It might help someone else

“It won’t help me but it might help someone else.”

That’s the view of brain cancer patient Casey Miller who has made the courageous decision to donate her brain to the Hunter Brain Cancer Biobank for medical research.

The Brain Cancer Biobank, which is supported by the Mark Hughes Foundation, began with the similar actions of another patient, Jackie Marsh, who also wished to help find a cure.

Casey, a former neonatal nurse at John Hunter Hospital, is the latest.

Now 30, Casey was just 23 when she was diagnosed with a brain tumour. After radiation treatment at Calvary Mater Newcastle, she went into remission.

“Remission for me meant the tumour was still there but wasn’t growing,” Casey said recently after visiting for further tests. “I knew I was highly likely to relapse in 5-10 years.”

That came in May last year when she was diagnosed with an even more aggressive, grade 4 glioblastoma.

“My brain might as well go to a good use to help find a cure for brain cancer,” she said. “I’m limited in terms of what I can do in making a difference in the world and saving myself but I can be part of trying to save other people.”

Not that she is waiting idly by. Casey, who now lives with her mum and dad and a small menagerie on a farm near Port Macquarie, has made a bucket list and is well on the way to achieving it.

Top of that list was advocating for people with brain cancer, brain injury and disability, particularly about the lack of affordable, appropriate and safe housing. She’s made a video with the help of the dreams2live4 charity organisation and has had the issue raised in the Australian Parliament.

On the fun side, she’s also hung out with meerkats, swum with dolphins and the odd seal, and pampered herself on a Hunter vineyard getaway.

Located at the Hunter Medical Research Institute, the Brain Cancer Biobank is operated by the larger Hunter Cancer Biobank, a joint initiative between the Hunter Cancer Research Alliance, NSW Health Pathology and Hunter New England Local Health District.

Manager Cassandra Griffin said the program was one of the first of its kind in Australia and works closely with volunteer patients with brain cancer and their families to facilitate tissue donations once patients have passed away.

“The Brain Cancer Biobank has been operating for some years collecting blood and tissue samples, but we received our first post-mortem donation in 2017. Since then we have received post-mortem tissue donations from another 16 patients,” Cassandra said.

“We continue our commitment to carry out patients’ wishes, ensuring that brain cancer researchers have access to the highest quality tissue.

“We can only do that with support from patients and their families, the cooperation of hospital clinical teams and services, and through the support of organisations like the Mark Hughes Foundation (MHF).”

Casey Miller is also a big MHF supporter and credits the support of Brain Cancer Coordinators Sandy Nixon and Alisha Gooley, who are also funded through the foundation, with helping her through her journey.

At this time of year, Radiation Oncology nurse Jane Griffiths and her mum can normally be seen selling Mark Hughes Foundation beanies in the main hospital corridor and giving staff and visitors the opportunity to support the foundation’s ongoing work.

COVID-19 restrictions might have stopped that this year, but people can still do their bit to support the cause and buy a beanie online at www.markhughesfoundation.com.au.