When former port worker Jason Hooker was diagnosed with stage 4 melanoma in January this year, his whānau had just celebrated the news that their 19-year-old son, Mikes, had gone into remission after a seven-year battle with brain and spine cancer.
Mikes was only 12 when he was diagnosed. For the past seven years, the whānau had supported him through a nine-hour operation to remove a brain tumour, 30 doses of radiation and three months of chemotherapy before he finally went into remission in December 2022.
Now, 42-year-old Jason feels he is one of the unlucky ones as he fights for his life and the chance to carry on parenting his three boys, 22-year-old Avian, 19-year-old Mikes and 20-month-old Edward. Jason says he thought melanoma was uncommon for Māori but now understands they often have thicker, more aggressive melanomas and can have poorer outcomes.
He doesn’t recall education about the importance of being sun smart being marketed to the public when he was young and remembers being exposed to a lot of sun during his 20s when he worked as a logger.
In 2015, Jason found mole-like skin growths on his back and went to the GP, who told him to get checked by a skin specialist immediately. The lesions were removed with large margins, and he was diagnosed with melanoma.
A few months later, a PET scan showed no other cancer, and they thought he was all good.
In December last year, Jason started having back pain, but he says, like so many others, he just got on with it. When he began feeling pain in his arm in January, he returned to his GP and was diagnosed with terminal metastatic melanoma, which has spread to his lungs, spine and brain.
He travelled to Palmerston North on 23 January for radiation to treat the tumours along the length of his spine. Although he had a small tumour at the base of his brain, Jason said they wanted to immediately concentrate on the spinal tumours attached to nerves to avoid him becoming paralysed.
When he returned home to Hawke’s Bay, he was told that surgery to debulk the largest lower tumour was a possibility. He spent five days at Wellington Hospital, where he underwent several scans that revealed part of his spine had fractured, which meant if they attached plates and screws to it, it would crumble.
So, their hope for surgery was gone, and non-funded treatment was his only option.
“I would have been paralysed and in a wheelchair if my mother-in-law and father-in-law hadn’t paid for my first round of encorafenib/binimetinib,” says Jason.
Jason said the treatment is working well and giving him a quality of life with his family. His biggest fear is not being around for his partner Kylie and their boys in the future and being unable to raise enough money to complete the five months of non-funded cancer treatment.
“Kylie is my biggest supporter, and I want to do everything I can to know that my children, especially my youngest, Edward, can get an education without her having to struggle.”
Jason has already received donations to help fund his treatment, for which he is hugely grateful, but he struggles with the fact that cancer drugs are still not funded in New Zealand.
“If I can raise funds for treatment and continue to get better, I would like to advocate for this cause and raise awareness about the dangers of UV radiation.
“I want to make a positive impact and encourage change with simple measures, like getting regular check-ups, wearing sunscreen, and never taking your health for granted, as life can change quickly.
“Don’t live in regret.”