When Kayden’s Brainy Bag arrived in the post, he had already endured months of symptoms and his future was uncertain. But he loves wearing the ‘strong’ bracelet that was one of the free gifts in the bag. That’s totally apt because he has since shown remarkable resilience. He’s steadily relearnt the skills he lost following a stroke resulting from brain surgery.
Staying strong for everyone
The week that Kayden was diagnosed with a brain tumour was one of the most overwhelming of his mum Lizzie’s life. At the same time, her partner Jayden was being investigated for suspected stomach cancer, and her mum had just been diagnosed with breast cancer. She also has four other children: Kayley, 15, Kayla, who’s 11, Kiyla, eight, and three-year-old Kayde.
“It felt like everything was happening all at once,” Lizzie says. “I was trying to stay strong for everyone.”
Nearly two years on, although Lizzie and her partner have had to postpone their wedding, which had been booked for August last year, they found out Jayden had an H. pylori infection rather than cancer.
With another sigh of relief, they found out her mum’s cancer was not stage 4 after all – it hadn’t spread to her liver.
Kayden, too, has had moments of joy, including the chance to be a mascot at a Luton Town match at Wembley – a special occasion for a boy who has always loved being active and sporty.
And his family “support squad” – pictured below – has been behind him every step of the way.
But all those silver linings came after a very dark cloud.
Kayden had been going back and forth to the GP for around nine months complaining of the same pattern of symptoms.
He had tiredness, sickness, and recurring headaches in the same place. The doctor ordered blood tests, prescribed iron tablets and asked him to keep a headache diary.
He was due to be referred to the paediatric department for monitoring, but the referral didn’t happen.
In August 2024 Kayden was diagnosed with a pineoblastoma, a fast-growing tumour at the centre of the brain.
How an eye test led to a diagnosis
His symptoms were finally taken seriously after an eye test on 21 August 2024. Lizzie had booked him an appointment because during a day out at Thorpe Park, which he’d usually run round enthusiastically, he was too tired to enjoy it. Something had changed.
She’d also noticed Kayden’s eyes seemed enlarged, but his pupils didn’t focus on her. They seemed to drift. He said he could see ok, so she thought he had a lazy eye.
At Specsavers, the optician identified a build‑up of pressure behind Kayden’s eyes and immediately referred him for further investigations. Lizzie had already been chasing his long‑awaited paediatric referral, but this time was different.
Before she and Kayden even made it home, Bedford Hospital rang to say they’d received the referral and asked Lizzie to bring Kayden in that afternoon.
Lizzie, who’s a student nurse at the same hospital, said: “Kayden stayed in hospital overnight. The following morning, an MRI scan confirmed our worst fears. He had a brain tumour.”
But if it wasn’t for the appointment with the optician, Kayden might not be here at all, and that is something I keep reliving.”
Kayden’s mum Lizzie
Four operations
Kayden needed urgent surgery to relieve hydrocephalus – a dangerous build‑up of cerebrospinal fluid caused by the tumour blocking normal drainage. He was blue-lighted to Addenbrooke’s Hospital to have an External Ventricular Drain (EVD) inserted.
Kayden had another three procedures. Eight days after the EVD, he had surgery to debulk the tumour and there were complications.
Lizzie explained: “We didn’t have time to wait. We were told the debulking surgery would take about six hours, but it took 11.
“We were told it had gone well and they’d successfully removed 60% of the tumour. But Kayden had suffered a stroke and was admitted to intensive care. It took time for him to come round.
“We walked into hospital, but we came out with a disabled child. But if it wasn’t for the appointment with the optician, Kayden might not be here at all, and that is something I keep reliving.”
Kayden needed a wheelchair that supported his head and neck. He couldn’t see and he couldn’t speak at the time, so his family just used thumbs up and thumbs down signs to communicate.
On 7 September, the EVD was removed and a VP shunt inserted to drain CSF into the abdomen because the EVD had failed and there was a risk of infection.
On 19 September, he also had a Hickman line fitted to administer a year of chemotherapy treatment. Then with great joy, on 13 March this year, Kayden rang the bell at Addenbrooke’s to mark the end of his chemotherapy treatment. It was a moment full of hope!
Now he’ll have MRI scans every six months and he’s having rehabilitation at The Children’s Trust in Tadworth, Surrey where he’s doing really well.
I’m so proud of Kayden. He’s really pushed himself and is so determined – but that’s Kayden. It’s only been 20 months but he’s come so far since the time when I would secretly cry because he didn’t recognise me. One time I was bathing him and he asked if I’d get his mum because he wanted her to bathe him and I was right there. He’d lost his memory.”
Kayden’s mum Lizzie
The impact on family life
Kayden’s diagnosis has had a profound impact on every aspect of family life, including his education, Lizzie’s career and family income.
Lizzie had been due to finish her master’s in nursing in December 2024 but had to defer. When she returned last September, her first patient had a brain tumour.
“I thought I’d be okay,” she recalled. “But being back in that whole setting, where we were first old that Kayden had a brain tumour, was too much for me so I stepped away.
“My university has been so supportive. I’m hoping to go back this September but that depends on Kayden being back in school. The EHCP plan at his high school failed to meet his needs and he had a fall which left him bruised. He also needs a special chair to sit in rather than a standard school chair, so hopefully we can resolve that.”
Kayden’s primary school, attended by his younger siblings, has been incredibly supportive, even requesting resources to help staff better recognise the signs and symptoms of brain tumours in children.
Lizzie has also found out that Kayden has the DICER1 gene. She and Jayden are having tests to find out if they carry it too and Lizzie’s have come back negative. They have four other children aged between four and 16 who may be affected if one of their parents is a carrier.
Kayden still treasures the bracelet he received in his Brainy Bag. His sister, meanwhile, has proudly ‘acquired’ his Brain Tumour Charity water bottle as her own! We hope those simple gifts are a small comfort to many children and young people at a worrying and overwhelming time.
Find out about the work we do with eye specialists here.