Ellie's Story - Zero Childhood Cancer

For parents and families navigating pediatric cancer diagnoses.
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Ellie's
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Ellie's Story - Zero Childhood Cancer

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We all know the stories — sick children, brave children, desperate parents. But this is a different story. This is a story of hope — our best hope yet: zero childhood cancer.

In Australia, three children die from cancer every week. That’s the equivalent of a classroom of children every school term. The thinking behind the Zero Childhood Cancer Program is simple but powerful: every child is unique. Every child’s genetic makeup is different. Every child’s cancer is biologically unique. By unlocking the genetic and biological profile of each child’s tumor and targeting therapy specifically to that cancer, doctors can achieve better results. It’s about giving the right drug to the right child at the right time.

The program analyzes the genetic and biological characteristics of each child’s tumor to identify the specific drugs — or combinations of drugs — most likely to work. Already, it’s producing astonishing results that would not have been possible just a few years ago.

One of those stories is Ellie’s.

On August 10, Ellie’s mother was driving when Ellie vomited again. Concerned, she took her to the pediatrician. After chest X-rays and blood tests, the doctor said, “You’ve got a very sick little girl. Don’t go home — go straight to the hospital.”

When doctors first met Ellie and her parents, she was critically ill. Within a day, she was in intensive care. She had a tumor the size of a football on the left side of her chest. It was pushing against her lungs and shifting her heart. She was placed on life support. Her mother later said she wished she could take the illness herself rather than see her daughter suffer.

Doctors tried chemotherapy for two weeks, but the tumor did not respond. In fact, it continued to grow. Ellie’s condition worsened daily. Time was running out. One doctor told her parents she was “hanging on by ten little fingertips.”

Ellie was immediately enrolled in the Zero Childhood Cancer Program. Within two weeks, her tumor’s DNA was fully sequenced. Scientists and clinicians worked around the clock to analyze the data and determine what it meant. They discovered a previously unidentified mutation — one that had been treated in only a handful of children worldwide.

They were able to access the drug. What astonished Ellie’s parents was that the medication was a liquid — something that looked as simple as a common syrup. But the results were extraordinary. Day by day, Ellie improved. By week six, she was strong enough to leave intensive care and return to the ward. Her tumor shrank dramatically in a short period, and the drug had minimal impact on her healthy tissues.

One day, her parents noticed her mouthing words. When doctors removed her breathing tube, she said, “Mama.” She hasn’t stopped talking since.

Ellie was eventually discharged from the hospital and continues to recover well. A year later, she is healthy and thriving, with only small remnants of the tumor remaining — and those continue to shrink. She is, in every respect, a normal child. Without this program, she likely would not have survived.

The Zero Childhood Cancer Program brings scientists and laboratory researchers together with doctors and patients, accelerating solutions by combining innovation with clinical need. In its first year alone, 120 children were enrolled. The response from doctors and families across Australia has been overwhelming.

For pediatric oncologists who have spent decades delivering devastating news to families — explaining that current treatments offer no hope — this program is transformative. It ensures no stone is left unturned and that every possible option is explored.

Currently, the program focuses on children with the most aggressive cancers or those whose disease has relapsed after treatment. These children often have less than a 30 percent chance of survival. They are the ones who need it most. While it cannot yet cure every child, what researchers learn from each case helps improve outcomes for all children with cancer.

Led by the Children’s Cancer Institute on the research side and the Kids Cancer Centre at Sydney Children’s Hospital on the clinical side, the initiative partners with children’s hospitals and medical research institutes across the country. It is now the most comprehensive personalized medicine program for childhood cancer in the world.

Together, we can reduce the number of children who die from cancer. Ellie’s story proves it can be done.

Because Zero Childhood Cancer is not just the name of a program — it’s the goal.
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