The gospel of Calle
She was the sweet, spunky girl who made the family complete. Then with one blurry MRI, she was a 5-year-old with little time left. Caroline Cronk’s parents raced to fill her days, struggled to understand, and found a lesson of love in loss, one that they could barely live with and will never live without.
NORWELL — On that spectacular June afternoon, Rachael Cronk got through the day the only way she knew, by willing herself into cheerfulness and locking out everything else. Out on the lawn and around the glimmering sapphire of the pool, small children ran with delight. A performer did magic tricks and twisted long balloons into impossible shapes. Along the deck railings, rows of Happy Birthday balloons floated like colored zeppelins, and plates of sugar cookies waited to be smeared with frosting and decorated with bits of candy.
"Let's all gather around the chair!" Rachael called out to the melee of bodies across the yard. She carried a neon-colored piñata to a deck chair near the pool where her 5-year-old daughter, Caroline, sat in a pink birthday dress, beaming with expectation.
The children came, and Rachael held the piñata aloft, helping her daughter give an exuberant jerk on a string that tore it open and let loose a rain of candy. Voices shrieked. Tiny hands grabbed. Rachael reached down for a Tootsie Pop, unwrapped it, and offered it by its paper stick. "Here you go," she said, and felt a flush of happiness as Calle exulted in the sweet candy and attention. Rachael also felt the familiar shadow. "I wish I wasn't having to do this," she thought. "I shouldn't be having to do this."
"This" — Rachael's cheerfulness, the giddy children, the happy birthday balloons — was an illusion, a benevolent falsehood to give her daughter happiness. Most everyone at the party knew the truth, though Caroline did not — that it was nine weeks until her sixth birthday but they were celebrating early because an incurable and especially aggressive form of cancer might kill her before then. Growing rapidly at the base of her brain, it had already impaired movement in the left side of her body, dimmed her vision, and made it hard to talk and swallow.
A friend of Rachael's had delicately suggested the party and offered up her house and swimming pool. Rachael was taken aback. Every day she woke with the expectation that she would find a way to make her daughter better and did not want to acknowledge another outcome. That was a thought that lived only in darkness, in a compartment she'd constructed deep in her mind that she called "the box." It is where she put all the terrible thoughts, the fear and anger, the grief. It is where she put the memory of that endless November night seven months before in the dim room in the hospital basement, when the doctors came to her, grim-faced.
She had asked to see the image herself and stared at the knob of darkness in her daughter's brain, no bigger than a walnut, and later listened with her husband, Kevin, as doctors explained that the tumor was interwoven among tissue that controls the functions of life and that it was impossible for surgeons to extract.
She hated the doctors for the hopeless looks on their faces.
She seethed at Kevin for asking how much time they had left.
The question presupposed an end, and Rachael corrected him in her mind: Caroline is sick, and we are going to fix it.
In the seven months that followed, she and Kevin tried everything they could think of. Their community showered them with help and support. They raised $700,000 and appealed to medical researchers. Rachael flew across the Atlantic in search of a miracle.
Even now, as the children at the party came around the table and raucously sang Happy Birthday and Caroline laughed and belted out indecipherable words along with them, Rachael resolved again: There will be another party, she told herself. We'll do it all again on her real birthday.
* * *
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 "sand in the grass." There is no way to take it out without inflicting severe or mortal damage. As it grows, the tumor 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.
When Rachael brought Caroline to the emergency room that November evening, it was because her little girl was falling in dance class. The tumor was already affecting her 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.
As Rachael and Kevin 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. Rachael was seated alone in a waiting room at 2 in the morning when the three doctors came. Two sat down on either side of her. The third stood. There was a mass, they said. All feeling left Rachael's body. When they left, a cry of disbelief escaped her, and she collapsed to her knees.
Kevin rushed back and family members flocked in. There would be treatment, the doctors said. Radiation and steroids. There were experimental drugs and techniques, but the choices were few. Fewer than 2 percent of patients diagnosed with the disease survive. The overwhelming odds were that it would buy only time.
Driving home to Norwell that morning, Kevin in the passenger seat, Caroline in her car seat in the back, Rachael's mind was numb. Caroline was the daughter she had imagined and hoped for long before she was born. There had been two years of fertility treatments and, finally, a son, a miracle all his own. When Caroline was born and laid on Rachael's chest, it felt almost like being reunited with a piece of her that had been missing; she felt at last that the family she had longed for was complete. Gripping the wheel now, staring hard ahead so that her daughter would not see her weeping, Rachael simply shut out what she could not allow to be.
That night when she put Caroline to bed, Rachael crawled in with her. She would sleep with her from now on. The next morning, she got Connor off to school as always, and put a favorite cartoon show on the TV for Caroline. Then she went upstairs to her bedroom, picked up the phone, and began making calls. She called friends. She called oncologists, dozens of them. She asked about experimental drugs, inquired about clinical trials. She found someone to give a second opinion on the diagnosis. When she was through with one phone call, she hung up and dialed again. Two percent was not a big chance, but it was not zero. Rachael was accustomed to making things happen. She would find a way.
* * *
IN THE DARK, Caroline slumbered, but Rachael could not sleep. She was full of sadness and fury. At night was when the rage most often came. What kind of God would do this, she thought. "I am a good person and a good mother. I do good things for people and take care of my children." She thought of Kevin. She could tell how intense his pain was, but he had faith that all of this, no matter how hard, was part of something meaningful, even if they couldn't understand it. It was God's plan, and he would somehow accept it.
His faith was something she loved about him and leaned on. It was an extension of his kindness and a charitable view of the world shaped by his childhood in Montana and the devout family that raised him. She grew up in Plymouth in a close Irish Catholic family but as an adult was not particularly religious. After she and Kevin married and had kids, church became a regular part of their lives. She went for his sake and found also that she wanted to find the kind of faith he had.
She and Kevin had faced trials together. Two years of uncertainty while they tried and failed and tried again to have children. A year and a half after Kevin lost his job as an investment manager and couldn't find work. They'd passed those tests and grown stronger, and finally this year it seemed like the future was clear. The children were growing into jewels. Connor athletic, sensitive. Caroline sweet, irreverent, and strong-willed, given to pranks and peals of laughter. It seemed plausible to Rachael in those days, such a short while ago, that God did have a plan. But not now.
* * *
THE PLAY ROOM at Brigham and Women's radiation oncology unit had games and puzzles and colorful furniture, but there was no mistaking where they were. The smell that all hospitals seem to have — of Purell and antiseptic, of illness and fear — it was here, too. After a wretched morning getting her to this first appointment for radiation treatment, Caroline was now quiet and comfortable.
It was Nov. 28. Two weeks had passed since the diagnosis. Rachael felt like she was on a roller coaster, confused by the pace of things. They'd had a Thanksgiving feast, a game of football in the yard, gotten dressed up for Christmas card pictures. Just like they did every year. There had been meetings with the doctor but Rachael couldn't listen to him, could barely look him in the eye. She resented him for what seemed to her an indifferent manner and for making this unthinkable diagnosis in the first place. There were other appointments, too, surgery to install a tube in Caroline's 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.
Before this morning's appointment, they had started Caroline on steroids. It was a large dose 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 screamed and cried all morning. Rachael's mother came over early to look after Connor and get him ready for school. Rachael managed to get Caroline out of the house, into the car seat, and out to the highway. Her daughter 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.
In the play room now, Caroline played contentedly. But then someone in scrubs came. Caroline stiffened. "No," she cried. Rachael picked her up, tried to soothe her, but she kicked and struggled and wailed as Rachael carried her inside. A team of nurses gently helped, and Rachael held her 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 ionizing radiation into her brain. They would give her enough to shrink the tumor, 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.
There were to be six more weeks of this, running through Christmas and part of January. Thirty days of it, each very much the same: The long, nerve-wracking drive through traffic, Caroline's agonized wails, her struggles when it was time to go in. 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. They did not want to frighten them or rob them of whatever happiness remained. The subject must not be part of their daily conversation; saying such things out loud was conceding too much. After the principal at Caroline's school sent a well-meaning letter to parents saying Caroline had a tumor and less than a year to live, a student said something about it to Connor on the bus. Rachael made sure that Connor had another ride to school after that. 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 clearly confused. He didn't understand why his sister got so much attention and felt cheated. He had occasional fits of temper and anxiety, yelling out to Rachael while brushing his teeth, "You hate me!" He was in pain, and needed more of her, and Rachael felt intense pangs because of it. But there was a hard calculus in her head: There will be time later.
News of Caroline's illness had spread fast and sparked an outpouring. 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. Trays of cupcakes, toys, stuffed animals, blankets. Around town, signs appeared, reading "Miracles Happen" and "Hope for Caroline." Broad red ribbons that residents were selling to raise money hung on fences, lightposts, mailboxes. Newspapers and TV news did stories, and Rachael and Kevin appeared at rallies and vigils. 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.
It felt astounding and wondrous. "One little girl has inspired an entire community," said Rachael's close friend, Kristin Jervey. "Even strangers beyond the community are trying to help."
Groups of friends and neighbors, meanwhile, formed committees to aid the family. They helped with chores, went to Target, hustled up dinner, rode along on trips to the hospital. Rachael opened their home to them. She liked the activity and bustle. One afternoon, the phone rang. It was a 27-year-old elementary school tutor. "I want to help," she said. Come on over, Rachael replied.
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 nonexistent. Caroline was taking an experimental drug that was available only because private donors were financing a trial in Boston. One of the nonprofit's first donations was a $100,000 check for a risky but promising new therapy. Rachael and Kevin wanted the money they raised to help others down the road and make Caroline's condition better known to the world. They also hoped it might yield a breakthrough in time to save their daughter.
* * *
FINALLY, radiation treatment ended, marked by a party with cake and a song, "Happy last day to you . . . " and life began to feel a little bit better. The drugs Caroline took sometimes made her nauseous and gave her headaches, but she no longer had to take so many steroids. The puffiness they caused in her face faded, and some of her symptoms seemed to improve. She went back to school and dance class. The family traveled to Montana to see Kevin's family and went to Disney World.
In February, imaging of Caroline's brain showed confusing results. It was hard to tell whether radiation had made any appreciable impact on the tumor. But she seemed to be more like the girl she had been before the cancer.
At home in the living room, she put on Taylor Swift songs, turned them up loud and danced. Friends came over. She and Rachael had a weekly date at the mall, where they ate pizza for lunch and went to the American Girl doll store. On weekends Kevin took her to a local stable, where she learned to ride a white pony named Sinatra. "We're getting used to happy times again," said Rachael's sister, Sharon, who had become a fixture around the house.
Winter turned to spring, and Rachael and Kevin decided to build a swimming pool. Caroline had always been drawn to water and loved frolicking in it. They would do it for her. A local contractor shuffled other jobs and vowed to get it done quickly. When a crew showed up for work, they wore "Hope for Caroline" bracelets.
* * *
"MOMMA, when are they going to be here?" The small voice shouted from the couch in the living room where Caroline and her brother bounced excitedly and peered out the window. It was a chilly Sunday morning in early April. A pale sun over the winter-bare trees promised warmth. Rachael hustled to get ready for the latest benefit, a road race its organizers called "Calle's Miracle Run." Kevin left the house early to help. Rachael dressed her daughter in a jersey with her name across the back and braided her hair. Now they were waiting for the Norwell Police Department, which had offered to give them a ride. The children could not contain their elation at the prospect of being in a police car.
When the escort arrived, it was a full motorcade of cruisers and seven motorcycles. Grinning officers gave Caroline and Connor badges with their names on them, and they all stood for pictures under the "Believe in Miracles" sign posted above the front steps. They rode through town with lights and sirens blazing and then over a hill to Norwell High School, where the race was to start.
As they mounted the rise, Rachael caught her breath. Ahead were thousands of people. Tents had been erected, animals brought in for a petting zoo. There was food and music and a feeling of electricity. "There are a few moments I will remember all my life," Kevin wrote on Facebook later that day. "When I saw Rachael on our wedding day, when Connor and Calle were born, and today when I crested the hill and saw all those 2,000-plus people ahead of us. Incredible."
The crowd parted as the motorcade came through. Runners waved and cheered. Inside the car, Caroline waved back, dazzled by the spectacle. When they got out, she rode on Rachael's shoulders and waved and gave high-fives.
Caroline was assigned the task of signaling the start of a kids race with a blast of an air horn. Given her condition, it was assumed Caroline would not run. But as the wave of children surged forward, she darted in among the others, arms pumping and braid swaying. "Out of the way!" she shouted. Rachael instinctively ran after her, momentarily worried. But then she stopped and laughed. It may have been the first good laugh she'd had in a long time. Just a few days earlier, a new MRI showed Caroline's tumor was significantly smaller. Now, watching her daughter running in the delicious spring sun, it seemed possible to believe that, after all, everything would turn out fine.
* * *
A MONTH LATER, fueled by that hope and by a determination to take every imaginable step, Rachael boarded a plane with Caroline for France. The trip was arranged by the Order of Malta, a lay order of the Roman Catholic Church that runs annual pilgrimages to Lourdes, a site of great holy meaning.
A woman from the order had put her number on the Hope for Caroline Facebook page and urged Rachael to call. Many who were sick and dying had recovered or found solace after immersing in the sacred waters at Lourdes, the woman said. Ordinarily, Rachael would have discounted such claims. She was, by nature, someone who anchored herself in concrete realities and common sense. But now she was willing to try anything. And she wanted to feel that something larger was out there, that a loving God was watching. Maybe being in that holy place would help her recover her shattered faith. And if she allowed herself to believe, maybe a divine reversal of her daughter's disease might actually be possible.
The order arranged everything, a car to the airport, plane tickets to France, beds at a hotel near the site.
Rachael found Lourdes beautiful and bustling. Everywhere in the old, winding streets and on the plazas along the river were pilgrims and tourists and the flutter of habits and vestments. Caroline liked riding with Rachael in the blue-hooded voitures that uniformed volunteers used to wheel the sick and infirm from one place to another. She befriended three other children in the group and played with them in the courtyard of the hotel.
The day after arriving, the group took Rachael and Caroline to the grotto where, according to legend, the Blessed Mother Mary appeared to a peasant girl and told her to drink and wash in the spring. They followed a wide stone walk teeming with others seeking healing. It had rained overnight, and clouds hung close among the cragged hills. Rachael carried Caroline in her arms and waited in line. An attendant signaled and her small group was allowed to come forward. Rachael brought letters from home, from people asking for blessings, and placed them in a receptacle. Inside, it felt suddenly intimate, hushed and close. Around them people prayed beseechingly and passed their hands over the rock walls, which wept a thin trickle of water. They were young and old, blind, in wheelchairs. Rachael felt breathless and overcome. "It is overwhelming in what you are seeing and feeling and what you are seeing others feel," Rachael said later. "You can sense the emotion and vulnerability."
Rachael told Caroline to lean forward and touch the cave wall, worn smooth by countless hands that touched it before. As they passed through, she ran her own hand across the wet surface and then touched it to her daughter's neck, saying a silent blessing. Caroline squirmed and resisted.
The next day, filled with something, hope or expectation, she took Caroline to the sacred baths, where water from the spring is piped into stone tubs. Waiting in a room of long wooden benches, she carefully and deliberately said the rosary, reciting the prayers and moving her fingers one after another across the beads. 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."
She emerged spent but refreshed and hopeful. That evening at the hotel, she met for dinner with other members of the pilgrimage group. Chatting at tables in the open air while waiting for food, she distractedly watched Caroline play tag with other children across the way. It did not fully register at that moment. It would take some days for her to recognize that Caroline's head listed to one side, the way it had months before.
* * *
THE IMAGE on the brain scan confirmed what Rachael did not want to believe. They had been home a week, and the image showed the reason that Caroline's head was tilting. The tumor had grown again, and by a staggering 25 percent. There had been no miracle, and the drugs had not worked.
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."
A new drug was chosen, a chemotherapy drug. Researchers were trying something new, but chemotherapy had not been effective against this kind of cancer in the past. And the fact that the tumor was so much larger was a sign of its renewed virulence.
There were times, alone or in the car, when Rachael exploded. She threw things, screamed, and cried. She never slept deeply and remembered no dreams. 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."
When daylight came, she swallowed all of that. She needed to be strong. Each day, Caroline woke and poked her mother in the back. Rachael put on a bright face and turned cheerfully to her. "Good morning," she said. "Nice to see you. What would you like to do today?"
She wanted to do everything. The beach. The mall. Caroline rode the pony Sinatra in a line competition and won ribbons. Her dance instructor put on a recital, "Calle's Big Show," and families packed the auditorium, bringing bouquets of flowers and applauding when Caroline danced and blew kisses. At home, Rachael and a parade of volunteers brought her favorite foods, cheeseburgers with extra pickles, French onion soup, sushi.
Connor, starved for attention and mystified by what was happening to his sister, was sometimes angry, sometimes solicitous, coming to Rachael with earnest eyes. "Do you want me to put my dish away? I will put my clothes away." Rachael's friends, meanwhile, told her she needed to take some time for herself, if only for a few hours. She refused.
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.
Rachael tried to live only in the moment, closing out the other thoughts that tried to beat their way in. She watched for the small signs of improvement that she felt certain could still come.
She took Caroline and a friend to the American Girl doll store one day in June. With her unsteady daughter next to her, she cheerfully, frantically, moved from display to display, taking boxes from shelves and drawers and loading them into Caroline's stroller. Dolls: Let's get them both. Pajamas: Daddy will love how you look in these. She kept up a constant chatter, tossing in more boxes and more boxes.
* * *
DAY AND NIGHT for weeks, the sounds of sluicing concrete and the gritty scrape of trowels came from behind the house. The crew knew the pool they were building was for Caroline and they saw how quickly she was declining. They worked feverishly. Now the week after the Fourth of July, Rachael saw a water truck pull in, a hose being attached, a cascade falling.
She called into the house to Connor and a friend, told them to hurry. Rachael lifted Caroline's weak body, cradled her against her shoulder and carried her outside. Around the pool was a rubble of sand and pallets of brick. Dragging a pink inflated raft, she talked brightly to Caroline about the fun they could have now and how weightless and free she would feel in the water. 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 the raft in the gradually rising water.
* * *
"DO YOU SEE GOD?" Rachael whispered. It was night. A Wednesday in mid-July. Rachael lay next to Caroline on the bed. Caroline could no longer speak and had only slight movements. Her faltering system had begun to hunger for air, and all at once Rachael came to the realization that her daughter would not live, that the chemotherapy would not work and that no new cure would come.
She had rarely let her daughter see her in tears, but now she looked into her eyes.
"Is he talking to you?" Rachael said. "Is he calling you?"
Caroline stared back at her mother and slowly nodded her head.
* * *
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. The other half they left with Caroline to be buried with her.
They had asked that the cancer be removed; the tumor might be valuable to medical researchers, but more than that, Rachael could not bear the thought of it remaining inside her daughter.
The church was packed. Kevin spoke, telling a story that made everyone laugh, of a recent day when his mischievous daughter managed, despite her failing body, to lock him out of the car. There were more stories, and prayers. As the procession made its way to the cemetery, a little crowd along the street released balloons that floated into the sky.
Family members came to the house afterward, ordered boxes of pizza, and talked and laughed. Rachael horsed around with Connor, heaving him kicking and guffawing into the pool.
She did not want to cry. It seemed too frail an expression of what she felt. A day passed and the next one and the next, turning somehow into a month and then another.
She tried just to live. Some days it felt impossible to put one foot in front of another, to do errands, open the mail. She and Kevin took down the "Believe in Miracles" sign above the front porch and replaced it with one that said, "Thankful for Norwell." They sold gold ribbons at the town soccer fields, fund-raising as hard as ever for research, posting on the Hope for Caroline site: "What is it going to take to end this? So many kids, so many."
She spent time with old friends and the many new ones she'd made during Caroline's illness and worked on "figuring out who I am now and who we are as a family."
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.
Some days, Rachael can't quite breathe. At certain times, she thinks about those last hours with Caroline, about what she saw in her eyes when she asked about seeing God.
After everything, faith is still 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."