Isaac's Story

Young Isaac was healthy baby just like any other,

But when he was four months old, his parents noticed that he has shaky eyes (Nystagmus)

His family took him to the GP for a check-up, and their GP expressed concerns about his eyes and how rapidly his head was growing. His family were quickly referred to Queensland Children’s Hospital, where Isaac underwent many tests and scans. When the results came back, they confirmed every parent’s worst nightmare – Isaac had a brain tumour. The large tumour was also causing hydrocephalus – a condition in which an accumulation of fluid occurs within the brain, due to increased pressure on the skull. To drain the build-up of fluid, Isaac had a shunt inserted, and then had a biopsy taken of his tumour. He was in hospital for 14 weeks, and during that time, he had six brain surgeries to replace his shunt, and spent seven days in the Paediatric Intensive Care Unit (PICU).

What followed was 12-months of chemotherapy, as his tumour was inoperable, and he finished this treatment in September 2017. In early 2019, Isaac started facing challenged with his sodium levels, which led to a new diagnosis of hyponatremia – a condition that occurs when the level of sodium in the blood is too low. Throughout 2019, and into 2020, Isaac has spent many nights in hospital and PICU with his low sodium levels making him very unwell. While his tumour and hydrocephalus are stable at this time, he continues to have MRIs every four months to closely monitor the tumour and ensure that it doesn’t grow further.

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. 

Isaac loves making music and singing and playing with his little brother Ollie. His favourite toys are his drums, and anything that lights up and makes noise. In the warmer months, he loves being in the pool splashing around. Isaac loves the outdoors, bouncing on his trampoline and swinging on the swings. 

During Isaac’s hospital admissions, he enjoyed entertainment services from the Children’s Hospital Foundation including pet therapy, music therapy and special entertainment events.