Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now 10, Lyra had her final scan in December 2023, a decade after her diagnosis, which showed no evidence of the disease.
Here’s Lyra’s story, as told by her mum Ellie…
To look at Lyra you wouldn’t know the extent of health scares and treatment that she has had since her brain tumour diagnosis at just five months old.
Over the last decade, a lot has changed for us. Our second child, Charlie, was born in March 2016. Lyra loves him to bits. They complement each other well: Lyra is into performing arts and Charlie loves his sports.
Our brain tumour journey began in October 2013. Lyra lost her appetite, vomited frequently and developed a rash but the doctors dismissed her symptoms as a virus.
Unhappy with her diagnosis, we took Lyra to Musgrove Park Hospital in Taunton where the consultant suspected meningitis. She had a CT scan which revealed news that sent us into complete shock; Lyra had a tumour the size of a small orange in the back of her brain.
She was diagnosed with a low-grade choroid plexus papilloma which doctors told us was rare but could be treated.
Lyra had an 11-hour emergency surgery to remove her tumour and despite initially recovering well, a few months later her eyesight deteriorated; she could no longer distinguish night or day. Her operation caused a cyst to develop on her optic nerve, which affected her vision. She had to endure another operation in June 2014 which fortunately restored her sight.
“The fear that Lyra could go blind was the hardest part of the whole ordeal.”
Our nerves were tested whenever Lyra showed any signs of being poorly for fear it was a symptom of her tumour recurring.
However, we felt incredibly lucky with every stable scan that followed, each bringing a sigh of relief.
Throughout everything, Lyra has remained a ray of light. When she was six, she released her charity Christmas single – When A Child is Born, performed originally by Johnny Mathis and later by Cliff Richard. She’s always been a superstar; she loves singing, dancing and being in the limelight.
When I first heard Lyra’s single, I burst into tears. She’s done lots of acting before but this was her first time recording a song. Her voice sounds so beautiful and her personality really came across in a video shot by my sister Jessie who works in video production. It raised thousands for Brain Tumour Research which reached number one in the Amazon Downloads Chart in 2019. The single also raised huge awareness of the disease and Lyra was all over the media with TV crews queuing around the block to speak to us.
Alongside school, she attends weekly dance classes and goes to a summer stage school for performing arts. Most recently she studied for a term at the prestigious Sylvia Young Theatre School in London.
At the beginning of December, Lyra had her final scan which confirmed she is 10 years clear of any re-growth and she was discharged from her annual scans. It was a day of mixed emotion and decade worth of experiences and feelings culminating in a huge sense of pride of how Lyra handled everything.
We call her surgery scar a rainbow scar and she’s aware that she had a brain tumour.
Although she remains on yearly check-ups to ensure her physical development is on track, to look at her you would never know the hardship she endured as a baby.
Lyra’s tumour was growing in a part of her brain responsible for growth, however we don’t know what that means for her in the future. In spite of this, she suffers no symptoms and we’re relieved she is able to lead a normal and happy life.
We’ve been through a frightening ordeal but feel fortunate at how things have turned out. When you’re going through it, it is truly the most horrific thing but we hope that Lyra’s story can offer hope to patients and their families.
It’s horrendous to think that brain tumours kill more children and adults under the age of 40 than any other cancer yet have historically received just 1% of the national spend on cancer research.
Ellie Hawkes
December 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Lyra’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure