Audrey’s rare cancer grows like a frayed shoelace that can’t be tied
Improved treatment for rare and aggressive “ALT cancers” that claim the lives of 5000 to 7000 Australians each year is the focus of $5 million in research funding.
Madeline Scott knows the reality of rare cancers, as well as the need to multiply efforts to better understand and combat them.
Her daughter Audrey was diagnosed with the rare and aggressive brain cancer medulloblastoma soon after her first birthday in March and, on Anzac Day, she had a 4.5-centimetre tumour removed.
Audrey has a rare form of brain cancer.Credit: Penny Stephens
Since then, the Frankston toddler has spent far too long in the Royal Children’s and Monash Children’s hospitals undergoing imperfect treatments that offer little for the 5 per cent to 15 per cent of cancer patients with a rare form of disease.
“Given the blood-brain barrier, and given Audrey’s age, she’s not able to have radiation therapy,” Scott said. “Chemotherapy-only protocols are quite difficult to treat children like Audrey with, these types of tumours with ... so her tumours are all through the front of her brain and down her spine as well.”
The family is now focused on a project being led by the Children’s Medical Research Institute, which has received a $5 million National Health and Medical Research Council Synergy Grant to improve the treatment of rare and aggressive “ALT cancers”, including bone and soft tissue sarcomas, some pancreatic cancers and many aggressive brain tumours.
“Research is really the only way that we’re ever going to find a cure, and it’s through projects like this that then allow breakthroughs to happen,” Scott said.
Audrey with parents Sam Tunks and Madeline Scott and brother Elliott, 3.Credit: Penny Stephens
Globally, ALT cancers claim up to 1.3 million lives every year including those of 5000 to 7000 Australians, and for parents like Scott anything that can help unlock more secrets about rare disease brings fresh hope.
In the most simple terms, cancer cells kill because they have found a way to override a cell’s normal off-switch and continue to replicate without limit, though how this happens in some rare cancers had long eluded scientists.
The mechanism used by this form of cancers to bypass the off switch is called alternative lengthening of telomeres, or ALT, which was first discovered by Children’s Medical Research Institute-led scientists in the mid-1990s.
