My 8-year-old’s speech slowed down – 10 months later he was gone

I was watching TV to relax, having cleaned the entire house from top to bottom, when my phone rang. 

It had just passed midnight on the first day of February half term in 2024. Hours earlier, I had come home from our local hospital in Poole with our middle son, Charlie, leaving my husband Gary with our youngest, eight-year-old Thomas, while he had some tests.  

It was Gary on the other end of the phone, panicked: ‘Louise, you’ve got to come back. They’ve found something on the scan.’ 

My stomach lurched.  

My eldest, Josh, 23, looked after Charlie while I drove the half hour journey to the hospital, from our home in Bournemouth.  

I was terrified.  

It was January 2024 when I first took Thomas to the doctors – I noticed he had started speaking more slowly than usual. Everything he said was perfectly clear, it just took ages for him to get a sentence out.  

Our GP, however, wasn’t concerned. Thomas also had some trouble with his hearing so the doctor said it must be because his ears were blocked and affecting his speech. We put olive oil in them and took him to have the wax suctioned but there was no change.  

Thomas was getting increasingly frustrated. It didn’t make sense that our cheeky, bright, mini-Ed Sheeran, who could identify any country’s flag and loved being with his brothers or school friends, now couldn’t speak well. 

Three weeks after seeing the doctor I saw he was having trouble playing with his LEGO because his right hand was shaking.  

This, paired with his slow speech, worried me, so I rang 111. After answering their questions, we ended up being referred for an MRI scan. 

Fast forward two weeks, and more tests, when Gary called me from the hospital rushing me to get back for the results.  

It was the worst news.  

Thomas had a cruel disease that would gradually rob him of his speech, his ability to walk, eat and, ultimately, his life – he had malignant brain tumours in his basal ganglia, both thalami, the left temporal lobe, frontal lobe and upper brain stem.  

The doctor explained: ‘I won’t beat around the bush. It’s high grade, it’s aggressive. We’ll send the sample off to Great Ormond Street Hospital for further tests.’ 

We were completely shocked, in disbelief, numb even. I just wanted to get my little boy, who was waiting outside the room, and take him home. 

We told Thomas he had a lump in his head and that’s why his hand and speech had been affected. He didn’t really say much, he just accepted what we told him.  

But we had hope.  

There was no swelling around the mass, so it wasn’t urgent, we were told.  

We thought surgery might be possible, like with other cancers, and that a biopsy to identify genetic mutations might mean Thomas was eligible for a clinical trial. But unfortunately it was a ‘no’ on both counts.  

Two weeks after finding the brain tumour, when we received the initial biopsy results, the consultant said: ‘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.’ 

The news was delivered so bluntly, that it stayed with me. 

I understand that medical teams do this every day, but they’ve got to remember this is someone’s child and telling his family he’s going to die is really tough. We just wanted to do whatever we could to keep our little boy alive for an extra day or an extra hour. 

I sobbed silently in the passenger seat as Gary drove us home, while I tried to process it all. After that it was a whirlwind.

We wanted to understand what was happening and find out more, so we went on The Brain Tumour Charity website – it told us that about 40 children a year in the UK are diagnosed with diffuse midline glioma.

Only 10% survive for two years or more. Brain tumours are the biggest cancer killer of children and the under 40s.   

After the diagnosis, I took leave from my role as a mortgage advisor to be with Thomas while he had 30 rounds of radiotherapy at University College London every weekday for six weeks. We were able to come home at weekends, or have the family come to meet us.  

Over the next five months, whenever we could, we decided to take the advice we’d been given and ‘do nice things’.   

Thomas loved animals so we visited a different place each weekend: London Zoo, Sea Life, the Oceanarium in Bournemouth, Marwell Zoo, Paulton’s Park and, in June, we went to Paignton Zoo in Devon for a Family Day organised by The Brain Tumour Charity.  

From April onwards Thomas used a wheelchair as he got really tired but we were still able to go to Madame Tussauds, Tower Bridge, The London Eye, Center Parcs, Alton Towers, Butlins and Hamleys – which has a whole floor of LEGO.  

He loved Alton Towers. Since he was in a wheelchair, he was given a special pass to access each ride. He even got to hold a starfish at the aquarium there. 

Thomas did the best he could under the circumstances, but it did upset him that he couldn’t eat and had to have a feeding tube. He couldn’t go to school much and really missed it, as well as his friends.  

But he never asked any questions about his tumour; we told him it was still there and he simply accepted that.  

He lost his hair and had to have a platelet transfusion in every chemo cycle. The first one caused anaphylactic shock, so he was terrified of it happening again. 

There were also positive memories. Thomas decided to set up a lemonade stand outside our house. He’d been inspired by something he’d seen on YouTube, so I put a notice out on our local community Facebook group asking passers-by to come and buy some lemonade.  

We were overwhelmed by the support – hundreds of people came by as customers. Thomas raised £1,000 to help the homeless and even help pay for one of our trips.  

He got featured in the local paper too, so people started recognising him, which made him feel famous – he loved that.  

In September 2024, Thomas fed the giraffes at Port Lympne Safari Park thanks to the charity Make-A-Wish UK. But he was complaining of back pain and looking back at the photos it was clear he wasn’t feeling well that day. 

His next MRI scan on 12 September showed the tumour had spread down his spine and brain stem. The hospital said there was nothing else they could do and stopped all treatment. During this time, Thomas was unable to do much.   

He lived for another nine weeks and then, with his pain under control, Thomas died peacefully on November 16, 2024. That’s all you can hope for.   

After all he’d been through Thomas didn’t want to be in hospital and, although it’s lovely, I wouldn’t have been happy in the local children’s hospice either. 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 – with a care team from the hospital and Julia’s House hospice.  

Having the choice is so important. We were able to choose what we wanted and what was best for us. It comforts me that he was happy throughout it all. 

I think we were very lucky because not everyone receives this care. We can’t fault the NHS – the palliative care we had was excellent.  

It’s important to us to raise awareness of brain tumours in children, hoping that one day a cure is found and no other family has the heartbreak of losing a child. 

Thomas was so brave and we want people to remember him like that. 

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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