Zane's story

When Zane got a severe case of gastro at 3 years of age, his symptoms seemed normal: vomiting, diarrhoea and fever. But as his symptoms continued over the following 2 months, mum Kristie began to worry that something more serious was wrong.

Zane began to lose weight dramatically and had a swollen stomach.

“I knew it wasn’t gastro… I just knew something was wrong,” says Kristie. “He was so skinny – he got down to just 12 kilos.”

Doctors sent Zane for an ultrasound, which found confirmed Kristie’s initial fears – Zane had a 1 kilogram tumour on his stomach.

“They needed to test to see if it was cancerous, but it was so aggressive that they started the treatment before the results came in, as time was so critical,” explains Kristie.

Zane’s tumour was an aggressive neuroblastoma, so doctors immediately put a central line in to his chest to begin intensive treatment.

That marked the beginning of 5 cycles of chemotherapy to shrink the tumour, followed by surgery to remove it. Thankfully, the tumour responded well to the chemotherapy and began to shrink.

The surgeons successfully removed 97% of the tumour, but Zane lost a kidney in the process.

Zane had to undergo intense radiation, followed by a bone marrow transplant, and stem cell transplants to repair the damage done by the radiation.

He is slowly easing back into a normal life, after finishing his treatment, but Zane will always face challenges as a result of the tumour.

Zane uses a hearing aid because the chemo has affected his hearing, his growth will be stunted, the walls of his heart are weakened – increasing the risk of heart problems later in life – and Zane will never be able to have children.

“There is a really high risk of kids with this type of cancer developing a sarcoma, which is really dangerous,” explains Kristie. “We got involved in a trial study to reduce his chance of relapse to 40% which is still quite high – we are very hopeful that that won’t happen.”