Cooper's story

2021-08-15
After spending many long days and nights in hospital, the Pacey family are advocates for change.

The Pacey family, having witnessed first-hand the ravages of childhood cancer treatment, has now raised over $133,000 for childhood cancer research. 

The pain in seven-year-old Cooper’s lower back, his family originally thought, was likely an injury from a recent soccer match. After all, Cooper was always very active, a boy who loved nothing more than sport. And in last Saturday’s game he had taken a kick to the back.

However, a few days later the pain had become so terrible he was unable to sleep through the night. His dad Mark took Cooper to the GP, who felt around the boy’s abdomen then sent them straight to the emergency department.

“I can vividly remember every second of that day,” Mark says. “The GP looked at me in a particular way. He was worried and I could tell he knew something was not right. There was real urgency in his voice. He said, ‘I need to send you to emergency now. Right now!’”

“For hour after hour they were doing tests. Every so often the nurses and the doctors looked over at Cooper and I in the waiting area. After each test the looks on their faces became more serious. I knew, before they told me, that something was wrong.”

Cooper’s mum Lisa and older sister Tahlia were at a sports carnival as Cooper was sent to hospital. By the time Lisa arrived, doctors were ready to hand over some very bad news.

It was a Wilms tumour, a malignant tumour in his kidney weighing around one kilogram.

“I remember at the time feeling surprised at myself that I was so together, that I didn’t get particularly upset,” Lisa recalls. “Afterwards, I realised I was in shock, and of course I absolutely crumbled later on.”

Therapy: Touch and go

The silver lining was the fact that Cooper‘s condition came with an 85 percent chance of survival. After surgery, then six months of chemotherapy and radiation, the prognosis was good.

However, after the second, three-monthly scan, doctors said the cancer was back. Suddenly the stakes were a lot higher. This time, Cooper had just a ten percent chance of survival.

“The treatment they’d used before needed to be increased and it was going to be a hell of a lot more intense this time around,” Mark says. 

“There was surgery, then chemo every morning, noon and night. It just really knocked him around.” Mark Pacey. 

Lisa says she’ll never forget the day Cooper had his stem cell treatment.

“It was basically the last shot,” she says. “If he was going to come through, this is the thing that would get him through. But it was traumatic.”

“He was in such a weak state after all of that chemo and then they had to virtually give him a lethal dose of chemo to shut his body down before regenerating it with stem cell therapy.”

“I can’t even describe how sick he was. As a mum, not being able to do anything to help as your child suffers is just an awful feeling.” Lisa Pacey. 

But it worked! Cooper slowly made a comeback and is now a healthy 18-year-old. His memory of the treatment is of long days feeling sick, a complete inability to compete in any sport and also, just as cruel, the loss of his sense of taste. The one thing he loved as much as sport was food.


Read more: Discover all the research projects The Kids' Cancer Project is funding


 

Fundraising during a bloody long day

In the last few years Cooper’s family has raised over $133,000 for The Kids’ Cancer project through Mark’s idea of a day-long triathlon, known as The Bloody Long Day.

“During the period when we were tag-teaming at the hospital, staying there 24/7, I’d take notes on all the drugs Cooper was taking,” Mark says.

“I remember writing one night that I’ve got to do something so no other family ever has to go through this. I came up with an idea of an endurance triathlon, to raise some funds.”

In its first year, that involved Mark doing a 24-hour triathlon during which he swam 10 km, cycled 450 km and ran 75 km. It has now blossomed into an annual event that encourages people to simply do something that challenges them, for a good cause.

“The driver behind The Bloody Long Day, and what I love about The Kids’ Cancer Project, is the support of new research,” Mark says. "They're not just about eradicating childhood cancer, but also reducing the incredibly harmful side effects of treatment."

“I'll never forget how Cooper would sit there, incredibly sick after so much chemo, and turn to me and ask, 'If these drugs are supposed to make me better, how can they make me so sick?'"

“I thought about that all the time, during seemingly endless, long days and nights in the hospital as Cooper and all of the other kids being treated weere just so sick,” says Mark.

“Why does the treatment have to be so toxic? Surely there's a better way. And of course there is. Science just needs to find it.” Mark Pacey.