The boy with grit: Brayden Wood needs $1000 a month for a drug flown in from America

Brayden Woods speaks out about the drug that could help him but the cost that is making it near impossible to have. Photo / Stephen Parker

It was his dad's crying eyes that were the sure sign something wasn't right. But after a year of fighting and countless drugs pumped through him, something still isn't right. The silver lining is the drug Sativex, a medicinal cannabis product that he is pinning is hopes on - but at $1000 a month, it's hard to fund. For Brayden Wood, it's his last hope for a quality of life while he continues to fight against the acute lymphoblastic leukaemia that is eating at his blood cells. He - along with his mum, Elizabeth Lee - speaks to journalist Leah Tebbutt about the struggle, but with positivity flowing through him.

It was a sore throat that led Brayden Wood to his general practitioner late last year.

But alarm bells started ringing when he pointed out tiny red spots on his skin and spoke of unusual bruises and fatigue. His GP quickly ordered a blood test.

Doctors broke the news to his dad first. He walked back into the room with eyes red from crying.

"Then dad told me I had leukaemia," Brayden said.

"I was scared. All I heard was cancer."

According to Southern Cross, about 700 New Zealanders are diagnosed with leukaemia each year.

Leukaemia is a term for a group of cancers that originate in the bone marrow and cause abnormal blood cell production.

Brayden said he was admitted straight to Starship hospital, where he underwent a heavy dose of chemotherapy.

"But then I tested positive for the Philadelphia gene which has a higher resistance to chemo," the 16-year-old said.

Brayden tries not to get down in the dumps and was stoked to fly in the helicopter for urgent treatment. Photo / Supplied

A year on, the former First XV hooker has lost almost a third of his 90kg pre-diagnosis body weight and is pinning his hopes on a medicinal cannabis drug that should keep him strong enough to keep fighting the disease.

The kicker? The drug, Sativex, costs $1000 a month, for a few small doses a day.

Doctors' first strategy was heavy rounds of chemo due to a new drug available and as a result, Brayden was in and out of the intensive care unit between May and July this year.

"I got really sick, I had mucositis," Brayden said.

"When you fall over and you scrape your knee, that's what my gut was like. I wasn't allowed to eat or drink, just IV nutrition."

A fungus also got into his bloodstream and left patches on his kidney, liver and lungs and eventually his brain.

But it was nausea that rocked him most and the teenager who was once so active he couldn't keep still, now struggles to walk down the hallway at a normal pace.

Brayden's mum Elizabeth Lee said finding out she was a donor match was a blessing in a year of terrible news. Photo / Stephen Parker

"Every drug under the sun" was used to help the feeling, Brayden said, including one developed for the treatment of schizophrenia but its side effect was nausea.

Brayden's mum, Elizabeth Lee, labelled it "pretty desperate" to be using drugs like that to deal with her son's pain but it's what she had to do before Brayden's doctors could make an application to the Ministry of Health for the medicinal cannabis.

"Currently Brayden has no quality of life, the drugs he previously used made him fall asleep straight away and he is too scared to eat because he doesn't want to vomit, again.

"The Sativex may not work, we don't know, but it is one more tool that might help."

It is the price a parent would pay to see their son well and in January, she will donate her bone marrow to her son after finding out she was a rare match.

"Basically what they have discovered is the chemo drug he was on was too toxic for Brayden, but to recover from the bone marrow surgery he needs to be eating."

Her hope is drugs such as Sativex will be produced in New Zealand if next year's referendum on legalising cannabis goes through, therefore lowering the price and giving more people like Brayden a chance at fighting the disease slowly eating at his blood cells.

"I understand where people have this negative opinion, and there is always going to be an element of abuse with anything, but to keep it from people who could benefit from it so much, it's wrong," Lee said.

However, the medicinal cannabis scheme, which will enable domestic commercial cultivation and manufacture of medicinal cannabis and currently being implemented, should improve access to cannabis-based products, a Ministry of Health spokeswoman said.

Regulations will be made by December 18 this year and the Medicinal Cannabis Scheme will be operational in the first quarter of 2020.

The ministry did not answer questions put to them regarding the future of Sativex if cannabis was to become legal and if it would be funded.

- A fundraising page has been set up for Brayden. Visit Givealittle and search for Brayden Wood: The Warrior