At just three years old, Elsie Avery is growing up alongside her twin brother, and her two older siblings, 6 and 8 years of age.
But life for the Avery family changed when Elsie was diagnosed with DIPG (diffuse intrinsic pontine glioma), a rare and aggressive brain tumour that develops in the brainstem, which controls many important functions including breathing, swallowing and movement.
DIPG is a beast, there is currently a 0% survival rate and the prognosis of 9-12 months post diagnosis has not changed in over 50 years. The only medical standard of care is palliative radiation, which aims to prolong life expectancy and improve the patients quality of life. Our kids deserve so much more out of life, and that’s why the Avery family is fighting for change and raising awareness for brain cancer, the cancer that devastatingly kills the most Australian children each year.
For Elsie’s mum, Abbey, the diagnosis meant entering a world she never expected to know.
“We as Elsie’s parents spend so much time researching potential clinical trials options, and then there’s countless hours of hospital visits for check ups, MRI’s and any treatment that might be available”.
With limited treatment options for DIPG, Abbey and her family have had to navigate a complex medical system while also searching for clinical trials, emerging treatments and opportunities that may be available to Elsie.
At times, even finding out what is available, whether Elsie is eligible and how to access it has been a challenge.
Abbey has also seen how gaps in communication and awareness across the health system can affect critical access to treatment.
Elsie is accessing a self-funded vaccine, funded by generous community members and family supporters. The family now work through the approvals needed from the hospital.
And they’re not navigating it all alone.
Through Peace of Mind Foundation’s National Advocacy Service, the team have supported Abbey to navigate the NDIS and other systems, taking away some of the administrative load at a time when the family already has so much to carry.
“I didn’t realise this service could be provided. Fiona was so supportive and knowledgeable about the process. She explained things in a way we understood, and everything ran so smoothly.”
For Abbey, that support has meant being able to lean on someone who understands the complexities of brain cancer, rather than having to figure it out alone.
This Childhood Cancer Awareness Month, Peace of Mind Foundation is sharing Elsie’s story to help shine a light on the realities facing children affected by brain cancer and the families who love them.
No parent should have to spend their child’s childhood fighting for answers, access and support.
