Maddie’s still making memories | Innovation Tech

But her friend Abby Ward has pledged to take photos and videos of their special evening so Maddie has a permanent record of one of the most important nights of her life and the dusty pink dress she carefully chose months ago for the occasion.

Maddie was diagnosed with a slow-growing type of brain tumour, known as a pilocytic astrocytoma, when she was 12. She went to an optometrist after developing blurred vision and he found the growth during an eye examination.

Although she’s had surgeries to take a piece of the tumour for diagnosis and to insert shunts to drain fluid from her brain, doctors at the Lady Cilento Children’s Hospital in Brisbane were reluctant to operate on the tumour until recently, concerned they would damage key areas of her brain.

“We were told the tumour was like a ball of spaghetti, my brain was like toothpaste and it’s grown through some of it,” Maddie said. “To remove it would be a bit difficult.”

Instead, doctors treated her with chemotherapy and then a trial drug, called Lenalidomide, designed to stop tiny blood vessels forming inside the tumour, which shrunk by about a fifth.

But when the tumour started growing again and Maddie developed severe headaches and nausea, the decision was made to operate.

Neurosurgeon Rob Campbell removed about two-thirds of the tumour, but could not take more for fear of affecting the vision and hormone control areas of her brain.

Although the surgery on June 12 affected part of her brain important for short-term memory, Maddie’s mother Louise Bateman said they hoped it would improve with time.

Maddie’s cancer specialist Tim Hassall said the 16-year-old was one of about 50 Queensland children diagnosed with brain tumours annually.

He said trials, such as the one Maddie was part of, were improving treatment for children with brain tumours but much more work needed to be done.

Dr Hassall said a type of childhood brain tumour called a diffuse intrinsic pontine glioma had a “zero per cent survival rate”.

In Maddie’s case, he said the hope was that her tumour would eventually stop growing.

In the meantime, Ms Bateman said they developed “scanxiety” before every three-monthly scan.

“It’s scary because there’s always that unknown that you don’t know what’s going to happen,” Maddie said.

But that hasn’t stopped her from planning to study at university, possibly architecture.

The Children’s Hospital Foundation is establishing a Centre for Child and Adolescent Brain Cancer Research in Brisbane, dedicated to helping children, such as Maddie.

To donate to children’s cancer research: childrens.org.au