Luck has moved through the lives of Sydney couple Mina and Rob Caterjian in a most capricious way. They struggled to conceive and suffered several miscarriages over eight years until they welcomed a brown-eyed daughter with a loving and curious personality. For 11 months, their lives felt full of happiness and good fortune, until fate turned again and they received the grave news their little girl, Ellie, had a rare and aggressive cancer. The doctors were despairing that there was nothing they could do when their luck changed again: Ellie was accepted into a new research program using DNA sequencing to develop treatment targeted to her cancer’s specific genetic mutation. It was still a long shot at a cure, but for Rob and Mina it was hope. The Zero Childhood Cancer Program had just opened and Ellie was among the first acutely sick Australian children to be included.
“Had Ellie been born a year prior, this wouldn’t have been available,” says Mina. “As she was leaving the ICU the doctor said, this is a miracle.”
Ellie was chosen for the ZERO pilot program of just 12 children – later expanded to 58 – to have her cancer analysed by a team of experts using the very latest technology. Sitting in a cafe in the Sydney suburb of Earlwood, Mina recounts how giving birth had felt like the end of their struggles, not realising what lay ahead.
“We thought, we can do anything because we finally have our child,” Mina says. “Then we noticed she wasn’t meeting her milestones. She was losing weight. I kept going back to the GP. We were told things like, ‘You’ve changed formula; she’s not used to it. She’s got reflux’.”
But Mina knew it was more than that. In six weeks, Ellie had 11 medical appointments before one doctor recognised the warning signs. “He took off her clothes, had one look at her and said, ‘We need to do an X-ray. I’m going to call your husband.” Immediately Mina realised something was seriously wrong. “I raced her downstairs,” she said.
Soon Mina and Rob were standing in front of the X-ray images. “I saw Rob’s jaw drop. I said, ‘What is it?’ The doctor said, ‘See that? That’s not supposed to be there’.”
A nefarious white mass was blotting out Ellie’s lung. Growing inside her tiny chest was a tumour the size of a football.
“The doctor said, ‘You need to race her straight to Sydney Children’s Hospital. Just go’. We were in tears,” Mina says. “We were in the Emergency Department for hours because they didn’t know what to do. They didn’t know what type of tumour it was.”
At 11 months, Ellie had springy curls and an inquiring mind. While her parents had grave discussions with oncologists and specialists, she’d squirm out of her mother or father’s arms and investigate the doctor’s office. During one appointment a security guard rushed into the room because she’d crawled under a desk and pressed the duress alarm. Mina smiles recounting the story. She and Rob couldn’t believe their spirited little one had cancer. But there was worse to come.
“In that first week, we had a surgeon come in. He said, ‘We can look at de-bulking it but the only problem will be I don’t know what position she’ll be left in when I cut it out. I just don’t want to take the risk’.” He suggested a course of chemotherapy to try to shrink the tumour, but scarily, the chemo did nothing. In fact, the deadly mass grew larger. The doctors still didn’t know exactly what they were dealing with. Meanwhile, Ellie was becoming weaker.
“Her breathing had been compromised. The tumour actually shifted her heart and trachea to the other side,” Mina says. “I was so distressed. I said, ‘Please, she’s my only child. Please make sure she comes out of this’.”
A biopsy showed Ellie’s cancer to be even rarer than first thought. Her type of tumour normally grows on limbs and protrudes from the body. Ellie’s was on the connective tissue inside her rib cage, which is what allowed it to lurk undetected for so long.
“Her oncologist said he’d only seen one in 30 years,” Mina explains. “So it was a big shock. I was confused. Can it be treated with chemo? Can’t you just cut it out? When the surgeon said it was too large, we thought, this isn’t how things are supposed to work. We were told to take one day at a time and to me that’s always ominous because that doesn’t sound good at all.”
There was one hope. If the Zero Childhood Cancer Program could identify exactly what was causing the cancer, they might be able to match it with a drug. “They said, if it’s what we think it is, there’s a trial drug we can use to treat it,” Mina remembers. But there was still a long road ahead.
Every year in Australia, almost 1000 children or young people are diagnosed with cancer, plunging their families into the same fear and uncertainty Mina and Rob felt after Ellie’s diagnosis. About 10 to 20 per cent face the grim prospect of limited or no treatment options. Until now.
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