Aria's story

Treatment

After about a week of chemotherapy, Aria was sent home with a schedule of clinic visits. ‘I remember thinking, okay, great, we can do this,’ says Chrissy. ‘Then I saw all the medicines.’ With Aria not good at taking any medicine but refusing to have a nasogastric tube, Chrissy was facing a challenge. 

‘We found a way together’ she says. ‘I’d try all the medicines except the chemo, and I’d rate them. I’d be like: OK, what do you want first, the one that tastes like a donut, or the one that tastes like poo? Then Aria would take them.’ 

Chrissy says she was told that the cancer was ‘medium risk’ and to expect six months of treatment. When Aria had routine MRD testing to check on the status of her leukaemia, she was close to remission.

At this point, despite Chrissy feeling a little uneasy, a decision was made to stick to the ‘medium risk’ protocol, rather than move Aria to the more toxic ‘high-risk’ protocol.

With Aria tolerating chemo so well, Chrissy thought maybe it was time to start dancing again.

‘I knew that dancing would keep her legs strong and her spirits up, and she wanted so badly to go. So she’d go dancing with her friends, and then we’d go straight to the hospital to start methotrexate.’ 

When Aria was tested again, almost six months after diagnosis, she was officially in remission.

Complications

After finishing the intensive phase of treatment in February 2023, Aria’s blood counts didn’t bounce back as expected, and she developed fevers that couldn’t be explained. 

‘Nothing was working, and they couldn't work out why,’ explains Chrissy. 

Eventually, in July, after her oncologist feared relapse, testing revealed a rare and life-threatening condition: hemophagocytic lymphohistiocytosis (HLH), later found to be triggered by her leukaemia. Treatment began immediately, with Aria enduring daily transfusions and, at one point, becoming Australia’s highest consumer of platelets. In total she had over 250 platelet transfusions and over 160 blood transfusions.

Aria also developed Langerhans cell histiocytosis (LCH), a rare disorder that caused multiple lesions on her spine and skin.

Aria’s medical team decided she needed a bone marrow transplant, but just before it was due to go ahead, testing showed signs of a suspected leukemia relapse. When the signs were found to be caused by the HLH, not relapse, Aria was taken to intensive care and put on a targeted therapy known as Alemtuzumab. 

Chrissy remembers this as a particularly very difficult time. ‘Aria was fluid overloaded, she had bowel obstructions, her spleen and liver were five times the size they should be, she couldn’t walk anymore …she was miserable. It was just horrific.’

As if things couldn’t get worse, Aria then suffered a massive haemorrhage — a side-effect of another treatment she was on.

ZERO

Aria had by this point become eligible to join the Zero Childhood Cancer Program (ZERO)*. Based on the results of her genomic analysis, she was put on a medicine called trametinib which completely cleared up her LCH. Trametinib was one of the treatments that caused no side effects for Aria, which was a blessing.

ZERO testing also identified that Aria’s cancer had rare chromosomal abnormalities that meant it would be very difficult to treat. Had this been known at the time of diagnosis, Aria would have been classified as high-risk and gone straight to bone marrow transplant.

‘We needed to have caught it before — we needed to give her a new immune system at the beginning, not go through treatment, because it was never going to work,’ Chrissy says. ‘If ZERO had been available to Aria when she was first diagnosed, then she would have had a chance.’

Palliative Care

‘Aria rarely complained. She was so stoic and brave but she was definitely broken by this point,’ says Chrissy. ‘Every day she would try. She would try to choose happy but after 8 months of living within the four walls of her hospital room hooked up to transfusions 12 hours a day, her little spirit was defeated.  She just wanted to be at home with “my Lucas”, as she called her little brother.'

‘I realised that my little girl had been through too much. She was just never going to be the same. To this day I still don’t know after everything they put her through if she would have had any sort of quality of life. I know they were trying to save her, but little bodies can only handle so much toxicity.'

Aria and her family moved into Bear Cottage – the only children’s hospice in NSW. Her brother and dad had an apartment downstairs to stay in, while Chrissy and Aria slept in the same room upstairs. Friends and family were all able to visit. It was the first time she had felt true freedom in 8 months and despite the pain, she was smiling again.

Reflections

'There aren’t really words to describe the pain of losing your child, let alone explain the devastation treatment had on our family. She really was my best friend and living without her is the hardest thing.’

Since Aria’s passing, Chrissy has been very involved in advocacy work, talking to people about Aria and childhood cancer whenever she can.

‘I want the world to know she was here, and that her story is not rare. When people are aware, they care. When they care, they will fight. I want the world to fight back against childhood cancer.’