The concerns about the girl turned out to be justified: retinal cancer in both eyes. She was only five weeks old at the time. The right eye was already so severely affected that it had to be removed immediately. After that, both eyes underwent radiation therapy. At that time, they didn’t yet administer chemotherapy to babies. Maartje explains: “My parents slept in the attic at my mother’s sister’s husband’s house in Utrecht, because there weren’t any facilities like the Ronald McDonald House yet.” After the radiation treatment, Maartje was declared cancer-free. She can see well with her remaining eye.
“The Bliss of Ignorance”
When Maartje and her husband decided they wanted to have a child, they decided to go to the hospital to explore their options. After all, Maartje knew she had a family history of the disease and that there was a 50 percent chance she would pass retinoblastoma on to her future children. Maartje: “It turned out there were all kinds of possibilities. You can find out all sorts of things in advance or even prevent your child from developing retinoblastoma. In the end, we opted for—as they so beautifully put it in England—the ‘bliss of ignorance.’ We’d just have to see when the time came. On the one hand, because of all the risks associated with prenatal testing. On the other hand, because you still have no certainty about the severity of the situation. In any case, retinoblastoma would not be a reason for us to terminate a pregnancy.” When Maartje found out she was pregnant, she was advised to give birth at 38 weeks so the baby could be examined early. Her daughter Roosmarijn (now 12 years old) was born, and exactly one week after the birth, they were at the VUmc. During that examination, they received bad news. Maartje looks back on that period: “I hadn’t sensed this at all. I remember thinking, ‘Shit, this is worse than I expected.’ My parents—who were still in the waiting room—were called in, and when I saw my father, I broke down.” Chemotherapy began just a few days later. In total, Roosmarijn’s treatment lasted one year and two months. She underwent chemotherapy; both eyes were treated with laser surgery and cryotherapy; she received 25 radiation treatments at the hospital in Essen, Germany; and she wore a radioactive shield for 24 hours. She was able to save both eyes. Roosmarijn can see well with her left eye; with her right, she can only perceive light.
Humor and Optimism
“What has helped me is humor and a level-headed attitude. My father used to say, ‘Come here, I’ll clean your eye so you can see through it again.’ “My mom still sometimes puts a glass of something to drink in front of me on the right. Often I don’t see it and knock it over. Jokingly, I’ll say, ‘Don’t attack from the right, okay?’ Because of all the hospital visits and the fact that we always had to be flexible, we now make new friends easily. We quickly feel at home wherever we go. We’ve been able to turn my illness and Roosmarijn’s into resilience. I think that’s the most beautiful quality you can take away from a situation like this.” “I’ve never been bullied. But people do stare. When I was younger and walking through the supermarket with my dad, there was a man who kept walking two aisles behind us just to look at me. We ended up doing the same thing back at him, just for fun. I used to always think, ‘You can ask me anything and get an honest answer.’ These days, I feel that people don’t need to know everything. I was relieved that Roosmarijn doesn’t have those deep-set eyes like I do. She’s incredibly smart and a joy to look at, and she often gets compliments on her long eyelashes. There was a time when she suddenly started getting bullied because her mother looked different. That really puts you in your place. Fortunately, she handles it well.” Maartje ends with a beautiful message: “I believe that what you put into life is what you get back. So it’s better to put out a lot of positivity. That’s what we teach our daughter, too: You don’t have to change yourself to make someone else happy. Just be yourself.”
