Survivor story: Froukje

Froukje (15) was two years old when she was diagnosed with leukemia. Although that was a long time ago, she is noticing the effects of her illness most clearly now. She does not always feel understood. ‘Sometimes I miss contact with someone who really gets me,’ Froukje says. Together with her mother, she shares her story.

Froukje: ‘When I see a video of someone who is ill, I get a strange feeling in my throat. I had tube feeding for two years, maybe that feeling comes back because of that. I also have some difficulties at school. I get distracted easily and I am a bit slower in things like physical education. Sometimes I also find it hard to remember several tasks at the same time.

I am in the third year now. I notice that it is hard for me to connect with other girls. Friends from earlier are now spending more time with others. I may have been through a lot, but I am also just normal. Sometimes I miss contact with someone who understands me.’

The diagnosis: acute lymphoblastic leukemia

Mother Erica: ‘My mother’s instinct told me something serious was going on. Froukje was almost two years old and was normally always cheerful and happy. Suddenly she cried a lot, looked pale, and did not want to walk anymore. I took her to the general practitioner for blood tests.

A few days later, the general practitioner called with worrying results. We were referred to the hospital for further tests. That is where we received the diagnosis. It turned out to be ALL, acute lymphoblastic leukemia. The ground dropped away beneath my feet. That same evening, we went to Radboud University Medical Center in Nijmegen and the treatment process started. In the end, it lasted two years.

During treatment, Froukje had many setbacks and a lot of bad luck. She developed infections, brittle bones, and more. She was very seriously ill. Because of the chemotherapy and all the medication, she became so weak that walking became increasingly difficult. Eventually she ended up in a wheelchair and had to relearn how to walk from scratch. When she turned four, the treatments were almost finished. She then went to school for half days, in a wheelchair, and still had tube feeding.’

The LATER clinic

Froukje: ‘I do not know any children who have been through this as well. Except for Sterre, whom I follow on Instagram. She was also ill, but she had something other than leukemia. I already followed the Princess Máxima Center on Instagram and we had heard about it before. I really wanted to go there too, because it is truly focused on children.’

Mother Erica: ‘Since May 2022, we have been visiting the LATER clinic at the Máxima Center. During a test, the doctors discovered that Froukje is missing part of her visual field in her right eye. And that was not all. The doctors also told us that Froukje has acquired brain injury. Because of this, she has short-term memory problems, concentration difficulties, and she is easily distracted. In short, two new discoveries for us.’

Rehabilitation program

Mother Erica: ‘A rehabilitation program has now started. As part of that, she has seen an occupational therapist. They look at how difficult activities can be made easier for Froukje. She now also goes to physical therapy once a week to strengthen her muscles. That way, she can participate better in sports at school again. That feels very good. It would be even better, though, if Froukje could also talk sometimes with someone who truly understands her.’

Froukje: ‘I would really like to have contact with other children who have been ill. Sometimes I try to explain to classmates how I feel, but they do not understand the pain. They do not understand the story. I find that difficult. I often think: I wish I had someone who really gets it.’

Do you recognize yourself in Froukje’s story? Let us know by emailing communicatie@prinsesmaximacentrum.nl, and we will help put you in touch with each other.