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5-year-old Calle Cronk, her family fight rare illness

Calle Cronk (center), who spends much of her time undergoing medical tests, enjoyed a recent dance class.

Suzanne Kreiter/Globe Staff

Calle Cronk (center), who spends much of her time undergoing medical tests, enjoyed a recent dance class.

Today a young girl with a lot of fun stuff to get done instead has an appoint­ment at Dana-Farber ­Children’s Hospital Cancer Center, where specialists plan to make a picture of her brain.

At age 5, Caroline Cronk, best known as Calle, is no fan of medical procedures, needles, and forced stillness. She prefers a good princess dress, a microphone, and a dance floor. It would not be her choice, if she had one, to close her eyes and let adults construct images of what lies ­inside her head.

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If the storm does not alter their plans, parents Kevin and Rachael Cronk will slip away during the hour Calle is sedated for magnetic resonance imaging, an MRI, to officially present $100,000 to the Dana-Farber Cancer Institute. They raised the money in less than three months. It will support an ambitious clinical trial that aims to cure a devastating childhood malignancy: diffuse intrinsic pontine glioma, known as DIPG, an inoperable tumor located in the brain stem.

Calle was diagnosed with DIPG tumor Nov. 15, 2012. The median overall survival of children diagnosed with DIPG is less than a year, according to medical statistics. Less than 2 percent of children, typically ranging from ages 6 to 10, survive it.

“To me it looked like the size of a really big walnut,” said ­Rachael Cronk, recalling the day she saw the tumor for the first time. “She’s only 5, so her head isn’t very big. So I saw that and I fell to my knees. You just can’t believe it is happening.”

Rachael Cronk and her husband, Kevin, have founded a nonprofit foundation to fund research on the illness that has stricken their daughter.

Suzanne Kreiter/Globe Staff

Rachael Cronk and her husband, Kevin, have founded a nonprofit foundation to fund research on the illness that has stricken their daughter.

“She was so perfect and so perfectly fine a month before. There was nothing that was wrong. . . . Every day I always thank God in disbelief that I was given such a perfect child. I could not understand why. It felt like that was just taken away from me.”

Dr. Mark Kieran, director of the pediatric medical neuro-
oncology program at Dana ­Farber Children’s Hospital Cancer Center, said that about 200 children a year are diagnosed with DIPG. It effects 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.

For the Cronk family, their crisis unfolded at a frightening pace. Only this summer Calle was fearlessly climbing to the tippy-top of the backyard water slide; she developed a habit of sliding down without even a backward glance. She learned to swim in the pool on her own: underwater, back float, back stroke, you name it.

All seemed well until the family’s return from an August vacation to Montana. Her mother started to notice a few things she later interpreted as signs Calle’s inner self sensed trouble; that somewhere inside her little girl felt something was off. Calle developed night terrors. She began talking in her sleep for hours at a time.

In September, Calle, a girl known for diving into situations with a playful attitude, did not want to attend kindergarten. On some days, she flat out refused to get on the bus. She started to fall while walking across the floor; she was unable to coordinate her feet.

Rachael Cronk is an energetic stay-at-home mom and her husband is a financial analyst at a leading investment management firm in Boston. The family, which also includes Calle’s pal and older brother, Connor, 6, lives in a spacious home in the affluent southern suburb of Norwell; they are a well-educated couple accustomed to getting things done.

They took her to a family doctor for tests. It was two days before they were due to receive the results for Lyme disease that Calle again lost her balance during a dance class in Scituate. That day one side of her face looked paralyzed. Her mother rushed her to the hospital.

Doctors did vision and reflex tests and, eventually, an MRI. Her mother did not think the diagnostic test would turn up anything; she believed it was Lyme disease. She waited in a small dark room.

“I didn’t think anything was there,” Rachael Cronk recalls now. “There was nothing in my mind at all that suspected anything of this magnitude . . . nothing.”

Then three doctors arrived with the MRI results in the early morning hours. They had ­located a large mass in Calle’s brain stem.

“For some reason, my whole body went to the worst possible case scenario, and in the back of my mind I just knew,” she says. “I made them show me the scan.”

She wanted to draw on past experience as an X-ray technician to make sense of it. Even factoring in the magnification, she knew immediately it was bad.

On the heels of this news, the family founded Hope for Caroline, a nonprofit foundation to fund research and offer support to families of children suffering from the same rare brain tumor.

Their plight has inspired a Facebook site, a pep rally at the local high school, even a campaign by kindergarten classmates to secure Calle a meeting with singer Taylor Swift. There will be a spring road race at Norwell High School to raise money for medical research and an auction in June.

And Dana Farber will start a Hope For Caroline fund, as well, inspired by the donation from the Cronk family.

Kieran, the doctor at Dana Farber Children’s Hospital Cancer Center, is heading up a new trial at Dana Farber that draws on biology and medical expertise to trace signals driving the tumor. It currently involves nine children from across the country, though Calle’s parents have opted not to join the trial.

The trial is entirely privately funded, because rare tumors ­often do not get federal money in this economy, says Kieran. He argues that many advances in battling adult cancer have been learned through pediatrics because in children the disease is pure, not influenced by variables such as smoking or poor diet.

“We have an expression that children are the healthiest ­dying people in the world,” he said.

As for Calle, she is just a little girl, but one who has been through six weeks of radiation.

Today the MRI will tell her family, for the first time since Nov. 15, the current size of the tumor. Next week, she is off to Disney World in Florida.

Meg Murphy can be reached at msmegmurphy@gmail.com.
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