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
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Pictures: Hope for Caroline
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.
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