Diagnosing the cancer in his retina was quite a challenge. After Elmer was born, the doctor at the well-baby clinic noticed that the retina in his eye was missing. But the family doctor said there was nothing wrong with him. Still, the well-baby clinic kept insisting. Eventually, they went to a local ophthalmologist who referred them to the Rotterdam Eye Hospital. The conclusion after countless tests: no retinoblastoma. Liesbeth remembers it well: “Around Elmer’s first birthday, his pupil suddenly turned white. Now we knew for sure that something was wrong. We had to go to the VUmc in Amsterdam. There, it quickly became clear that it was indeed retinoblastoma. Elmer underwent surgery right away. One of his eyes was removed, the other was treated with radiation, and he received chemotherapy. That eye eventually developed very well. He can see 100 to 120 percent with it.”
Treatment
In total, his intensive treatment regimen lasted about 9 months. They traveled from Zeeland to Amsterdam on Wednesdays. Elmer received treatment on Thursdays, and on Fridays they could return home. On those days, they stayed at the Ronald McDonald House. Whenever Elmer experienced side effects from the chemotherapy in between treatments, he could usually go to the hospital in Goes. The oncologist there was in close contact with the retinoblastoma team at VUmc. “The doctors in Amsterdam are truly top-notch,” Elmer and Liesbeth say in unison. “After Elmer’s eye was removed, we were referred to Frédérique Bak, who fitted him with a prosthetic eye. To this day, Elmer continues to visit Frédérique in Breda—to our complete satisfaction—for checkups on the prosthetic eye and to be fitted with a new one.”
To school
Once he started school, things didn’t go so well. “Elmer much preferred to be outside. He had little interest in letters and numbers. He had to repeat second grade, but after that, we didn’t want to let him struggle any longer—especially given his medical history,” says Liesbeth. Elmer went to a special education school. From there, he moved on to a vocational high school and then progressed to vocational education (MBO). “We’re very proud of how far Elmer has come—from special elementary education to passing the MBO 3 final exam as a certified gardener. We’ve always focused on what he needed.” Elmer agrees that this support has been invaluable. At school, but certainly also at home. For example, he had to know 40 plant names in Dutch and in Latin. Liesbeth turned that into a memory game. Liesbeth says, “His grades in plant knowledge shot right up with this memory game. It’s those little things. It helped him take another step forward. He’s turned out well and has built a solid foundation.”
Driver’s License
“I don’t really notice that I’ve had retinoblastoma,” says Elmer. “I’m very used to having only one eye.” That changes when he starts taking driving lessons. “While driving, I noticed that I had to look extra closely and turn my head faster and farther.” “And the CBR required a medical certificate, an additional visual field test, and an eye exam at the optometrist’s,” Liesbeth adds. “Who do you need to see for that, and what’s required?” It was quite a quest for the family. Elmer: “Then you suddenly think, ‘Oh yeah, I’m only seeing out of one eye.’” In the end, the whole ordeal—including all the additional costs—had to be repeated when he wanted to get his trailer license. That’s because those exams are only valid for 1.5 years. “That’s when we decided to go ahead and get the tractor license right after that. Now we’re all set,” Elmer and Liesbeth laugh.
Safety First
Elmer is currently training to be a landscaper. That means he works a lot with garden waste, which can sometimes cause splinters to fly off. “From a young age, I’ve been taught to always wear safety goggles. Sometimes my coworkers take it lightly. But I do it for my own safety. My family taught me to be extra careful with my good eye.”
Small steps
Elmer feels completely normal and is therefore hardly bothered by the illness he’s had. He was even a member of the youth fire department for years! Liesbeth says, “We sometimes hear that we’ve done a good job raising Elmer. That’s nice to hear. We’ve always been open about his illness and handled it as normally as possible. That’s the advice we want to share with other parents. Focus on your child and what he can do and needs. Make sure he gets the right support. You’ll get there one small step at a time.”
Box
Opkikker
When Elmer was four years old, he was invited by the Opkikker Foundation to an Opkikker Day. A program was put together with his parents that met Elmer’s wishes. That day, he was able to completely forget about his illness for a while. “Our whole family, including Grandpa and Grandma, got to come along, because Grandpa and Grandma had been such a huge support and help to us during his treatment.” After that, the family served as ambassadors for this charity for quite some time. “We collected old cell phones and empty bottles so that other children could also enjoy an Opkikkerdag. “One day, the mayor even stopped by my elementary school with 700 old cell phones from the city,” Elmer recalls with a laugh.
