Thomas' story

“Funny, cheeky, clever. I think these are the three words that best describe Thomas or Tom-Tom as we called him a lot,” shared Thomas’ mum, Louise Pearce. “He was really funny actually and a little bit more rebellious than his brothers. We’d pick him up from school and he’d say, ‘I got told off three times today’. While his brothers would have been devastated, he didn’t really care, he just had that sort of attitude.

“Tom-Tom was the class clown and just wanted to entertain everyone. His dad, Gary, was just the same at his age, so it must be genetic!! His sense of humour was just so funny, quite sarcastic. He’s the youngest of three and was quite short for his age and quite thin so he was a tiny little thing but then he talked to you and he just seemed older!

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“He was really clever. He learnt the names of all the flags of the world. He could name them just like that. And he loved sea creatures; sea turtles were his favourite. He enjoyed watching David Attenborough programmes on the ocean. He loved Minecraft and Roblox – he was just a normal little 8-year-old boy.”

But at the beginning of 2024, Louise and Gary began to notice some subtle changes in Thomas. He started talking more slowly and he’d forget things that you normally wouldn’t forget, like the start of half term or what had happened that day. “At first, we’d just say ‘Thomas, can you speed up’ when he was telling us something,” shared Louise. “I got in touch with the GP, but they said it didn’t sound urgent, so we waited for an appointment. Then on the day he was diagnosed the symptoms started escalating. Thomas began to dribble but didn’t realise he was doing it, so I called 111. I thought they would just reassure me and say it was nothing but instead they sent us straight to see the out of hours GP at Poole Hospital. Thomas was taken up to the paediatric unit for a CT scan and then they told us they had found a mass on his brain. We were shocked as he hadn’t had any headaches or sickness, it was just really little things. We knew something wasn’t right but thought perhaps it was some sort of learning difficulty as he was talking so slowly. Or something wrong with his hearing. We’d had his ears unblocked but that hadn’t made any difference. Looking back, I remember he had this funny head tilt when he was looking at you and I found out later on that it was because he had double vision, but at the time I would never have known that. I never suspected anything like a brain tumour.”

The family were sent to Southampton Hospital as this is where Thomas would be receiving treatment for his tumour and he was sent for an MRI scan. “That was awful as Thomas found it so hard to stay still. It took three attempts over two days,” Louise continued. “The scan showed that the tumour was right in the middle of Thomas’ brain where they couldn’t access it. It was also in his temporal lobe which they could access for a biopsy and at the top of his brain stem. They told us then they wouldn’t be able to remove the tumour because of where it was.”

Two weeks later Louise and Gary were called back to Southampton for the biopsy results. They received the news that Thomas had a high grade, aggressive brain tumour. The family were told Thomas was only likely to live another 12 months at most and they should try and do as many nice things as they can as a family. “I just couldn’t take it in. Gary and I were hearing this devastating news as Thomas was sat outside the consulting room,” said Louise. “We decided not to tell Thomas he had a tumour or cancer, we just said he had a lump in his head, and we had to try and get it out. He was only eight and we didn’t want him to be scared. We lived day to day, putting it out of our minds ‘it’s not going to happen today’ and hoping for a miracle. One of his brothers knew everything, the younger one didn’t, so we had to be strong for them too.

Thomas went to London for radiotherapy and chemotherapy to help ease his symptoms but in September the family were told that the cancer had progressed rapidly and aggressively. The cancer was now in Thomas’ spine, and he was probably only going to survive another two weeks. Thomas was referred into palliative care, and this is when Louise and Gary first heard about Julia’s House.

“Being referred to the hospice was a bit of a shock in itself. It took me a while to get my head around it, because it’s never a nice thing to think about a hospice. But we had a home visit from one of the nurses, Natalie, and sibling worker Karen, and they were just so lovely from the start. I just thought ‘these are really lovely people, and these are the people we want around’.

“I wanted Thomas to stay at home and was quite against him going to the hospice, but when I visited Julia’s House it was just nothing like you’d expect a hospice to be. It’s like a little home, warm and inviting; it’s so nice. And then I was really torn. It was so different to what I thought, I felt perhaps he could go there. And while in the end we did decide to keep Thomas at home, it was good to know that the option to go to Julia’s House was always open. Natalie said if things get too hard to care for Thomas and we change our minds; he can just come straight in. I always knew it was there if we needed it.”

Having originally been told it was unlikely Thomas would live beyond two weeks because of how the cancer had spread, he lived for nine weeks. “He was relatively OK for the first seven weeks. The Julia’s House and NHS palliative care nurses shared his care and visited him a few times a week first of all to check on him. They would bring things that helped him - he loved Halloween, so they came with lots of spooky treats.

“Thomas told us that when he grew up, he wanted to be a cashier. Hearing that broke my heart as I knew he wouldn’t grow up. I bought him a little till. But then Julia’s House arranged for Thomas to go and work on a real till at our local Morrisons. He served actual customers and just loved it. It made his day. It was the little things they did like that which just made all the difference.

“When Thomas deteriorated, the nurses needed to visit every day to sort out his syringe driver and catheter. We had the same Julia’s House nurses – Nat, Hannah and Gemma – and Thomas got to know them. We all did. They didn’t just come to look after Thomas’ medication, they came for him, to spend time with him, talking with him. That was really lovely. He had that relationship with them, we knew they knew him and it wasn’t just a different person coming into your home at such a time. It was like they were our family.

“They thought of everything. Thomas couldn’t use his legs anymore but still had some feeling in them, so Julia’s House arranged for their complementary therapist to give him leg massages as he loved the feeling of having his legs rubbed. When he had trouble talking, they arranged for an app so he could communicate – he spent all his time making fun of his brother, Charlie, and winding him up!

“When Thomas died at home, it didn’t seem right for him to go straight to the funeral home. I wanted to have him with us, to know where he was. We needed time for us all as a family to adjust. So, we took Thomas to the hospice. When we walked in, they had set everything up just for him. The duvet on the bed was sea turtle-themed, David Attenborough’s Ocean film was on the projector and there were sea creature toys everywhere. I looked out of his window and could see squirrels playing in the garden. It was made so special for him and Thomas would have loved it. We all stayed there, Gary, Josh and Charlie and me, for three days.

“They looked after us. They talked to us. Cooked us meals, made cups of tea. We didn’t have to worry about anything. Being in this little bubble with Thomas was just what we needed. We needed to be there altogether and adjust to Thomas’ death. All the boys had the chance to spend some time together. In some ways, I wish we had gone there sooner.”

Julia’s House continues to support Louise and her family after Thomas’ death: “I meet up with the nurses, and we just have a really nice ongoing relationship. Because they did know Thomas, it’s nice that we can talk to them about him as they remember him too. We often walk and talk – walking has really helped. They’ve also arranged a counsellor for me. And we go to the events they specially arrange for bereaved parents. I’ve been to a wonderful wellness event with a sound bath and yoga as well as a Christmas crafting session. It really helps to talk with other people who understand. There’s a connection between us. It just feels different even though sometimes you don’t even talk about that. It’s a different sort of understanding. I’ve met another mum who had a very similar experience to me, and we stay in touch now. I never imagined that Julia’s House would do that.

“I had a preconceived idea of what a children’s hospice was like, but Julia’s House is not like that at all.”

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