Our mini Ed Sheeran
Thomas was eight when his family noticed he had started speaking more slowly than usual. His mum and dad, Louise and Gary, thought Thomas might have developmental issues because they had two older boys who hadn’t experienced anything similar.
But Thomas was a funny, cheeky, clever boy who could identify most of the world’s flags and who loved animals, LEGO and Minecraft. His friends in Bournemouth called him a “mini-Ed Sheeran” because of his red hair.
Louise took Thomas to the doctor for a check-up and there were no concerns. But when he also developed a tremor in his right hand, she called 111. She was advised to go to their nearest hospital in Poole where Thomas had some tests. Then they referred him for a CT scan straight away. Louise remembers the day vividly because it was the first day of half term – Monday February 12, 2024.
‘They’ve found something on the scan’
“Thomas was used to hospital appointments because of his asthma,” Louise recalls, “But Charlie, then 12, didn’t like hospitals, so I took him home as it was getting late. The next thing I remember is getting a panicked phone call from Gary. It was gone midnight, and he said, you’ve got to come back, they’ve found something on the scan.”
Once there, Louise and Gary were told the scan had picked up what looked like a tumour, but they needed to go to Southampton Hospital for an MRI. Clinging to hope, they were told that there was no swelling, so it wasn’t classed as urgent.
After a night at Southampton, Thomas went for his scan which he found distressing as he struggled to keep still. But staff didn’t want to sedate him, so it took three attempts before they were able to obtain an accurate image. He later had scans with music or a film playing which helped.
Louise’s emotions then flitted between relief and worry as Thomas’s consultant explained that what they could see was more of “a thickening”, it wasn’t necessarily a tumour – which again gave her hope. However, there were also other areas of the brain that didn’t look normal.
It was Thomas’s third scan of both his brain and spine, with contrast, that confirmed the tumour was diffuse and in six areas: his basal ganglia, both thalami, the left temporal lobe, frontal lobe and upper brain stem.
A diffuse midline glioma
Therefore, surgery wasn’t possible, but they could reach some tissue to carry out a biopsy. Louise went back to Southampton Hospital for the results and while Thomas waited outside the room, the doctor explained: “I won’t beat around the bush. It’s high grade, it’s aggressive and it started in the glial cells, so we think this is a diffuse midline glioma. We’ll send the sample off to Great Ormond Street Hospital for further tests.”
He added: “I’m only telling you this because I know you’ll Google it. Thomas has a year at most. We can give him some radiotherapy which may buy you a bit more time. But our advice is to do nice things while you can.”
During the hour-long drive home, Louise sat in the passenger seat sobbing silently, desperate not to frighten Thomas by telling him what they’d just heard: “We told him that there was a lump in his head and that’s what was causing the difficulties with his speech. After that it was a whirlwind.
“We were whisked off to UCLH for radiotherapy as that’s our nearest treatment hub for children. GOSH confirmed the diagnosis of a high grade diffuse glioma but said he didn’t have the typical mutations that a DMG which meant he wasn’t eligible for any ongoing clinical trials. This was frustrating because by this point he had the typical facial palsy affecting his mouth and nose on one side, that is often seen in patients with DIPG.”
But the bluntness with which her family was told that news that Thomas was critically ill has stayed with Louise. She said: “I get that they [healthcare teams] do this all day every day, but they’ve got to remember this is someone’s child and telling them he’s going to die is really tough. He’s our little boy so we just wanted to do whatever we could to keep him alive for an extra day or an extra hour.
“We think these things are rare but when you’re in that world and you realise how many children have got brain tumours it doesn’t feel like that. You’re dealt this card and there’s nothing you can do about it.
Louise
Treats and treatment
Thomas had 30 rounds of radiotherapy – every day for six weeks – at University College London Hospital. This was administered with steroids to reduce any swelling it might cause. He also had oral chemotherapy at Southampton Hospital and regular blood tests in Poole.
All the time they were away in London was tough on Charlie and Josh, 23, but Thomas and his mum went home at weekends. Louise took a leave of absence while dad Gary, who’s self-employed, carried on with work and home life as much as he could.
Remembering the words she was told in hospital to “do nice things while you can”, Louise filled their time in between appointments with days out to places like London Zoo, Sea Life Madame Tussauds, Tower Bridge, The London Eye, Hamleys – which has a whole floor of LEGO – the Oceanarium in Bournemouth, Marwell Zoo, Paulton’s Park, Center Parcs, Alton Towers and Butlins.
In June, they went on a Family Day to Paignton Zoo in Devon, organised by The Brain Tumour Charity – making a weekend of it by exploring further afield too.
In September 2024, Thomas also had a magical day out feeding the giraffes at Port Lympne Safari Park. But it was clear he wasn’t feeling well that day and he was complaining of back pain. His next MRI scan revealed the tumour had spread down his spine and all over the brain stem. Thomas’s medical team said there was nothing further they could do and stopped treatment.
Louise said: “It truly is a cruel disease. When Thomas couldn’t speak properly, this frustrated him, and this got worse and worse. He had a tremor in his hands which meant he couldn’t write or colour in which is something he loved to do. This also made building Lego much more difficult for him.
“Later, he couldn’t eat and had to have a feeding tube. This upset him a lot as he loved food! He couldn’t go to school much at all and really missed it as well as his friends. He lost his hair from the radiotherapy. He had to have a platelet transfusion in every chemo cycle and the first one caused anaphylactic shock, so he was terrified of it happening again.
“He had to use a wheelchair from April for tiredness but eventually he relied on it as he couldn’t walk well and when the tumour spread to his spine he lost the use of his legs completely.”
A positive memory from that difficult time was the day Thomas set up a lemonade stand outside their home.
Inspired by a video he’d seen online, Thomas raised hundreds of pounds to help the homeless and pay for one of his family trips.
He loved the fact that his story was covered by his local paper, the Bournemouth Echo.
Louise said: “I put a notice out on our local community Facebook group saying if anyone’s passing by at 3pm, come and buy some lemonade, and we had hundreds of customers. It got featured in the local paper too, so people started recognising him which made him feel famous and he loved that.”
Keeping Thomas’s name in the spotlight
Louise and her family are keen to raise awareness of childhood brain tumours by telling Thomas’s story.
She said: “Thomas had another nine weeks after that last MRI scan on 12 September. It gives me comfort that he was happy throughout it all. We were given a care team made up of nurses from the hospital and from Julia’s House children’s hospice. To begin with, they came whenever we needed them but when he deteriorated significantly after seven weeks, they came every day and the doctor visited twice a day for several days.”
With his pain kept under control, Thomas died peacefully on 16 November 2024.
Louise added: “That’s all you can hope for. We can’t fault the NHS – the palliative care we had was excellent. I think we were very lucky because not everyone receives this care.
“After all he’d been through Thomas hated hospitals. He wanted to be at home and that meant we could set him up in the lounge and his brothers could see him whenever they wanted to, or they could go up to their rooms. Having the choice is so important. We were able to choose what we wanted and what was best for us.”