For Shane Luke, the descent began not with a crash, but with a series of subtle, frustrating disruptions. In April 2024, the Mamaku father started experiencing a loss of balance, nagging headaches and a sudden, inexplicable aversion to certain smells. At 47, these were the kinds of symptoms that could be attributed to the grind of daily life. His GP initially suggested stress and vertigo, advising him to simply monitor the situation.
But the symptoms did not subside; they intensified. By November, the dizziness had evolved into nausea and vomiting, and his vision began to blur. What had been dismissed as stress was, in reality, the onset of a devastating neurological battle. Following a referral for MRI and CT scans, the Luke family received the news that would redefine their lives: Shane had two brain tumours.
Shane passed away on April 16, 2026, after a two-year struggle with a terminal grade 4 glioma. He leaves behind his wife of 19 years, Sara, and their four children. His story, and that of others like him, highlights a critical gap in early diagnosis and the profound emotional toll of primary brain tumours—diseases that often hide in plain sight until they become catastrophic.
The Brutal Progression of Grade 4 Glioma
A grade 4 glioma is the most aggressive form of primary brain tumour. These tumours are characterized by rapid growth and a tendency to infiltrate surrounding healthy brain tissue, making complete surgical removal nearly impossible. In Shane’s case, surgeons at Waikato Hospital were able to remove one tumour, but the second was located in an area deemed “too risky” for surgery.
The medical trajectory for such diagnoses is often a grueling cycle of intervention and relapse. Shane began a regimen of radiation and chemotherapy in February 2025. For a time, there was hope, but by mid-2025, scans revealed the tumour had doubled in size despite the treatment. The prognosis was stark: he was told he would be lucky to make it to Christmas.
| Date | Event/Medical Milestone | Outcome/Status |
|---|---|---|
| April 2024 | Onset of balance issues, nausea, and smell aversion | Initially attributed to stress/vertigo |
| November 2024 | Worsening symptoms and vision loss | MRI/CT reveal two brain tumours |
| February 2025 | Initiation of radiation and chemotherapy | Treatment failed; tumour doubled in size |
| July 2025 | Family trip to South Island | Funded by White Matter Brain Cancer Trust |
| March 2026 | Seizure and detection of third tumour | Treatment declined |
| April 16, 2026 | Passing | Died at age 47 |
Finding Agency in the Final Months
When the standard medical protocols failed, the Luke family shifted their focus from longevity to quality of life. Supported by funding from the White Matter Brain Cancer Trust, the family of six spent two weeks in the South Island in July 2025, creating memories that Sara says were vital for the children.
Despite the terminal diagnosis, Shane continued to fight in the ways he could. He underwent a pressure-relief operation and privately funded two courses of immunotherapy, a treatment that attempts to prime the body’s own immune system to attack cancer cells. By October, however, the exhaustion had become overwhelming. Shane made the conscious decision to stop the drugs, choosing to spend his remaining time living rather than treating.
“He just wanted to live. And we did,” Sara recalls. From mid-March until the end, the family cherished a “really excellent run” that included a Disney cruise, days spent on their boat, and family barbecues. Even as the fatigue grew—making simple tasks like making a sandwich or doing the dishes an arduous chore—Sara remembers him as a man who simply wasn’t a quitter.
A Shared Burden: The Diversity of Brain Tumours
Shane’s experience is mirrored in the story of Jon Moody, a 75-year-old Tauranga retiree. While Shane’s battle was marked by a rapid decline in a middle-aged father, Jon’s diagnosis of glioblastoma illustrates how the location of a tumour dictates the nature of the disability. Jon’s tumour developed on the motor cortex, the region of the brain responsible for voluntary muscle movement, resulting in motor paralysis.
For Jon, surgery was not an option due to the tumour’s location, and chemotherapy was not recommended. Now largely confined to a bed or wheelchair, Jon and his wife, Katharine, treat every day as a blessing. Their experience underscores a sobering reality shared by Sarah Verran, CEO of Brain Tumour Support NZ: there are over 130 different types of primary brain tumours, and because each subtype is rare, the path to diagnosis and treatment is often fragmented.
Verran estimates that as many as 7,000 New Zealanders are currently living with a brain tumour. The lack of public awareness often leads to the “wait and see” approach that delayed Shane’s initial diagnosis, a delay that can be critical when dealing with grade 4 malignancies.
Turning Grief into Advocacy
In the wake of Shane’s death, Sara Luke has turned her grief into a mission to ensure other families do not navigate this diagnosis alone. To mark Brain Tumour Awareness Month, she is walking 5km daily to raise funds and awareness for Brain Tumour Support NZ.
“It forces me to get out and walk outside and do some exercise,” Sara says. “Otherwise, you just end up in bed feeling sorry for yourself and grieving.”
The effort coincides with the charity’s “Brainy Beanies” campaign, a signature fundraiser where unique, handcrafted beanies are sold to fund patient and caregiver support programmes. The goal is not only to raise money but to push for better care, more refined treatments, and improved outcomes for patients across New Zealand.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
The “Brainy Beanies” campaign is currently active, with beanies available for purchase online and at events such as Fieldays, with all proceeds supporting the Brain Tumour Support NZ caregiver programmes.
We invite you to share this story to help raise awareness for brain tumour symptoms and support the families affected by these rare diseases. Please leave your comments and reflections below.
