The first signs
During a winter sports trip in 2022 with her parents and younger brother Mika, life still felt carefree. Emelie recalls: ‘I raced down one slope after another and didn’t fall once that whole week!’ But three weeks after the vacation, she suddenly biked straight into a pole. Her mother remembers: ‘That struck us as odd. Was she seeing less? She was also sitting very close to her laptop screen.’ Emelie adds: ‘And at night I had these terrible headaches, like someone was bouncing a tennis ball against my head.’
The optician found nothing unusual and advised contacting the general practitioner. From that moment on, everything moved quickly. Emelie was referred to Antonius Hospital, where the doctors immediately became very concerned. Her father explains: ‘They suspected a brain tumor, and Emelie was rushed that same evening by ambulance, with sirens blaring, to the Princess Máxima Center in Utrecht.’
A whirlwind
That first night, Emelie received a drain to relieve the pressure in her head, in the hope her sight would return. Sadly, it did not. ‘I can only see two to three percent now. It’s like looking through a narrow tube,’ Emelie says. ‘Everything is blurry. I can tell that people are standing in front of me, but I can’t recognize them. And if they’re outside that little tube, I don’t see them at all. My vision won’t come back.’
More tests followed. Emelie remembers vividly: ‘They suddenly had to remove my braces, because otherwise they couldn’t get a proper MRI. And they had only just been put in two months earlier!’ For the family, everything felt like a blur. ‘Three weeks earlier we were skiing,’ her mother says, ‘and suddenly we were in the Princess Máxima Center, the hospital we always used to drive past on the highway. It felt unreal.’
Danoontje
The tests soon gave the doctors a clearer picture of the tumor. Surgery was planned, but postponed for a few days. Emelie recalls: ‘I mostly remember how hungry I was! I had to fast for so long.’ In the middle of the night, after learning that the operation would be delayed, a nurse finally brought her a 'Danoontje' (Dutch yoghurt). ‘I’ll never forget that moment.’
‘During surgery, the tumor could not be fully removed; part of it was in too risky a location,’ her father explains. ‘Thanks to medication, that piece remained stable for years. But shortly after this interview, we heard that the tumor has grown slightly. That means Emelie can’t taper off her medication for now, unfortunately.’
A strong team
At home, everything has changed. And at the same time, not at all. As a family of four, they are a strong team, focusing above all on what is possible. Emelie’s mother says: ‘She is the engine of our family. Her glass is always half full. We draw so much strength from her positivity. Of course, it can be raw at times: you wish your child could have a carefree school life, where everything comes easily.’
Gradually, the focus shifted from ‘cancer’ to ‘living with little sight.’ Through the Princess Máxima Center, Emelie connected with Koninklijke Visio, an organization for the blind and visually impaired. She learned to walk with a white cane, read braille, and use digital tools. That’s going really well. 'Despite everything, I haven’t fallen behind at school. I’m proud of that. I’m now in HAVO-5, which I’m spreading over two years so I also have time for other things and to prepare for my studies. After that, I will probably 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 with blind on it, and I wear one with guide. With earpieces we give instructions so Emelie can follow us well on the slopes. It’s wonderful to be able to do this together again. This summer, they traveled to Sri Lanka. Her mother: ‘We keep making beautiful trips. Emelie discovers new ways of seeing. The smells, the tastes, the warmth. That is just as valuable.’
‘I feel independent again,’ Emelie says. ‘Free, in my own way. I even walk to and from school alone with my cane! And I try to do as much as other teens do: going to the gym, hanging out with friends. Of course it’s not always easy. At parties, for example, I wonder: 'Who is standing where, who is talking to me?' Others don’t always realize that. But my friends do. They’re really there for me. I love that so much. Just fixing something quickly, or walking with me. Small things that mean a lot.’
Warm feelings
The family looks back with warm feelings on their time at the Princess Máxima Center. ‘You don’t have to worry about anything’, says Emelie’s mother. ‘Everything is organized around the child.’ Emelie agrees: ‘It’s such a nice hospital, full of caring people. Everything is explained on my level. No question is ever too much. So if I could give one tip to other young people who become ill, it would be: Keep asking questions. It brings so much peace when you understand what’s happening.' Her parents add: ‘And live in small steps. Let go of the picture of the future you had. Each day, ask what is still possible. You will always find a new path, together.’ ❤️
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