Kathy is a proud mother and grandmother of three from Newcastle, NSW who has had her life turned upside down by blood cancer three times.
“I was [first] diagnosed in 2007. Prior to that, I was working full time and supporting my daughter and paying a house off. But unfortunately, I got sick in February of 2007 and had 12 months in hospital,” she says.
As a First Nations woman, like many within her community, Kathy faced significant barriers to receiving adequate treatment and recalls feeling discriminated against and treated differently within the healthcare system.
I took myself to emergency because I had all these horrible symptoms. I didn’t know what that was from. They [initially] misdiagnosed me and sent me home with a chest infection. I [then] went to my doctor three days later and found out that I had advanced leukaemia.
Since her first diagnosis, she has faced two relapses, years of ongoing treatment, and a bone marrow transplant. Kathy is currently in remission once again, and is part of the Leukaemia Foundation’s Lived Experience Engagement Program (LEEP). The program empowers patients, caregivers, and loved ones to have input into the services the Leukaemia Foundation provides, helping ensure they meet community and client needs.
Kathy decided to become part of the LEEP as a way to give back to the blood cancer community, as well as the Leukaemia Foundation who provided accommodation for her during treatment.
The Leukaemia Foundation gave us accommodation down at Westmead near the hospital. It was a really nice 3-bedroom villa, so my daughter could come down with the grandkids because she didn’t have anyone to watch them.
As a LEEP member, Kathy played an active role in driving change for her community as part of the Epidemiology Study Roundtable in Brisbane in 2025. On the day, First Nations Australians, carers, and health workers came together to lay bare the real experiences facing the community to provide a roadmap for action. Kathy shared her own lived experience, highlighted the challenges First Nations Australians with blood cancer face, and proudly represented her community to help level the playing field.
Visit our webpage to learn more about the Leukaemia Foundation’s Lived Experience Engagement Program (LEEP) or to check your eligiblity.
The Leukaemia Foundation has recently endorsed a new three year Lived Experience Engagement Strategy, reflecting our ongoing commitment to listen to, learn from, and work alongside people with lived experience.
This strategy was developed with input from LEEP members like Kathy, and provides a clear direction to ensure lived experience involvement is meaningful, consistent, and supported, while also helping us meet accreditation standards and align with best-practice approaches.
