Josh's Story

When Josh was just 4 months old, his mum, Kylie, noticed that something wasn’t right. He refused to feed and became very dehydrated. Kylie took him to the hospital but doctors noticed some unusual symptoms. Josh’s head was larger than usual - his head circumference was equivalent to that of an 18-month-old child and that he had spinal fluid building up. 

An MRI showed that Josh had a blockage in his brain. 

That day, doctors told Kylie the devastating news that Josh had a tumour the size of a mandarin in the middle of his head.

“The doctors told me that if I had waited until the very next day to get Josh checked, he wouldn’t have made it.”

Doctors immediately performed surgery to relieve the pressure in Josh’s head, and then he was put in intensive care. 

“I remember a clerk asking me if I was ok, and I just completely fell apart.”

And by the next afternoon, he was straight back in theatre undergoing surgery and had two blood transfusions. 

“I was warned Josh could bleed out on the theatre table.”

“After Josh’s initial surgery, we were told everything was fine, and to get on with life. But it was far from over.”

When doctors removed the tumour, Josh’s brain collapsed into the centre of his head, and it left space at the top of his skull that filled up with fluids. Doctors tried to flush the fluid, however in September 2013, Josh ended up having a shunt put in his brain – it went from the empty space in his skull, and down into his abdomen. But it had gone too far, and Josh contracted a lot of infections.

In total, Josh has endured nine months of treatment and seven major surgeries.

Before the tumour, Josh was so active, happy and placid.  

Today his life is very different. As a result of the tumour, he has Cerebral palsy, Epilepsy, and a global communication delay. Josh gets so frustrated because he can’t speak, but he knows what he wants. The family is in the process of learning sign language, and they use an iPad app that talks for him.

The doctor described Josh’s cancer as a life shortening event. He’s been left with lifelong disabilities.

“We are aware that the chances of the cancer relapsing could take him, but you can’t let that run your life.”