Bess Manson looks back at the short, extraordinary life of young Jemima Winter-Belle Gazley, who died trying to help cure the illness that cost her her life.
The night before she died, Jemima Gazley said she was going to meet the “final boss” soon.
He was holding the hands of his mother and father when he died peacefully at the age of 15.
It was a terrible privilege to be there when he took his last breath – they were there when he took his first breath.
But Ray and Oliver Gazley knew that Jemima had accomplished it in her short time on the planet.
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Her beautiful ordinary life became extraordinary when, after accepting her own terminal cancer diagnosis, she decided to be part of the treatment if she was incurable.
In its last two weeks, it has raised more than $725,000 in funding for researchers seeking a cure and better treatment for cancer that ended its life just nine months after diagnosis.
Perhaps more importantly, he donated his brain tumor and tissue to the cause. “If they can’t get it out while I’m alive, mom, they can when I’m dead,” she said.
Jemima died knowing she was doing something pretty big.
His life had changed for a penny.
Woke up feeling dizzy after a family dinner on Waitangi Day 2021. He vomited the next day. On Thursday, his family noticed a light slurry.
An MRI showed a tumor.
Within 10 days, it had turned into a seemingly struggling, fatal diagnosis: diffuse intrinsic pontine glioma (DIPG), a dreaded acronym that translates as a malignant aggressive tumor in the brainstem. The spider web-like tumor, often called Hitchhiker by the family, was inoperable.
Jemima’s parents were told that the only course of treatment was palliative care, with a life expectancy of between nine months and a year.
After that, he looked at his life in parts – diagnosis, treatment, living with cancer and dying of cancer.
The goal was always to make this third chapter the longest. Episode four was the one they wanted to avoid, but Jemima knew it was inevitable.
She accepted her future as a fait accompli.
His family has had moments of fear and sadness, but he says the third episode was one of great fun, laughter, and enlightenment.
“She was always laughing. She never ceased to be a brave older sister to her siblings. A little over a month after the death of her only daughter, Oliver, from her family home in Seatoun, oddly enough, her life got better,” says Oliver.
He lived every day well. After the treatment, he would go to the second-hand stores on K Road with his mother and catch the old-fashioned fashion he loved so much.
At his home in Wellington, he volunteered with the SPCA to care for “scary cats” who hadn’t had the best start in life.
Even when he lost his appetite, he wanted nothing more than to go to a restaurant.
The gallows humor may have shocked those who witnessed it, but it helped him face fear. A born comedian, he told his parents that his brain tumor had opened up a whole new world of comedy.
“You can’t go there unless you have a brain tumor, but once you’re in my place, f*#! is rich in collecting,” he said.
There was fear and anger. There was sadness.
Oliver used to say that he sometimes needed alone time, but he says these feelings aren’t the dominant feature of his presence.
Under the weight of its severity, he underestimated his illness. ‘Oh Mama’ she’d say, ‘It’s just a scratch’.
At her funeral, her mother told four versions of Jemima:
The first was the easy baby, the older sister who was nice to her two brothers Theo and Rudy.
a netball player; a hip-hopper; a baker who dreams of working in a patisserie in Paris; a skier; sun worshiper; Traveler; A grateful girl for a good buffet breakfast.
She was a budding feminist who fought against period shame.
He campaigned to buy more sanitary waste units when he was in middle school. She wrote to the male principal explaining why one unit was not enough for the whole school. Before long units are dispensed in all bathrooms.
She was a burgeoning activist involved in climate change protests.
He had a strong sense of social justice and stood up to bullies at school.
He was a friend and ally of the LGBQTI community. His friends would say he was an inclusive supporter.
Provided by Prime
David Downs in Touching Cancer.
The second version of Jemima was young.
Life was good – a boyfriend, good friends, skiing with my dad.
But there was another side to this youth, says Ray.
“His dissatisfaction with who he is from his younger self because his perception of who he is in life is not adequate.”
She was able to express this during what Ray calls the third version of Jemima: the enlightened girl who carries the burden of a deadly diagnosis lightly, with humor, and without a shortage of grace.
Ray says the supernova flashes its brightest light before it ends.
Cancer gave him the ability to see the world as it is. He strangely says it’s a gift.
“What he saw as big problems when he was younger suddenly seemed like nothing. Released from all this. Gained a perspective on life and what really matters.
“She said to me: ‘I can’t regret having this disease, mom. Because Jemima cried herself to sleep. He had everything. But she made up stories that I didn’t have enough – not skinny enough, not pretty enough, not popular enough, not good enough… I guess I’m very lucky mom, because I’m the happiest person I’ve ever seen in my life, know that none of that matters.”
The fourth version of Jemima was a warrior. The girl who raised more than $725,000 and donated her brain to cancer research.
He lives in Jemima.
He was in the third episode – having been living well with cancer for several months – when he started to lose his balance in early September. His progress towards the final chapter had begun. Her family knew and Jemima knew.
He decided he wanted a party. Dress up and be happy party. A celebration of life, he called it.
Ray knew in himself that everything had changed and was about to die, says Ray.
“I think he knew it was a living burial. She loved to dress. She knew she would never get the prom. She wore a black velvet jumpsuit that night, and she looked beautiful.”
After the party, friends asked what they could do to help.
Until then, he had kept his illness pretty secret, and most people didn’t know how sick he really was.
Jemima was quite comfortable when she suggested that they start a Givealittle page to raise money for DIPG research rather than asking for practical help.
Ray has been in contact with Matt Dun, associate professor in Newcastle, Australia, since Jemima was diagnosed. Dr Dun had been researching the disease ever since his 4-year-old daughter died of the disease.
He had a vengeance against DIPG. So are Gazleys.
The money could go to the work he and his team did to find better treatment and ultimately a cure.
They sent the Givealittle link to everyone who came to the party – only 50 people under Covid restrictions.
Jemima would put her savings at -$5382. He hoped to raise about $20,000.
These 50 people shared the link. Shared over and over again. It made it to Hollywood, where an old acquaintance of Oliver’s, Kiwi director Taika Waititi, sprinkled some stardust on him. The money kept flowing.
The day after the Givealittle page opened, Jemima was surprised to see that they had already raised $7500.
He decided to “expand” and aim higher. According to Ray, he took a piece between his teeth and really decided to go for it. He said: ‘Share this wherever possible. Let’s do as much as we can.’”
Thing He wrote about Jemima’s efforts, and the next day Oliver was on 2ZB talking about Jemima’s Wish, the name they gave the fundraiser.
It went from $7500 to $50,000 to $100,000.
She was stunned by the reaction, but Jemima felt pretty overwhelmed when Ray read the comments about the donations.
He felt that his actions did not warrant the praise or praise he received. He wasn’t looking for that, Ray says.
Still, it gave him purpose and an impulse when he was deep in his fourth episode.
She regained her appetite for a while, she was hopeful, excited, positive.
But on Friday, October 9, it began to deteriorate. On Sunday, holding her mother’s hand, she said she’d be on her way soon to “meet the last boss,” a term used for the final stage of a video game.
He went to the Hospice on Monday morning.
Just as the Givealittle page was about to close with $400,000, the public called for an extension. Crowdfunding gained momentum on social media. Radio stations were receiving calls from people who wanted to donate.
As these donations continued to flow, Jemima lost consciousness.
Crowdfunding would eventually reach $725,000.
On the evening of October 12, Jemima died.
He wanted an open coffin at his funeral. A few weeks ago she had chosen what to wear.
She talked a lot about what she was going to wear at the wedding. Although she knew that would never happen, she sent her mother to a thrift store in Wellington to find a wedding dress.
She dyed the dress pink in a large pot, stirring it with one arm using a large wooden stick.
She knew she’d be wearing this to her funeral, Ray says.
But there was no sadness.
“We hung it on a coat hanger to dry. She looked at him and said, ‘Mom, this looks great!’ She said, “It’s like she’s going to the prom, but in her mind, she’s preparing the perfect funeral for herself.”
She was wearing that pink wedding dress inside her straw coffin. She wore flowers in her dyed pink hair.
On one side was the faithful old teddy bear, on the other a long string of courage beads, each representing a cure in his journey to cancer. The beads are color coded – black for blood test, white for chemotherapy, large beads for acts of courage, yellow for nights spent in the hospital and so on. Too many beads.
Her family says she was very clear about how Jemima would like to be remembered.
Not as a sufferer. Not as someone with an incurable brain tumor. It’s not someone with cancer and bead strings to prove it.
She wanted those who were wondering to know that Jemima Gazley is recovering. And that it is free.
Artist Piera McArthur, a family friend, expressed her feelings in one painting:Jemima leaps into the glow of her new glory”
She is dressed in pink. Cured. Free.
- Sources: Gazley family, Stuff, Newcastle Herald