World Childhood Cancer DayEvery year about 600 children in the Netherlands are diagnosed with cancer. So is Milan, who is now six years old. When he was three months old, he was diagnosed with retinoblastoma. Parents Jan and Hanneke Burger argue for more awareness about this form of childhood cancer. Hanneke: “I had never heard of this form of cancer, while you can save an eye with that knowledge.”
Milan looked like a healthy baby after birth. But after five weeks, mother Hanneke noticed something strange. She saw a brown and white spot in Milan’s eye. When she tried to take a photo of it with a flash, the spot remained visible in the photo, while the other eye was red. “The GP thought it was cataract and referred us to the ophthalmologist.”
“We ended up in the Eye Hospital in Rotterdam. That’s where the ground fell from under us,” says father Jan. “Milan turned out to have eye cancer. And then also the rarest form. The tumors were in both eyes and one eye could not be saved.” Hanneke: “In the space of one week we went from a child with cataracts to a child with one eye.”
Within a week we went from a child with cataracts to a child with one eye
“The day of the first operation was very exciting,” says Jan. “Milan had been put under anesthetic once before with great reluctance, not knowing that we were going to experience this 64 more times. The operation went well, but Milan’s other eye still had tumors. Hanneke: “First, in the Netherlands, there were twelve tough months of various chemotherapy, laser treatments, cryo and intra-arterial chemotherapy.”
Because the treatments in the Netherlands ‘had run out’ after a year, Hanneke, Jan and Milan had to move to Germany. Jan: ,,For us as parents, apart from the treatment on a human level, there was also quite a challenge. The protocols are very different in Germany. For example, you are not allowed to take your child to the OR, you are not allowed to wait for your child in the recovery room and it is not unusual for a child to have to wait for hours sober before it is his turn for an anesthetic.”
Milan had been anesthetized once before, not knowing we were going to experience this 64 more times
ordinary toddler
After four intensive years of treatments and checkups, Milan finally beat the cancer. “He is doing very well,” says Jan. “Thanks to a recent cataract surgery, his vision is now about 30 percent. He is an ordinary toddler who will not be stopped from doing things that demand a lot from him in terms of sight.”
Milan himself also thinks that he functions very well with one eye. “I talked about my eye in class. We taped one of my classmates’ eyes and showed them what I see. They found it very difficult to make a puzzle with one eye.” However, Milan also regularly encounters challenges. Hanneke: ,,He regularly bumps himself because of a blind spot. And sometimes he comes home from school sad because he isn’t the fastest in the class. But he doesn’t give up. He’ll get there!”
More fame
Jan and Hanneke think it is important that there is more awareness for retinoblastoma. Hanneke: ,,If I had heard of retinoblastoma earlier, I would have gone to the doctor at five weeks instead of twelve weeks. Then Milan’s eye might have been treatable. Any parent who can save an eye of their child through our story is already one.” How Milan sees his future with one eye? “My mom says I can ride a bike very fast. So I want to become a cyclist in the future. Or… spy!”
Ten to twelve children in the Netherlands develop retinoblastoma every year. All these children end up in the expertise center for retinoblastoma of the Amsterdam UMC. Here ophthalmologist Machteld Bosscha treats children with this disease in a multidisciplinary team. Bosscha: ,, It is important to discover retinoblastoma at the earliest possible stage, because then the chance of eye-saving treatment is greater. But it is often the case that if you really see something in the pupil of a child, the eye is already very affected.”
According to Machteld Bosscha, it is difficult to detect retinoblastoma at an early stage and parents and caregivers cannot be blamed if they do not see it in time. “You just have to know about this disease and it is very rare. But do you see a white pupil or a strange haze in your child’s eye or does your child squint? Then it is always a good idea to visit an ophthalmologist. It could also indicate something else.”
For more information about Retinoblastoma, visit www.retinoblastoma.nl
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