Tia, 12: ‘Having cancer is like running a marathon around the world a trillion times’

As a documentary about children battling with cancer comes to our screens, 12-year-old Tia tells her story

When most children my age hear that someone’s got cancer, they think, “Oh my God, are they going to die?” I try to explain to them what cancer is, because I don’t want them getting it all messed up in their heads. It is life-threatening but it’s not like how it’s portrayed on television.
That’s one of the reasons I agreed to be in the documentary film Kids Like Us, which follows me and seven other children who have been diagnosed with cancer as we talk together about our experiences. I wanted to get across the message that we’re the same as everybody else – we’re just going through cancer. 
Doctors at Great Ormond Street Hospital put me forward for it, and I was a bit nervous at first, but I knew I’d have plenty in common with the other kids involved – be it the same hospital or treatment, or the same kind of cancer. 
I was diagnosed with acute lymphoblastic leukaemia when I was four. It’s cancer of the blood. I was taking naps all the time in my nursery and was in a lot of pain. The doctors kept telling my mum that I was just growing, or that I was jealous of my younger brother, but she didn’t take no for an answer and eventually had an appointment at which we were told that it was leukaemia. My uncle and auntie were there too, and everyone was devastated. 
On my seventh birthday, I rang the bell in hospital to celebrate the end of my treatment. It felt like such a big achievement not to have cancer anymore. But unfortunately, the treatment hadn’t worked and, when I was nine, I relapsed, and then suffered a second relapse during chemotherapy.
I felt very angry. Out of all the children, why did I have to get it a second time? 
The only option was to stop the chemotherapy and do a bone marrow transplant instead. A man in another country went through a big operation to donate his bone marrow to me, which was very nice of him. The transplant saved my life.
I spent about six months on the ward after my transplant and had to be completely isolated for two months, as every little particle could have given me an infection. There was an intercom at the window where my family would come and say hi. It was a bit like being in jail, I suppose, but I was already used to being in hospital, as I’d been there for weeks before, when I had an infection or stomach pains. 
Some people’s brains block out the bad stuff, but I have the opposite – I remember all of it. My biggest fear when the cancer came back was that I might pass away. It’s so hard not to have bad thoughts like that when you’re in hospital for six months on a scary ward with really sick children. Loads of children passed away on my ward. Those emergency buzzers and the nurses rushing out of my room kind of affected me. I thought, “What if I’m next?”
But children with cancer develop superpowers, such as making friends, and patience. You’d think it would be so depressing being stuck in a hospital room, but it was actually rather fun. It went quickly. People came in and entertained me and, after a while, I was allowed to go and get lunch in the cafeteria. I met loads of other kids and made loads of friends. I’d comfort them before their treatment by saying, “It’s OK; we’re in this together.”
The talent is to get to know the hospital off by heart. I could draw a map of it. I knew all the rooms and the departments and I loved all the nurses.
I remember the first time I was allowed to leave the hospital itself to get a Starbucks. It was the most amazing feeling to have some freedom. I was like, “Whoa, so this is what the outside world is like.”  
When my treatment finished this time, I didn’t have such a big party. I was actually quite scared about leaving the hospital. My parents told me that we were moving house and I was nervous-laughing; none of it seemed real.
But our new house is really nice and going back to school was amazing. For a while my friends checked up on me all the time, and some of them still do. There’s this one boy, the most serious footballer in our year, who will always tell everyone to go easy on me when we’re playing. I think it’s because my friends have been on this journey with me – they’ve seen me well and then ill and then well again, and they feel protective.
I don’t see my cancer as a bad thing. I see it as a good scar. It hurt literally and figuratively, but I feel proud that I came through it – a bit like running a marathon around the world a trillion times. 
All the other children I became friends with while making the documentary understand this. I didn’t need to explain.  Although it was terrifying, it made me stronger. I had to be brave. 
There were loads of times when I’d tell my parents I was OK just because I didn’t want them to be scared. When they were scared, I got scared, and I wanted everyone to stay calm.
Even now, my mother would take my temperature all the time if she could. It’s kind of cute in a way. She’s my parent – obviously she’s going to panic. I don’t want her to freak out, though. There’s no point. If I feel really unwell or something is wrong I’ll say, but if it’s something small, l keep quiet. 
To any child diagnosed with cancer, I say what my dad told me: it doesn’t last forever. It probably feels like forever at the time, but in reality it doesn’t last.
With leukaemia like mine, it usually takes around two years to recover. It’s an illness: it gets treated and it goes away, and then you’ll be back to your normal life. 
I now go for a check-up every few months. I try to live in the present moment: when I speak to the doctors, I ask them what’s wrong with me now. I don’t want to know the possibilities for the future and I don’t want to know what could affect me from the past – tell me about that when it happens. Surely the future should always be a surprise?
What happens now is the only thing I can control. I’ll have to take penicillin for the rest of my life due to the chemotherapy taking everything out of my body, even the good stuff. It’s just a little tablet, though, a bit like taking a vitamin, to be honest.
The chemotherapy affected my growth and the doctors thought I might need growth hormones, but I seem to be catching up – I’ve grown a centimetre this year.
When I leave school, I want to be an actress and then a paediatric haematology oncology surgeon. I’ll never forget what happened to me in my childhood, but I’m not going to let it hold me back. It was fate. 
As told to Anna Tyzack
Kids Like Us is available to stream from September 12 on Sky