Isaac's journey of hope
Thirteen-year-old Isaac lives with his mum and little sister in Methven. He’s a keen skier who loves nothing more than hanging out with his friends and playing his favourite sports. So when he suddenly became too tired to play football, his mum, Kelly, knew something was wrong.
“It all started with influenza at the end of July last year,” says Isaac. “I was sleeping a ton, and my stamina was super low.”
“He lost about eight kilos,” adds Kelly. “He would come home from school and go to sleep straight away. We were at the GP fortnightly – getting blood tests and weigh-ins, and we were at Ashburton Hospital quite frequently. We just kept getting sent away, being told it was mental health or an eating disorder.”
As Isaac’s symptoms worsened, Kelly made yet another doctor’s appointment with a GP they hadn’t met before. “I told her, ‘You just need to see us as we are today.’”
The GP asked Isaac to lie down, and when he tried to, he couldn’t breathe. She sent him straight to Christchurch Hospital.
“Everything went pretty crazy from there,” says Kelly. “They did an X-ray, and all of a sudden the room was full, and the word cancer was spoken about. From there, our lives changed.”
The X-ray showed that Isaac’s chest was full of fluid and contained a large tumour. His heart had been pushed right over to the side, and only one of his lungs was visible. The medical team told Kelly that, based on the type of cancer they thought it was, there would be very few treatment options available.
“We had some pretty frank talks with the oncologist,” Kelly says. “He said there was nothing they could do. That was horrific.”
Isaac and Kelly were flown up to Starship Hospital in the middle of the night. Kelly was told that if Isaac’s heart stopped during the flight, they wouldn’t be able to restart it.
Thankfully, they made it. But with Isaac heavily sedated, Kelly was entirely on her own, terrified about what was to come.
“Then all of a sudden, it turned out to be lymphoma,” she says, “so things turned around a bit.”
When Isaac woke up, Kelly was nervous to tell him he had cancer. “But he was actually quite relieved,” she says. “He was just like, ‘Oh, so I’m not making all of this up!’”
Isaac’s diagnosis was primary mediastinal B-cell lymphoma (PMBCL). He was started on chemotherapy and responded almost immediately. After two weeks at Starship, he was transferred back to Christchurch Hospital. “Then, midway through treatment, we got a not-so-good X-ray, so he got his chemo ramped up to the highest it could be. The higher dose made him really sick, but it did the trick.”
Isaac remembers those days clearly. “It was like having a cold but 100 times worse,” he says. “Like, sore throat, sore stomach, spit coming out of my mouth. I had headaches and was photosensitive, so I liked to be in the dark with the curtains shut.”
“He kind of just dug deep and got through every part of it,” says Kelly.
As well as dealing with side effects, Isaac had to cope with months away from home – missing out on school and seeing his friends.
Fortunately, during his stay in Christchurch Hospital, Isaac met Kate from Blood Cancer NZ. She could tell Isaac was missing his friends, so she visited his school to chat with his classmates about what was going on. She left a toy monkey in Isaac’s chair to keep his place until he was ready to come back.
“His friends really jumped on that,” says Kelly. “They took the monkey everywhere – it’s been on motorbikes, it’s been on the mountain, to sports games and sleepovers. It was an amazing thing that Kate did, and I think our whole journey would have been a lot different, especially for Isaac and his friends, if she hadn’t done that.”
Kate also made a connection with Isaac’s little sister, Bella. “She was going to school and battling all these things that were being said about her brother,” says Kelly. “So Kate even went into her school and talked to her class, which was amazing.”
Bella also joined Blood Cancer NZ’s Kids’ Club, and continues to receive one-on-one support to help her process everything that’s happened.
After a frightening start to his journey, Isaac has now finished treatment and is back home. “He just rang the bell two weeks ago,” says Kelly, “and his haematologist has said he’s just a miracle, really.”
“He’s still having three-weekly scans, because there’s still a tumour,” she explains. “That tumour is likely to stay there forever. It’s right in the centre, so they’re not going to operate.”
Isaac says he’s already feeling a lot better than he did. “I’m regaining my strength quite quickly and my hair is growing back quite a bit.”
He’s going to regular physio appointments and has taken up surfing. The family have also welcomed a new puppy, and they’re looking forward to a ski holiday in Japan – something Isaac planned throughout the hardest days in hospital.
Kelly laughs, “We’re not wasting any time in getting life underway!”
