‘She is happy and living life the way a nine-year-old girl should.’
Five years later
‘It’s been five years since the diagnosis, and Fiene is doing really well. She’s happy, cheerful, and living life the way a nine-year-old girl should. During her treatment at the Princess Máxima Center, we were very open and active: we kept a blog, posted a lot on social media, and raised awareness for various charities. After treatment, I worked together with volunteers and sponsors to make custom backpacks for the immunotherapy pump, until the pharmaceutical company took over. Even though Fiene had received her flower bead, the topic of childhood cancer, or the Máxima Center, never felt far away.
Creating distance from the past
Over time, you notice that you gain more distance from it, both consciously and unconsciously. For Marije, that happened earlier than for me. Fiene is no longer ‘the girl who had cancer.’ Her future lies ahead of her, and the past has found its place. It’s no longer right at the surface for us. We don’t talk about it that much anymore. Not with each other, not with family or friends. And I think that’s just fine.
Scars and long-term effects
What we do talk about are the scars she has and the possible long-term effects. We discuss the large, visible scar on her abdomen from surgery, and the fact that she sometimes gets tired a little more quickly than other kids. She listens and just shrugs it off. The possible impact of chemotherapy on her future fertility is a conversation we’re saving for later. Everything in its own time.
Traveling as a family
We’re living in the moment. Right now, we’re in Sri Lanka and soon we’ll continue on to Malaysia. We’re spending the next six months traveling through Southeast Asia, something we’ve dreamed of for a long time, and the desire only grew stronger over the past few years. We wanted to explore the world and have adventures together. We have two big backpacks, and the kids each carry a smaller one for their toys and schoolwork. We climb rocks, hike through the jungle, and swim with sea turtles. This morning, the kids were doing their schoolwork while a family of monkeys was sitting just a few yards away in the trees.
Looking forward with hope
I hesitated about whether to write this blog. Five years ago, there wasn’t even a millimeter of space to dream about a trip like this. For many people reading this, that space may not be there yet, and our story might feel far removed from their reality. But I decided to share it anyway, because I hope our positive story shows that there really is life after recovery. The rollercoaster, as the treatment journey is often described , eventually comes to a stop. For us, it also took time, but little by little, the space to dream returned. And now, here we are: we’re doing it.’
Also read:
- ‘Even though it didn’t feel that way at the time, it seems as if everything happened for a reason.’Rachel has been cancer-free herself for 14 years and now produces specialized cell and gene therapies for children with cancer at the Princess Máxima Center. ‘The first few times I walked into the Máxima Center I felt overwhelmed. Many memories came back. At the same time, it was very comforting to see children having fun.’
- ‘I’ve rediscovered my identity and learned what I’m still capable of.’Cherine (35) was 10 years old when she was diagnosed with bone cancer. She had to choose between several intensive treatments: a year of chemotherapy in the United States in the hope of saving her leg, amputation, rotationplasty, or removal of her knee and thigh muscles. She chose the latter. Now she visits the LATER outpatient clinic at the Máxima and works there as well.
- ‘I want to show fellow patients that, after childhood cancer, there is still a whole world full of adventures at your feet.’Marleen was sixteen when Hodgkin lymphoma turned her life upside down. After an intensive treatment process, she completed her therapy. Although she still experiences late effects of the disease, Marleen doesn’t let anything stop her from chasing her dreams.