It Takes a Village by Robert Kiener

It takes a village When cancer struck four-year-old Christopher Grimes, Stowe wrapped its arms around him and his family STORY:

Robert Kiener |

PORTRAIT:

Glenn Callahan

s his teachers will tell you, Christopher Grimes was that boy; the one who always looked after other students. The one who made sure everyone had someone to play with. On four-year-old Adelaide Kissell’s first day in nursery school, Christopher spotted the shy “new kid” and jumped up from his playgroup, took her hand, and got her to join in. “Christopher Grimes was a very special little boy,” says one of his nursery school teachers. Alissa Kissell, Adelaide’s mother adds, “He was just so thoughtful of others, so gentle. Everyone loved him.” So it’s not surprising that when his 23 nursery school classmates learned that four-year-old Christopher was “sick and in the hospital” they decided to send him something special. With the help of local quilters the kids put together a colorful quilt made up of squares containing their painted handprints and names, leaving one square blank so Christopher could add his own handprint and name. As students said, “This will help keep Christopher warm,” and “show him we are thinking of him.” In the center of the quilt was a poem:

GLENN CALLAHAN

I have a hand and you have the other. Put them together and we have each other. A circle is round; it has no end. That’s how long I want to be your friend.

Several days later in his room at Boston Children’s Hospital Christopher’s bright blue eyes widened when his mother Kristin showed him the quilt, covered with tiny handprints and names. “My friends!” he said as Kristin and her husband C.J. draped the quilt around their son. Kristin remembers, “It was as if all his nursery school classmates were hugging him, telling them they were missing him.” Christopher loved the quilt and often Kristin or C.J. would walk into his hospital room and see him lying in bed placing his hands over the handprints of his classmates. Says Kristin, “He’d look up and tell us, ‘This is how I know my friends miss me.’ Then he’d ask us, ‘When can I go back to school?’ ” At moments like this, Kristin, with C.J. at her side, would fight back tears, knowing that it could be a long time before Christopher could return to school in Stowe. Just a few months earlier he’d been diagnosed with stage-four neuroblastoma, a malignant, aggressive cancer that had spread to his bones. Survival rates for this rare type of cancer are, as one medical site explains, “heartbreaking,” and are between 25 and 50 percent. And because Christopher’s cancer was diagnosed as stage IV he could never be declared “cured.” The best the family could hope for was NED (No Evidence of Disease) status. Even worse, relapses are common, occurring in 70 percent of neuroblastoma cases. Few who relapsed survived. As their doctors bluntly told Kristin and C.J., “With this cancer it’s important to be realistic, not optimistic.”

BEADS OF COURAGE C.J. and Kristin Grimes, with a photograph of their son Christopher in their Stowe Hollow home. Each of these beads was given to Christopher after a medical procedure. The more simply-shaped ones represent something as common as a blood transfusion; the more ornate ones represent a more serious procedure, such as a bone marrow transplant, chemotherapy, or radiation treatments. Each bead signifies a different story in Christopher’s long battle ©STOWE GUIDE & MAGAZINE SUMMER/FALL 2014 against cancer. For more information, go to beadsofcourage.org.

But Christopher and his parents were fighters. The entire family, C.J., Kristin, and their son Daniel and daughter Gillian, moved temporarily to Boston where Christopher underwent chemotherapy, surgery to remove a tumor, stemcell transplant surgery, and more.

us on and giving us strength,” remembers Kristin. They would need every bit of that strength. In September 2009, Kristin wrote in her online journal, “It goes without saying that we are so afraid of losing Christopher. It’s simply not an option. We are going to fight as hard as we can for as long as it takes.”

••• From the moment of his diagnosis, Christopher’s friends, acquaintances, and even strangers in Stowe who had heard of his story offered to help. The family had left their home in Stowe for Boston just 24 hours after Christopher’s initial diagnosis at Burlington’s Fletcher Allen Hospital.

••• Over the next months Kristin and C.J. remained at Christopher’s hospital bedside while he underwent surgery to remove a frightening tumor that enveloped his kidney. There were many other, often painful, procedures. Throughout these

“We left the house a mess and someone offered to come over and clean it up, even scrub the toilets!” remembered Kristin. Others called with offers of food. Others did yard work. Some Stowe residents even asked if they could donate stem cells for transplants. Stowe’s Alissa Kissell opened a website so Kristin could keep friends informed of Christopher’s progress without having to answer individual emails. Stowe residents sent so many games and gifts to Christopher’s hospital room that the family and Christopher began distributing them to other children in the ward. Hundreds of local people sent cards. Many in Stowe, from all faiths, told the Grimes they were praying for Christopher. Another friend sent a T-shirt that Christopher loved wearing in the hospital as Kristin pushed him through the corridors in his wheelchair. On the front, in huge letters, it read, “CANCER SUCKS.” Throughout their ordeal, especially when the quilt from the Stowe Cooperative Nursery School arrived, Kristin and C.J. realized they were not waging this battle for their son’s life alone. “It was as if the entire town was helping us, urging

tough times a steady stream of Stowe residents visited, wrote letters, and sent gifts. The support lifted the entire family’s spirits. After surgeons removed the tumor Kristin wrote, “We’ll get our boy back, and we’ll keep him for good. There are long roads ahead of us, many of them scary and painful, but we are filled with hope. More importantly, we are surrounded by friends. I thank you all from the bottom of our hearts. I honestly don’t think we’d have been this strong if it wasn’t for the friendship and generosity of all of you.” Through the ups and downs of Christopher’s ordeal many poignant moments reminded Kristin and C.J. that their son was, as his teachers had noted, “a very special little boy.” One day as the family drove home from one of Christopher’s medical treatments in Burlington, C.J. asked him what he wanted to be when he grew up. Without missing a beat Christopher answered, “A doctor.” “Why a doctor?” C.J. asked. “Because when I grow up I want to help sick children who have cancer,” said Christopher, pausing to add, “No one should get cancer.”

Other times support would come from home, as when a neighbor sent a letter to Christopher and explained how his brave battle with cancer inspired her to finish running the 2010 Boston Marathon. She wrote, “Thinking of you and your strength guided me like a kind hand on a dark night… Without you, I don’t think I would have finished. But I did and they gave me this medal. It’s not mine, though. It’s yours, kid. Thank you for sharing your strength.” Ellen Dorsey enclosed her marathon medal and Christopher wore it for months. Support also brought some much-needed laughter to the Grimes household. On a brisk, clear early September morning Kristin looked out her kitchen window and spotted 30 pink plastic flamingos basking in the sun on the lawn of the family’s Gilcrist Road home in Stowe. An attached note read, “We are Christopher’s flock. We love sneaking onto lawns in the middle of the night.” Home between hospital treatments, the flock of flamingos thrilled Christopher. “Neat!” he shouted as he peered out the window. The Grimes family didn’t know who originally set up the flamingos, but over the next months the flock mysteriously appeared and reappeared throughout town as a testament to Christopher’s struggle. The flamingos popped up at the Stowe Reporter office, the Stowe Community Church, the Stowe Police Department, high up on Mt. Mansfield, and elsewhere. After someone stole the flamingos the newspaper ran a story, explaining their significance. They were immediately returned. Because continued research would hold the key to finding a cure to neuroblastoma, Kristin, C.J., and many others helped raise money by sponsoring bicycle rides, holding bake sales, raffles, and other events. Christopher’s school sold pink plastic flamingos and donated the profits. As Kristin once explained, “We are up against the impossible, but we are people who believe in the impossible.” They were literally racing to save their son’s life. After an anonymous donor sent in a check for $15,000 Christopher emptied his piggy bank, counted out the entire contents of $21.55, a year’s worth of savings, and handed it to his parents. “I want to help kids like me,” he said.

LARRY ASAM PHOTO

PINK FLAMINGOS Next page, clockwise from top: Christopher stands amid a flock of pink flamingos in front of Stowe Elementary School. Over 500 flamingos were sold through the school and the Grimes family donated the money to the Neuroblastoma and Medulloblastoma Translational Research Consortium, which specializes in research and clinical trials in relapsed neuroblastoma. A 2012 portrait of the Grimes family, with Kristin, Daniel, Christopher, C.J., and Gillian. C.J. comforts Christopher during treatment. Inset: A Flashes of Hope portrait of Christopher. The organization photographs kids with cancer and funds research “so they will have the chance to create a lifetime of memories.”

••• On Jan. 11, 2011, after 17 months of grueling medical treatment, the Grimes’ got the good news they had been waiting, hoping, and praying for. Christopher was officially classified NED. Overjoyed, Kristin wrote, “There were a few times that I thought he wouldn’t live through the night. That he would be gone forever… Thank you all for your prayers, your friendship, your support, and for believing. It worked.” Christopher reached a milestone but he faced more chemotherapy, more treatments, more tests 75

THE SHAVED HEADS CLUB Next page, clockwise from top left: Some of Christopher’s friends shaved their heads in solidarity after he lost his hair for the second time. Kristin, Christopher, and C.J. skiing at Mt. Mansfield. Christopher’s body has long and deep scars from various surgeries and the constant set of tubes hanging from his chest to administer chemotherapy and blood transfusions. Despite the scars he always wore a big smile. Christopher Stephen Grimes, Sr., Christopher Stephen Grimes, Jr., and Christopher Stephen Grimes III, in Florida, 2013. Christopher and his friend, TJ Guffy, of Stowe, enjoy a wild roller-coaster ride. Inset: Classmates and friends surround Christopher on his last visit to Stowe Elementary School.

on his long, bumpy road to recovery. The odds were not in his favor, but the family’s spirits buoyed when they learned of a Stowe teenager who had survived relapsed neuroblastoma. Kristin soon adopted the motto that had given the girl’s mother strength: NGUNGI: “Never Give Up, Never Give In.” As Christopher’s story spread throughout Stowe, Kristin grew used to hugs from friends and strangers, who had read her online journal, whenever she went into town. “People often

don’t know what to say and they will just give me a hug and a smile and walk away,” said Kristin. “I understand. This is a small New England town and people care. That’s enough. There’s a closeness here.” That September the Stowe Community Church held a prayer service for Christopher. “This was held by people we didn’t even know,” explains Kristin. “We were so touched by that.” In the spring scores of daffodils popped up on the Grimes’ side lawn. “Someone must have planted them when we were in Boston,” says Kristin. “Other people dropped off fresh bread or a bottle of wine or flowers. No one wanted any thanks or recognition.” ••• “Not good.” On Oct. 11, 2012, Kristin used those two simple words to tell her journal readers the impossible news. “It’s back,” she wrote. “Christopher’s scans today show a mass on his ribs.” Then, terrified that her seven-year-old son had relapsed, she added, “Please pray for Christopher. This can’t be it. It just can’t be.”

But it was. A day later surgery confirmed the return of the neuroblastoma. This was uncharted territory. As Kristin wrote, “Relapsed neuroblastoma is not the smiling bald heads. It's a painful treatment that is done in hopes of keeping you alive until that miracle drug is found. As a parent, it’s nothing short of agony. Well, Christopher is doing too good to sit back and do nothing. So put on your running shoes, Cancer. I’m coming after you.... AGAIN! And this time I won’t take no for an answer! Be afraid. Be very afraid.” At the top of her journal entry she posted a picture of a shirtless Christopher smiling bravely, perhaps defiantly, into the camera. His small chest was crisscrossed with scars, bruises, and an array of bandages from his recent surgeries. The race against time was now even more urgent. If there was one thing that brought a smile to Christopher Grimes’ face it was the chance to go to school and see his friends, most of whom he had known since nursery school. But because of his frequent hospital stays and home confinement, he had few opportunities to go to school. “I miss my friends,” he would often tell Kristin or C.J. “When can I see them?” “Soon,” they would answer. “You just need to get a little stronger.” When chunks of his hair began falling out from chemotherapy Kristin decided to have his head shaved. “Nooooooooo,” said Christopher. “The kids will laugh at me.” “Honey, no one will laugh at you,” Kristin reassured him as she tried hard to hold back the tears. “They are your friends.” After the village barber finished shaving off his hair, Christopher pulled his baseball cap down tightly on his bald head, still terrified that his schoolmates would make fun of him. As C.J. drove him to school Christopher said, “They’ll laugh at me dad.” Christopher got out of the car slowly, held his father’s hand tightly and walked hesitantly to the school entrance. “Dad, I’m scared,” he said as he tightened his grip. Suddenly the front door opened and Christopher spotted his best friend, Evan

Reichelt, rushing out to greet him. He too was completely bald. His mother had shaved off Evan’s thick blond hair to support Christopher. Christopher ran free from C.J., tore off his cap and shouted, “We’re both bald, Evan! How cool is that? How cool! Bald is cool!” Five of Christopher’s other classmates also shaved their heads in solidarity. After all, he was their friend, their classmate, and he had come back to them. When Kristin heard the news she couldn’t stop crying. Tears of joy. “This town,” she told a friend, “is unbelievable.” ••• The cancer was relentless. A new tumor on Christopher’s spine resisted both radiation and chemo. The cancer spread throughout more of his body. His immune system crashed. Despite his weakened condition, Christopher begged Kristin and C.J. to take him to school for a short time each day, “so I can see my friends.” His second grade classmates took turns pushing Christopher in his wheelchair, whooping and hollering. Surrounded by his classmates, Christopher came alive. His big blue eyes sparkled and he roared his trademark belly laugh when someone would push him roughly around the playground. But at home, alone with his parents, he was more somber, often frightened. One night in August he told Kristen, “I don’t want to be dead. I’m too young to die.” As Kristen wrote in her journal later that evening, “We hold him as gently as he can tolerate and tell him that we are doing everything to not let that happen.” ••• Christopher Grimes lost his fight against cancer just a little after two in the morning on Sept. 5, 2013. Kristin and C.J. were at his bedside when he died, just as they had been throughout the last four years. Kristin later wrote, “There will be no more pokes, no more chemo, no more hospital stays masked as vacations, no more wheelchairs, no more of his tears, no more scans, no more worrying if he will die.” In their eight-year-old son’s obituary C.J. and Kristin thanked the citizens of Stowe when they noted, “Christopher was embraced by a very generous and warm community.” They buried him with the quilt, the one covered with the tiny handprints that his nursery school classmates had made, bundled around him. That way, says Kristin, “He will be wrapped in hugs forever.” ■ ••• The Grimes family, C.J., Kristin, Gillian, 5, and Daniel, 4, continue to honor Christopher’s memory by raising money (more than $75,000 so far) for neuroblastoma cancer research. For information on their fundraising and to read Kristin’s account of Christopher’s story see caringbridge.org/visit/christophergrimes. 77