Ellie's story

Ellie's story

A scan revealed a tumour in her chest so big, it pushed her tiny heart and lungs to one side. But a bold new personalised medicine clinical trial would hold the key to her recovery.  

Ellie was just eleven months old when she was admitted to the Sydney Children’s Hospital, Randwick having been unwell for a couple of weeks.

A scan revealed a tumour in her chest so large it was pushing her tiny heart and lungs to one side. Within days she was in the Intensive Care Unit on life support because she could no longer breathe unaided. The tumour was aggressive, rare and resistant to chemotherapy.
“We waited eight years for Ellie to arrive, to be told she may not survive broke my heart; I wanted to take the cancer away from her and would have taken it on myself rather than see her suffer as she did,” Ellie’s mum Mina said.
Ellie was immediately enrolled onto the Zero Childhood Cancer Program, a personalised medicine program which tailors treatment to individual cancers through scientific analysis of their tumours.


Ellie was in critical condition and everyday mattered. Her tumour biopsy was subjected to detailed genetic analysis, with the Zero team working around the clock to get results as soon as possible.
Following sequencing of the entire genetic material of Ellie’s tumour through our partnership with the Lions Kids Cancer Genome Project, and identification of the specific genetic change likely to be driving Ellie’s cancer, the Zero Childhood Cancer team were then able to identify a new drug that specifically targeted that particular genetic change.

The team identified her cancer as infantile fibrosarcoma with a rare translocation likely to be driving her cancer’s growth.

They had recently learnt about a new drug discovered by a company from the USA that targeted the exact translocation now identified in Ellie’s tumour, and the company agreed to provide the drug on compassionate grounds, so treatment could begin.

The treatment had an extraordinary impact. Within four weeks the cancer had shrunk to a point where Ellie could be taken off life support and could breathe on her own. Six weeks later she was moved out of ICU into the ward.

Mina & Rob couldn’t believe the amazing results. They acknowledged the role of the Zero Childhood Cancer program in successfully treating their daughter.

“We know that if Ellie had been diagnosed with this cancer even two years ago she would have died, she is only alive today because of the Zero Childhood Cancer program.”

A clinical trial of larotrectinib, the drug used to treat Ellie, is now open in Australia for all children whose cancer is identified by the Zero Childhood Cancer program as having this same genetic marker, providing access for these children to targeted therapy which appears to be both more effective and far less toxic than standard chemotherapy.

The Zero Childhood Cancer Program is a national initiative led by scientists and clinicians from Children’s Cancer Institute and the Kid’s Cancer Centre, Sydney Children’s Hospital, Randwick, and is one of the most exciting childhood cancer research initiatives ever undertaken in Australia.

Professor Michelle Haber, Executive Director of Children’s Cancer Institute, emphasised the impact the program can have. 
“The information we gather will not only benefit children on the national clinical trial, but will inform new discoveries and further clinical trials that we believe will impact and benefit generations of children with cancer in the future," she said.

"The Zero Childhood Cancer program is bringing us a step closer to our vision of one day curing all children of cancer.”

Eleven months after the world-first Zero Childhood Cancer national clinical trial was opened, 129 children with serious and aggressive cancers, like Ellie, have been enrolled on this state-of-the-art personalised medicine clinical trial that aims to give them the best possible chance of survival and quality of life. 

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