Thomas’ story

Among the children added to the program was Thomas Edney, whose cancer was discovered in 2014, when he was just two years old.

A shy little boy, he was on a family holiday when his parents, John and Abigail, became concerned there was something very wrong.

“At first, we thought it was gastro,” says John of Thomas’ bouts of vomiting. Abigail took him to a local GP, who insisted they go to the hospital.

The family returned home and went straight to hospital. “I thought we were going to be there about two hours,” Abigail says. Days later, Thomas was transferred to a major children’s hospital where doctors did an MRI.

“I remember being called into the room with about four doctors. That’s when I thought, ‘Oh gee,’” John says. “It was a plain room with a couple of boxes of tissues on the table. I immediately thought, ‘This doesn’t look like the kind of room we want to be in.’”

The doctors broke the news they’d found a large tumour. “I couldn’t even comprehend my two-year-old son had cancer,” John recalls. They didn’t have time to dwell on the news. “There was an immediate sense of, ‘This is big and we’ve got to get straight into surgery to do something about it.’ The neurosurgeon showed us images, so even we could comprehend how big it was.”

There were multiple tumours, spread throughout their toddler. “The day was getting worse and worse, but they couldn’t be definitive before they’d operated,” says Abigail.

Thomas went in for a six-hour surgery to remove as much of the large mass as they could. “We were there for fiveand-a-half weeks and he had at least four surgeries. We kept thinking we might get home and then he’d fall ill again. He’d be rolled back in for surgery. It was very stressful and up and down.”

There were unexpected issues, but overall, the medical team believed the surgery had been a success.

“They did think they’d got it all,” Abigail says. “There were four years where we thought we were in the clear. They kept monitoring the cancer and said it was stable, but then scans showed that the cancer had grown back. That was at the point where they said, ‘We can’t use

surgery as a treatment any more.’ Radiotherapy and chemotherapy were never an option. We thought, and our oncologist thought, ‘What do we do now?’ We no longer had a treatment option and he was getting very unwell.”

That’s when Thomas’ medical team started looking into the Zero Childhood Cancer Program.

“We were in limbo for about six months,” says John. Unfortunately, Thomas’ tumour didn’t qualify for the program. His case is unique. To have brain cancer in the first place is rare. Then, his cancer wasn’t technically aligned with the admittance requirements to the trial,” John says.

But Thomas’ doctors weren’t giving up. The person heading up the trial felt strongly that Thomas was a good candidate and put together a case for the trial board, arguing for Thomas to be included.

“It was out of our hands. Someone’s basically deciding if he’s got a chance of being cured or not,” tells John.

Abigail adds, “As a parent, you want to hear that there could be a solution out there. Until that time, we had some despair. We were thinking, ‘What will happen?’ Well, we knew what was going to happen. It would be terrible.”

Fortunately, the doctor’s plea was successful and Thomas was added to Zero. Abigail and John’s relief was indescribable, but there were still many hurdles to clear. Once Thomas’ cancer signature had been identified, would there be a drug that would target it? Would they be able to access it? But John says they felt incredibly fortunate to have made it to that point. “You’re desperately searching for solutions and finding out we were on that trial reignited hope there might be a solution out there,” Abigail says.