Just weeks into Year One, Tilly’s signature sense of humour and witty energy suddenly disappeared. Worried, her parents took her for a blood test. Nothing could have prepared them for the results. Discover how your support this tax time can help families like Tilly’s when they need it most.
As 2025 began, six-year-old Tilly from regional NSW couldn’t have been more excited for the year ahead.
She was just about to start Year One (or as she called it, ‘big school’), and being the outgoing young girl[ that she was, couldn’t wait to meet new friends and learn new things.
“She’s the typical middle child, our social butterfly,” says her parents, Mark and Kirsty.
She’s very popular at school. She loves being around other kids and is a real ‘girly girl’. She loves nail polish, makeup, glitter, unicorns, frills, and tutus. She’s got a witty sense of humour as well. She’s cheeky!
But suddenly that very cheekiness disappeared and was replaced with constant tiredness.
As the first weeks of term unfolded, Tilly became noticeably lethargic – and this was when Mark and Kirsty knew that something was wrong.
Tilly was taken for a blood test, and the results changed everything. She was diagnosed with mixed-phenotype acute leukaemia (MPAL), a rare and aggressive blood cancer.
Mixed phenotype acute leukaemia (MPAL) is both acute myeloid leukaemia (AML) and acute lymphoblastic leukaemia (ALL). Mixed phenotype acute leukaemia is very rare, less than 5% of all leukaemia’s. It’s more common in adults than in children but can occur at any age.
“When I got the call [that Tilly had blood cancer], I had to pull over to the side of the road to vomit. It just felt like a bad dream,” Mark recalls.
We were just terrified and devastated. You question the future of your family, what’s going to happen, and how you’ll cope.
To make an already devastating situation even more stressful, the family – living in regional NSW – had no treatment options close to home and were forced to travel hundreds of kilometers to Brisbane for care.
Limited access to healthcare professionals and services force blood cancer patients from regional Australia like Tilly to travel long distances for treatment and care. People living in regional areas are 17 times more likely to report geographical and financial barriers to care than people living in metropolitan areas.
Even after a sudden blood cancer diagnosis and an emergency airlift to hospital, Tilly’s humour continued to shine through. Having the plane to herself, she joked, felt like living the life of a pop star.
“This is going to sound funny, but she said she felt like Taylor Swift on a private plane!”, says Kirsty.
After Tilly arrived in Brisbane and settled into treatment, her family then faced the question of how they could afford accommodation in Brisbane for four months – all on a single income.
To make matters more complicated, they didn’t know how long treatment in Brisbane would last – weeks, months, or even years. That uncertainty made finding accommodation even more challenging.
Luckily, they were quickly connected with the Leukaemia Foundation and were offered a specially equipped, fully furnished unit at the Clem Jones-Sunland Blood Cancer Centre, one of 11 Blood Cancer Centres across Australia.
This warm, welcoming apartment would be their home-away-from-home for as long as they needed –at no cost. This kind of support simply wouldn’t be possible without the generosity of donors.
The couple couldn’t have been more grateful, not knowing what they would have done if they had to pay for accommodation themselves.
“When Mark told me we could stay in a unit at the Leukaemia Foundation Blood Cancer Centre free of charge for as long as we needed it, I breathed the biggest sigh of relief,” Kirsty says.
We’re a single income family, and Brisbane accommodation is not cheap. If we had to fund it privately, we might have had to remortgage our house.
Nearly half of patients face large out-of-pocket expenses, and commonly must cover the cost of travel, medications, and specialist fees. The average out-of-pocket (OOP) expenditure per patient has risen to $8100 per year. And for other regional Australians like Tilly’s, costs skyrocket even further.
“Having the support of the Leukaemia Foundation, we felt taken care of as a family while we were at our most vulnerable,” Kirsty says. “The team there were amazing and they were always super supportive.”
During treatment, Tilly faced challenges no child should have to.
There were ports, biopsies and lumbar punctures. Strong medications that made her too sick to eat. Sometimes Tilly vomited from stress before going into hospital for chemo.
When things got really bad, she’d imagine herself far away from the brutal realities of cancer, treatment, and all the side effects that come with it. She’d calm herself with a simple mantra: “Just breathe… think of the beach.”
Thanks to the support of generous donors, Tilly’s family was there when she needed them. Most importantly, her older brother and best friend, Harry, was by her side to talk, watch movies, and play when she was feeling up to it.
Last financial year, 547 families like Tilly’s were kept together and provided with accommodation close to life-saving treatment.
But being the social butterfly that she was, Tilly struggled with not just the physical and mental impacts of blood cancer, but the social impact – and being away from school and her friends.
She didn’t like that period at all. She was crying because she just couldn’t stomach anything. That was a really tough period, and I think the reality for Tilly kicked in. Not being able to see her friends and go to school for the whole year was really tough on her.
After four long months of intense treatment, Tilly and her family were told some incredible news. She was in remission, and they were free to return home.
It was obviously so good to be back in our own space. It felt a bit strange at first. You’re not quite sure how to be back in your own space after months away. But it was so good to see our dogs and be able to spend time with them again. It just feels like life can start to return to normal.
When Tilly’s parents were asked what they were looking forward to the most after returning home, their answer was simple.
Just giving the kids back their childhood. Having the kids be able to spend time at school with their friends and just be able to live a normal life.
Today, Tilly remains in remission and is in the maintenance phase, requiring ongoing checkups and tests.
Her parents often reflect on just how strong Tilly has been throughout her blood cancer journey – and know that after everything she’s overcome, there’s nothing she won’t be able to do.
She’s been so incredibly brave. She’s inspired us. If she can get through what she’s done at six-years-old, anything that life throws at her, she’ll manage.
This tax time, you can be there for more Australian families like Tilly’s when they need it most.
“[Donations] make a world of difference to parents that are facing something that feels insurmountable. They’re doing an incredible thing for all leukaemia patients,” says Kirsty.
Your tax-deductible gift before June 30 will help provide families with accommodation near treatment that eases the financial strain – so people can focus on getting better.
