andrew. “I knew then that my wife and I were not the same people we were before. I knew, regardless of the outcome, that our lives would never be the same.”
As reporters, Andrew for CNN and Rachel for The Wall Street Journal, the two began what they describe as “the worst reporting project of our lives” and learned everything they possibly could about the horrifying disease afflicting their only child.
ATRT is rare, being found in less than 10% of children with brain tumors. This type of fast-growing cancer often occurs in children under the age of three, and the survival rate is very poor. For children Francesca’s age, it’s almost certainly a death sentence.
Through their research, the couple also discovered that brain cancer had become the number one cancer-related killer of children, surpassing leukemia because of advances in leukemia treatments. Rachel and Andrew were horrified to learn that there has been very little progress in developing effective treatments for pediatric brain cancer.
“The first real eye-opener for us was learning that all brain cancer–related drugs were designed for adults,” said Andrew. “There are no drugs specifically made for kids fighting the disease, and the funding structure leaves no incentive for drug companies to develop new drugs. And that’s just one of the problems in the world of pediatric cancer.”
Andrew and Rachel were frustrated to learn that the few dedicated oncologists tirelessly working to discover new treatments for ATRT are often roadblocked by funding challenges, and many times are denied access to drugs necessary to move forward with their research.
As disheartening as it was for the couple to accept the dismal odds for saving their child, they were still determined to give Francesca the best treatment possible. Andrew and Rachel decided to take their daughter to the Dana-Farber Cancer Institute at Boston Children’s Hospital, trusting her to the care of Dr. Susan Chi.
“We chose Boston for two very specific reasons,” said Andrew. “Most importantly, it was home to one of the only three experts on ATRT in the United States. Second — and this was everything — they allowed both me and Rachel to be with Francesca in the hospital.”
Due to the pandemic, hospitals around the world were instituting policies allowing only one parent to accompany a child during hospital visits or stays. “That would have been absolutely horrific,” said Andrew. “Life sucked. But we had so many more good days in the hospital with her because we were together as a family.”
Francesca underwent intense chemotherapy, six surgeries, and spent her last few days on life support before she passed away in her parents’ arms on Christmas Eve. She was just nine months old.
In the last excruciating month of Francesca’s treatment, it became clear to Andrew that he wanted to use his voice to advocate for pediatric cancer funding. Their daughter’s experience motivated both Andrew and Rachel to continue to do everything in their power to affect change for other families who may one day face their same fate.
Only 4% of the billions of dollars the government spends annually on cancer research is directed toward treating childhood cancer. Of those dollars, just a small fraction is utilized for targeted research related to pediatric brain cancer.
In fact, many pediatric brain cancer researchers depend on funds from private foundations like the ChadTough Defeat DIPG Foundation, which has committed more than $1 million in research to the Dana-Farber Cancer Institute, where Francesca was treated.
“Before Francesca got sick, I didn’t realize how the lack of funding was so hugely impacting advances in pediatric cancer treatments,” said Andrew. “I thought doctors had figured it out or had made much more progress than what I later learned. I want to make sure everyone knows the horrible reality that is impacting too many kids right now.”
In honor of their bold and curious baby girl whose generous smiles brought joy to unimaginably dark moments, Rachel and Andrew formed Team Beans, raising more than $800,000 to benefit pediatric oncology and ATRT research at the Dana-Farber Cancer Institute. The couple continues to advocate for legislation that would funnel money into pediatric cancer research.
“There’s not just one solution to this problem,” said Andrew. “You have to keep coming at it from all angles. I will fundraise, I will educate people on legislation that needs to get passed, and I will continue to raise awareness. I will just keep pushing.”
September 6, 2021, will mark one year since Francesca was diagnosed. September also happens to be Childhood Cancer Awareness Month, and both Rachel and Andrew wanted to do something bold in their advocacy efforts. They’re actively reaching out to popular landmarks and sights across the globe with a request to “light up gold” anytime throughout the month. Gold is the international color for pediatric cancer awareness. While the family’s request to the Empire State Building was denied, other places like the National Library of Kosovo quickly jumped on board. The Caesars Entertainment ownership group in Las Vegas has agreed to light both the Eiffel Tower replica at Paris Las Vegas Hotel and the High Roller Observation Wheel at The LINQ hotel in gold. The ChadTough Defeat DIPG Foundation is currently working to try to get the University of Michigan football stadium and the Detroit Tigers baseball field to light up as well.
Rachel and Andrew plan to spend the anniversary of the worst day of their lives visiting first Niagara Falls and then the CN Tower in Toronto, where both landmarks will also be lit in gold in honor of Francesca.
To learn more about the Team Beans childhood cancer advocacy efforts, visit https://www.facebook.com/TeamBeansBeatCancer.
In addition to serving The ChadTough Foundation as the Director of Communications, Jen DeGregorio manages PR/marketing and events for several non-profits across Washtenaw County. She began her career in newspapers in 1995 as a means to cover college expenses. After completing her degree at the University of Michigan-Dearborn in English, she continued to build a career in advertising with the Ann Arbor News.
She was one of the first hires at AnnArbor.com and became an integral part of the management team. In 2012, Jen decided to start her own businesses, with a focus on helping small businesses and non-profits.
She splits her time between her home in Dexter, Mi and an apartment in NYC where her husband has worked for almost a decade.