First in a series of occasional articles about Hope for Caroline.
NORWELL — In the quiet hours of a winter afternoon, a suburban mother of two young children is seeking a miracle.
Rachael Cronk’s spunky 5-year-old, Caroline, nicknamed Calle, has a rare and inoperable brain tumor known as diffuse intrinsic pontine glioma. The survival rate for victims of the disease is less than 2 percent, with a life expectancy of nine months to a year from diagnosis. Calle is fighting to turn 6 on Aug. 27.
“The ground has been removed from under you, essentially; you go through so many levels of fear,” Cronk said about first learning of her daughter’s condition on Nov. 15. “It is such an aggressive tumor. It is just such a monster.”
Fast-growing cancers that arise in the brain and often carry a bleak prognosis, gliomas occur more frequently with advanced age; in 2009, Massachusetts Senator Edward M. Kennedy died, at 77, from a glioma in the upper part of the left side of his brain. Calle’s tumor is in the middle of the brain stem, which controls vital body functions, such as breathing. Hers is a rare pediatric malignancy with a median age at diagnosis of between 5 and 9 years old.
Under these grim circumstances, Rachael Cronk and her husband, Kevin, a financial analyst at an investment management company in Boston, are hoping to help find a cure — if not for their daughter, then for others who might otherwise suffer the same fate.
Their quest is a strategic effort that involves extensive social networking, major fund-raising projects, media coverage, and, along with such tangibles, massive doses of prayer, faith, and love.
“I think when you are given a situation like this, you can do two things, and neither one is wrong,” said Rachael Cronk. “You can turn inward toward your family and focus on what is in front of you,” or you can also focus your energies outward.
“I felt that it wasn’t enough to stay inward,” she said. “It would feel too hopeless. We wouldn’t be making anything better. We wouldn’t be giving anyone else a chance — or our daughter a better chance.”
After Calle’s diagnosis, the family, which also includes Connor, 7, formed a nonprofit foundation, Hope for Caroline Inc., which has raised more than $175,000 toward research in diffuse intrinsic pontine glioma, or DIPG. Kevin Cronk said his close-knit family is blessed with the financial resources to provide Calle with top medical care and a mother at home by her side. The foundation will eventually supplement medical and travel expenses for other families affected by DIPG, he said.
Nearly 14,000 people are following Calle’s plight via a Facebook page. There are a number of fund-raisers scheduled, including a “Hope for Caroline Zumbathon” at Zass Fitness in Abington Sunday at 9 a.m. Also Sunday, Calle will be honored at a “Caring Crowns” beauty pageant at 1 p.m. at Plymouth South High School.
There is also a “Hope for Caroline Pancake Breakfast” at St. Mary’s Parish Hall in Scituate on Saturday; a “Calle’s Miracle Run” 5K and 10K at Norwell High School on April 7; and a major fund-raising auction on June 7.
Mother and daughter carried on a playful banter on a recent afternoon as Calle, with her kindergarten mate Lilah Magee, also 5, close by, ate lunch, spied on the adults, showed off her new princess dress, and danced to pop princess Taylor Swift. Calle’s attachment to her mother is loving and fierce; she hates to be in a room without her.
Even as Cronk continued an often tearful interview about her daughter’s health crisis, Calle ran into the room at intervals to jump on her mother’s lap, play peekaboo, or ask for dessert.
Since the diagnosis, days at the Cronk household are defined as “up” if Calle is enjoying life and filled with her typical energy and laughter — a respite after six weeks of radiation, steroid medication, and symptoms such as nausea, a side effect of an experimental drug.
“Calle is a light,” said her mother. “She is easygoing; she is just a gem. She’s active. She’s courageous. She’s brave.”
The hard times include moments when Calle bursts into panicked screams at the sight of her doctor, or when she uncharacteristically trails her mother through the house to deliver a barrage of child slaps and irritated shouts, or when she exhibits overwhelmed frustration in formerly easy settings — in short, when Calle acts out her fatigue and distress in a multitude of ways.
According to Dr. Mark Kieran, director of the pediatric medical neuro-oncology program at Dana-Farber Children’s Hospital Cancer Center, DIPG strikes about 200 children in the United States each year.
As the tumor grows in the brain stem, it impedes the signals from the brain to the spinal cord as well as important neural structures involved in eye movements, face and throat muscle control, and sensation. The glioma’s effect is on the critical part of the brain that regulates breathing and tells the heart to beat — the part of the brain that keeps an individual alive, Kieran said.
Federal funding for research is virtually nonexistent in the current economy — but a handful of clinical trials funded by private donations offer some hope, said Kieran.
At the Dana-Farber Cancer Institute, Kieran, a top pediatric oncologist, is leading an ambitious trial that uses brain-stem biopsies drawn from a handful of children nationwide who are afflicted with DIPG to trace signals driving the tumor and provide targeted treatment. On Feb. 8, the research effort received a $100,000 donation from Hope for Caroline Inc.
“For us, the ultimate impact would be to find a cure for our daughter,” Rachael Cronk said. “Given that, or not, I think one of our main goals is to never have another family hear there is no treatment and no hope.”
Go to www.hopeforcaroline.org for more information or to contribute to the fight against DIPG.