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Francesca, aka Beans. Photo by Andrew Kacyzinski

We Did It Beans: Fighting For Kids Fighting

Abby Zimet

Among Monday's 20,000 runners in the Boston Marathon was Andrew Kaczynski, a CNN reporter whose daughter Francesca, aka Beans, died last Christmas Eve of brain cancer; she was nine months old. Since her death, seeking to transform his grief into good and affirm "her life had purpose and meaning," Kaczynski and his wife Rachel Ensign, who works for the Wall Street Journal, have been advocating and fundraising to fight what is now the leading cancer killer of kids. According to health experts, the current rate of childhood brain  tumors in the US is 5.3 cases per 100,000 kids, for a total of almost 5,000 diagnoses a year.

The good news: Leukemia, long the No.1 pediatric cancer killer, is now much less deadly, the rate of brain cancers has held steady, and its deaths have declined. Still, brain tumors remain the deadliest form of cancer in children - fatal in nearly half of cases - and every day roughly 13 children continue to be diagnosed with them. Arguing there are still too few good treatment options - "They're an afterthought in the world of drug development because there's no profit in it" - Kaczynski says he and other families of stricken kids "just want to be seen and acknowledged (as) real people, and our children are or were real people. You can't just push away childhood cancer into a box as something horrible that happened to someone else but won't happen to me."

When Francesca was diagnosed with a rare and aggressive brain tumor, the Brooklyn-based couple moved to Boston to "give her the best shot" with treatment at Boston's renowned Children's Hospital and Dana-Farber Cancer Institute. Online, Kaczynski documented the harrowing, months-long crucible of surgeries, chemo, infections, setbacks, moments of hope, more setbacks. Beans "gained her wings" on Christmas Eve, a devastated Kaczynski finally wrote: "She showed her parents a kind of love they never knew before, and they will never forget it." In an obituary, he called her "an outgoing, bold and curious baby (with) the world's biggest smile."

Since her death, the couple has worked hard raising awareness and funds - now over $1.3 million - in the name of Team Beans; the money goes to a new Team Beans Infant Brain Tumor Fund in support of Dana-Farber's Infant Brain Tumor Program. So will the over $240,000 Kaczynski raised this week for his run in the first Boston Marathon in two years. He was running, he said, "Because my child died of cancer, and every single day there is another child like her. A child who dies. A family whose lives are shattered with their diagnosis," or relapse, or death. "Beans won't get to live the life she deserved," he said in a tearful interview. "But I want her life to have served a purpose, I want it to have meaning. All these kids' lives did."

On his run, many of those kids traveled with him in spirit after he spent weeks painfully gathering their stories and names in an online campaign. When he put out the call for submissions, he recounts in tears, he got 200 within 12 hours and fervently "wished there weren't so many." He fit 80 names on the back of his Team Beans t-shirt; below them, it reads, "Even the smallest voice can change the world." Having shared their stories before the race and even during it, he also dedicated each of the 26 miles to one child. When he finished, having raised more than their $200,000 goal, he posted, "We did it Beans." That night, he later wrote, he had "this moment of extreme peace" where "I just felt Beans' presence." Hundreds of people responded, thanking him: "You not only honored her, you ran for so many."

There are so many, each with a radiant, wrenching photo. Jackson was diagnosed with osteosarcoma at 7; he died six days later. Elita fought DIPG for 11 months and passed at nine years old. Alexander the Great was diagnosed with neuroblastoma at 8 months and died 13 months later. Aubrey was diagnosed with ATRT at 2, "battled with a smile through surgery, chemo, radiation, relapse," died at 3 years 5 months. Hallie Jean was diagnosed at 4 weeks old with metastatic CNS Embryonal Tumor; forever 8 weeks old. Riley was diagnosed at 10 months old with stage 4 glioblastoma, had 3 brain surgeries, is now 2, with no evidence of disease. Holden was diagnosed with ATRT at 13 months, finished treatment, relapsed, died at "3 years 8 months and 23 days." Nathan had T Cell Lymphoblastic Lymphona, completed treatment last March "after a tumultuous 2.5 year battle," now in 1st grade. Kinsley diagnosed with ATRT at 3.5 years, relapsed to spine at 5, relapsed again at 5.5, stable for a year, at 6.5 found new lesion; she is still fighting. Max the Brave, malignant rhabdoid tumor, died aged 11 months; missed every day. Lookit these kids. Send some money.


Abby Zimet

Abby Zimet

Abby has written CD's Further column since 2008. A longtime, award-winning journalist, she moved to the Maine woods in the early 70s, where she spent a dozen years building a house, hauling water and writing before moving to Portland. Having come of political age during the Vietnam War, she has long been involved in women's, labor, anti-war, social justice and refugee rights issues. 

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