Perseverance
My oldest son, Dani, has the hereditary form of retinoblastoma. We discovered this ourselves when he was eight months old and his eye would occasionally turn slightly outward. Nothing had ever been noticed at the well-baby clinic, and even the family doctor just shrugged it off. Still, something inside me told me we had to keep pushing. I wanted to know what was wrong with that eye. Then we were referred to the hospital in Amersfoort. Because it’s such a rare condition, a completely different diagnosis was made in Amersfoort, and we were referred to Utrecht. After a long morning of tests and waiting, the diagnosis came: retinoblastoma (retinal cancer) in both eyes. Phew. That’s when your world comes crashing down.
Looking back now, we ourselves—in our twenties at the time—were still just kids. Yet you’re expected to grow up overnight. Less than a week later, Dani’s right eye was removed; it was too damaged to be saved. For his left eye, they tried administering chemotherapy intra-arterially twice, but it didn’t work. After that, we were referred to the hospital in Essen (Germany), where we stayed as a family for an extended period for 25 radiation treatments. It was an intense treatment, but it achieved the desired result.
A lot of help and support
We’ve found that it’s quite a lonely struggle, despite the enormous outpouring of help and support. Retinoblastoma—and the entire treatment process—is still virtually unknown. That’s why we joined the Retinoblastoma Association fairly early on. It was—and still is—a truly invaluable resource for us. Especially the patient day, when we were still in the middle of treatments. But even now that we’ve returned to our normal lives, it really feels like coming home.
At the hospital in Germany, things were still pretty old-fashioned, and they really scared us about the future for a child with retinoblastoma—like being bullied. But nothing could have been further from the truth. Dani is incredibly open about his artificial eye, isn’t ashamed of anything, loves soccer and is an amazing goalkeeper, enjoys biking and swimming, and has lots of friends.
Trust
We also always made a special occasion out of our visits to the VUmc. After all those times under anesthesia, we’d always stop by the hospital restaurant for a meal, and he was often allowed to pick out a little gift. Regular visits to Kinderstad and the amazing members of the retinoblastoma team have made sure that we always look forward to follow-up appointments. And although you can never be completely carefree again—and there’s always that lingering fear of secondary tumors—those wonderful experiences give us a lot of confidence for the future.
As I said, I’ll never be completely carefree again, but we actually lead a very normal and happy life. Dani has a prosthetic eye, and his vision in the other eye isn’t perfect either, but it doesn’t hold him back in any way. He can do everything his peers can do.
He does fall and bump into things a bit more often, though. Sometimes that makes him sad, too. “I’d love to know what it’s like to be able to see with both eyes.” As parents, that can sometimes take us by surprise and make us sad, because of course we want that for him. But if we look at it realistically, he really isn’t missing out on anything, and he’s just like any other child—only a little bit extra special because of the beautiful way he deals with his “disability.”
My Tips
For families just starting out, I have the following tips:
- Focus on your little one and your family. Don’t worry about what society says you’re supposed to do—just choose what’s best for you. For example, I started a blog* so I wouldn’t have to repeat the same story a hundred times. That gave us some peace of mind.
- Stay in control. For example, one day we walked out of the hospital because Dani had been waiting too long for surgery without having eaten or drunk anything.
- Stick to your regular routine and structure. For example, we weren’t allowed to sleep together with Dani at the hospital. So we always called each other in the evening, and the parent who didn’t stay overnight would make a nice cup of coffee in the morning and bring it to the hospital in a thermos.
- Keep looking for little moments of happiness. A new bead on the “Kanjer” necklace, a card, that first smile after the eye patch was removed, a nice cup of coffee: those are the things that keep you going.
- And finally: Always trust your mother’s and father’s instincts*Editor’s note: This blog no longer exists.
