I’m 16 and a brain tumour has left me with insomnia and stunted growth

Since being diagnosed with a brain tumour when she was 10, Eve Wilson, 16, from Portsmouth, has faced overwhelming adversity. To mark the release of a powerful new documentary film about children with cancer, Eve shares how the support of her mum and her love of dance has helped her thrive, despite years of ongoing treatment.

I first started getting symptoms in May 2019, when I was 10, about six months before being diagnosed. At first, I thought my eyesight issues were from a bad night's sleep. Soon I started getting headaches and fatigue, but I just pushed through.

My friend and I made a deal in class because I couldn’t read the blackboard – she would read for me and I’d help her with homework. Often I had to leave class because of headaches, but the teachers got fed up and would tell me to drink water.

The school thought the headaches were caused by hormones and I was even told I just wanted glasses to fit in. Once, it got so bad, I intentionally cut my hand in cooking class just to be sent to medical. Being told you're lying is one of the most infuriating things.

We went back and forth between doctors and opticians until eventually being referred for an MRI scan. I remember I was so tired I fell asleep in the scanner. In the waiting room, I watched as everyone else went home.

Eventually, we were taken to a private room and when my parents came back, the doctor looked heartbroken. She told me I had a brain tumour and I’d have surgery the next day. In a way, it was a relief. I was so happy to be told I wasn’t crazy and that they were going to fix me – I never realised that there was a chance I could go blind or not wake up from surgery.

The tumour was in the middle of my head, so they couldn’t remove it, but they drained the fluid and cysts causing my symptoms. When I woke up, it was like a miracle – I could see a sign in the room that had been invisible before. My recovery was fast – within two weeks, I was dancing again. Street dancing is my passion and my friends on the dance scene are like my second family.

Losing my hair

But after a few months, some symptoms started to return. In February 2020, a scan showed the tumour had grown a new cyst, threatening my vision. This time, it couldn’t be drained. I was told I’d need proton therapy, a kind of radiotherapy. I didn’t fully understand, but I knew I didn’t want my life to change again.

Proton therapy isn’t widely available and with COVID lockdowns starting, we didn’t know if I’d be able to have it. By June 2020, it was approved, but Mum and I had to move to Manchester for seven weeks. Missing my second summer in a row was heartbreaking. My friends could still go to the beach while I was far away. And I was losing my long blond hair – which always lightens in the summer.

When my hair started to fall out, thanks to Mum, I didn’t notice at first. She’d quietly clean up the hair off my pillow or the shower floor before I could see it. She tied my hair into a low ponytail every day. I didn’t lose it all with proton therapy, but I did lose all my eyelashes and eyebrows.

During proton therapy, I tried to stay positive and get through each session as quickly as possible. The side effects were tough – all I wanted was to go back to my room and sleep. Friends visited, but after their long drive, I’d often be too exhausted to see them.

Battling insomnia

Once treatment ended, the cysts went away and the tumour stabilised. I’m now scanned every nine months, but recovery wasn’t as fast as after surgery and the side effects can last up to 15 years. Fatigue has been the hardest part and I haven’t had the same energy since. I’ve become an insomniac. Sometimes I fall asleep during the day, and when I’m out with friends, my social battery dies quickly.

I also have a growth hormone deficiency, so I take daily injections. I've had awful period problems too – at one point, I had my period for a year and a half straight. It was so frustrating, but I didn’t know how to let my feelings out.

Eventually, a neuropsychologist helped me understand that it was okay to not be strong all the time. Everyone tells you you’re brave, so you feel you can’t be vulnerable, but it’s okay to share when you’re struggling.

Now, if I’m in a bad mood, Mum and I go for a drive, usually to the beach, our special place. We’ll throw stones and it doesn’t fix things, but it calms me down. One time, we even smashed plates in the garden.

The power of dance

Mum and I are so close now – in Manchester, it was just us, and she’s my best friend. I went back to school and took two GCSEs early, giving me extra time to rest and exercise, which is my medicine. I mostly dance, but I also do Pilates and body conditioning. Even if I have a headache, I move because sitting still doesn’t help. People tell me I’m taking on too much, but I feel like I’ve been given a second chance in life.

I’ve changed since getting ill – I want experiences now, not things. I see some friends obsessing over little things and it’s hard to be sympathetic. But I think my illness has changed them too – they see that life is precious.

The tumour has shrunk, but it’s still there. I know it could grow again and the cysts could come back. I want to travel, dance, work at Disney and be a surf instructor in Hawaii. Life is precious and I don’t know how long I have, so now I want to live it to the full.

Eve's mum Penny Wilson says:

The day they told us Eve had a brain tumour, they took us to a little room and showed us the scan. I saw the tumour right in the middle of her brain and my heart sank. In my mind, I thought, 'She's done for. How are they going to be able to do anything?'

Eve had no idea how serious it was – she was just playing with the nurses, while we were being told she could die.

The surgery was awful. I remember holding her hand as she went under, trying to hold back the tears, to keep it together for her. I just wanted her to fall asleep before I started crying. When she came out of surgery okay, it was a miracle, but I knew not every child on that ward was as lucky.

Devastating news

Then the surgeon told us the tumour couldn't be fully removed and the recurrence rate was high. I tried to ignore it, focusing only on the fact that she was okay. But the constant stream of medical professionals telling us the awful prognosis was so hard to bear. I didn't want to listen to it – I just wanted my child to be the exception.

When the cysts came back, it was devastating. Being mid-COVID crisis, only one parent was allowed into hospital at a time, so I had to be the one to hear all the terrible news and then relay it to my husband. This put a huge strain on our marriage.

We tried a few therapy sessions, but it was so hard to find the time and energy to focus on ourselves when our child's health was the priority. I also felt guilty for not being able to give my other child, Ollie, now 19, the attention he deserved.

Terrified of losing her

Those middle-of-the-night moments, when I'd wake up terrified that Eve might die, were the worst. I'd sit by her bed, watching her sleep. I used to think, 'What have I done to deserve this?'

The financial strain was crippling too, as I gave up my job in London for a part-time job in Portsmouth to be able to spend more time with Eve. It just felt like we were fighting a battle all the time.

The charity Children With Cancer has been a lifeline, just being able to talk to other parents going through the same thing. Hearing their stories and sharing our own has provided a sense of community and understanding that I couldn't find elsewhere.

Looking back, I wish I had trusted my instincts more as a parent – if someone had asked the right questions, maybe we could have caught the tumour sooner. But now, I try not to take anything for granted. We live in the moment, seizing every opportunity for joy, because we never know what the future holds.

My marriage has been through so much, but we're still here, recently celebrating our 25th anniversary. This journey has changed me, but it's also made me more grateful. Every day my child is still here is a blessing and I'll keep fighting for her, no matter what. This is our new normal and we'll face it together, as a family.

Eve is one of eight children who star in a powerful new documentary film exploring the reality of living with childhood cancer. Kids Like Us was produced by Echo Velvet and made in partnership with the charity Children With Cancer UK. It is available to stream on Sky and NOW TV. For information and support, visit ChildrenwithCancer.org.

Read more on cancer:

I was diagnosed with the exact same cancer as my mum (Yahoo Life UK, 6-min read)

I saw breast cancer as a woman’s illness and was too embarrassed to tell people I had it (Yahoo Life UK, 6-min read)

The symptom that led to my breast cancer diagnosis (Yahoo Life UK, 5-min read)