Our journey through cancer

Our names are John and Lee-Ann. Our beautiful little boy Will was an adventurous and cheeky six year old, full of beans and with a real love for life. Our happy, ordinary world was turned upside down one day when we took him for a precautionary scan following a couple of episodes of morning vomiting.

We were seen and there was nothing to worry about, but minutes later the consultant walked in. It was so small they’d missed it. But it was there: a tiny tumour on his brain; a particularly aggressive type of Medulloblastoma.  

Despite being caught early, Will's tumour had high risk and fast-growing genetics (Group 3) and had already spread through his cerebrospinal fluid, coating parts of both the brain and spinal cord. The treatment that followed was extremely aggressive.

Family life

The journey for us as a family was terrifying, bewildering, confusing, exhausting and punishing not just for Will but for his younger brother. People often don’t see behind the closed doors of childhood brain cancer – the endless injections, the midnight admissions with constant infections, the weight loss, the vomiting, the inability to eat, your child being hooked up to three IVs for three days solid or having to be bolted to a table with a mask over their head and torso for radiotherapy or being held down by nurses to have an NG tube fitted or spending days in isolation when they just want to run around a park.  

As a parent, seeing your child suffer is insufferable. We felt desperate, out of control and unaware of how to support our younger child who was watching this happen to his big brother.  

Will soldiered on like a little hero and his surgery was a great success. During his last month in hospital, we were excitedly planning what we’d do when all the tubes came out. He was so excited to get back to school with his friends and we were so grateful to resume our happy, ordinary family life again. 

Just two weeks before his nine months of treatment finished, Will relapsed and quickly succumbed to the aggressive progression of his Medulloblastoma within a month.  

On Valentine’s Day 2019, we lost him.  

Our family will never be the same again. We fought as hard as we could to save Will and we couldn’t but, perhaps we can be a force for good to help other families save their children.  

Our aim is to raising awareness through ongoing campaigning. For Will, for his brothers and for all the other children who have fought, are fighting and will fight this cruel disease.  

Thank you for reading, John and Lee-Ann