‘Take things one step at a time and ask yourself each day: what can be done?’

The first signs

During the 2022 winter sports holiday with her parents and brother Mika, everything was still carefree. Emelie says, ‘I went down one slope after another. And I didn’t fall once that whole week!’ But three weeks later, she rode her bike into a post. Her mother recalls, ‘We thought that was odd. Could she be seeing less clearly? She also suddenly sat very close to her laptop screen.’ Emelie adds, ‘And at night, I had terrible headaches. It felt like someone was hitting my head with a tennis ball.’

The optician couldn’t find an explanation and advised them to call the family doctor. From that moment on, things moved quickly. Emelie was referred to the Antonius Hospital, where the doctors immediately became very concerned. Her father says, ‘They suspected a brain tumor, and Emelie was admitted to the Princess Máxima Center right away. With sirens blaring, she was taken to Utrecht that same evening.’

Everything at once

That night, Emelie received a drain to reduce the pressure in her head, in the hope that her vision would return. Unfortunately, it didn’t. ‘I can now see only about two to three percent. It’s like looking through a narrow tube,’ Emelie explains. ‘Everything is blurry. I can see people standing, but I can’t recognize them. And if they’re not within that little tunnel, I can’t see them at all. Sadly, my vision won’t come back.’

Many tests followed. Emelie says, ‘I suddenly had to get my braces removed, otherwise they couldn’t make a good MRI. They’d only been on for two months!’ For Emelie and her parents, everything felt like a whirlwind. ‘We barely realized what was happening. Three weeks earlier we were still skiing, and suddenly we were at the Máxima Center – the hospital we always drove past on the highway. It felt so unreal.’

A yogurt at midnight

Thanks to the tests, the doctors soon learned more about the brain tumor. They planned an operation, but it was postponed for a few days. ‘I mostly remember how hungry I was! I had to fast for such a long time,’ says Emelie. In the middle of the night, after hearing the operation would be delayed, a nurse thankfully brought her a small yogurt. ‘I’ll never forget that moment.’

‘During surgery, they couldn’t remove the entire tumor; part of it was in a spot that was too risky,’ her father explains. ‘Thanks to medication, that small part remained stable for years. But shortly after this interview, we heard that the tumor had grown slightly again. So for now, Emelie can’t taper off her medication, unfortunately.’

A strong team

At home, everything changes – and yet, in some ways, it doesn’t. The four of them form a strong team. They focus mainly on what is still possible. ‘Emelie is the engine of our family,’ says her mother. ‘Her glass is always half full. We draw so much strength from her positivity. Of course, it can be tough at times – you want your child to have a carefree school life, for everything to come easily.’

Gradually, the focus shifts from ‘cancer’ to ‘living with low vision’. Through the Máxima Center, Emelie gets in touch with Royal Visio. She learns to walk with a white cane, read Braille, and use digital tools. She’s doing very well. ‘Despite everything, I haven’t fallen behind at school. I’m proud of that. I’m now in the fifth year of HAVO, spread over two years, so I have time for other things and to prepare for my studies. After this, I’d like to study Social Work.’

Courage and adventure

The family doesn’t shy away from adventure. ‘Last year, she even went skiing again,’ her father says proudly. ‘Emelie wears a bright vest that says “blind”, and I wear one that says “guide”. With earpieces, we communicate directions, so Emelie can follow us down the slopes. It’s wonderful to be able to do this together again.’ They’ve continued to push boundaries. This summer, they traveled to Sri Lanka. Her mother says, ‘We keep making beautiful trips. Emelie is discovering new ways of seeing – through scents, flavors, warmth. That’s just as meaningful.’

‘I feel independent again,’ says Emelie. ‘Free, in my own way. I even walk to school by myself with my cane! And I try to do as many things as other teenagers do – going to the gym, meeting up with friends. Of course, it’s not always easy. At a party I sometimes think: “Who’s where, who’s talking to me?” Others don’t always notice. But my friends do. They’re really there for me. Helping out for a moment, walking with me a bit – those are small gestures with a huge meaning.’

Care and relief

The family looks back on their time at the Máxima Center with warmth. ‘Taking the pressure off – that’s the right word for it,’ says Emelie’s mother. ‘Everything is organized around the child.’ Emelie agrees: ‘It’s such a nice hospital with so many kind people. Everything is explained to me at my level. No question is too much. So if I could give one piece of advice to other young people who become ill, it would be: ‘Keep asking questions.’ It’s so comforting to understand what’s happening.’

Her parents add, ‘And take things one step at a time. Let go of the future you had imagined. Each day, look at what is possible. That way, you’ll always find a new path – together.’