‘If I can’t be cured, I’ll be the cure’

Bess Manson looks at the short, extraordinary life of Jemima Winter-Belle Gazley.

The night before she died, Jemima Gazley joked she would soon go to meet the ‘‘final boss’’. When she did die, peacefully at the age of 15, she was holding the hands of her mother and father.

It was a terrible privilege to be there as she took her last breaths – they were there when she took her first.

But Ray and Oliver Gazley knew Jemima had nailed it in her short time on the planet.

Her beautifully ordinary life became an extraordinary one when, having accepted her own terminal cancer diagnosis, she decided to be part of the cure if she couldn’t be cured herself.

In her final two weeks she crowdfunded more than $725,000 for researchers looking for a cure and better treatment for the cancer that ended her life just nine months after diagnosis.

Perhaps even more importantly, she donated her brain tumour and tissue to the cause. ‘‘If they can’t take it out while I’m alive, Mum, they can take it out when I’m dead,’’ she had said.

Jemima died knowing she had done something pretty big.

Her life had changed on the turn of a dime.

After a family dinner on Waitangi Day 2021 she woke up feeling woozy. The next day she vomited. On Thursday her parents noticed she had a slight slur. An MRI showed a tumour. Within 10 days she went from seemingly fighting fit to a terminal diagnosis: diffuse intrinsic pontine glioma (DIPG), an awful acronym translated as a malignant aggressive tumour in the brain stem. The spiderweblike tumour, often referred to as The Hitchhiker by the family, was inoperable.

Jemima’s parents were told that the only treatment pathway was palliative care and that she had between nine months to a year life expectancy.

She looked at her life after that in chapters – the diagnosis, the treatment, living with cancer and dying with cancer.

The goal was always to make that third chapter the longest. The fourth chapter was the one they wanted to avoid, but Jemima knew that was inevitable.

She accepted her truncated future as a fait accompli.

There were moments of fear and sadness, but that third chapter was one of great fun and laughter and enlightenment, her parents say.

‘‘She was always laughing. She never stopped being a bolshy big sister to her brothers. Strangely enough her life got better,’’ Oliver says from the family home in Seatoun a little more than a month after his only daughter’s death.

She lived every day well. She’d go with her mother to the thrift stores on K Road after treatment, snapping up her beloved vintage fashion.

She volunteered with the SPCA at home in Wellington looking after the ‘‘scaredy-cats’’ who had not had the best start in life.

She’d love nothing more than to go out to a restaurant, even when she was losing her appetite.

Her gallows humour may have shocked those who witnessed it, but it helped her face the fear. A natural comedienne, she told her parents her brain tumour had unlocked a whole new realm of comedy.

‘‘If you don’t have a brain tumour you can’t go there, but once you’re in my shoes, f*#!, it’s rich for the picking,’’ she said.

There was fear, anger. There was sadness. Sometimes she would say she just needed time alone, but these feelings were not the dominant feature of her existence, Oliver says.

She made light of her disease under the weight of its seriousness. ‘Ah Mama’, she would say, ‘Tis but a scratch’.

At her funeral her mother described the four versions of Jemima:

The first was the easy baby, the older sister who was good to her two brothers, Theo and Rudy.

A netballer; a hiphopper; a baker who dreamed of working in a Parisian patisserie; a skier; a sun-worshipper; a traveller; a girl with an appreciation for a decent buffet breakfast.

She was a budding feminist who fought against period shaming.

While at intermediate school she campaigned to get more sanitary disposal units. She wrote to the male principal articulating why one unit was hardly enough for the entire school. Before long units were dispensed in all bathrooms.

She was a burgeoning activist who went on climate change protests.

She had a strong sense of social justice and stood up to bullies at school.

She was a friend and an ally to the LGBQTI community. An upstander for inclusively, her friends would say.

The second version of Jemima was the teen.

Life was good – a boyfriend, good mates, skiing with Dad.

But there was another side to this teenhood, says Ray.

‘‘The dissatisfaction for who she was with her teenage self because her perception of who she was in life was not adequate.’’

She was able to express this during what Ray called the third version of Jemima: the enlightened girl who carried the burden of a terminal diagnosis lightly, with humour and with no shortage of grace.

The supernova burning its brightest light before it would cease, says Ray.

The cancer gave her the ability to see the world as it really is. It was in some strange way a gift, she says.

‘‘All of the things she saw as big problems as a teenager suddenly seemed like nothing. She was released from all that. She got a perspective on life and what really mattered.

‘‘She told me: ‘I cannot regret having this disease Mama. Because Jemima used to cry herself to sleep. She had everything. But she created stories of not having enough – not skinny enough, not pretty enough, not popular enough, not good enough

. . . I think I’m so lucky Mama, because I’m the happiest I’ve ever been in life to know that none of that matters’.’’

The fourth version of Jemima was the warrior. The girl who raised more than $725,000 and donated her brain to cancer research. That Jemima lives on.

She had been in the third chapter – living well with cancer for several months – when in early September she started to lose her balance. Her progression towards that last chapter had begun. Her family knew it and Jemima knew it.

She decided she wanted a party. A dress-up-and-be-merry party. A celebration of life, she called it.

She knew in herself that things had changed and that she was dying, says Ray.

‘‘I think she knew that she was having a living funeral. She loved getting dressed up. She knew she would never get her school ball. That night she wore a black velvet playsuit, and she looked beautiful.’’

After the party, friends asked what they could do to help.

Up until then she had kept her illness pretty private and many had not known how sick she really was.

Jemima was quite casual when she suggested that instead of asking for practical help that they start a Givealittle page to raise money for research into DIPG.

Ray had been in contact with associate professor Matt Dun in Newcastle, Australia, since Jemima’s diagnosis. Dr Dun had been researching the disease since his 4-year-old daughter died from it.

He had a vendetta against DIPG.

So did the Gazleys.

The money could go towards the work he and his team were doing to find better treatment and eventually, a cure.

They sent the Givealittle link to everyone who came to the party – just 50 people under Covid restrictions.

Jemima would put her own savings in – $5382. She hoped to raise around $20,000.

Those 50 people shared the link. Again and again it was shared. It went all the way to Hollywood where Kiwi director Taika Waititi, an old acquaintance of Oliver’s, sprinkled some stardust on it. The money continued to pour in.

The day after the Givealittle page opened Jemima was surprised to see they had already raised $7500.

She decided to ‘‘go large’’ and aim higher. She got the bit between her teeth and decided to really go for it, according to Ray. ‘‘She said: ‘Share it wherever you can. Let’s make as much as we can.’’’

Stuff wrote about Jemima’s efforts and by the following day Oliver was on 2ZB talking about Jemima’s Wish, the name they’d given the fundraiser.

It took off, going from $7500 to $50,000 to $100,000.

She was astounded at the reaction but when Ray read the comments attached to the donations Jemima felt quite overwhelmed. She felt her actions didn’t warrant the accolades or

praise she was getting. She wasn’t looking for that, says Ray.

Nevertheless, it gave her a purpose and a drive at a time when she was deep into her fourth chapter.

For a time she regained her appetite, she was hopeful, excited, positive.

But by Friday, October 9, she began to deteriorate. On Sunday, as she held her mother’s hand, she joked she was soon heading off to ‘‘meet the final boss’’ – a term used for the last stage of a computer game.

On Monday morning, she went into Hospice.

Just as her Givealittle page was about to close at $400,000 the public called for an extension. The crowdfunding was gathering momentum on social media. Radio stations were fielding calls from people wanting to donate.

Jemima fell unconscious as those donations continued to flow.

Her crowdfunding would eventually reach $725,000.

On the evening of October 12, Jemima died. She had asked for an open casket at her funeral. She had chosen what she would wear several weeks earlier.

She had often talked about what she would wear at her wedding. Even though she knew that would never come to pass, she dispatched her mother to dig out a wedding dress at a Wellington thrift shop.

She dyed the dress pink in a big pot, stirring it using a big wooden

stick with her one working arm.

She knew she was going to wear this for her funeral, Ray says. But there was no sadness. ‘‘We hung it up on a coat hanger to dry. She looked at it and said, ‘Mum, that looks so great!’ It was like she was going to the prom but in her mind she was building a perfect funeral for herself.’’

In her wicker casket, she wore that pink wedding dress. She wore flowers in her dyed pink hair.

On one side of her lay her faithful old teddy bear, on the other a long string of courage beads, each one representing a treatment during her cancer journey. The beads are colour coded – black for blood test, white for chemo, big beads for acts of courage, yellow for nights spent in hospital, and on it goes. Too many beads.

Jemima had been very clear about how she would like to be remembered, her parents say.

Not as someone suffering. Not as someone with an incurable brain tumour. Not someone with cancer and a string of beads to prove it.

She wanted anyone wondering to know that Jemima Gazley is cured. And that she is free.

Artist Piera McArthur, a family friend, captured her sentiment in a painting with the words: ‘‘Jemima leaps into the radiance of her new glory.’’