CJ's story

Just two days before their baby boy CJ was diagnosed with neuroblastoma, a cancerous tumour that had grown around his spine, WA parents Chrizette and Callisto had suffered the death of Callisto’s mother from breast cancer.

Neuroblastoma is the most common solid tumour in early childhood. Despite aggressive treatments, including high-dose chemotherapy, the prognosis remains poor for many children, with neuroblastoma accounting for about 15 percent of paediatric cancer deaths worldwide.

For those children who survive, severe lifelong side effects are often present, including motor, cognitive and psychosocial impairments that reduce their emotional well-being and social integration. Thus, more effective treatments for this condition are critical.

So when Chrizette took CJ to hospital in the hope of discovering why her four-month-old son was not having bowel movements as often as he should have been, she was on her own. Callisto was taking care of his mother’s funeral arrangements.

When Callisto made it to the hospital, he originally wasn’t sure how to deal with the news, Chrizette says.

“His mother had just died from cancer, so not only was he grieving but he also felt CJ’s cancer was in some way his fault.”

“Callisto has been an amazing support, but he has a fly in, fly out job so he’s not always here.”

As she tried to be strong for her son, particularly during Callisto’s absences, Chrizette found quiet moments to release emotion. Typically this was in bed, after CJ had fallen asleep next to her.

The horror of treatment

Chrizette’s ongoing emotional torment and anxiety is not surprising nor unusual for a parent who has watched their child go through cancer therapy.

It’s nothing less than terrifying, she says, to see how much your child has to suffer in an attempt to survive this dreadful disease.

“He had spinal surgery where the surgeon removed as much of the cancer as he could,” Chrizette says.

“CJ needed a catheter for five months after that, and lots of medication. They didn’t start chemo immediately as they thought they might have removed the entire mass, but then it came back.”

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But the treatment meant Chrizette and Callisto got to keep their little boy. CJ was recently declared cancer free.

The bear that made it bearable

While CJ’s treatment experience was awful there were a few bright moments, usually sparked by The Kids’ Cancer Project bears.

During the first cycle of chemo, nurses and doctors had a difficult time putting in the canula. CJ was extremely upset, screaming in pain, until a nurse presented him with a teddy bear donated by a supporter of The Kids’ Cancer Project.

Why kids’ cancer is so different

Having seen Callisto’s mother suffering through cancer, then her own son, Chrizette has a unique point of view into the differences between the adult and child cancer experiences.

And it is an enormously different experience for each, she says.

“We knew my partner’s mother had cancer, but she was the type of person who didn’t want anybody to worry about her, so she’d act as if she was fine. She’d put on a brave face. And as an adult you can do that. You can hide what you’re feeling and pretend everything is okay. But kids are not programmed like that,” says Chrizette.