Kiwi father inspired by 'superhero' son, 4, fighting leukemia and braving intense chemotherapy with resilience

An impromptu query led to concerns before tests confirmed the outgoing little boy had cancer.
An impromptu query led to concerns before tests confirmed the outgoing little boy had cancer. Photo credit: Supplied.

A young boy battling leukemia is inspiring his father as he braves his third round of intense chemotherapy.  

Despite suffering at times through severe pain, four-year-old Kainui has refused to let the disease get the better of his naturally cheerful and positive personality. 

"I used to have a lot of heroes but now I've only got one and that's him, my superhero. He's the man," his father Gregg Conning told Newshub. 

"Him himself is what gets us through, you can meet this kid and not even know he's sick." 

Kainui is now on his third round of chemo for the next 28 days.
Kainui is now on his third round of chemo for the next 28 days. Photo credit: Supplied.

Kainui has a huge fear of needles, yet each day he's having to work out ways to get through the many treatments necessary to help him get better.

"He's going through so much, yet his resilance is more than most men I know, he doesn't give up because he doesn't have a choice," Gregg explains. 

"I watch him cry and be scared but he overcomes it himself, he talks himself around. Every day he hates what he's going through but he does what he needs to get done because he knows he needs to get better." 

The Tauranga family are hopeful a new drug trial involving top paediatricians from around the world will not only eliminate Kainui's cancer now but stop it from coming back later on.  

During a spontaneous visit to the doctor on June 1, it took just 12 hours for Kainui's parents to be delivered a "devastating" diagnosis that turned their son's livelihood on its head. 

Early that morning, Kainui's grandmother had been walking in the family's garage when she tripped over a skateboard and injured her knee. 

The injury was bad enough to warrant a trip to the doctor so Kainui went along with his grandmother  and mum Tash to get her checked out. 

Kainui had some bruising on his arm that wasn't going away, so Tash took the opportunity to ask the doctor about it.

The impromptu query led to concerns before tests confirmed news Gregg and Tash could have never could have seen coming - their beautiful and outgoing little boy had cancer. 

"We went there at 9am in the morning and by 9pm at night they had put us in a room and said 'hey, your son has leukemia, you need to go to Starship tomorrow'," Gregg says.  

Gregg says Kainui has taught him "life is short" and to embrace the time with the ones you love.
Gregg says Kainui has taught him "life is short" and to embrace the time with the ones you love. Photo credit: Supplied.

Kainui was eventually diagnosed with  B-cell acute Lymphoblastic Leukaemia - a white blood cell cancer that originates in bone marrow and develops quickly. 

Unexplained bruising is a common symptom of leukemia, appearing on patient's arms and legs as a result of a low platelet count or clotting issues. 

In one day, the super active preschooler went from having fun outside, running around and kicking balls to walking around with a tube in his nose, carrying a machine around to feed him and not having enough energy to play. 

Straight away, Kainui was put onto his first six weeks of chemotherapy at Auckland's Starship but the family was gutted to learn afterwards the cancer had progressed and got more aggressive. 

The next option was to uptake a harder eight-week stint with three different types of chemotherapy, ending only last week. 

The treatment has taken a huge toll on Kainui's body physically, he has lost his hair, eyebrows and has fluctuating weight. He recently did a stint of 21 days in hospital because of an infection and had ended up with ulcers in his stomach - an uncommon side effect of chemeo called neutropenic enterocolitis.

"He knows he's sick. He knows something's not right," Gregg says. 

The doting father has been determined to learn as much as possible about the disease but credits Kainui's mum for being a constant source of support for their son. 

Kainui's mum Tash told Newshub despite the many challenges, there have been life lessons to come out of the situation the family can be grateful for.
Kainui's mum Tash told Newshub despite the many challenges, there have been life lessons to come out of the situation the family can be grateful for. Photo credit: Supplied.

"His mother has been incredible with that side of things, she was studying nursing, she's the strong point, she doesn't miss a beat with anything to do with his medication," he says. 

Holding up a positive attitude while keeping good news and progress in perspective without getting ahead of themselves has been important. 

If a nurse or doctor says Kainui is doing well, Gregg tries not to get too excited until it's confirmed in test results. 

"One day you can see he's doing so good, and then the next day you're in hospital for two weeks with an infection and he's lying there not moving, and you think 'I thought you said he was doing good'." 

Even through emotional rollercoster, Kanui's mum Tash told Newshub she's trying to take away what learnings she can as they navigate the challenges day by day. 

"Sometimes I feel, especially when you meet the other families, it's a new world up here, when you see what they're going through, we're blessed to be learning life lessons that some never will. That's a positive to come out of it, our kids are only going to be stronger and more resilient because of this." 

Their ultimate wish for doctors to say Kainui is in remission and he's good to go home, desperately wanting their son to live a normal life, play rugby or do whatever he chooses to. 

Making frequent trips to Starship from Papamoa has become a new normal and with growing expenses, a GiveALittle page was set up to help the family. 

Although Gregg struggles to accept the support, he says he's so thankful for the overwhelming generosity. 

"We're lucky," he says.