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Ruby Verran’s diagnosis with a brain tumour “the size of an orange” at age 10 was “the unthinkable” for her family. “You just never think that that’s going to happen to you or to your kids,” her Rotorua-raised mum says. Almost a decade on, Ruby and her family live with the complex impacts of the tumour every day, but the artistic 19-year-old doesn’t want to let it define her.
For nearly a decade, Waikato teenager Ruby Verran has not been able to tell when she is full.
Mother Sarah Verran says her daughter experiences hyperphagia – an extreme and insatiable hunger that is the most challenging of the “irreversible” impacts of a rare, benign brain tumour diagnosed at age 10.
Verran, who grew up in Rotorua, said Ruby had to learn to do things “all over again” after a lifesaving childhood surgery and still has permanent, complex support needs.
Now 19, her “incredibly resilient” daughter dreams of being an artist and lives in Cambridge with her family – mum Sarah, dad Corey and brother Luka.
Verran, who became chief executive of Brain Tumour Support New Zealand in January, shared Ruby’s story with the Rotorua Daily Post during brain tumour awareness month, May.
Reflecting on the “very isolating and lonely time” after Ruby’s diagnosis, she said she would have loved to have been able to connect with others going through similar experiences.
“I see really clearly the need for our service and support”.
Verran said Ruby’s symptoms started started in 2015. These included more headaches than usual and wanting to rest and sleep a lot.
“She’d been a really kind of outgoing, gregarious 10-year-old girl who wanted to hang out with her friends and she played netball … but then she started complaining of headaches all the time.”
Verran said Ruby became more anxious and did not want to do things with groups of people.
A doctor told them nothing was wrong and “sent us home with Panadol”.
“It was a visit to the optometrist – because I thought she was maybe having trouble with her eyesight – and then they found some swelling behind her optic nerve.”
An MRI scan at Waikato Hospital revealed Ruby had a craniopharyngioma tumour – a rare benign tumour of the central nervous system.Verran said the tumour was “the size of an orange”.
Ruby Verran pictured in 2015 post-surgery.
Verran said it was “incredibly confronting information” and an emotional time with many questions.
“It is the unthinkable.”
At Starship Hospital Ruby had surgery – a craniotomy – to remove as much of the tumour as possible. Some on the optic nerve had to stay to save her sight.
Ruby Verran with her younger brother, Luka, and her parents, Sarah and Corey Verran in 2015.
“She had an amazing team at Starship and they basically saved her life.
“We were told that she had been overcompensating for ages and literally she would have just dropped dead one day.”
Ruby had two more surgeries due to having hydrocephalus – the ventricles in the brain not opening and closing properly – so she had a shunt put in, Verran explained.
Post-surgery, Ruby had a stroke.
“Now she’s got permanent complex health and support needs”, Verran said.
Learning to ‘do things all over again’
Ruby experienced several “irreversible” impacts from the tumour, Verran said.
The tumour impacted Ruby’s hypothalamus – the gland that sends a message from the stomach to the brain to say you are full.
Having hyperphagia was the biggest challenge for Ruby – “there’s no satiety control”.
Verran said after the surgery, Ruby “had to learn to do things all over again” such as understanding what time of day it was and whether she had eaten.
She will never drive due to not having peripheral vision. She experiences fatigue and short-term memory loss, and needs medication “to keep her body functioning”.
Waikato teenager Ruby Verran was age 10 when she was diagnosed with a brain tumour in 2015. Several surgeries followed.
But Ruby was “incredibly resilient” and wanted to be an artist, Verran said.
“She’s amazing at art and painting and drawing and that’s her calm activity that keeps her balanced and gives her joy.”
She goes to school part-time, does art classes and delivers newspapers.
“Having a life where she gets to make those choices and doesn’t let that brain tumour define her.”
‘Our life has completely changed’
Verran said Ruby had regular specialist appointments and annual MRI scans to monitor if the tumour returned.
“Her life expectancy will just be the same as anybody else – it just comes with some complications.”
Verran said Ruby needed 24/7 care and had support workers.
“Our life has completely changed – our home is built to support Ruby and all of our decision-making around being able to do things like a family would has to be with Ruby in mind.”
Sarah and Ruby Verran pictured last year.
Brain Tumour Support New Zealand – established in 2019 and offering support resources – did not exist when Ruby was diagnosed.
Now the chief executive, Verran wanted the charity “to be known about before they’re needed”.
“I want to be able to offer the depths of service from support groups, navigation of the health system, supports available at all the different stages of your brain tumour journey and the simple act of being able to bring a listening ear and a few moments of joy and calm.”
She said the charity was funded through grants, fundraising and donations.
Verran said its flagship fundraiser was selling “brainy beanies” on its website and at Fieldays in Hamilton.
The “much-needed” money raised went towards funding “brainboxes” – support kits for people with a brain tumour and their carers.
Brain tumours in New Zealand
About 350 people are diagnosed with a primary brain tumour each year – 1.4 per cent of cancers diagnosed. Many more are diagnosed with secondary, or metastatic, brain tumours spread from elsewhere in the body.
About 260 people die each year from brain cancer – the 10th most fatal cancer.
Brain cancer is the biggest cancer killer of children, responsible for 42 per cent of all childhood cancer deaths (almost double that of leukaemia).
Survival rates for brain cancer have not improved significantly in the last 30 years. The five-year survival rate for glioblastoma, the most common type of brain cancer in adults, is 5 per cent.
Brain tumours can affect anyone, of any ethnicity, and at any age. The causes of most are unknown so prevention and screening are not possible.
