We are grateful to Taylan, and his aunt Beckie, who worked with us in September 2023 to share his story here. Sadly, he passed away in February 2024. We remember Taylan as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
Taylan, from Broughton Astley, Leicester, was five years old when he was diagnosed with the most aggressive form of medulloblastoma. It followed a few headaches after playing football, and when his mum Laura noticed he was wobbly on his feet she took him straight to the GP. He had surgery to de-bulk the mass, and is undergoing proton beam therapy, with chemotherapy to follow. His aunt, Beckie, set up a crowdfunding page to allow his parents to take precious time off work to spend with Taylan.
Here is Taylan’s story, as told by his aunt Beckie Chamberlain…
Just a few weeks ago my sister Laura and her husband Toygun had their lives changed forever. Their precious only child, Taylan, was so bright and happy; he was loving life, with his whole future ahead of him. But then they were told he had brain cancer.
Taylan has always been a very clever, switched-on little boy, he is very popular with lots of friends and is in lots of clubs.
But then he mentioned a couple of times that he had a headache after playing football. Laura told him to rest, but thought it was a bit weird as kids of five years old don’t usually get headaches. Then he started to get a bit wobbly on his feet.
“On Tuesday 30th May 2023 Laura took Taylan out for the day and they were at a museum when she saw he was running around, but then started staggering about and struggling to walk and run straight.”
Laura realised something was seriously wrong so she took him straight to the GP, who got Taylan to do some balance tests. She could see he wasn’t responding as he should, so told Laura to go to Leicester Royal Infirmary for further tests immediately.
In hindsight, we are all so thankful that the GP took it so seriously and moved on it quickly. We’ve since heard so many stories about it taking months, and repeated medical visits, before a diagnosis is made.
At Leicester, Taylan was given a CT scan which revealed something on his brain. He then needed an MRI scan for the doctors to glean more information, at which point they confirmed the utterly devastating news that Taylan had a tumour on his brain.
Laura rang me out of the blue one evening while I was home, and said we’ve got some bad news. I thought ‘oh my God’, and she said ‘Taylan’s got a tumour on his brain’. They didn’t know much more than that; what it was or if it was cancerous, just that he had to have an operation the following week. It was an absolute shock and utterly devastating. I live in Australia now with my husband and children, but we still speak all the time. My sister is my best friend. I knew I had to get back. My husband could hear me on the phone and knew something was wrong so started Googling flights for me straight away. I dropped everything, got on a plane and managed to see Taylan before his operation.
“A week after his initial GP check, he was undergoing a seven-hour surgery at Nottingham University Hospital.”
The surgeons were able to remove the majority of the tumour but devastatingly, when Taylan came round it was evident he was suffering from posterior fossa syndrome (PFS). This is a collection of side effects as a direct result from the surgery on the cerebellum - the back part of the brain. It left Taylan with serious mobility issues. He was unable to sit, walk, or eat. He also had vision problems and perhaps the most upsetting symptom, he completely lost his ability to speak.
The challenges ahead felt huge for our little Taylan, with so many mountains to climb. The first challenge was to build his strength again. My visit lasted three weeks, and just as I was leaving for Australia, he’d started saying the occasional word. For Laura and Toygun to hear him say ‘Mummy’ and ‘Daddy’ again was just amazing.
He had to re-learn to sit, walk, drink and eat, which is no easy feat but Taylan worked hard to regain his independence. Over months and lots of physio sessions, his mobility, vision and speech thankfully gradually started improving. He is now able to walk unaided and talk! He is such a brave and resilient little boy.
Following the surgery came the diagnosis. From the scans the specialists were 70% sure it was a medulloblastoma but the lab results were needed to confirm this, and they took a couple of weeks. Unfortunately, when they came back in July it was confirmed not only to be a medulloblastoma, but the highest, most aggressive type; group 3.
“It’s every parent’s worst nightmare to hear the words ‘your son has brain cancer’, but to hear the type also has the worst prognosis is just life shattering.”
Once they had Taylan’s diagnosis, a plan was put in place and he was put on a six-week course of proton beam therapy at a specialist centre in Manchester. The treatment targets the whole brain and spine to start, with more targeted treatment further on in the course. Then he’ll get about a six-week break where he can hopefully go home, before he starts a six-month course of chemotherapy.
“The news is still so raw, I feel like it truly hasn’t sunk in and in some ways, I doubt it ever will. It’s simply a living nightmare.”
It’s all so much for a little boy to take. Laura and Toygun have told Taylan he has a ‘naughty lump’ in his head that the doctors are trying to get rid of. He knows the treatment is there to make him strong again and to stop it coming back. There’s no point frightening him with any more information than that; it’s more important to stay as positive as possible around him while he is fighting so hard.
Its difficult to know what to do or say at times and there is a great feeling of helplessness. During the long hospital stays, Laura and Toygun were sleeping on camp beds beside Taylan’s hospital bed and they didn’t leave his side.
I supported them by just being there, I booked a hotel just five minutes from the hospital so I could help out as much as possible - bringing them food and drinks, sorting everyday life admin etc. Anything to try and reduce stress from other areas of their lives. I kept close family and friends up to date as much as I could. It was really tough having those conversations but I’m glad it was one less stress for Laura and Toygun.
It was Taylan’s sixth birthday on 30th June and we had to cancel his birthday party, which was really sad. He had a cake and some balloons with his mum and dad, but we want to make sure his seventh birthday, and beyond, is happy and bright and involves celebrating with his family and friends. His classmates miss him, even the family cat Nala missed him and wants him home.
“It’s a long road ahead for Taylan, Laura and Toygun and with this comes huge financial difficulty.”
I set up a fundraising page, because we don’t know what the future holds. We are praying Taylan responds well to the radiotherapy and chemotherapy, but want to be ready to start funding any private treatments here or abroad, which Taylan may need to beat this.
More immediately, I wanted to help support Toygun and Laura in being able to afford to take time off work to be with Taylan. Obviously, they want to be with Taylan every step of the way and focus every ounce of their time and energy on their beautiful boy and getting him well again.
The thought of them having to lose their home whilst going through this tough journey would be awful. Taylan is counting down the days until he can see his bedroom again. So many other costs also mount up; there’s a huge amount of travel, bills and accommodation costs involved in all Taylan’s care.
I couldn’t believe how fast the fundraising total went up, we had about £20,000 in the first 24 hours. I shared it with all our friends and family, went to sleep (in Australia) and when I woke up I was totally shocked at the incredible amount . Laura and Toygun are beyond grateful. We’ve had so many donations from people we don’t even know, it’s amazing. One of my friend’s little boys said he would ride his bike to raise money, and that just grew and grew. It ended up as a bit of an event with stalls and raffles and raised more than £5,000. Three lovely local guys put in a huge effort taking on the National Three Peaks Challenge which included a 485 mile bike ride whilst also conquering Ben Nevis, Scafell Pike & Snowdon! They raised over £4,000! Taylan’s school and old nursery are doing fundraisers too. Everyone’s kindness is so heartwarming; and we’ve had so many messages of support, help and advice too which is incredible.
“It just makes you realise, nothing else matters in life except the people you love. All the little things you worry about every day, really aren’t important.”
Fortunately, Taylan’s speech, mobility and eyesight is now almost back to normal, he is talking and laughing again which is magical. The battle to get better continues and he is trying so hard everyday. Proton beam radiotherapy has almost finished. Taylan is counting down the days so he can ring the bell and be cheered on by all the nurses and doctors. He can’t wait to get home for a little while (before chemotherapy begins) and see some of his friends and the cat, which will feel like a tiny bit of normality!
Beckie Chamberlain
September 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 just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Taylan’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure