Emily started shaking after her naps. Days later, she was dying of a rare cancer

Exclusive: When two-year-old Emily Peterson began shaking after her naps, her parents knew something wasn’t quite right.

She was usually a happy and energetic little girl – though within days, she was vomiting, sleeping constantly, and walking into walls.

By the time Sarah and Jay reached the hospital, their daughter was dying.

“The neurosurgeon came in and shattered our world. We just couldn’t believe what we were hearing,” Sarah told nine.com.au.

An MRI revealed that a massive brain tumour had pushed her brain across to one side.

She would need a 12-hour surgery the very next day to save her life.

“What is he talking about? Did he get the right child? There’s a mistake. He’s lying. But why would he lie?”

Until that MRI, Sarah had expected doctors to find something routine, perhaps a vitamin deficiency. Instead, came news no parent is ever prepared to hear.

“I asked him if it [the tumour] was the size of a marble. Bigger. A golf ball. Bigger. I stopped guessing. We later learned that it was roughly the size of an avocado,” Sarah said.

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“That night we didn’t sleep – we didn’t know if that was going to be the last time we ever held or spoke to Emily.”

Emily survived the operation and underwent a second surgery two weeks later, with the tumour completely removed and no side effects.

But just as her family, from northern Melbourne, prepared for the next stage of treatment, they were dealt another devastating blow.

Doctors had initially diagnosed Emily with a rare type of brain tumour, and her family was preparing to travel to the US for proton therapy.

Further testing through the Zero Childhood Cancer Program (ZERO) - led by the Children’s Cancer Institute and Kids Cancer Centre at Sydney Children’s Hospital - found her tumour was something more sinister.

Researchers looked inside the tumour’s DNA to identify its exact cause, which was a rare genetic mash-up.

Emily became the first child in Australia identified through ZERO with that tumour type and driver.

Cancer researcher Chelsea Mayoh from the Children’s Cancer Institute and ZERO said the discovery had major implications for Emily’s treatment.

Emily’s family and medical team faced an agonising decision: proceed with radiation while her brain was still at a critical stage of development, or wait and closely monitor her.

Radiation can damage healthy tissue surrounding a tumour, which is especially risky for a developing brain.

“Our children are young and developing; if we can reduce the impact of lifelong side effects, it is always worth it,” Mayoh said.

For Emily’s parents, waiting carried its own terrifying risk.

The cancer could return – and their greatest fear was that it could spread through her brain and spine.

The new diagnosis showed that if the tumour returned, it was likely to stay in the same location rather than spread.

“It was the biggest gamble of our lives,” Sarah said.

Six months later, the tumour had returned – albeit without spreading.

Surgeons were able to remove it again before Emily travelled to the US for treatment, now six crucial months older than she would have been under the original treatment plan.

“Without that testing, we would have been in Jacksonville months earlier, treating Emily on a diagnosis that turned out to be wrong, at an age where radiation would have done the most harm,” Sarah said.

With Sarah already on unpaid maternity leave for their youngest daughter, Jay had to step away from work so the family could move to Jacksonville, Florida.

“It is not easy to just stop everything, pick up your lives and move to the other side of the world for complex medical treatment,” Sarah said.

While the Australian government covered most treatment and travel costs, and local charities alongside Ronald McDonald House provided vital support, the family still had to drain their savings to get by.

“We were in a position where we could make it work, but for some families, it’s impossible,” Sarah said.

In July, the Peterson family celebrated one year of remission.

Emily continues to undergo regular MRIs and is monitored by several specialists, although she has no physical limitations and takes no medication.

Mayoh said discoveries like Emily’s rely on families agreeing to profile their children’s tumours – building a knowledge bank that helps save the next child.

Watching four-year-old Emily run around today feels a world away from the night Sarah and Jay almost lost her.

“To see us walking down the street or at the playground, you’d never know. We are just a normal family,” Sarah said.

“We’d also say this to other parents: trust your gut.

“We were repeatedly told nothing was wrong.

“But we kept going back anyway. It saved her life.”

Australia’s inaugural Medical Research Giving Day will be held on September 9.