In Charity News, Patient story

Khadijha is our support specialist for children and families, and has been busy growing the support that we provide for families affected by a brain tumour.

One of the families Khadijha has been supporting is that of eight year old, football-mad Bailey.

Bailey’s story

Bailey’s symptoms began in spring 2016. He had headaches, followed by vomiting and feeling overwhelmingly tired. Initially, it was thought that these symptoms were the result of migraines. However, an MRI was scheduled to rule out anything suspicious.

In early December, Bailey welcomed his baby sister into the world, and on 18 December he had his MRI scan.

“A few hours later, our worst nightmare was realised when they confirmed Bailey had a brain tumour. It was too early to know the type, but Bailey was admitted to hospital and kept in for a number of days to have multiple scans done” – Bailey’s dad, Stephen.

Further scans showed that it was a cerebellopontine angle (CPA) meningioma. Due to its close proximity to his optic nerve, surgery would be very tricky, so Bailey is currently on active surveillance (commonly referred to as ‘watch and wait’).

“Bailey is like any other eight-year-old: football mad, full of energy and loving life. To look at him, you would think he is fine, but he remains on the watch-and-wait list and is closely monitored.”

A special delivery for Bailey

Stephen reached out to brainstrust because as Bailey is getting older, he is asking more about brain tumours and wants to learn more about living with a brain tumour.

“As soon as Bailey came home from school and discovered his brain box that brainstrust had very kindly sent to him, he was so happy, with a smile on his face that lit up the room. He loved the items that were inside. He said he’s going to use the stress ball when he as his injections when he goes for his next scan. We were overwhelmed by all the thought and care that went into producing this box.”

Our little brain boxes are tailored to each family, and there’s something in there for everyone. Sometimes it is the smallest resources that make the biggest difference. If a little brain box would help you and your family, or you’d like some support, email khadijha@brainstrust.org.uk