What is hockey?
To some people it is just a sport; other people have even called it barbaric, with the hits and fights. But to a hockey player it is a way of life.
It’s the sound of the Zamboni revving its engine. It’s the feel of skates hitting the fresh ice. It’s the feel of scraping blades cutting into the ice and sticks slapping the puck. It’s the familiar, wonderful smell of opening a hockey bag full of stinky gear. It’s the way you tape your stick, tie your skates, and put your right leg into your breezers before your left — always, because rituals and superstitions are part of the game. It’s chirping your opponents during the game and shaking their hands at the end. It’s leaving the chirps on the ice and leaving the locker room as comrades. It is team, passion, big dreams, hard work, early mornings and late nights. It’s more than a love, a passion; it’s your life, its hockey.
To my son, Josh, 15, and his Cottage Grove bantam A team it is all this and more.
KARE 11 on Josh Karels: Hockey is more than a game
It is kind of ironic — everything started with hockey. Josh was born with a hockey stick in his hand and had skates on his feet before shoes. At age 4, when “real” hockey started, we could see that little bit of Gretzky in him. He was going to be the next big thing.
But when Josh was 5, the start of his second year as a “termite,” we noticed something wasn’t quite right. He didn’t have the energy he did the year before. He was tired, sick, and something wasn’t right. By the end of that hockey season, Josh had gone from bad to worse and we almost lost our little boy to a severe case of pneumonia, a collapsed lung and severe asthma attack.
Josh had been so sick for so long that his doctors ordered a barrage of tests to find out why he couldn’t fight infections. Early that summer our world forever changed. It was 2006 and my son was diagnosed with an immune deficiency. We were told that a simple sneeze could potentially kill our little boy (think of the boy in the bubble). Josh immediately started immunoglobulin IV therapy. He goes into the hospital every three weeks to get the antibodies his body does not make. It is pumped into his body over an eight-hour stay. There are a lot of side effects to this infusion and, although it is pumping his body full of the good stuff, it takes its toll on his physical well-being.
The news was devastating; however, with a lot of soul searching we decided we were not going to live a “sick” life. That meant that although Josh was a very sick little boy, we wanted him to be a normal as possible. Many people over the years have questioned our decision, but we stand firm in our belief that the smiles are irreplaceable, the lessons you learn through life are insurmountable and sometimes the “small” things, like playing hockey, are really “big” things in life. To Josh it is something bigger than the actual game itself.
Josh is the kind of child that parents can only dream of having. He’s caring and considerate, kind and helpful. He’s strong, athletic and tough. I am lucky I get to be his mom and have his incredible influence in my life. They say that kids who have mountains to climb are given a special gift. Josh is definitely a special gift to the world. His best day is our worst. To know him is to love him. He is respected, not because he demands it, but because he genuinely cares about others and treats people in a way that is not often seen. Being realistic, of course, as soon as the skates come on, some of my sweet little boy is replaced with his “Joshie Hockey” persona.
Shortly after the initial diagnosis, things went from bad to worse. After numerous tests, scopes, biopsies and procedures, my then-7-year-old son was diagnosed with Crohn’s disease. He started therapies that shut down his immune system and left him susceptible to any pathogen, infection or virus. Within six months, Josh’s large intestine was so badly damaged. Doctors at the Mayo Clinic, in a six-hour surgery, removed his entire large intestine and part of his small intestine in hopes to stop the overactive inflammation in his body.
Unfortunately, something much bigger, much more destructive was happening in my son’s beautiful body. Soon after the surgery his diagnosis changed from Crohn’s disease to multisystem autoimmune disease. Basically his inflammatory system sees his body as foreign and is destroying his healthy organs, piece by piece. The lungs, bronchi and windpipe were damaged. He breathes at a 60 percent lung capacity on his best days. Josh doesn’t have many “best” days. It moved to the stomach and skin, too.
We are seeing the best doctors in the country, maybe the world. There is no other feeling than pure desperation when they tell you that they don’t know what’s happening in your child’s body and they’ve never seen anything quite like it. The word hopeless doesn’t begin to describe the feeling you have when these incredibly educated doctors tell you they don’t know what else to do or what organ it will strike next.
Throughout this medical crisis, the one thing that keeps Josh going is his passion, his life, his brothers, his love: hockey. Despite his treatments, his 20-plus surgeries, procedures and pain, Josh skated his way to every A team, squirt through bantam. Josh is ending his club hockey career as something only for which we could have dreamed. It’s ending with a team that has become a family. These brothers and their coaches have a love and respect for the game. More importantly, they have a love and respect for each other. And in the spirit of competition it has been quite miraculous season, too.
Last spring, I started seeing a change in my 14-year-old son. Josh was tired — not the tired from doing “herbies” or a no-puck practice. It was the tired where as a mom you just know something is terribly wrong. In September, Josh was rushed by ambulance to the hospital. He was in excruciating pain. His liver enzymes were elevated and the pain was uncontrollable. After a week stay, Josh came home, only to spend the next three months making weekly, sometimes daily, trips to the Mayo Clinic. He underwent so many tests, so many procedures and yet another surgery in mid-November, trying to determine the cause of his latest issues.
Through it all Josh made every practice and game, even if he couldn’t skate. He sat on the bench and cheered his brothers on to victory after victory. While waiting for results from the tests and outcome of the latest surgery, Josh was rushed back into the hospital with another episode of terrible pain. Just two weeks after his surgery, Josh was rushed back into emergency surgery to remove a destroyed gallbladder and biopsy his liver.
He was hospitalized for three weeks. During that time we were bombarded with information regarding the spread of this mystery disease. Doctors were worried that it had spread to his liver, biliary tree (the duct system) and pancreas. We did a lot of praying, research and waiting. Up to this point the disease had struck “nonessential” organs. We could remove the large intestine, the parts of the small intestine, we removed the gallbladder. The ulcerations in the stomach wouldn’t be fatal. The lesions on his lungs made a huge impact on his overall well-being, but Josh wasn’t at a point where it drastically interfered with life expectancy. The liver, the pancreas, the biliary tree — those were crucial.
On Dec. 17, Josh’s 15th birthday, he was released from the hospital. He was cleared to play hockey as long as he listened to his body. The next day, we packed our car and headed to Duluth for the Lake Superior Classic. Our first game was a nasty one between ranked Prior Lake and the Wolfpack. Josh helped his team with a goal in a 4-1 victory.
Throughout the weekend, Josh’s body didn’t let him play as much as he would’ve liked. But he was able to play in 2½ games and scored two goals to help his team bring home the championship.
The day before Christmas Eve, the long-awaited pathology reports were back. Josh’s liver is significantly destroyed, and our time with our incredible son is limited. On top of that his pancreas and duct system are destroyed, too. We started medications and treatments to slow down the disease and get as much time as we possibly can with him.
So what is hockey to our family? Well, it’s family. It’s a community. It’s support. It’s a therapy like no other. It’s a reason for fighting, and a reason for love. It’s teammates sitting at a hospital bedside, day in and day out. It’s seeing teenage boys emotionally connected to each other and to us. It’s the high school team raising more than $1,000 for our Go Fund Me account. It’s our rival city of Woodbury sending us a card and donation for Josh’s incredible medical expenses. It’s the circle of young men, parents, grandparents… family lifting us and carrying us in our darkest hours. It’s young men learning the true definition of a teammate, friend and brother. It’s amazing young coaches who are molding our son and his team to be better, do better and cherish the “small” things, like this game. It’s a game, a sport, and it’s so much more.
Katie Karels is the mother of Children’s Minnesota patient Josh Karels. Read more about Josh on his Caring Bridge page.