To see Carter Harris joyfully do cartwheels and energetically conquer the new playground equipment at Muheim Park, one would never guess the Smithers eight-year-old has spent more than half his young life in hospital and is only kept alive by being hooked up to an intravenous pump 18-hours a day.
During part of the other six hours, though, aside from being more like the size of a five-year-old, you would be hard-pressed to distinguish him from any other kid his age until he proudly lifts up his shirt to reveal the life-saving medical apparatuses installed in his torso.
THE FIRST CRASH
Just nine weeks after Carter was born on March 4, 2012, he contracted rotavirus during what parents Cache and Kim Harris thought was a routine visit to BC Children’s Hospital in Vancouver for an ultrasound.
“We came back and he crashed,” said Cache. “He couldn’t eat anything, we just about lost him and we got medivaced back to BC Children’s.”
Carter was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES), as well as, Crohn’s disease, ulcerative colitis, gut failure and a kidney problem.
It is unclear whether the rotavirus is related to Carter’s diagnosis — very little is known.
FPIES is an uncommon allergic disorder that causes moderate to severe vomiting and diarrhea. It most commonly occurs within the first year of a child’s life and can usually be treated effectively simply by removing the offending food proteins from a child’s diet. Many outgrow it by the time they are three- or four-years-old.
That is not even close to the case for Carter. His FPIES along with his complex gastrointestinal complications make it impossible for him to eat solid food or absorb nutrients properly.
“He’s never been able to eat normal food,” Cache said. “I think we can count on two hands the times we’ve tried successfully. Other than that we’ve tried numerous food options and the only thing that really works for Carter is old-school chicken bone broth that I make him.”
Over the years, Carter has been fitted with 13 PICC (Peripherally Inserted Central Catheter) lines, a long tube inserted into a large vein in the arm, leg or neck that goes to the heart. It is used for long-term delivery of nutrition, antibiotics and medication and to allow for drawing of blood.
More recently, the PICC lines have been replaced with Hickman line (similar, but inserted directly into his chest).
“He’s been pricked so many times, he doesn’t have any more sites; he has too much scar tissue,” Cache said.
Carter receives 70 per cent of his nutrition through the Hickman line from Total Parenteral Nutrition (TPN), a solution of electrolytes, sugars, amino acids (protein), vitamins, minerals, and lipids (fats).
He is also fitted with a Gastrostomy Tube (G-Tube) that delivers the other 30 per cent of his nutritional needs directly to his stomach via a hypoallergenic formula called Paramino.
In addition to nutrition, Carter’s Hickman line delivers an alphabet soup of immune system medication, antibiotics, steroids and more medication to counteract the side effects of the steroids, which is osteoporosis.
Over the years he has undergone 20 surgeries and the longest he has been out of hospital was one full year from Dec. 21 2018 to Jan. 6, 2020, Cache said.
This most recent time, the two of them were gone for seven months, only getting home three weeks ago. During those seven months, at his sickest, Carter was down to 32 lbs. He is currently back up to 53 lbs.
“We’ve just about lost Carter about 19 times, but he keeps fighting, he keeps just battling right back,” Cache said.
On top of Carter’s health problems, Kim was diagnosed with a benign tumour in her left lung, which doctors believe triggered a case of epilepsy, Cache said, from which she suffers multiple seizures every month.
“Carter knows we need to take care of mum as well,” Cache said, recounting a story about one incident when Kim experienced a seizure while Cache was out. Carter had the wherewithal to make sure she was OK, instruct his six-year-old brother Asher to stay with her and make a Facetime call to Cache.
A NORMAL KID
Despite it all, Carter brims with joy and optimism.
“He’s honestly the happiest little kid in the world,” Cache said.
You can see it in the way his eyes light up when he talks about his favourite things, such as riding his bike or scooter at the skate park and building things from his imagination with Lego. You can hear it in the way he giggles about cuddles, storytime and singing with daddy.
Carter’s optimism and enthusiasm include big plans for the future.
“I want to be a pilot,” he said before dashing off with more cartwheels en route to the playground’s zip line, which presented a struggle to get up on the platform while trying to hang onto the zip line at the same time.
“He tries so hard because he doesn’t want to be any different than any other kid,” Cache said. “I can go and help him, but he is so determined to be a strong normal kid that he wants to do it himself and he’s very independent. The nurses and doctors love him because he’s so happy and optimistic and kind and well-mannered.
“He’s one of the smallest little bundles of love I’ve ever seen, and the way he looks at things like, ‘I want to be a pilot so I can fly other kids to their treatments and other people on their vacations.”
Carter may come by his traits honestly. Cache also exudes a kind of calm joy, unbridled optimism and a deep sense of compassion, but he and Kim are also actively trying to instill these values drawing on Cache’s Cree heritage and his two-spirit identity (he is currently presenting his feminine side).
“That’s more just a cultural thing, not a sexual thing,” he explained. “It’s been our tradition to teach Carter more of my culture because my wife was adopted and she doesn’t know a lot of her culture (African-American and Italian). So, we’ve just been rolling with it, trying to teach him that everybody is unique and everybody is different and he is determined to treat everybody with nothing but respect and kindness and love and it’s quite nice to see.”
Although they try to focus on the positive, the road has not been easy. Being away from each other for months at a time, dealing with the stress of Carter being touch and go on multiple occasions, not being able to work with regularity, takes its toll on all of them.
What keeps Cache going is accepting the cards he has been dealt.
“I think my role on Earth is just to take care of those around me,” he said. “That’s really what keeps me going, knowing that that’s why I’m here, is to help others.”
Being a veteran of BC Children’s Hospital, that help extends to being a resource for other families going through similar experiences with sick kids.
“I believe once you share a story you gain strength from that sharing and other people might realize, ‘oh, I don’t have it that bad’ or ‘you just gave me motivation to keep going,” he said.
It also came with a price, though. Last year, Cache was diagnosed with complex PTSD (Post Traumatic Stress Disorder). Although he has served in the Armed Forces and was a member of Smithers Fire Rescue, common sources for PTSD, his diagnosis is related to his involvement with the community of people with critically ill children, he said.
“Being in the hospital, these families, especially at Ronald McDonald House, they become your families, and we ended up seeing over 20 children pass away from different things and watching their families go through what they go through and me being an empath and two-spirit as well, makes it a little harder, because I take it on a little deeper,” he said.
“There’s days when I crash, of course, that I can’t go on,” he added.
“So, I’ve been dealing with it the best I can and just trying to learn what my triggers are and just keep going because I know we’re not out of the woods, that we have a long road ahead of us, but we’re making headway.”
There has also been a financial toll.
For 17 years, Cache was a full-time IT technician with Four Dimension Computer Centre in Smithers. He said the company was extremely supportive, but in 2017 he realized it just wasn’t workable anymore.
“I had to reevaluate my priorities,” he said. “Being pulled away for three months and then six months and then another four months doesn’t exactly allow you to work full-time.”
WISH COME TRUE
The Harrises recognize that a future for Carter is no guarantee, so for years they have been applying to the Make-a-Wish Foundation.
Carter has had several wishes, including dancing with Ellen (DeGeneres), and visiting both Legoland and Aulani, a Walt Disney World Resort in Hawaii.
When the latest round of intake came around, however, travel wishes were quashed by COVID-19.
Carter decided he wanted a travel trailer so the family can go camping together. Recently they found out he has been approved for a wish and they are waiting to hear if they are going to get the trailer.
Cache said that would be just about perfect because they can take all of Carter’s equipment with them on the road.
While they await word back from the organization, both are visibly excited and optimistic about the prospect although they don’t know when or where they will go.
They are also optimistic about a new medication, which, Cache said, has so far kept Carter’s symptoms in check.
THE BOTTOM LINE
There is a lot of hardship, sacrifice and uncertainty behind them, and undoubtedly more to come, but Cache tries to keep it in perspective.
“Seeing the joy in Carter’s eyes and face,” he said. “If I can give him whatever time he has on planet Earth, to make that as special as possible, then that’s all worth it.
“Honestly, I have the best job in the world, it just doesn’t pay the bills, but I wouldn’t give it up for anything because just being on Carter’s journey with him has helped me heal and accept myself for my differences.”
The BC Children’s Hospital Foundation is currently running its annual Dream Lottery. Dream Lottery proceeds go toward research initiatives at BC Children’s Hospital, where over 1,000 medical researchers pursue new discoveries that are then translated directly into improved care to benefit sick and injured children across the province. Ticket purchasers have a chance to win one of seven grand prize homes or $2.2 million tax-free cash: www.bcchildren.com.