Taylan was just five when he was diagnosed with an aggressive medulloblastoma after experiencing visual problems, sickness and balance issues. He suffered with posterior fossa syndrome (PFS) following surgery and underwent radiotherapy and chemotherapy treatment, but managed to cope with such positivity. Heartbreakingly, the treatment couldn’t stop the spread of the cancer and his parents were told that palliative care was all that was left.
Here is Taylan’s story, as told by his mum, Laura …
Our beautiful, bright, energetic and sporty little boy had so much love for his family and friends. He was always full of life and such a joy to be around – a happy, smiley, loving boy who made everyone laugh.
Tay was a very popular boy at school, thriving in every subject with maths and science being his favourites. He had a wonderful appreciation for nature, a true love for animals and was Lego-obsessed.
On Friday 12 May 2023, I picked Tay up from school and on the way home he said: “Mummy, sometimes when I look at things they go blurry.”
I called the opticians’ that afternoon and got an appointment for the following day. Tay was checked out and everything seemed fine and there were no concerns about his eyesight. I continued to ask him about his vision, but he didn’t mention anything further and seemed his normal self.
Then, on 22 May, during football training, Tay ran over to me and said he had a headache, which was surprising as he’d never complained of one before. I told him to sit and have a rest and a drink. Five minutes later, Tay was off to join in with the team again.
But since that first headache, as the days went on, Tay started to show more concerning symptoms like waking up some mornings feeling sick and having a tummy ache. He could also be quite emotional and felt tired even after a full night’s sleep. He just wasn’t himself. I started to question whether he was taking on too much with all his after school clubs, play dates etc. Maybe he was just exhausted and needed a break from all his activities?
Then Tay became unsteady on his feet and was losing his balance, so on 30 May I took him to the GP surgery. I took a video of Tay walking into the doctors’ so I could show the GP. I was determined not to get turned away because by this point I was convinced there was something seriously wrong. Luckily the doctor didn’t hesitate and referred us immediately to the Leicester Royal Infirmary where he had a CT scan.
“Later that evening my husband, Toygun, and I were told the unimaginable – every parent’s worst nightmare – that they had found a mass in Taylan’s brain. I remember not being able to feel my legs when we were told the heart-shattering news and the paediatrician’s voice seemed so far away. It felt as though it was just me in the room and I was screaming inside, but totally numb on the outside, although shaking with fear. It was a moment which will haunt me forever.”
We were blue-lighted to the Queen’s Medical Centre in Nottingham, which Tay thought was so much fun. I’m so glad he didn’t know how serious it was. An MRI scan revealed that Tay’s brain tumour was the most aggressive type of medulloblastoma and that the cancer had already spread into his spinal fluid. This automatically put him at high risk.
On 6 June, Taylan underwent a seven-hour operation in which surgeons successfully removed 99% of the tumour, but devastatingly, when Tay came round from the surgery it was evident that he was suffering from posterior fossa syndrome (PFS), a collection of neurological symptoms that can occur following surgical resection of a posterior fossa tumour and which develops in around 25% of children with medulloblastoma. Taylan was unable to sit up, walk or eat. He had visual problems and, the most upsetting symptom – had lost the ability to speak.
The challenges felt so huge for our courageous boy with so many mountains to climb. The first was to build his strength again and he did just that with a fantastic physio team who worked with him every day. Meanwhile Toygun and I offered him lots of encouragement and inner strength. It was incredible how determined he was to regain his independence.
Tay was building his Lego again just days after surgery and, after three extremely heart-wrenching weeks, Tay’s speech started to come back and his mobility was improving every day until he was finally able to walk unaided and talk again.
“Tay was such a brave and resilient little boy, but no child should ever have to experience this devastating diagnosis along with the subsequent physical and emotional trauma.”
At only five years old when he was diagnosed, Tay was far too young to fully understand what was happening. I didn’t want him to feel scared or distressed and, as his mummy, I wanted to protect him from worry and make him feel safe. We told him that the “naughty lump” in his head was making him feel poorly so it needed to be taken out and all the strong medicine was to help stop the lump from coming back.
Heartbreakingly, Tay only asked a couple of questions and then just accepted what needed to be done to try and make him better.
“We knew how important it was to stay positive around Tay and give him all our love and reassurance, but, at the same time, Toygun and I were drowning in fear and feeling completely broken for our boy.”
Taylan was put on a six-week course of proton beam therapy (an advanced form of radiotherapy) at The Christie in Manchester, which meant six weeks away from home, a daily general anaesthetic and 30 rounds of radiation to his whole brain and spine.
It was so tough because, at the start of treatment, Tay was still suffering from PFS, still weak from surgery and frustrated that he couldn’t do the fun things children should be doing. He missed his friends terribly and all of his home comforts, but we made sure to have fun times and make special memories as a family.
We celebrated Tay turning six on 30 July whilst in Manchester. There were just the three of us and I filled the room with balloons and decorations, piled the table high with presents and surprised him with his request for a BMW police car birthday cake. Tay spent the day building new toys with his daddy, feeling happy and loved.
We had a lot of bittersweet moments trying to make this unthinkable journey bright for Tay, but with his incredibly positive attitude and personality, we had lots of laughs and fun times.
On 5 September, having coped so well throughout, Taylan completed the proton beam therapy and, feeling extremely proud, rang the end of treatment bell. It was such an emotional day for all of us, including the nurses who had cared for and loved him over the six weeks. We travelled home that afternoon, listening and singing to songs in the car, feeling happy that Tay was finally able to return to some normality again.
Tay spent the first three weeks being with friends, playing in his bedroom and snuggling up to his cat, Nala. It was a time to rest and recover and simply just feel the comfort of home life. We had all missed it immensely.
Towards the end of Tay’s recuperation at home and close to the start date of high-dose chemotherapy, Tay had some sickness when he woke in the mornings. Our first thought was that this may be a side effect from all the radiation his body had endured. I had already planned to speak with the oncologist in Sheffield regarding his chemotherapy, so I mentioned the recent sickness Tay was having and immediately they were keen to book an urgent MRI scan.
On 19 October, we were informed that the scan results showed more tumour spread across the surface of Taylan’s brain and spine. We were told:
“There is no easy way to say this, but we can no longer aim to cure Taylan. It’s too aggressive and the radiation has only slowed it down. We can now only offer palliative care.”
This was impossible to accept. Our loving, funny, clever, most gorgeous little boy wouldn’t survive. He was my favourite person in the whole world.
After we were told the devastating news, we wanted every decision to be about Taylan and what was best for him. We made sure to experience wonderful times together as a family, but the harsh reality is that we faced utter despair and heartbreak, continuous thoughts of: “Can this be our life? Surely we have fallen into the wrong place? How can this be happening to our six-year-old child?”
Taylan started a course of intracellular chemotherapy to help manage and slow the progression of the cancer. This meant we could spend more quality time at home together, instead of months in hospital, because we really had no idea how much time we had left with our boy. But after an impossible decision as parents, we decided to stop all chemotherapy after Christmas 2023 as the toxicity going directly into his brain was making Tay so poorly, resulting in early stages of dementia. We all knew the progression was taking over and it was no longer fair on Taylan to keep fighting. His little body had been through too much.
Our sweet, loving, beautiful boy passed over to the other side on 9 February 2024 with his mummy and daddy telling him how much we love him and how we would be there with him forever, never letting go.
“We will never find the words to describe how we feel after losing Taylan. There is no fixing this pain and we now face an indescribable journey of survival. When you lose your child, the world becomes a different place and everything looks grey. Taylan touched so many hearts with his joyful soul and he taught us the true meaning of love.”
Our only focus now is to honour Taylan and keep his name alive by sharing and remembering a courageous warrior who knew how to laugh and love.
We want to help raise awareness for Brain Tumour Research as it’s the only national charity dedicated to funding long-term, sustainable research in the UK, which is why we’ve set up Tay’s Tribe, a Fundraising Group, to build a legacy for our beautiful boy.
Please help us find a cure in memory of Taylan.
Laura Kurtul
May 2024
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 touched 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