Photographers from across the country are banding together to back a mate, showcasing iconic New Zealand images. Mike Scott reports on the epic cancer battle that took Jason Oxenham to China and back.
Standing in line at Shanghai Disneyland, Jason Oxenham feels lumps of cancer on his neck and ribs.
He knows what it means. When myeloma escapes the blood and bone and begins to bloom in soft tissue, time is running out.
A bright family outing - a break from hospital wards, tubes and needles - turns dark.
Oxenham is in China for a last-gasp attempt to halt his cancer through expensive CAR T-cell therapy, but the lumps mean the two regimes he received in a test group have failed.
The oppressive Shanghai summer heat squeezes in tight. With the malignancy running rampant beneath his skin, he is exhausted, defeated.
Oxenham is surrounded by the clatter of rides and the shouts of joy but with each touch to his neck, the reality he fought against for five and a half years begins to crystallise.
Is it time to fly home, enter hospice and wait to die?
He leaves Disneyland. Walks away from his devoted family, mindful of friends supporting him back home, needing to be alone at his hotel.
He’s let everyone down – he’s lost – the cancer has won.
Six weeks on, Oxenham is speaking from his Auckland home, a warm, renovated bungalow.
On the walls hang his own photos, which is unsurprising since he has worked as a photojournalist for 30 years.
Around his neck hangs a large, impressive triangle of pounamu.
“It was a gift from a friend on the day of my first chemotherapy treatment, back in March 2020.
“She blessed it and all her family wore it for a few days each to soak up their energy.
“I have only ever taken it off for scans.”
His diagnosis, back on the eve of Covid lockdowns, was a shock. Jason was lacking energy and his doctor suggested a blood test.
Turned out he was seriously anaemic. On seeing a specialist he was expecting a lecture on eating more spinach and doing more exercise.
Instead he was told he had multiple myeloma – a blood cancer that develops in the bone marrow.
“Wow, cancer. This happens to people, but I didn’t expect it to happen to me.
“And your first thought goes to your children. My youngest, Ruby, she was 12 at the time – that’s too young to lose a parent.”
Oxenham is one of those deep-thinking types. He’ll sit quietly, listening, and when he speaks it’s worth taking note.
When he was diagnosed his thoughtful rationality kicked in. He started Googling, finding out what he could about multiple myeloma.
“Wikipedia told me three and a half years is the average expectancy.
“I quite like stats and I think, well, if the average is 3.5 years, a lot of people aren’t living the three and a half years.
“My analytical mind thinks a lot of people aren’t going to go past one and a half years.
“That is not even a Rugby World Cup cycle, you know.”
Years, half years, age, World Cups. They’re all units of time.
For Oxenham, much of what he says is framed in these units – marriages, births, chemo cycles… death.
And if he was to get more time, to have a future, there was work to do.
Immediately in 2020, he began chemotherapy and, during lockdowns, had a stem cell transplant when his wife was the only visitor allowed.
He was in partial remission, helped by a maintenance chemo drug, and got to work on fitness - beating that 1.5-year mark.
“Then I relapsed. That’s what happens with blood cancer. It’s not a physical cancer you can cut out.”
Oxenham’s explanation is that his cancer grew immune to the initial drug treatment.
It meant finding new options but in NZ the alternative drugs are not funded by Pharmac, making them unsustainably expensive to buy – around half a million dollars for a year’s supply – and they were not guaranteed to succeed.
His options in his home country were running dry.
“In my regular visit with my specialist, he just said, ‘have you thought about CAR T?’.”
Sitting in the dim hotel room after his shock discovery at Disneyland, Oxenham runs a finger along his lumpy rib cage.
The week in Shanghai with his wife, Kristy, and daughters, Ruby and Holly, is supposed to be a final farewell to China before flying home – fixed.
They’d spent a lot of money, other people’s money, and the whole journey to China was beginning to feel like a waste.
Oxenham’s time in the megacity, after his two failed CAR T therapies, has already stretched into six brutal weeks.
His mate Stu, a fellow Kiwi on a similar trial, is all done in three.
Jealousy rises, but he checks himself.
“Be happy for Stu. It worked for him.
“But why hasn’t it worked for me?”
He hates feeling sorry for himself.
“You’re not the only one in the world with challenges, you’re not that special.”
But his future is fading and he’s losing sight of those milestones – graduations, weddings, grandkids… life.
Then his phone lights up with a message on the WeChat app. It’s Professor Jian Hou.
The message reads: “We’ve got another CAR T option for you. Let’s do this again”.
Back in Auckland, Oxenham shakes his head.
Chimeric Antigen Receptor T-cell therapy – “the science – it blows your mind.
“They take T-cells out of your blood and they harvest it, strip it out and they put the blood back in.
“The cells get re-engineered and they put those cells back in you. It’s an amazing process.”
Unfortunately, the treatment is not available in NZ.
It is possible to get CAR T therapy in the United States or Australia but it’ll cost a cool million or so for a Kiwi.
“But there were other countries that were doing it cheaper – China, Israel, India,” remarks Oxenham.
The cost was still high, likely around the $500k mark.
“You know, we’ve still got to live, got three kids still at home.
“I don’t want to be selfish and just absorb my whole family’s content assets. It’s tricky.”
It’s classic Oxenham, weighing up the family assets, calculating whether his life is worth the cost.
But in this house, surrounded by his photos and the people who love him, it’s a no-brainer - “we’re doing this CAR T thing”.
His wife Kristy led the search for treatment options, and through others living with myeloma they discovered Professor Jian Hou in Shanghai.
“And I started communicating with him, emailing, and we learned through research that he’s a pioneer, he’s a real leader in the research of CAR T.”
Oxenham’s relapse was progressing, so time was critical. He pulled together money from his redundancy payout and KiwiSaver. There was help from family and friends, and a quickly established Givealittle page.
And with Kirsty, he flew to China.
“We were kind of in the dark. We didn’t know what to expect.”
Freshly shaved, Oxenham is lying back, tubes in his arm, going through his third infusion, giving it one more crack.
From here, it’s a waiting game under the stark artificial light and mechanical beeps and hums.
He needs to get sicker because if the therapy works, the re-engineered cells will hunt down and attack the cancer as if it were a virus, unleashing a fierce fever.
The sweats start and Oxenham heaves through eight days of rising and falling body temperature.
It’s working. He feels like crap, but happy because unlike before, the CAR T is doing its job.
He runs his hands across his middle and neck. It’s smoother - the lumps of cancer are diminishing.
Professor Hou and his team deliver the critical data — his ‘numbers’ are dropping, and time, Oxenham’s most precious commodity, is no longer running into a dead-end.
“Suddenly the future opens up.
“You know, it’s like wow, I might get to see my kids graduate from university and start their own lives.”
Stacked against a wall in Oxenham’s home is a huge line-up of framed photos. And on a table is a stack of more empty frames waiting for their image to be placed inside.
It looks like a lot of work.
It’s all part of a fundraising project for the treatment in China that he initiated before making the trip – a photography exhibition called Light+Shade.
“As a photojournalist for 30 years it suddenly dawned on me, it’d be great to pull on a few favours from all my friends over the years.
“People I have worked alongside, colleagues, a lot of really good friends, talented people and inspirational people.
“And I thought if I could just ask them for three or four frames each and I’ll present an art exhibition.”
So it was no surprise that more than 30 photographers he asked answered the call.
“You work alongside people and just try to be a good friend, colleague, whatever but it seems that stuff pays off.
“And it is interesting how different photographers have approached the brief and that’s what makes the exhibition so interesting because you’ve got such different styles.
“You’ve got photographers who specialise in underwater photography or drone photography or fashion, sport and photojournalism.
“I’m grateful that NZME, Stuff, Getty and Photosport have all come on board and said ‘yeah, you can flog off our stuff,’ because a lot of the photos are not the photographers’ property.”
The exhibition also features the work of Herald cartoonist Rod Emmerson.
Ten Richard O’Brien illustrations, signed by the famous actor and The Rocky Horror Show creator, as his most famous character Riff Raff, are up for sale and already selling fast.
Beyond the imagery, the framers, printers, exhibition space and refreshments for the opening have been donated.
“The response has been really humbling.”
There’s hope the exhibition and ongoing online sales of the photos will make a dent in the $250,000 he and Kristy need to make up for their China experience.
Oxenham had to be convinced to stage a fundraising effort like Light+Shade.
“I felt uncomfortable with the Givealittle approach. I had to be talked around.
“I much prefer the idea of people getting something for their contribution.”
“It’s crazy. CAR T-cell therapy is standard treatment in the US. And yet we have to beg, borrow, steal and fundraise every cent we can to pay for these treatments.
“I mean, it’s a shame that during a phase that I should be actually trying to recover from treatment, I’m spending every waking hour fundraising – I am enjoying it – but you know, it’s draining.”
Oxenham drops in to his old workplace, the editorial room of the NZ Herald, to drop off invites to the opening of Light+Shade, one week away.
His colour is better. Less of that ill-waxy pallor that was an obvious result of the battle his body has endured for five and a half years.
On his return from China, his “numbers” were low meaning the cancer was in remission. So much that his specialist didn’t want to see him for three months, when for the past few years it has been monthly visits.
Normal blood indicators such as his platelet and neutrophil levels are scarily low, however.
“Like platelets for example, should be between 150 and 400. Mine are 25.
“But what it means is the CAR T is still working - it’s still fighting the cancer. I’m sitting here and these cells are in my body, and this sounds a bit weird, but they’re still going to war.
“It’s amazing.
“I’m not cured, but it’s manageable. I will relapse at some point, and God willing, I have a lot of years out of it. The best-case scenario is I might get 10 years out of this.
“And the other thing that we’re sort of hopeful of is that when I was diagnosed five years ago, CAR T wasn’t on the horizon.
“So in another five years, with the breakthroughs that are coming, you know what, it could be curable.
“There are doctors overseas that are saying that myeloma is curable and others saying ‘no, it’s not’, but you know they wouldn’t have even been having that discussion five years ago.
“It could be just another breakthrough, and then another breakthrough, and suddenly, I mean, who knows?”
Five years, 10 years – Oxenham is once again talking in units of time.
He reminisces about those cancer lumps, brushing his hand along his ribs.
When he felt them in line at Disneyland, time was up – “but they’ve literally dissolved away”.
The future is back.
Light+Shade opens next Friday, September 5, and runs until Sunday, September 14, at Gallery 154, level 2, 154 Queen St in Auckland. (Monday to Friday noon-6pm; Saturday-Sunday 10am-6pm. Free entry)
Framed and unframed prints are available.
Go to www.oxenhamphoto.com for more information. From September 1, the website will display all the photographs available to purchase for a limited time.
Mike Scott is a multiple award-winning visual journalist whose work spans breaking news, investigations, long-form features and documentaries. For more than 20 years he has told stories across New Zealand and abroad, capturing some of the nation’s most significant moments by blending photography, video and words.
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