Inside Ellie Caterjian‘s ’miracle’ survival of football-sized tumour

Doctors discovered a tumour the size of a football in an 11-month-old baby’s chest that was pushing her heart and lungs aside.

The day after Ellie Caterjian’s parents found out she had a tumour the size of a football in her chest, they were told to prepare for the worst.

“They pulled us aside and said more than likely you’ll lose her tonight,” her mum Mina said.

At just 11 months old, Ellie was intubated and in critical care.

“We completely lost it,” Mrs Caterjian said.

“It wasn’t until one of the senior nurses came up to us and said she’d seen cases where kids had pulled through, to be strong and keep it together. I’m glad I listened because she did pull through.”

Ellie’s recovery was thanks to a drug her Sydney parents call a “miracle”.

Ellie Caterjian had a nasal gastric tube for feeding.

Prior to that, Mrs Caterjian had taken her daughter to her doctor 11 times in six weeks.

“She was vomiting every time I gave her milk or food,” she said.

“She had lost 1.2kg. They thought it was because she’d changed formula. She became lethargic and wasn’t meeting her milestones.

“But when she saw her paediatrician he took one look at her and said something wasn’t right.”

Ellie was sent straight for scans and Ellie’s dad Robert was called into the doctor’s office immediately.

“The doctor pulled out the x-ray and held it up to the light and said ‘See that?’

“And my husband goes ‘That’s not normal’,” Mrs Caterjian said.

“There was a huge mass on her lungs.”

This is how Ellie’s tumour first looked in her chest in August.

This is how the tumour looked in November.

That was August 10, 2017. Ellie was intubated the next day.

It wasn’t until the end of the month that she was diagnosed with infantile fibro sarcoma in her abdominal cavity. The cancer is usually found on the limbs.

Ellie was fitted with a tracheostomy to breathe and tried one week of chemotherapy but the cancer got bigger.

She was on nine sedatives and in palliative, end of life care.

That was until doctors enrolled Ellie in the Zero Childhood Cancer clinical trial.

Led by Children’s Cancer Institute and Kids Cancer Centre at Sydney Children’s Hospital, Randwick, children are given a personalised medicine program with treatment tailored to their particular cancer.

Ellie’s parents Mina and Rob couldn’t believe their daughter’s recovery.

Ellie was put on a drug called Larotrectinib which was to attack the particular mutation causing her cancer.

She had to have it twice a day for six weeks.

Come September, the family were told Ellie’s tumour had reduced in size and she could be moved to a ward.

“All our Christmases came at once,” Mrs Caterjian said.

“We were quite sad because we thought, ‘Are we ever going to hear her voice’. She couldn't crawl, she couldn't stand, so it was the last little thing taken away from us (her voice).

“They couldn't believe how quickly the tumour had shrunk in size. By late September she could roll in her cot and sleep on the side she could never sleep on.”

Ellie recently celebrated her fourth birthday.

Her parents wanted to see of their daughter could talk now she had made progress.

Ellie’s heart and trachea had shifted back to their normal positions.

“I could see her mouthing words and Rob actually said, ‘I think she’s trying to say something’,” Mrs Caterjian said.

“When they took the tracheostomy out, her first word was ‘Mumma’.”

By late October Ellie had started standing and finally, after being fed through a nasal gastric tube for a few weeks, she ripped it our herself and started eating normally.

In June last year she had what was remaining of the tumour removed.

She has been involved in the Zero Childhood Cancer project.

Ellie has remained on the drug since and recently celebrated her fourth birthday.

“We’re hoping to ring the bell to say she’s cancer free,” Mrs Caterjian said.

“She’s a happy kid. It’s a miracle drug. She’s like an ordinary four-year-old.”

September is childhood cancer awareness month. Ellie is the face of a new campaign called ‘Zero Gifts’, which calls on people to celebrate their life by getting gifts that could save another.