Third in a series of occasional articles about Hope for Caroline.
NORWELL — In many ways, Caroline “Calle” Cronk is not so different from other children her age.
The 5-year-old has the preoccupations of the typical kindergartner: She likes to cut and paste simple shapes, grasp a pencil like an adult, and play games that mix fantasy and reality. The difference is, for Calle, these routine activities matter for reasons she does not know.
Nearly six months ago, Calle was diagnosed with a devastating childhood cancer: diffuse intrinsic pontine glioma, or DIPG, an inoperable tumor located in the brain stem. The median overall survival period of children diagnosed with DIPG is less than a year, according to medical statistics. Fewer than 2 percent of children, typically ranging from ages 6 to 10, survive it.
The health crisis has rocked the Cronk family, which includes parents Kevin and Rachael and brother Connor, 7, but, as much as possible, in the midst of all the medical procedures and upheaval, they have maintained a schedule typical of a suburban family with two young children: school, playdates, after-school activities, birthdays. Ground rules about acting with fairness and cooperation still apply at home.
In short, the trappings of American childhood, its structure and expectations, remain intact.
All children, even when facing mortality, need to remain rooted in childhood, say specialists such as Dr. Nina Muriel, chief of the division of pediatric psychosocial oncology at Dana-Farber Children’s Hospital Cancer Center. She said it is crucial that children
with a cancer diagnosis move toward developmental milestones despite the illness. Her team helps parents on how to talk to their children, and helps address concerns they may have about coping skills and other issues. She said parents are the best resource for their own children but experts can sometimes help parents communicate with them in an age-appropriate way.
According to Dr. Mark Kieran, director of the pediatric medical neuro-oncology program at the cancer center, about 200 children are diagnosed with DIPG in the United States a year. The disease affects the critical part of the brain that regulates when to breathe and tells the heart to beat; the part of the brain that keeps an individual alive.
At the Cronk home, the family refers to Calle’s tumor as a “boo-boo” on her brain. Her parents have said Calle is aware that the tumor has altered her life but, beyond that, she remains enveloped in childhood. While she has undergone six weeks of radiation, several hospital visits for magnetic resonance imaging, or MRI, and steroid treatment, Calle has managed to remain playfully obsessed with American Girl dolls and princess dresses. She sends video messages to her “best friend forever,” Lilah Magee, also 5, in which she sways her shoulders and announces with attitude: “See you at dance class! I love you BFF!” In the bathtub, she draws chalk hearts on the wall; she is full of hope. At kindergarten, teachers are impressed by Calle’s ability to keep up with the other children despite feeling unwell and tired on some days.
“She is doing really well,” Rachael Cronk said last week.
Linda Magee, Lilah’s mother, said the young girls hold fast to their friendship and, at moments, it seems to transcend childhood. She described a time when Lilah practiced a dance routine at home.
“I’m going to teach Calle, and this is going to be our dance,” Lilah told her mother. A melancholy song without lyrics came on the radio, and she added: “Have you heard this? It is about a girl who loses her very best friend. Her best friend dies. This is a sad song but I like it. I am going to make a beautiful dance to it.”
“I don’t know if on some level, she gets it,” Linda Magee said.
Michelle Hayes, owner of Carousel Dance, a studio in Scituate where Calle began classes four years ago, accepted Lilah as an unexpected student to accommodate the deepening friendship.
“Calle said she needed her friend. So now Lilah comes, too,” Hayes said after a recent class in which the girls, in black leotards and white tutus, spun toward each other, tapped rainbow flags, and, laughing, flopped to the ground, eyes locked.
The friendships and routines of childhood matter greatly, said Rachael Cronk, an energetic stay-at-home mom. She stopped sending Calle and Connor on the school bus this fall because children were speaking in frank and hard terms about her daughter’s cancer. It is a word that family members avoid. She said they do occasionally use the word “tumor” with Calle to make the term familiar rather than frightening, but do not delve into its serious health implications. They want to protect Calle, she said, although there is no way to shield her from all pain.
“She gets it,” said Rachael. “She definitely feels it. It’s hard. If I cry at church, she’ll ask, ‘Mommy, why do you have tears?’ ”
On the heels of Calle’s Nov. 15 diagnosis, the family founded Hope for Caroline, a nonprofit foundation to fund research and offer support to families of children with the same rare brain tumor. About three months later, they officially presented
$100,000 to the Dana-Farber Cancer Institute to support an ambitious clinical trial that aims to find a cure. Last week the family donated an additional $100,000 to the institute to support DIPG research, an amount made possible by a fund-raiser sponsored by Kevin Cronk’s workplace, Standish Mellon Asset Management Co., an investment firm in Boston. The family also donated $100,000 to the national DIPG Registry, which was created by a group of physicians and researchers in 2011 to collect information about patients’ tumors and develop better treatments.
The family’s plight has inspired a Facebook site and multiple fund-raisers, including, on April 7, Calle’s Miracle Run, which drew more than 2,000 participants. A Hope for Caroline Auction will be held June 7 at Granite Links Golf Club in Quincy.
As Kevin Cronk posted to the family’s more than 14,000 Facebook followers after the April 7 run: “Sorry for the sentimentality, but there are a few moments that I will remember all my life . . . when I saw Rachael on our wedding day, when Connor and Calle were born, and today when I crested the hill and saw all those 2,000-plus people ahead of us. Incredible. Thank you, thank you, thank you!”
On that spring morning, Calle and her family were escorted to Norwell High School in a police cruiser with a full motorcade. As most caring adults might do to spare their youngster, her family told her she makes a photogenic poster child, which is undeniable, to help explain all the fuss.