Two years ago, Jack Burai was diagnosed with a low-grade cancer in the brain (glioma) at just nine years old. Following surgery his prognosis was good and his parents, Vivian and Alex believed Jack to be cured.
Then 12 months later, Jack relapsed and was in hospital with multiple tumours in his brain and spine. His cancer failed to respond to standard treatment and his condition was rapidly declining. His eyesight was threatened by the build-up of fluid in his brain and he could no longer walk.
Jack was enrolled in the Zero Childhood Cancer Program, which genetically tested his cancer and detected a BRAF V600E mutation that was believed to be driving its aggressive growth.
The team identified new therapies uniquely designed to target and kill his tumours. Within 45 days Jack was out of a wheelchair, playing tennis, and today Jack is back at school and doing well.
This exciting development is all due to funding from long-standing partners, of which The Kids’ Cancer Project is just one.
The challenge in curing children with cancer is that each child and each cancer is unique meaning standard therapies are not effective for every child. Zero, led in partnership by Children’s Cancer Institute and Kids Cancer Centre at Sydney Children’s Hospital, Randwick, is designed to fast track children with high-risk aggressive cancers into treatment with new drugs specifically tailored for their unique disease.
As with Jack, once accepted into Zero’s national clinical trial, the child’s cancer cells undergo extensive and sophisticated genetic testing and analysis. In parallel, when possible, their tumour cells are subjected to detailed laboratory analyses to determine their response to a range of anti-cancer drugs.
This combined approach helps to identify the treatments most likely to target and kill each child’s specific cancer and give them the greatest possible chance of survival.
The Zero Childhood Cancer Program which has built a collaborative network of 21 national and international research partners opened a national clinical trial in September 2017 at all eight children’s hospitals in Australia.
In the first 20 months of the trial, more than 200 children have been enrolled, with personalised treatment recommendations made for more than 70 per cent that were then reported to the children’s treating doctors within an average of nine weeks.
More than 400 children are expected to be enrolled in the national trial by September 2020, according to Professor Michelle Haber AM, Executive Director of Children’s Cancer Institute, with a third of all the patients involved in the program being children with aggressive brain cancer.
“Stories like Jack’s, and others, show that Zero Childhood Cancer can provide exciting new options where standard treatments have failed. For the first time we have a real chance to defeat aggressive childhood cancers, and donations that can make this happen,” she said.
Associate Professor Tracey O’Brien, Director of Kids Cancer Centre, Sydney Children’s Hospital, Randwick, explained, “Three children are dying from cancer in Australia every week. Zero Childhood Cancer aims to change this, by unlocking each individual child’s cancer and then targeting the therapy to achieve better results. It’s about giving the right drug to the right child at the right time. Jack’s story demonstrates what can be achieved with this approach, it is tomorrow’s care today.”
Vivian Rosati, Jack’s mum said she is “beyond grateful” to the program.
“We would like to thank everyone for allowing our son to enter the Zero program which has changed our lives and saved his."
"Donations like this means that other families will have the same chance, programs like Zero Childhood Cancer give families hope where there would otherwise be none,” she said.