The 5% Kid – Jack –
“One day, our whole world changed, we went from normal into crisis mode. Our family went from having an average income, to not much, and it was tough. With the aid of Helping Families, we were able to keep up with mortgage payments on our home. I don’t know where we’d be today without your help”, explains Kaila, Jack’s Mom.
The Harapnuks heard about Helping Families from their Social Worker at the Children’s Hospital. We’ve helped them over the last year with parking, medical supplies, mortgage payments and PediaSure (nutrition supplements). Kaila’s gratitude warmed our hearts: “Your charity has really been a huge help, especially with PediaSure, because it’s crazy expensive! Jack was still having problems so he took more than 3 PediaSure bottles while he was sleeping. He doesn’t eat enough during the day and this was the case throughout the whole process. He has nasogastric tube (NG tube) which is a special tube that carries food and medicine to the stomach through the nose. He needed the PediaSure because that is where he’s getting his nutrition. You guys really helped us with that.” Their family runs a small business and are often unable to keep up with their tasks since Jack was diagnosed. They have 3 other kids to care for and want to buy them quality food instead of spending it all on PediaSure. Calvin (Jack’s Dad) also works at a gas plant in Crossfield, so it’s been a lot for their family to juggle. Our greatest joy is knowing that we can help ease the burdens of families like theirs who are going through such a difficult time, and the Harapnuks, it seems, haven’t been able to catch a break, since Jack was diagnosed.
August 2nd, 2020 marks the Harapnuk family’s first full year since their little hero Jack’s diagnosis, and the rollercoaster of childhood cancer continues to twist their world in all directions. We sat down to talk to Kaila and Calvin; parents to Aiya, Nora, Adam and Jack, as they had just returned home from the hospital. Several days prior, Jack had low oxygen levels during radiation treatment. He had to be intubated, and went to the Pediatric Intensive Care Unit on a ventilator for 5 days. He was diagnosed with Pulmonary Hypertension, which means high pressure in the blood vessels of the lungs. His family didn’t think he’d make it, but on the day of the interview, he was running around at home and doing just fine with the new steroids his doctors prescribed. The Harapnuk family has experienced countless whirlwind moments like this, yet Jack has proven to be a tough little fighter. This is their story.
Jack and his twin brother Adam were born on June 17th, 2018. For their first birthday, Kaila and Calvin put on a big fish-themed birthday party, complete with a cake smash as well as tons of presents and pictures! Just before the big day, Jack seemed like he wasn’t up to snuff, as he was irritable and cranky. Kaila believed he was going through a phase and constantly wondered why he wasn’t happy. By mid-July, it had gotten worse. His grandmother would come by to help watch him, but she struggled to get him to sleep and couldn’t keep him happy without an Advil every 2 hours and struggled to get him to sleep. After taking him to the Family Doctor, they were left even more confused as his bloodwork and urine tests looked normal. Just before this he had a terrible cold that went down to his lungs. “We thought maybe he had fluid buildup in his joints and stopped weight bearing,” his mother tells us, “Jack went from walking around at 10 months to not walking at all. We’d put him beside the couch and his legs would just buckle.” As his condition continued to worsen, Jack underwent even more tests at the Pediatrician’s office, eventually getting so bad that his parents decided to take him to the ER. He was admitted in the evening during the August long weekend and waited until the next day for his MRI to come back. “It went from them saying it might be nothing to everyone freaking out and rushing back into the room. The doctor kept urging me to get my husband to the hospital; he told us they found a tumor a quarter the size of Jack’s body going through his spine.” Jack was later diagnosed with Stage 4 Intermediate Risk Neuroblastoma.
His mother was able to discuss the process of his treatment with us in incredible detail. It’s mind-blowing to see just how much medical jargon she knew, how she could recall every little procedure he underwent, every complication, every statistic and test, so much so that we could have sworn she was a medical professional herself. She is a warrior in her own right and we just have to commend her strength and determination. It truly is inspiring.
Kaila began by telling us about his diagnosis: “Intermediate Risk Protocol means he would need 6 months of chemo treatments. He finished 4 rounds before they did tests again and once they got to the MRIs at the 4th round, Jack had an Anaphylactic reaction to one of the chemo drugs. When they started the round, he looked a bit grey and we decided we’d better pull the cord. There were about 12 nurses and doctors there, they had to give him epi needles and he got better, thankfully. We ended up switching to a new chemo and he was all good. When he was diagnosed he actually had a chest tube because of the fluids around his lungs. He’s had around 5 chest tubes (not all at once). Later, during the 4th round, they switched him to a High Risk Protocol. He had 2 more rounds of chemo at that point, then they did the tumor removal surgery, they took out everything except the part left in his spine. Jack had tumors in his spine, stomach, groin, and legs. He recovered really well. After 4 more rounds, we did another test. He was getting better – he had reduced spots and completely lost those present in his abdomen, but he still had one in his groin and one on his leg. The main tumour in his spine shrunk slightly. After that, the team decided to continue high risk rounds of chemo because they had been the most effective. It’s been a long 10 months.” She tells us that their plan moving forward is to get radiation done. It works well with Neuroblastoma and there’s less chance of cancer recurrence. At that point we were told that after 12 days of radiation they would have to do another MRI and MIBG (nuclear medicine test), see where he is with the tumour, and then the team would look into Chimerics, potentially 6-12 rounds of that. Chimerics are a new type of cancer treatment, made by combining human and animal antibodies. On their blog, Jack’s mom announced that he started Chimerics on August 10th. He has been going through a lot of pain, so we are sending him our love and keeping him in our thoughts and prayers!
Jack has been full of surprises. “He’s the 5% kid,” says Kaila, “if it happened to the 5%, it happens to Jack, and he surprises everyone with how he recovers, too! He’s had more MRIs and nuclear medicine tests than the average patient gets going through these procedures.” Jack is also Neutropenic, meaning he has no white blood cells to fight infections. If he’s in close contact with someone else who is sick, he could easily get their illness. Regular stuff that doesn’t make anyone sick makes him sick. With the global pandemic currently over our heads, one can only imagine the caution this family has had to exercise. His mom confirmed this during the interview: “It’s funny because when everyone was buying everything out, we already had a year’s supply of Lysol. It’s like, we’re already on top of that, we’ve got everything! But we also have to be careful with the other 3 kids. They go to daycare twice a week, they could be bringing illnesses to him. During his bone marrow transplant it would just be me there with him, Calvin would drop stuff off at the door. We didn’t want one parent switching with another since Jack is so vulnerable.”
There was only one time where the whole family was home for 10 straight days. Kaila tells us that’s the longest they’ve been home in 10 months. Jack would usually spike a fever, need bloodwork, or have other complications that resulted in him needing to be back in the hospital, so life would be a constant blur of back and forth trips. Their other 3 kids have been through a lot, too: “They don’t really know Jack since he hasn’t really been around,” says Kaila, “But his brother was especially affected. They were 13 months old when Jack was diagnosed. At that age you assume kids don’t know too much, then you turn around and hear Adam talking about his brother and realize that they miss each other. That void is really difficult for them. They only see each other maybe 30 days a year. It’s a big journey for Jack, but also for the other kids, too. For all of them.”
Kaila’s biggest wish is that Jack graduates high school, that he is happy, healthy and hopefully never has to go through the process of fighting cancer a second time: “He’s super into cars and trucks, so maybe he’ll become a race car driver one day. Jack is really smart, he knows his colours, can count to 10, and he’s incredibly sociable. If he’s got a drink or a chocolate bar, he makes sure everyone has one too before he eats his. I also wouldn’t be surprised if he marries a nurse at this point. He’s constantly flirting with nurses and already has them crushing on him. He says his Oncologist is his girlfriend.” Jack really is a stealer of hearts. Just look at that adorable little face! Who wouldn’t fall in love with him on sight? After sharing a laugh with us, Kaila tells us the sky’s the limit for Jack.
We can’t wait to touch base 20 years from now to find out what he’s been up to!
Written by: Alexandra Duica (Board Member)
To make a donation to help other families who have a little one battling cancer please visit: http://helpingfamilieshandlecancer.com/donate/