Why Abbey Barrett's Mum Wants More Federal Government Help Funding Brain Cancer Research
At the end of every day, the Barrett family puts a colourful sticker on the lounge room wall, a symbol of their resilience and survival. It's been 18 months since their precious daughter and sister, Abbey, passed away from brain cancer at just 11 years old. Her teddy remains at the dinner table where she used to sit, and a vegetable patch has been transformed into a flower garden, a small tribute to her memory.
Abbey's mother, Justine, father, Rick, and sisters, Willow and Tasmin, strive to honour her in various ways daily. Despite their efforts, they acknowledge that nothing can truly fill the void left by Abbey's absence. They openly discuss her, sharing memories and keeping her spirit alive.
Abbey was the youngest of four close-aged siblings, and Justine describes her as a 'cool human' and a source of joy. She was full of energy and brought happiness wherever she went.
When Abbey was 10, her parents noticed her fatigue and hand tremors. Initial blood tests came back normal, but further investigation revealed a massive brain tumour the size of a fist wrapped around her brain stem. The family's world turned upside down, feeling like an earthquake.
Justine highlights the stark contrast between their previous lives, filled with Lego and books, and the new reality of medications and cancer brochures. Abbey underwent two brain surgeries, chemotherapy, and radiation, and the Barretts received support from medical professionals. However, making decisions about her care was challenging, as they had to determine when to take her to the hospital and when to manage her symptoms at home, with life-and-death consequences.
Abbey knew she was dying and had conversations about death, envisioning a park filled with loaded fruit trees and puppies. She passed away a year after her diagnosis, at home, in her mother's arms, with the family striving to make her final moments as gentle as possible.
Justine questions the lack of voluntary assisted dying for children, expressing the agony of witnessing Abbey's final hours. The family has been coping with the weight of grief, and Justine is proud of her daughters' resilience, despite the challenges they've faced.
Abbey's older sister, Willow, struggled with the helplessness of watching her sister suffer from brain cancer, impacting her mental health and requiring part-time school attendance.
Justine shares her family's story, hoping to send a message to the Australian government. She advocates for increased funding for brain cancer research, emphasizing the failure of adults to protect their children. Brain cancer statistics are alarming, accounting for 2% of all cancers and causing more deaths in Australia than road accidents annually.
In 2023, 1,579 Australians died from brain cancer, compared to 1,254 road crash deaths. It's the disease that claims more Australian children under 14 than any other. Despite some improvements in five-year survival rates, the curve remains flat, indicating low survivability.
The Brain Tumour Alliance Australia has placed the shoes of those who have lost their lives to brain cancer outside Parliament House in Canberra, calling for action and funding. Dr. Rosemary Harrup, a medical oncologist, highlights the aggressive nature of glioblastoma, a type of brain cancer, with only a quarter of patients alive at two years post-diagnosis.
While surgical techniques for tumour removal have improved, the blood-brain barrier poses challenges for treatments. An international study using ultrasound to temporarily open the barrier, combined with chemotherapy, shows promise. Researchers like Associate Professor Phillippa Taberlay are exploring DNA-level solutions, focusing on epigenetic dysregulation in childhood cancers like medulloblastoma.
Clinical trials offer hope for cancer patients, but funding is limited, according to Dr. Harrup. The Brain Tumour Alliance Australia estimates the economic burden of brain cancer in Australia at $850 million in 2025, with a projected cost of $3.2 billion by 2050. The alliance seeks $200 million over 10 years for research and trials, and up to $10 million for improved clinical care, including specialised nurses.
The Alliance highlights the disproportionate burden and complexity of brain cancer, despite inadequate funding and policy approaches. Direct research funding for brain cancer has consistently lagged behind other cancers, with a total of $111.6 million from 2003 to 2020, compared to $431.6 million for breast cancer and $234.7 million for leukaemia.
The Australian Brain Cancer Mission invested $126 million over 10 years, with $50 million from the government and $76 million from philanthropic organisations. Federal Health Minister Mark Butler expresses commitment to increasing funding and making new treatments accessible to families on the PBS.
Dr. Harrup emphasises the importance of discussing cures and improving quality of life for patients who cannot be cured immediately.
