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 five, 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.

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 on Nov. 15, 2012. The median overall survival of children diagnosed with DIPG is less than a year, according to medical statistics. Less than two percent of children, typically ranging from ages six 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 five, 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.”

“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, six, 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.

Read more at The Boston Globe.

2 thoughts on “5-Year-Old Calle Cronk, Her Family Fight Rare Illness: Diffuse Intrinsic Pontine Glioma”

  1. Arif Ahmed says:

    I think it US government fault not to invest large amount money to do proper research to find a proper cure long time ago. US government did not care about their children otherwise last seven administration would have spent billions of pounds to find proper cure for vicious child killer. They did not give a damn about these children life because they are in small number 300 in year. But these three hundred are human being and they are future of countries. Every Child is precious for their parents billion of dollars will not be able to replace them. That’s why they last season US administration official should put on trial for negligent criminal attitude towards their child population by simply dumped them to face this vicious monster dipg. This beast will kill you child slowly in front of your eyes and you can do nothing to help her and all these doctor and nurses will do nothing. So the pain and suffering your child will suffer will stay with you forever. It is the federal government first and primary duty to safeguard it children from the fastest child killing machine called dipg. So if the last seven US administration had minimum humanity they should die of shame simply send these children to certain deaths by this monsterdipg So if the Last seven US administration had invested billions of dollars to do proper research to find proper cure for child killer dipg at least ten years ago because there was not any proper research and single medicine for last fifty years. So all these children killed by this monster dipg could have saved. They would be with their loved one. US government shamelessly failed all these parents because they have got no dignity and respect for these children because they are voiceless and they got no vote. People like Lauren hill and the parents who has lost their loved one’s are doing government to raise awareness and funding for quick research to find a proper cure for this beasts dipg. If all the influancial people in the last seven administration children were become the victim of this child killer then cure for vicious killer would have found ten years ago. Then they would have spent billion of dollars to do proper research to find a proper cure for this monster dipg because to do research you need lots of money and expertise. So parents who have small children should forced their respective government to invest proper money to do proper research to find a proper cure for this child killer sooner than later then these children will future to choose live or getting killed by this beast dipg. If all the parents don’t wake up now to awareness and form public opinion against their government to stop this cruel injustice towards our children and forced the government to invest big amount of money . Government spending billions of dollars to space shuttle even it’s destroy on launching pad they don’t care. It’s now time for parents to take care of your children by simply removing this vicious monster dipg otherwise every one child is in mortal danger because you don’t know when this beast is going to strike next and where. No one child is safe until this ferocious beast is tamed. If all parents don’t do anything then it will be too late for your child will robbed in front of your eyes and you have to watch how painfully your child will be taken away in front of your eyes. I am telling from own experience and I have live rest of my life with pain and suffering and nothing will change that. So wake up all the parents to do something to make child safe by for the government to spend billions of dollars because taxpayers money and our children have got right to choose to live by removing the this unimaginable danger from their life permanently. Then every child will have future to live their life in full without facing this vicious monster .Arif Ahmed

  2. Crystal Southwood says:

    My nephew, Colton Ritchie, who is an identical twin was just diagnosed with a tumor on his brain stem. The doctors have given us little hope. There has to be hope. God please. He’s only five years old. Him and his brother will be six this December. He’s so sweet and wonderful. He starts radiation Monday and they are going to try some experimental drug at some point. We can’t lose this little guy.

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