She was the best, that’s what James Vernon wants you to know about Kirsten.
She was bright and beautiful too, he said, with an unreal sense of humor and the biggest, kindest heart.
She had found her dream job as a graphic designer and together the couple, who met in 2016, were saving up for a house. Children were on the horizon and a wedding too. They had tried several times for the latter, although Covid continued to cancel plans.
But on February 7, they finally got married in Tauranga Hospital. Kirsten wore a white dress and her husband said she looked stunning. She died nine days later at the age of 29.
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Vernon is still reeling from both grief at losing Kirsten and shock at how quickly it happened. It’s not easy to talk about, but he knows she would have wanted him to share her story in hopes it could save other people’s lives.
In November 2021, she started complaining of a bloated and uncomfortable stomach as well as feeling full after eating only a small amount. The symptoms prompted some prescribed treatments for irritable bowel syndrome, but after two weeks with no relief, she underwent invasive hospital tests. They eventually revealed she had diffuse stomach cancer, a type that affects a large part of the stomach rather than just one area.
It’s still unclear if she had the genetic mutation known to cause cancer in some people, and she was unaware of any family history, Vernon says.
Further tests revealed that her cancer was incurable, and while she had originally been given a year to live, Kirsten died less than two months after her diagnosis. She was beautiful, brilliant, brave and incredibly kind until the end.
“She was always concerned about her nurses and making sure they took breaks. She was so brilliant; anything i can do to help this kindness live on and help others is a tribute to her.
In August, the Kirsten Vernon Stomach Cancer Fund is launched to tackle the high rates of stomach cancer in New Zealand; the first $14,000 contributed to the fund will be matched by donations collected in his memory.
The launch is part of a month-long campaign by the Gut Cancer Foundation calling for specific research into the stubbornly high rates of stomach cancer in Maori and Pasifika communities.
More than 500 Kiwis are diagnosed with stomach cancer each year and only 29% of patients survive beyond five years after diagnosis. While cancer is declining in the Pākehā and Asian populations of Aotearoa, the overall rate among Maori and Pacific people is three times higher than among those of European descent.
Of the two types of stomach cancer that account for 95% of cases, the diffuse type tends to be more aggressive. Maori are among the few populations in the world for whom it is more common than the intestinal type. This is partly attributable to the inherited CDH1 gene mutation found in over 400 known families worldwide and around 25 families in New Zealand.
It is estimated that 70% of people with the CDH1 mutation will be diagnosed with stomach cancer before the age of 40, while women have a 35-40% higher chance of getting lobular breast cancer.
According to Dr. Karyn Paringatai, when the gene is functioning properly, it suppresses tumor growth, but when it is not functioning normally, it allows cells to grow out of control, including cancer cells.
A lecturer at the School of Maori, Peace and Indigenous Studies at the University of Otago, she tested for the gene at her aunt’s insistence and had her stomach removed a year later in 2010. Since then , at least 20 of his whānau did the same.
Paringatai is leading a research study focused on the potentially life-saving benefits of reconnecting with your whānau and whakapapa: knowledge, she says, is key to improving outcomes for those affected by inherited conditions.
It wasn’t until after her father’s death, when she returned to the East Coast, that she discovered the rare cancer had affected her family. In her research proposal, she calls the mutation a gift from her father and her tipuna: “I am honored to bear it.”
Paringatati says his father’s story is typical of many young Maori who left their ancestral lands, losing contact with whānau. In the 1960s he left the East Coast to work at Invercargill where she was born and raised, and although she was 11 when she first realized she had to engage with her whakapapa , it took another decade before it started.
“I’m incredibly lucky that I did, because without knowing my whakapapa I would probably be dead. Not knowing almost killed me.
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The importance of whakapapa is evidenced by the experience of McLeod whānau – dont musician Stan Walker is a member – where successive generations have been beset by an unusually high number of diffuse gastric cancer cases.
They believed a mākutu had been placed on them for selling land for quarrying, but in the mid-1990s, nurse Maybelle McLeod brought up the story at a genetics conference and asked more research in the area. She estimated that more than 50 people in her whānau died between the 1950s and 1990s.
In 1997, geneticists at the University of Otago discovered that an inherited mutation in the CDH1 gene was responsible for their deaths. The McLeod family continued to work with the university, benefiting at least 10 other Māori whānau across the country and affecting the lives of hundreds of people.
Bowel Cancer Foundation Chief executive Liam Willis said despite stomach cancer having some of the worst survival rates in the country, research is grossly underfunded.
He hopes the campaign will highlight the problem and raise funds for research and awareness of the warning signs.
“The symptoms can be vague: fatigue, indigestion, weight loss. If you know your body, these things can be a bit of a calling card.
Stomach cancer just doesn’t get the attention it needs, he says, and while there are many reasons for this, he points to one sobering one.
“Survival rates for these cancers are really quite low and what you get with survivability are advocates; people fighting for the cause and fundraising.
“The reality with these Cancers is that they don’t have those advocates.”