- .Caroline Cronk, 5, of Norwell, Massachusetts, was diagnosed with a type of brain cancer called diffuse intrinsic pontine glioma
- .The disease shuts down pathways that control life functions one by one, like flipping a switch
- .It also affects the person's motor control and vision and strikes some 200 children a year
- .Her mother, Rachael, and father, Kevin, fought to keep their daughter alive through radiation therapy and other treatments
- .Rachael did everything she could to make Caroline's last months, weeks and days as happy as possible
- .Caroline loved to dance and sing and showed 'boundless courage', says her mother
- .At home they called the tumour a ‘boo-boo on Calle’s brain’ and never mentioned the word 'death'
- .Thousands of people came out for the ‘Calle’s Miracle Run’
- .The family built a pool for Caroline who loved the water
- .It was finished just days before Caroline died on July 18, 2013
When Rachael Cronk brought her daughter Caroline, 5, to the emergency room one November evening in 2012, it was because her little girl was falling in dance class.
She didn't know that tumour in her brain was already affecting her daughter's motor control and vision.
Rachael had thought it might be Lyme disease, or one of the thousand other dread possibilities that run through a parent’s mind and almost always turn out to be nothing, according to a report in the Boston Globe.
As Rachael and her husband Kevin, of Norwell, Massachusetts, awaited the results of an MRI and the evening wore on, she told her husband it would be better for him to go home and look after Connor, their 7-year-old son.
There was a mass, the doctors said. All feeling left Rachael’s body. When they left, a cry of disbelief escaped her, and she collapsed to her knees.
After that point the brave Massachusetts family let the local newspaper into their homes, a photographer documented little Caroline's brave battle and ultimate death at the hands of the disease.
Last dance: Caroline Cronk, 5, second from left, loved to dance. This is her at the spring dance recital which was moved up as her tumour began to grow again
Diagnosis: Caroline was found to have a deadly tumour in her brain after she started falling during dance classes
The cancer that grew inside Caroline has a clinically precise name that doesn’t immediately convey its devastation.
Diffuse intrinsic pontine glioma arises from glial cells, most commonly found in the brain, and grows in the pons, a communication center that processes signals from the brain and shuttles them to the central nervous system.
Control of every function of the body passes through it, but it is the first two words of the name that tell of the cancer’s true insidiousness.
Intrinsic means the cancer is growing inside the brain, not on its surface where it might be more readily accessed and perhaps removed.
Diffuse describes a tumor so interspersed in healthy tissue that oncologists call it ‘and in the grass’; there is no way to take it out without inflicting severe or mortal damage.
As it grows, the tumour shuts down the pathways that control life, turning off functions as though flipping light switches: movements, senses, and finally breathing and heartbeat.
It usually strikes young children, some 200 a year — a number considered so insignificant that publicly funded research is rare. No major advances have been made in 30 years.
For Caroline, there would be treatment, the doctors said, including radiation and steroids, but fewer than 2 per cent of patients diagnosed with the disease survive.
That night when she put Caroline to bed, Rachael crawled in with her. She would sleep with her every night from now on.
Rachael was accustomed to making things happen. Two per cent was not a big chance, but it was not zero. She would find a way.
Never alone: Caroline's mother, Rachael, decided to never let her daughter sleep alone again after she was diagnosed with cancer
The radiation treatment started soon after at the Brigham and Women’s radiation oncology unit.
Caroline first had to undergo surgery to install a tube in her chest to administer medication and extract blood, and to mold a mask that would fix her head in place while a machine aimed a beam of X-rays at her skull.
She was given a large dose of steroids before each treatment to help reduce the swelling that radiation would cause in her brain, but it also made her furious and ferociously hungry.
She wasn’t allowed to eat before the treatments, and she would scream and cry all morning.
She was inconsolable through an hour of rush-hour traffic and then through the madness of the Longwood medical campus. Rachael talked to her, sang, offered bribes.
At the hospital Rachael held her squirming daughter tightly, whispering, ‘Your momma’s got you,’ as a member of the team found the port in Caroline’s chest and attached a tube carrying anesthetic. Caroline growled and went limp.
Her eyes rolled back in her head, and Rachael felt her own heart tearing.
For the next 10 minutes, Caroline lay asleep and motionless on a table while the machines beamed ionising radiation into her brain.
They would give her enough to shrink the tumour, the doctors hoped, but not so much that it would damage her brain.
When it was over and the anesthesia stopped, Caroline woke, a sudden startled shock into consciousness, and cried to go home.
Treatments: For six weeks the young child had radiation treatment at the Brigham and Women's radiation oncology unit. Doctors hoped it would help shrink the tumour
Support: 'Your mama's got you', Rachael would tell her daughter during radiation treatments
There was six more weeks of this, running through Christmas and part of January.
She showed what seemed like boundless courage to Rachael. The radiation made her sick, and on the way home once, Caroline threw up in the car.
‘You want me to pull over?’ Rachael said. ‘It’s OK, Mommy,’ she replied. ‘I’m fine.’
Rachael and Kevin avoided the word cancer and said nothing about death around the children. The reason for all the hospital visits and all the activity, they told the children, was a ‘boo-boo on Calle’s brain’.
Connor was confused and didn’t understand why his sister got so much attention.
He had occasional fits of temper and anxiety, yelling out to Rachael while brushing his teeth, ‘You hate me!’
News of Caroline’s illness sparked an outpouring and cards and letters came in the mail most every day, often with checks or cash.
Rachael and Kevin woke in the morning to find things waiting on the front porch, such as trays of cupcakes, toys, stuffed animals, blankets.
Around town, signs appeared, reading ‘Miracles Happen’ and ‘Hope for Caroline’.
Early birthday: Caroline's parents, Rachael, not pictured, and Kevin, pictured, organised a party to celebrate her 6th birthday a few weeks before the actual date, as her health was dwindling
Friends and fun: Caroline, centre, was always trying to have fun. Here she is at her friend's birthday party
A Facebook page that a friend of Rachael’s created was getting thousands of followers and brought prayers and well-wishes from around the world.
‘One little girl has inspired an entire community,’ said Rachael’s close friend, Kristin Jervey. ‘Even strangers beyond the community are trying to help.’
With the gifts of money, Rachael and Kevin started a nonprofit, Hope for Caroline, and held fund-raisers.
Federal funding for research of treatments for Caroline’s form of cancer was virtually non-existent.
Caroline was taking an experimental drug that was available only because private donors were financing a trial in Boston.
After six long weeks, radiation treatment ended and Caroline was seemingly improving.
She went back to school and dance class. The family travelled to Montana to see Kevin’s family and went to Disney World.
Caroline returned to a level of normalcy, like singing and dancing.
A month or so later, in February, imaging of Caroline’s brain showed confusing results as the radiation had not shrunk the tumour. But she seemed to be more like the girl she had been before the cancer.
Winter turned to spring, and Rachael and Kevin decided to build a swimming pool because Caroline had always been drawn to water and loved frolicking in it.
The family organised a birthday party for her ahead of time to celebrate her 6th birthday, just in case she would not make it to the actual day.
Her dance class recital classes were also pushed up as her health was dwindling.
Getting better: Caroline 'Calle' Cronk, right, and her best friend, Lilah Magee, get Best Friend necklaces
Supporters: About 2,000 people came out to run in the Calle's Miracle Run event, which her parents said was a day they would never forget
A local contractor shuffled other jobs and vowed to get it done quickly, and when a crew showed up for work, they wore ‘Hope for Caroline’ bracelets.
On a Sunday morning in early April organizers called put together a race called ‘Calle’s Miracle Run’, which drew thousands of people.
Caroline even unexpectedly darted out to join the participants.
Caroline even unexpectedly darted out to join the participants.
It was a day Rachael said she would never forget.
A month later, fuelled by that hope and by a determination to take every imaginable step, Rachael boarded a plane with Caroline for France, to take part in an annual pilgrimage to Lourdes, a site of great holy meaning.
She took Caroline to the sacred baths, where water from the spring is piped into stone tubs.
When it was her turn, attendants wrapped her in a towel and dipped her into the icy water. They did the same for Caroline.
As Rachael was lowered in, she closed her eyes and poured everything inside her, everything she’d been through, the hopes and doubts, the worry and love, into a single prayer.
‘Please, God,’ she said. ‘Take care of my child, and restore her health.’
A week after coming home, the image on the brain scan confirmed what Rachael did not want to believe, but it showed the reason that Caroline’s head was tilting.
The tumour had grown again, and by a staggering 25 per cent. There had been no miracle, and the drugs had not worked.
A last swim: Five days before her death, Calle and her family have a cook out for friends and family and swim in their newly built pool. Calle can hardly move at this point
Dying: Caroline has lost the ability to communicate, but when her mother asks her if she can see God, she nods
The betrayal Rachael felt was searing. Whatever hopes she nurtured in Lourdes, for Caroline and for her own faith, were gone.
‘I felt like I had been punched in the soul. I wanted reassurance that God was there,’ she said, ‘and I felt like I found the opposite.’
At night next to Caroline’s sleeping form, she sometimes whispered apologies into the dark. ‘I’m so sorry this happened,’ she said. ‘I’m so sorry I can’t fix it.’
The disease progressed, with new losses almost daily. Caroline’s left arm became clumsy and stopped working. Then her left leg. She started slurring her words, and her facial expressions began to fade.
The week after the Fourth of July, Rachael saw a water truck pull in, a hose being attached, a cascade of water falling into the new pool.
Rachael lifted Caroline’s weak body, cradled her against her shoulder and carried her outside.
Rachael gingerly stepped down a set of stairs into the dry shell of the pool and down its sloping incline to the deep end.
While the crew members watched, she cradled her daughter’s head, brushed a wisp of hair from her eyes with her palm, and then knelt to lay her gently on a raft in the gradually rising water.
Not long after, on a Wednesday night in mid-July, Rachael whispered to her daughter: ‘Do you see God?’
Rachael lay next to Caroline on the bed. She could no longer speak and had only slight movements.
‘Is he talking to you?’ Rachael said. ‘Is he calling you?’
Caroline stared back at her mother and slowly nodded her head.
Sad farewell: Kevin and Rachael say good bye to their daughter after their nine-month struggle to keep her alive
She died on July 18, 2013.
Rachael wore a white dress and Caroline’s red toenail polish to the funeral a few days later.
She carried a piece of soft fabric, one half of a blanket Caroline loved that went by the name Light B.
They had asked that the cancer be removed; the tumour might be valuable to medical researchers, but more than that, Rachael could not bear the thought of it remaining inside her daughter.
Connor is talking to a therapist. Rachael and Kevin told him that dimes on the sidewalk are kisses from Calle. He hunts for them and keeps a jar full in his room.
After everything, faith is a question for Rachael. She is not always sure there is a God or any eternal promise in love.
But she makes herself believe. ‘I have to have faith now,’ she says. ‘If I don’t, then I don’t know where she is.’
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