Photo: Brian Thompson/Brantford Expositor
Past their bedtime, two boys press their feet into sneakers and leave the house to say what they expect to be their final words to their seven-year-old brother. In the living room, Christmas has been happening for months, the tree long bedazzled and toys well tested. The neighbouring houses, too, are decked with wreaths and Nutcrackers, as are nearby shops and streets. The town of St. George, Ont., has been celebrating Christmas early because doctors say seven-year-old Evan Leversage won’t live to see it.
After the brothers leave with an aunt, Evan’s mother, Nicole Wellwood, can hear herself swallow in the silent house. Siren-equipped trucks congest the floor and Kangaroo Jack spins in the DVD player, but there are no sounds. Grape-scented syrups line the kitchen counter next to the largest tin of spaghetti and meatballs she ever did see, but there are no smells. Three boys live in the house, the carpet optimal for somersaulting and mattresses prime for bouncing, but there are no movements, no little monkeys jumping on the beds. The place is stunned, the fridge calendar blank.
Nicole, a single mother, will soon follow her sons to the hospice to say goodbye to Evan, who has been taken off life support after unsuccessful treatment of brain cancer. Nicole is home calling pallbearers, after already phoning a funeral home and cemetery. Most painfully, she’s chosen a casket. “None of them seemed like it was good enough for him,” she says. “I want to give him the best celebration of life. He wouldn’t want the tears and the gloomy.” She decides on an adult-sized casket so Evan can be buried together with her friend’s dog, Periwinkle, whom Evan adored but was hit by a car three days earlier.
Nicole will spend the night curled up with Evan in his hospice bed, like she’s done every night since he was born in either her queen-size mattress, his own Buzz Lightyear-themed bed, or on hospital couches. “We always seemed to find our ways to each other,” she says. “We more or less had the I-love-you war right before bed: ‘I love you more, I love you most-est.’ I hugged him and kissed him all night long.”
When Evan was one year old, Nicole gave him a stuffed penguin named Baby. He towed Baby to the bathtub, grocery store, backyard, bed and everywhere else he went. Yet, by the time Evan was nearly two, he still couldn’t say Baby’s name, nor any other word or sound. “He never did the goo-goo, ga-ga,” says Nicole. “He wasn’t meeting his milestones.” When Evan’s right eye started to droop, Nicole took him to their family doctor, who referred him for an MRI.
At the moment Nicole heard the results, Evan was sitting on her lap in the doctor’s office, wanting to drink or play. The doctor showed her shadowy images of a brain tumour, an inoperable glioma, which the family would forever refer to as “the Bump.” Her life changed the second the doctor named it cancer. “It was not after that second,” she says. “It was at that very second.” Doctors then performed a biopsy and explained the chemotherapy plan and expected symptoms, saying Evan had an 80 per cent chance of living five years or longer.
Just after Evan’s second birthday, he began 72 weeks of chemotherapy at a children’s hospital in London, Ont. Each Wednesday, Nicole drove Evan and Logan, his brother who is two years older, in their car seats to the clinic, where doctors injected a dose of vinblastine, a chemotherapy drug also used to treat breast and bladder cancer in adults, into a port in Evan’s chest. Evan’s blond hair fell out, and he was admitted to hospital after each of his two surgeries—once for the biopsy and a second time to have his chest port inserted. Whenever he caught a cold or infection, he had to move into an isolation room.
Yet Evan was a toddler who couldn’t be rattled. In isolation, in his infant-sized hospital gown with the sleeves rolled up, he stared through the glass door and played peek-a-boo with nurses in the hall. On the ward, he liked to explore the children’s unit with his family support worker, Renee Simmons, who helped relieve Nicole by watching over Evan as he ran up to cleaning staff and nurses at their stations, always with Baby in tow. “He just liked to visit and check in with people,” says Simmons, who works with a charity called ChildCan. Evan constantly wanted to be with people, earning him the nicknames “Mr. Congeniality” and “the politician.” When he figured out that Simmons left his side whenever he fell asleep, he started going to bed holding onto her foot.
In recent years, childhood cancer has grabbed attention in popular fiction, from John Green’s The Fault in Our Stars to Jodi Picoult’s My Sister’s Keeper and Ann Brashares’s The Sisterhood of the Travelling Pants, all of which were made into movies. However, public awareness of childhood cancer, which is symbolized by a gold ribbon, is still sparse. “I frequently get the comment, ‘Wow, children get cancer?’ ” says Mark Greenberg, a Toronto oncologist with the Pediatric Oncology Group of Ontario. “There’s still a perception that it’s a disease of old people,” he says. “And it is a disease of old people, but that doesn’t mean it doesn’t occur in children.”
In Canada, 10,000 children aged 14 and under are being treated for cancer, which is the biggest disease killer of children in the country. Among the 11 main types of childhood cancers, leukemias are the most common, followed by tumours in the brain and central nervous system, like Evan’s.
Children have a 70 per cent long-term survival rate (nearly double that of adults). That’s the good news, says Greenberg. The bad: it means they have to deal with lifelong symptoms much longer. “The short-term effects are similar to adults but the long-term ones have more impact. Children are incompletely developed, so problems with hearing, kidneys and brain function are more likely to happen in kids.”
After the six months of treatment, a brain scan showed Evan’s tumour had stabilized, and his life became closer to normal. He learned to swim with water wings; he went to see Minions, and he danced to the music of Justin Bieber and Deadmau5 in the living room, always with wonderfully unpredictable choreography. “He would bust moves like you wouldn’t believe,” says Nicole. “I’ve never seen anything like it.” Evan was also transfixed by trucks, tractors and Periwinkle, the pug-beagle puppy belonging to Nicole’s friend, Liz Hanchiruk. For laughs, he often stuck out his bottom jaw to give himself a pug-like underbite, making “the Periwinkle face.” And at Hanchiruk’s family farm this summer, Evan befriended the cows. “Cows don’t normally let you stay close to them,” she says, “but no, these cows were quite interested in Evan.”
Although his right side was weak and he couldn’t learn to ride a bike, Evan ran around with his brothers and grew at an average pace for years. By age six, Evan was up to mischief like planting plastic bugs in his grandmother’s bed, sliding ice cubes down his aunt’s shirt, and slipping an open ketchup packet into a paramedic’s pocket. At the Tim Hortons drive-through, he often convinced his mother to ask for “toasted pickles.” “Sorry, we don’t serve those here,” some clerks joked back, sending Evan into hysterics. With his grandmother, Linda Wellwood, he played freeze tag and watered the garden. “We had lots of good adventures,” says Linda.
Although Evan went to kindergarten, he was often excluded. Even the most curious kids shied away from the boy who sometimes had a feeding tube instead of yogourt tube and, later, a wheelchair instead of a bike. In his seven years, Evan was invited to just one kid’s birthday party. Since he missed too much school to keep up with the class curriculum, he often listened to audio books in an igloo-shaped tent designated as his own.
A nurse visited Evan’s classmates to try to help them understand his diagnosis. “A lot of the classmates are withdrawn,” says Vicky Wilton, a member of the POGO (Pediatric Oncology Group of Ontario) Interlink Nurses, a unique team of nurses who visit classrooms of patients and their siblings. “They either ignore the child or bully them. It happens with adults, too, but kids are a little more blatant about it.” Because the children with cancer miss out on fun times, says Wilton, “they’re really afraid they’re going to be forgotten.”
Thankfully, Evan’s teachers showed great support, visiting him at home even during a teachers strike and making books with their students with titles like “Evan and the Great Pumpkin Rescue.” Meanwhile, Evan’s brothers—Logan, now 9, and Tyson, 5—were reliable pals. When Evan needed an eyepatch this fall, Logan wore one, too.
Evan’s cancer radically affected his family. Before the diagnosis, Nicole had worked several part-time jobs, but once Evan became ill, she did not work a regular job and for many years didn’t have time to pursue her plan to finish high school and study criminology. (She had dropped out of school at age 16 after her father collapsed dead in front of her, due to years of alcoholism. Nicole had already watched him battle cancer years earlier. “I just felt that life was so crappy and so unfair,” she says.)
Nicole separated from Evan’s father around the time of the diagnosis, though they had Tyson together two years later, and the father has stayed in contact with the boys ever since. She received support from her mother, Linda, a psychiatric nurse, who bought her a house and helped her move from the family’s hometown of Stratford, Ont., to St. George, where Linda worked, so the family could stay together. However, many other parents Nicole knows face financial hardship during their children’s treatments. Since 2014, most provinces require employers to give caregivers 37 weeks per year of critically ill child care leave, and the same goes for the federal government. Yet, many who lost jobs before the legislation changed still feel losses, and British Columbia and Alberta still only require employers to give eight weeks leave. “I think there needs to be a huge change in mindset,” says Tracy Williams, a single mother of two who was laid off for missing work on Wednesdays to take her 11-year-old daughter to chemotherapy treatment.
For Logan and Tyson, Evan’s diagnosis meant tagging along to appointments, hospital visits and rushes to the emergency room. The boys often came home after school to find friends or relatives ready to take care of them, as their mom was at the hospital. When Evan was home, the boys had to play quietly so he could sleep, and they often missed out on reading with Nicole before bed. “I’ve tried to shield them from it,” says Nicole, “but they battle cancer, too.” Aside from Logan playing in a soccer league in the summer, the boys have done no formal extracurriculars. Despite their unusual lives, says Nicole, “they’ve never once complained about being dealt this card.”
All of Evan’s family, including his grandparents and cousins and Nicole’s best friend, went through the highs and lows of his treatment. Last September, with Evan’s tumour stabilized, Nicole finally returned to school to finish the four credits she needed to graduate. “His scans showed no change so I thought this is great. I really believed in my heart.” But in February, a scan showed the cancer was back, this time as a high-grade glioma. Evan immediately left kindergarten for a plan of 35 weeks of chemotherapy and radiation treatment. Though additional medication prevented him from feeling nauseous, he slept for hours most days and needed a feeding tube and wheelchair. “You’re up and you’re down and you’re spinning around,” says Nicole. “Then you feel like you’re going to be sick.”
Evan’s bedroom closet almost looks like that of his brothers. Polar fleeces and dress shirts hang in seasonal sections, while boots and water guns layer the floor. But on the top shelf, next to the board games, there is a bag containing two lattice masks—moulds of Evan’s face, sloped at the nose, cheeks and chin. During radiation treatment, doctors placed one of these masks over Evan’s face and secured the sides to the table to keep his head still. After he gained weight, he had a second mask made. “They are real, and they are child-sized,” says Nicole. “Once we got him down on the table and he had his head bolted down, I’d read to him from the other side of the glass.” Evan’s book of choice was Alligator Pie by Dennis Lee.
Evan’s skin soon became raw, as though someone rubbed sour candies onto a dry sunburn. Meanwhile, the steroids he was taking made him so hungry that he gained 35 lb. within two months and grew purple stretch marks across his body. When he lost most mobility on his right side and began using a wheelchair, he coped with his frustration by designating his left arm as “karate chop arm,” which would chop up paper that his brothers held before him. “I never saw him feel sorry for himself,” says Linda. “It was all just part of his little life.”
On April 21, doctors called Nicole into a private hospital room and told her they were going to stop treatment.
Children rarely get radiation treatment, as they can suffer severe growth disorders and brain damage from it. The treatment kills dividing cells, which helps stop cancer from spreading but also kills the dividing cells that kids need to develop. With more research, doctors hope to target radiation beams more narrowly and eventually identify the abnormalities in DNA that cause many forms of childhood cancer. Because childhood cancers tend not to result from a broad range of environmental or lifestyle factors but rather specific mutations in embryonic tissue, researchers may have better chances at understanding their causes than those of adulthood cancers. “There has to be more consistencies between cases,” says Greenberg. “We just don’t know what they are.”
Despite the radiation and chemotherapy, Evan’s cancer advanced beyond reversal. On April 21, doctors called Nicole into a private hospital room and told her they were going to stop treatment. They said Evan had around six months to live. Nicole went quiet and stared at the floor. A few days later, nurses gave the news to Evan himself. “They told him there was no more medicine that could make him better,” says Nicole. “Obviously they had to explain why Mummy was crying all the time.”
The town of St. George had already held Christmas once so far in 2015—in July, when a Hallmark movie was filmed in the town and required a holiday-decorated Main Street. But another unusual Christmas was coming, this time in October and for a far more special reason.
Two weeks after Evan’s seventh birthday in September, an agonizing headache sent him to the emergency room. His decline from that point was rapid. With his right side limp, Evan stuck more closely to his wheelchair and slept away long stretches of his days. Nicole asked him for a wish list. “What Evan wanted was very simple,” she says. “He wanted to go to the movies and go to Wacky Wings and Chuck E. Cheese’s.” Evan never thought to ask for an early Christmas, but Nicole thought it would be nice to suggest the neighbours put up decorations and give Evan one last holiday season.
Within days, the whole town was lit up, some houses with signs saying “Merry Christmas Evan,” others without the signs, for everyone knew why they were decorated. Shelly Wellwood, Nicole’s cousin, started a Facebook page to encourage Christmas celebrations. When the local police station offered to take Evan for a ride on a fire truck, Shelly got an idea. “I thought we might turn it into a little parade sort of thing.”
Over the course of two days, 1,300 people said they would attend a Santa Claus parade, to be held on Oct. 24. Shelly asked Russell Press, a special events coordinator at the local city council, to take over the organization effort. He agreed, without foreseeing that the “parade sort of thing” would go global. By the next morning, 6,000 people said they were attending, and Press was snowed with 240 requests to contribute floats. At Nicole’s advice, Press capped the parade at 25 floats so Evan wouldn’t get overwhelmed. “Boy oh boy, we could’ve had floats from Buffalo, New York, overseas even,” says Press. “Where do you put 240 floats? The route would’ve had to be up and down every street, and then where do you put the cars?”
Seven thousand people showed up to watch the parade—more than triple the population of St. George. In the procession, Cindy Lou Who walked a dog painted Grinch-green; Spongebob gave hugs; a band marched, firetrucks honked, and Evan caught a ride on the float holding Santa’s sleigh. Although the temperature was 17 degrees, a special effects company donated a machine to blanket Evan’s lawn with artificial snow. Locals brewed hot chocolate and baked cookies to pass around the crowd.
Behind the scenes was a massive coordination effort. Parade day coincided with a hockey tournament, multiple gala dinners and a wedding in St. George. The local church and Legion donated parking space; a company donated portable toilets, and the city relocated all the garbage cans to border the parade route. Press and his team worked 18-hour days with no extra pay, sitting in the situation room of the fire department to prepare safety and emergency procedures. Since all of St. George’s police and firetrucks were part of the parade, a neighbouring town lent emergency vehicles to be on site. “It was a complete mobilization of unseen proportions,” says Press. The event touched places beyond St. George, as people around the world hoped to give a little boy one last Christmas. Mail came from Australia, Israel, Afghanistan, Hong Kong, Iran and other places that don’t even celebrate Christmas. The letters weren’t all in English, but Evan appreciated each one, along with every Facebook message and video. “Evan’s fondest time of day was when the mailman came,” says Nicole.
The Bieber family sent a Batman hat; Ashton Kutcher sent a card, and Walter Gretzky met Evan personally. A family friend organized a limo ride to Toronto, about two hours away, where Evan explored an aquarium and watched a Maple Leafs game. “He fist-bumped the players as they went onto the ice,” says Nicole. “The Leafs won that game 4-1. That was a miracle in itself.”
A GoFundMe campaign to raise money for the family, which only intended to raise $1,500, has now raised more than $50,000. Evan’s supporters have also joined the Gold Ribbon Campaign, which sells ribbons and convinced the CN Tower to light up in gold once each September. In the middle of the Christmas celebrations, Evan’s family also celebrated Halloween, which is Logan’s favourite holiday. Evan trick-or-treated as a zombie doctor in his wheelchair for an hour before tiring out, and later, neighbouring kids stopped by to share their candy.
Evan enjoyed his last Christmas dinner. Since he doesn’t like turkey, he had popcorn chicken and fries, eating together with 70 family members and friends at a nearby country club. For the following weeks, Evan and his brothers opened presents each morning, the gifts marked with postage stamps from all over the world.
Evan’s Christmas came at the right time. The following Saturday, he switched from living to surviving; he could no longer keep down food. “At first we thought he was just having a bad day,” says Nicole. At 10 p.m. that night, while reading with Nicole in her bed, Evan lost consciousness. “I screamed and I tried to wake him up,” she says, “eventually, a couple minutes later, he opened his eyes. I asked him to stay with me.”
Linda sped them to the hospice in St. George for early admittance. As they drove away, Evan woke up to say goodbye to St. George, and on the way out of town, asked for a McDonald’s Happy Meal. The next day, on Nicole’s birthday, he entered a deep sleep. “I did believe he’d wake up and I’d get that ‘hello Mummy,’ ” she says. He hung on that night, but in following days could manage only a nod of the head or squeeze of the hand. “The minister came to reassure him that he’ll be okay,” says Nicole, crying silently, “we’re all going to be okay.”
Alone in the living room, with Evan at the hospice, Nicole is numb to the space around her. It’s 8 p.m. or it’s midnight. It rains or it doesn’t. A helium Spongebob balloon clings to the ceiling; another has shrivelled to the floor. Her boots are on, but she could never be prepared to leave to spend her last night with her seven-year-old boy. Together they’ll curl up in the hospice bed amid comforters, pillows and a stuffed penguin, Evan hanging onto his Baby and Nicole letting go of hers.
After drifting in and out of sleep for about three weeks, Evan Leversage died on Dec. 6, 2016, in his mother’s arms.