Despite a decade of serious sickness, 15-year-old Josh Karels has made nearly every hockey practice and game, and if he was too unwell to play he was there at the rink, anyway, supporting his teammates. He says hockey saved his life.
By Jason Buckland
For more than a year now, the filing system at Central Pediatrics in Woodbury, Minn., has become completely electronic, each of the clinic’s thousands of patient medical charts having been transferred to computer. In the centre, doctors use the new e-records to point and click, to search and sort, to provide better, more organized care. Yet there was a time not long ago, when Dr. Carrie Pettey was first beginning at the clinic outside St. Paul, one patient required a hard-copy file thick enough it had to be lugged around the office. Inside a tattered manila folder was a medical history so complex it seemed to take on a life of its own, oozing at the margins and bursting at the seams. “It was barely being held together,” said Dr. Pettey. “It was about ready to fall apart if you were to lift it.”
The file belongs to a 15-year-old boy named Josh Karels, a great-looking teen with piercing blue eyes, a tuft of brown and blond hair, and a thin smile just knowing enough to make those he flashes it to swoon. Central Pediatrics finally retired Josh’s paperwork to a storage facility nearby, but Dr. Pettey still must confront the overwhelming file often. That it is on a computer now makes it no less alarming. Josh’s medical history scrolls forever.
Josh has been sick for longer in his short life than he has been well. He was ill almost from birth, but at five he began suffering from a string of maladies so troubling that his parents, Andy and Katie, knew the sicknesses could only forecast something much darker. First it was fatigue, then it was pneumonia, a severe asthma attack, a collapsed lung. In the hospital, Josh’s pulmonologist looked at the boy’s parents and warned, “Something is not right here.” Doctors identified that Josh had hypogammaglobulinemia, an immune deficiency disease ruthless enough that his mom and dad say they were told a stranger’s sneeze could kill their son. If only that were it for Josh. An army of tests were ordered for the boy, and each result seemed only to offer a more unfair diagnosis. Josh was soon told he also suffered from Crohn’s disease, however later, after surgery to remove his entire large intestine, he was told it was not Crohn’s but something far worse: multi-system autoimmune disease. Josh’s body was rejecting itself, destroying its own lungs, bronchi and windpipe. There was so much inflammation growing inside the boy that some days he could scarcely breathe. Josh had always been tough. When he was three, his mother watched in horror as Josh smacked into a wall playing baseball in their home. Katie panicked when she saw the blood, though Josh, as only he could, set her at ease on the drive to get stitches. “It’s okay, mommy,” he said through a smile. “I good baseball player.” Katie could breathe easy then, though her and Andy have had no real chance to catch their wind since. Josh keeps getting sicker, his medical challenges graver, and nobody can quite be sure how much longer he has left. “His disease, unfortunately, is changing with time,” said Dr. Pettey. “It is not getting better with time.” Josh speaks in a slow and measured tone. He doesn’t sound sick; he sounds 15, kind and thoughtful but not yet thrilled with the idea of talking at length about himself. But there is one topic where his pace picks up in conversation. He’s happy to chat about all the best parts of the sport that has captured his soul — the locker rooms, the teammates, the open ice beneath his skates. As Josh’s health deteriorates to an end nobody can know for certain, he’d like the chance to talk about hockey, which he says has saved his life.
Josh Karels was born in 2000 like many children are in Minnesota: stick in hand, skates fitted for his feet nearly before even his first pair of shoes. And yet, what hockey means to the young boys and girls of the state cannot truly capture the role it has played for Josh. For ten long years, he has laboured through terrible illness, the kind of awful medical misery that precisely zero of his peers have been asked to endure. Throughout, the only constant in his life, aside from his smiling family and the unending medical attention he has required, has been hockey. “When I’m on the ice, I don’t think about not feeling great that morning,” Josh said. “If I was in pain and I came to the ice, I wouldn’t feel it (anymore). I’m having fun playing hockey.” The sport has always been Josh’s barometer through it all. The first time Andy put skates and a helmet on him, positioned behind a chair atop a patch of ice near the family home, Josh wiped out and looked up toward his father. “My dad said, ‘You just gotta always get back up every time you fall,'” Josh said. “I use that as a motto.” Indeed, there is no part of Josh’s story more remarkable than his resilience toward the game he loves. He has not only continued to play hockey most every moment he’s not laid up in the hospital, he has excelled, proving to be one of the most skilled players at his age no matter the rigors his body is under. Over the past decade of sickness, Josh has made nearly every practice and game, and if he was too unwell to play he was there at the rink, anyway, supporting his teammates. His presence and strength means more to those nearest him than he likely knows. “As a coach, you’re supposed to influence these kids’ lives,” said Alex Chuhel, head coach of Josh’s bantam hockey team in Cottage Grove, Minn. “But you’d never think you’d have a player influence yours as much as (Josh) has.”
Josh tends to disarm those he meets, especially those that know about his health. He is fit and looks that way, and by simple appearance alone he seems perfectly normal. “You walk into the room with this big, heavy chart, and a computer in your other hand, and you would say to yourself you were going to see this sickly teenager,” said Dr. Pettey. “And you walk in, and you see this bright-eyed, happy, smiling, humble kid.” His appearance and performance in hockey betrays what is going on inside him. To date, Josh has had more than 20 surgeries, and when he has not been on the operating table he has been on the road, often staying for weeks near the Mayo Clinic south of Minneapolis, more than 90 minutes from home, while doctors search for a way to slow what is happening to him. He has never found stability. Josh’s medical challenges are always changing, evolving, worsening. Last spring, his parents noticed a fatigue in their boy that they have learned can only mean danger is not far off. In September, Josh was sped by ambulance to the hospital in excruciating pain. His liver enzymes were spiked and the pain was uncontrollable, but to Andy and Katie that was almost all anyone seemed to be able to tell them. Josh stayed in the hospital for a week, only to come home and spend much of the next three months back at the Mayo Clinic, under more tests, more procedures and yet another surgery to ease the source of his pain. He spent every moment he could with his team, the Wolfpack, but that autumn was a difficult season for Josh. His suffering returned, and in December he was rushed into emergency surgery to remove a destroyed gallbladder. Doctors found the disease inside him, whatever it was, was spreading. Lesions were discovered on his lungs, and there were ulcerations of his stomach, but those would at least not be fatal. Only test results could show for sure if the most crucial parts of him — his liver, pancreas and bile ducts — were affected. On Dec. 17, his 15th birthday, Josh was finally released from the hospital. Perhaps more importantly to the restless boy, he was cleared to play hockey once again. The very next day, the Karels family packed up the car and drove north, to Duluth, for a tournament. Of course Josh’s team won his very first game back, and of course Josh scored a goal. He couldn’t be on the ice the entire weekend, but over two-and-a-half games he netted two pucks into the net and the Wolfpack won the tournament title. It was, for Josh and the Karels’, a moment of happiness, a few days before the holidays where, if the family could not let their minds ease over the pending results about Josh’s fate, they could at least enjoy Josh’s being on the ice, where so much of the good in his life has come. The day before Christmas Eve, the bubble burst. Josh’s tests showed that his liver is significantly destroyed, his pancreas and duct system compromised, too. He began medication and treatment to slow the damage, but the diagnosis seemed to confirm what the boy’s body had been telling him all these years. Doctors call what Josh has autoimmune hepatitis and primary sclerosing cholangitis. There is no known cure for either. “He knows that he’s not going to be here very long,” Katie said, her voice becoming overwhelmed now by emotion. “He’s shared that with us. But he also knows heaven exists. He’s not afraid of dying. He’s afraid of losing us.”
Andy and Katie have often been asked one thing, over and over: why, with all Josh is going through, have they allowed him to continue playing hockey? It’s an innocent question, meant often with the right intention, but it hurts the parents each time they hear it. Not once, the couple said, have doctors cautioned Josh against playing hockey, and in fact Josh’s pulmonologist told Andy and Katie the sport is the best one he could play; the cold rink air helps open Josh’s lungs for him to breathe. But more than that, the question attempts to answer a philosophical point about parenting a sick child, and Andy and Katie know enough about Josh’s future that they’re sure what they believe is right. “‘How can he play hockey?'” Katie repeats. “We wonder, what is the alternative? To bury your head and sit there and ask ‘Why me?’, and sit there and feel sorry for yourself? No way. This is what it is. We’re going to move ahead, and we’re going to enjoy today because we have it.” Josh is a light in their lives, but Andy and Katie have had a rough go raising the boy. The time, the hospital stays, the long drives and overnights in foreign cities so Josh can receive the care he needs — those things they can handle. Financially, however, they are in near ruin. Katie left her teaching job to become Josh’s caregiver, and while Andy has a good career in IT with health benefits, the coverage fails to pay nearly what Josh’s bills require. The couple figures, over the past decade, they have paid an additional $25,000 per year out of pocket for Josh’s care. Where once there were savings, there are none. Credit cards are maxed. The family is awash in debt. “We were months away from losing the house,” Andy said. Andy and Katie had done everything right in life. They had worked hard, gone to college, secured good jobs and saved their money. And now? “It’s really hard to let people know how bad it is for us,” said Katie. “We’re not those type of people.” Andy adds: “It’s kind of embarrassing sometimes, you know?” The money may be gone, but Josh is still here. There isn’t a moment that passes when Andy and Katie, and their other children, Ryan, 12, Gracie, 9, and Natalie, 6, take that for granted. One day, back in 2006 when he first fell ill, Josh and his mother spoke about his sickness. Katie struggled to understand what God was doing to her boy. She was upset. Years later, after all their time together, the tears and the stress and the fear, the anger is gone. “I’m not upset anymore,” Katie said. “I’m just sad because I’m going to lose my baby.” Amazingly, her and Andy feel fortunate about their lot in life. “I mean, how lucky are we as parents?” Katie said. “It’s just an honour to be with Josh.” Josh fights on, uncertainty all around him, but damn does he fight. Hockey season has wound down for the year, which often triggers a unique depression in the boy, however Josh has off-season training, summer camps and a net at the end of his street to keep his mind busy. He has no other choice. His fight to keep playing hockey has come to symbolize his fight in life. To continue at the sport he loves, he has had to work harder than anyone else, to push to a higher level of conditioning and strength and stamina, to reach a point where the unthinkable burning in his body allows him to push through to get on the ice for however long he can last. How else should he live? “If I quit hockey,” Josh said, “I’d just be quitting everything then.”
To give what you can to help Josh and the Karels family, please visit GoFundMe.com/SaveJoshKarels.