Thomas Fight TALL is a Special Named Fund at CCLG raising money for research into childhood leukaemia to help other children like Thomas.
Thomas was five years old when in February 2019 he was diagnosed with T-Cell Acute lymphoblastic leukaemia (ALL).
His mum Gemma shares his story.
Before his diagnosis, Thomas liked to play with his toys. He was massively into Paw Patrol, Lego, cars. He was a very happy child, into really innocent child things. The worst thing about all this, is that he’s grown up so quickly – too quickly – that these don’t interest him anymore.
Now, he’s an absolute avid gamer. He has been ever since the diagnosis, after being on a teenage ward of all places, isolated with just a PlayStation. He’s gaming mad now, but like a teenager.
It’s changed him so much. To speak to him, you wouldn’t know he’s so young because he’s had to grow up so quickly. It’s literally stolen his childhood.
I find that tough.
Thomas was diagnosed on 12 February, 2019, at Leeds General Infirmary, and everything turned on its head.
I took him in the evening before, after I’d been taking him to the GP for several months. In these months I knew there was something wrong with him. But I didn’t think for one minute it could be this.
He’d been struggling to breathe, which was really alarming. It was snore-y, wheezy, and like someone was pressing on his chest, all at the same time. He was always tired, too. He would sleep all day if you’d let him. I think this was because the rest he was getting wasn’t actually restful.
I was told he had asthma, but I was taking him back saying he’s really bad at night. It turns out, he had a huge mass on his chest and it was crushing his lungs, caused by the leukaemia cells forming together. It covered around 85% of his chest cavity.
On the evening before his diagnosis, he didn’t want to go to bed, and was getting quite upset. He eventually fell asleep on the landing, so I went to put him to bed. When I went to pick him up, I noticed a rash all over his face and top half of his chest and back.
My first thought was meningitis, so I took him to the Leeds General Hospital, where they quickly ruled it out. But something just wasn’t right, so they wanted to do further tests and took some bloods.
Early in the morning, they took me into a room, and asked if I wanted to sit down. They then told me that they suspected Thomas had leukaemia. I didn’t want to believe it, and told them they were wrong. Eventually, it started to settle in what they were saying, and I just broke down. I didn’t know what to do with it.
They did some more tests; an x-ray showed the cavity was full of the leukaemia cells that had formed a mass. For that reason, it was unsafe to put him under anaesthetic like they normally would do, so they had to treat it blind.
They started very, very high dose steroids within hours, to get the mass under control. They couldn’t put him under anaesthetic and do the regular tests and put his central line in until it had gone as it would be too much on him. As soon as they started steroids, he became quickly unwell, and was put on Vapotherm for oxygen.
Normally he would fight that, but he didn’t. He just laid there, lifeless.
That first week felt so surreal. I felt like I was watching myself from above. People were coming in and giving me bundles and bundles of information.
At first, we told Thomas that he had poorly blood, and the medicine was there to help. But he’s a bright boy and would hear things. He said to me, ‘I’ve got cancer, haven’t I?’
To hear him ask me if he’s going to die, when I reassured him the medicine will make him better, all the time, I was thinking, ‘I hope I’m right’. During all this, I started to look for something or someone to blame. I wondered if it was my fault and struggled to make sense of it all.
Once the mass did go down, he did start to fight them putting the cannulas in. This told me he was getting a bit better and regaining his strength.
Thomas has had some tough times since his diagnosis. He was admitted to hospital in the early days of COVID, with suspected Kawasaki disease. It wasn’t directly confirmed, but the symptoms were a match. During his treatment, I’ve been in hospital too, so it’s been even more difficult. When I was last in, he wasn’t allowed to come and see me. So, he stopped to talking to me. It was really hard for him, but he soon forgave me when I came home.
It was during that time that he fell in love with his grandma’s Labrador. He loves animals, particularly his beloved cat, Oreo.
Thomas has been undergoing treatment at Leeds, and has returned to school. He’s got a good teacher, who’s really looking after him. It’s someone I’ve known since I was young, so I know he’s in good hands.
He’s been complaining of aches and pains, and feeling a bit sick, but he’s a tough one. He has to be. He also had sepsis when he was younger, so I’ve almost lost him twice.
I decided to turn something awful into something positive, and set up a Facebook page to inform and educate people. We’re trying to raise awareness and hopefully Thomas’s Fight TALL Fund can help. I’ll give my absolute all to raise awareness of all childhood cancers, not just leukaemia, and what they are, the symptoms.
Thomas is a very loving little boy, and wants to help others. He wants to do a bike ride, and I’m keen to do something that I am afraid of, and conquer a fear. We have plans to raise as much as we can for research into childhood leukaemia. It’s come so far, but there’s so much more to do. The only way I’ll be happy now, is if everyone who gets it, is cured.
We’ve called the fund Thomas’s Fight TALL because that’s what he’s doing. He has T-Cell Acute lymphoblastic leukaemia (ALL): T-ALL.
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