It will take two years for the Pukehina teenager to fully recover. Photo / Supplied
It will take two years for the Pukehina teenager to fully recover. Photo / Supplied
Tremayne "Trey" Rayner reckons has been through "a lot" for someone his age.
The Pukehina teenager has spent weeks at Starship Hospital on multiple occasions - first when he developed an aggressive form of cancer as a child, and then seven years later after he was diagnosed with a geneticimmune deficiency requiring a bone marrow transplant.
Trey's parents called on the Ronald McDonald House during these "pretty rough" times - spending a total of about four months there across different periods.
Now the family are calling on the public to support the Ronald McDonald House, saying staying at the "warm, safe and welcoming space" meant they could be by their son's side 24/7.
At 7 years old, Trey was diagnosed with Burkitt lymphoma after an ultrasound uncovered an 8cm by 10cm tumour in his stomach.
Seven-year-old Trey underwent chemotherapy in 2013 after being diagnosed with Burkitt Lymphoma. Photo / Supplied
Cortesi said while the diagnosis was "sudden and unexpected", being a five-minute walk away meant the family could focus on being there for Trey.
He responded well to chemotherapy and was discharged from hospital in 2014 with oncologist check-ups every six months over the next seven years, she said.
But in January last year, Trey's doctor noticed he had an enlarged spleen which was monitored closely over the coming months.
In December he underwent a bone marrow biopsy as nothing had changed, and later was admitted to Tauranga Hospital with an infection.
In January 2022 he was sent back to Starship where a "large team of doctors tried to determine what was happening," she said.
She said doctors then found he had a gene mutation that "only a bone marrow transplant could fix", so he was put on steroids and sent home while they looked for a donor.
"They deducted he may have something called HLH – a pathogenic genetic immune deficiency which requires a bone marrow transplant to get rid of the gene and replace the entire immune system with donor cells from a donor."
After "months" of looking for a donor, Trey returned to Starship in June for the transplant. He also had to undergo another round of chemotherapy the week before resulting in hair loss, nausea and mouth ulcers.
For seven weeks afterwards, Trey was isolated to a room in the oncology and haematology ward due to the risks of him being exposed to illness. He did not leave the room once during this time.
Cortesi made the call to quit her job and stay with him in hospital, while Rayner once again moved into the Auckland house.
"You are just in survival mode - you are just trying to get through the next hour. It's not until you start to come out the other side that it starts to hit you."
Trey and his mum, Belinda Cortesi, during his time at Starship Hospital this year. Photo / Supplied
Despite it being a "pretty rough" time for the whole family, she said it was familiar territory and they tried their best to keep spirits high.
"But at the same time, it's really really hard because he has already been through so much. And all you can really do is take one day at a time and keep positive.
"As soon as it happened I had to quit my job and basically moved to Auckland. You just have a lot of plates to juggle and you prioritise what comes first. Nothing else matters more than my kid's health."
Doctors needed to keep a "close eye on him" for 100 days as his body adjusted to having an "entirely new immune system", so after seven weeks they moved into a self-contained apartment at the Auckland house.
"Knowing we had somewhere safe to stay that was away from home, but still away from the main population for risk of any bugs was an amazing weight off our shoulders," she said.
"After a while, you feel like part of the furniture. You just kind of get used to it."
She said her son had been "such a trooper through it all" and it would take him about two years to "regain his full immune system".
The family returned to Pukehina in mid-September and now have to travel to Starship twice a month for blood tests and a check-up.
She said Auckland house provided a "warm, safe and welcoming space" when they needed respite from the "stressful hospital environment" and also meant they were able to be by their son's side 24/7.
"He needed his mum and dad there to get through everything. And we were able to be there all the time. That's the key thing.
"We were staying in a city with no family close by. There's no way we would have been able to afford to stay close to the hospital without Ronald McDonald House."
"He's the most resilient person I know. It's just unbelievable. He has the odd day where he gets sick of it, and he's had enough. But he's strong and he has a very big heart."
She described him as an "animal lover" who was introverted at times, while also having a "cheeky, funny side".
Trey was celebrating his 16th birthday today going out to lunch and the movies - and planned to reunite with extended family for the first time in more than six months, she said.
"It's his first sort of outing in that sort of environment. They will probably all burst into tears in the middle of the restaurant," she said.
Speaking to the Bay of Plenty Times over the phone, Trey said it was "real nice and comforting" to know his parents were just a short walk away when he was at Starship.
While the teen said he "did not mind being in isolation that much", he said the six-week stint in hospital was hard because he was confined to one room.
