“Kids Cancer Care is the smile you haven’t seen on your child’s face for a while. Their worries melt away and you get to see that happy smile again.” — Kaila
Jack and his twin brother Adam had just celebrated their first birthday. They were busy little guys, following in the footsteps of their big sisters Aiya (3) and Nora (2). Jack and Adam were both walking at 10 months, so when Jack suddenly stopped walking and reverted to crawling, his parents Kaila and Calvin Harapnuk were concerned.
Although they were worried, it wasn’t the crawling that troubled them most. Jack had stopped sleeping at night. “He was fine during the day,” says Kaila. “But he wouldn’t lie down to go to sleep at night. One of us had to hold him upright or he’d cry all night.”
“We could see he wasn’t as happy, but we didn’t know what was going on,” says Calvin.
As the nights grew worse and Jack’s distress melded into days, the Harapnuks grew increasingly concerned and took him to see a pediatrician. The pediatrician thought Jack may be experiencing joint pain from a build-up of inflammation from a cold.
On the August long weekend in 2019, the Harapnuks were referred to emergency services at the Alberta Children’s Hospital. The consensus seemed to be that it was joint pain from a cold, but the neurologist on duty wasn’t comfortable sending Jack home, so he ordered an MRI for the next day.
The MRI revealed a massive tumour encompassing the entire right side of his abdomen. Jack had stage 4 neuroblastoma. They started him on emergency chemotherapy the next day. The goal was to shrink the tumour with chemo and later remove it in surgery.
Jack would spend 200 days in the hospital, undergoing multiple surgeries and multiple rounds of chemotherapy and radiation. There were many scary times when it looked like Jack may not make it — when his white blood cells were dangerously low or when his oxygen levels were plummeting, and he needed to be intubated in the PICU. These frightening moments were woven with interludes of hope and prayer.
Calvin would take a short leave from work while Kaila paused her home-based business. With four children under the age of five, juggling work, household duties, and extracurricular activities while also caring for a child with cancer was emotionally and logistically overwhelming.
Caring for a child with cancer is like living in pandemic times. Families are forced to isolate for months at a time because a cold or flu could be fatal for a child with compromised immunity due to chemotherapy. As the eldest child in the Harapnuk household, Aiya understood more about Jack’s cancer experience. Her role as the responsible big sister was reinforced and she became a bit of a worrier.
The family got to know about Kids Cancer Care and started participating in the programs. Pizza Nights and Cooking and Caring programs were a big help to ease the load by giving Mom and Dad one less thing to worry about. “Pizza Nights were such a gift,” recalls Kaila. “It was often the only thing Jack would eat. He couldn’t actually go right into the Sunshine Room, but his tube could stretch from his room to the doorway of the Sunshine Room, so parents from the Kids Cancer Care community used to come and sit outside the doorway and chat with us. It was our socialization for the week.”
“Cooking and Caring meals were huge!” says Calvin. “Kids Cancer Care knows what’s going to happen to a family when a child is diagnosed with cancer. As a new family, you have no idea what to expect but Kids Cancer Care does, and they think of everything.”
The Beads of Courage program is designed to help children understand what’s happening to their bodies by giving them a tangible way to record their experience. Each bead represents a treatment or milestone on the journey. When a child is too young to make the Beads of Courage, his family can help record the journey for him. Jack’s Beads of Courage are exceptionally long because his cancer treatment was complex with many surprises and setbacks. “Jack is so proud of beads,” says Kaila.
Jack’s family was a part of many programs throughout the years. “We are so thankful to Kids Cancer Care for making it easy for us to do family things together and not worry about the financial burden,” says Kaila. “We were able to do the Polar Express with the whole family and take the girls to Theatre Calgary to see A Christmas Carol. Now more than ever we realize how important every minute is that we get to spend with all our kids as time is so valuable right now.”
The full extent of Jack’s side effects will develop over time. He has permanent hearing loss and while he is Adam’s identical twin, he will always be smaller. With so much time on treatment, Jack has some catching up to do. His balance and coordination are off and he gets tired more easily. With your support, Jack is rebuilding his strength through one-to-one sessions with our Ph.D. exercise specialist and attending group exercise sessions with his siblings.
“They focus mostly on Jack at PEER, but his brother and sisters participate too,” says Calvin. “Jack will do it because they do.”
Aiya and Nora are working with our child life specialist to understand and process their feelings. They talk about cancer and Jack’s cancer treatments. They also make slime, stress balloons, and bubbles, which they use to help manage their feelings. Aiya and Nora also made paintings and a wooden car for Jack. Working one-to-one or in group settings, our certified child life specialist uses medical play to help children cope with medical tests and procedures. She introduces positive coping skills to transform the child’s fear and anxiety into a sense of control and, even mastery, over their experience.
Our camp programs are helping the Harapnuk kids to forget about their worries and be kids again. Aiya cherishes her newfound independence and the friendships she made at Camp Kindle. She came home with a Kindle Award, which she won for making sure everyone was involved in activities at camp. Jack, Adam, and Nora attend our SunRise day camp. With his siblings nearby, Jack is socializing more with other kids and becoming a little more independent. Our parent programs offer parents a chance to enjoy a rare date night while having fun connecting with other parents in similar circumstances. “Calvin and I did the Parent Cooking Class at the Grey Eagle,” says Kaila. “It was really good. It was nice to spend time together as a couple again. We haven’t had much time as a couple.”
Jack’s treatment took more than three years to complete. There were many touch-and-go moments. While he and his mother were at the hospital fighting for his life, his siblings were at home, missing Mom and Baby Jack. They missed precious time with their parents, so crucial to their development.
“We haven’t been able to spend focused time with our children, doing their ABCs and numbers with them,” says Kaila. “Our tutor Polina meets one-to-one with both Aiya and Nora every Saturday. She’s amazing! And the girls love her.”
Jack hasn’t started school yet, but if he needs support in the classroom one day, our Cancer in the Classroom program will be there for him. Free to Alberta schools, the interactive presentation helps dispel the myths of cancer and fosters greater compassion and understanding in children.
Jack wants to be a police officer when he grows up. Whichever career he chooses, Kids Cancer Care will be there with a Derek Wandzura Memorial Scholarship to help Jack prepare for that career with post-secondary education.