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Isaac’s story

Isaac was a healthy baby, but at four months old his parents noticed that he had shaky eyes (Nystagmus). The family took Isaac to the GP for a check-up, and their GP was quite concerned with Isaac’s eyes and the rapid growth of his head.

They were referred to Queensland Children’s Hospital where Isaac underwent many tests and scans. He was diagnosed with hydrocephalus, which was sadly being caused by a large tumour in the centre of his brain. Isaac had a shunt inserted in his brain to drain the build-up of fluid and had a biopsy taken of the tumour. Isaac was in hospital for 14 weeks and during that time he had six shunt replacements (brain operations) due to continuous problems which included a week in intensive care.

Isaac began 12 months of chemotherapy straight away as his tumour was inoperable and malignant. This finished in September 2017. In early 2019, Isaac started having challenges with his sodium levels which led to a new diagnosis of hyponatremia. Throughout 2019/20 Isaac spent many nights in hospital and intensive care with low sodium levels making him very unwell and he continues to have MRI’s every four months. Both his tumour and hydrocephalus are stable at this time.

As a result of Isaac’s brain tumour and hydrocephalus, he has an acquired brain injury which means his development is much slower than other children his age. Isaac has been working very hard with his therapist and is learning more words and understanding more of what his parents are saying to him. He has also learned to scoot around on the floor and is learning how to stand and walk on his own. He recently took a few steps unassisted which is a huge milestone for him. Isaac has had to learn how to eat and drink orally and will continue therapy in this area.

About the Centre

The Children's Brain Cancer Centre is Australia’s first research initiative solely focused on paediatric brain cancer, treatment, and survivorship, and brings together world-leading researchers, doctors, and facilities to boost brain cancer research capacity and outcomes in Queensland and beyond.

It plays a vital role in the Australian Brain Cancer Mission, which aims to double survival rates and improve the quality of life of people living with brain cancer over the next 10 years, with the longer-term aim of defeating brain cancer.

Too many times I’ve had to tell a parent that there’s nothing more I can do.  This centre brings us hope of finding an answer - and hopefully, a cure."

Dr Tim Hassall, Centre Director
Dr Tim Hassell CBCC