Aria’s Story and the Fight for Better Treatments for Childhood Cancer – Children’s Cancer Institute
Children’s Cancer Institute shared a post on LinkedIn:
“Aria was an energetic, smart, and quirky little girl who brought joy and laughter to all who knew her. Her mum, Chrissy, once asked what she wanted to be when she grew up, and Aria said,
‘I want to be the sun so I can shine on everyone’.
In September 2022, Aria’s glands were swollen. When Chrissy and the doctor looked at the blood test results together, neither of them could believe their eyes. ‘It said ‘indicative of acute lymphoblastic leukaemia.’ We’re both staring at it, and I’m like, does that say…? And he said: I’m so sorry.’
After further testing, Aria was diagnosed with a difficult-to-treat type of leukemia known as T-cell acute lymphoblastic leukemia (T-ALL).
They were told that the cancer was ‘medium risk’ and to expect six months of treatment. But 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.
Testing revealed a rare and life-threatening condition: hemophagocytic lymphohistiocytosis (HLH). 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.
By this point, Aria had become eligible to join the Zero Childhood Cancer Program (ZERO), which identified that Aria’s cancer had rare chromosomal abnormalities that meant it would be very difficult to treat.
‘If ZERO had been available to Aria when she was first diagnosed, she would have been classified as high-risk and gone straight to bone marrow transplant. Then she would have had a chance,’ Chrissy says.
Tragically, Aria passed away in February 2024.
Since then, Chrissy has been very involved in advocacy work, talking 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.’
This Childhood Cancer Awareness Month, please help us find better treatment options and ultimately a CURE for all children with cancer.
At the time of Aria’s diagnosis, ZERO was only open to patients classified as ‘high risk’. Today, ZERO is available to every child diagnosed with cancer.”
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