Jeroen’s son Kasper (4) is terminally ill: ‘These are really peaks and valleys’

“Kasper is a very cheerful man. Every day with him is special, every day is fantastic. Everything that might have been normal for me before is now just very beautiful. Kasper playing in the sandbox, Kasper eating nice food, Kasper with his beautiful red curls.” When Jeroen says that, a big smile appears on his face, he is so proud. “I like to see him happy. Those are the best moments for me: when Kasper is happy. Then I will be happy too.”

Wrong thing

He will never forget the morning that Jeroen noticed that something was wrong with his son. “My wife and I knew right away that something was wrong. Kasper was just a year old and he had been ailing for a while. But when his eye was closed that morning, I knew right away that something was wrong. His eye looked paralyzed.” That same day he was sent to the hospital. For the next three months, he was there more than half the time. Operations, recovery from operations, the first chemo, blood tests: Kasper had to undergo everything. “Kasper was found to have the most severe grade of cancer after surgery. That was a huge setback. The chance that he will get better for a longer period of time is less than 1 percent. But that very small chance, we went for it. That was also our support. Because the fact that through luck and perseverance he kept getting back up and getting older, means that he is taking that chance.”

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Jeroen with son Kasper

Live with the day

If there’s one thing Jeroen has learned from this situation, it’s that you have to live with the day. “You never know what will happen in the future. My wife Charlotte (36) and I went for it from the very first moment. We are a very strong team in that regard. We made sure that we experienced each day together in the best possible way. We looked at a form that also works for a child. For example, we made very large posters with fifty squares on them. They stand for fifty days. Then we can all put down something nice with a day, we call that small happiness. For example, going to the playground or playing with a friend. So there is something the children can enjoy almost every day.” They also always end the day together with the question: what was the best thing you did today? This ensures that they always focus on the now and look at what they are grateful for. “That works amazingly well. Also for Charlotte and me. Because we are also participating and that is how we keep our happiness in mind.”

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“Kasper is terribly ill, but he is one of the exceptions who was allowed to live to be four years old. He does not realize that he is so ill. He does realize that people are looking at him and that something is going on. But he doesn’t quite know what it is. He also doesn’t understand what awaits him. That is sometimes difficult. He is able to quickly dismiss the less pleasant things, precisely because he is a child. He once told the entire hospital that he had had surgery and that he liked it so much. He actually makes a party of it himself, which is very nice to see.”

When Jeroen thinks about the day he heard that Kasper was treated, you see the emotions come up in him. He falls silent for a moment. “That was the hardest moment of my life,” he says. Now that Kasper has been treated, the days are very changeable. Sometimes he is in bad shape for a few days and Jeroen and Charlotte are afraid that it is almost ready for him. But then Kasper scrambles up again and is good again for a while. “There are really peaks and troughs. It’s just unpredictable. If you had spoken to me two weeks ago, I would have expected that he would not be here by now. But he clearly still enjoys it. We cry and we laugh, we feel sadness and we feel happiness. It’s a big jumble of emotions. But we focus on the beautiful things.”

Happiness and amazement

“I was able to put all those emotions that I felt in my book. It was a really nice way to clear my head. There are times when I was in tears writing the book. It’s a heavy story, but there’s so much happiness and wonder in it. And I think everyone can benefit from this. Everyone has their own grief, big or small. I hope that reading this book will give you a huge boost of happiness. I hope that Kasper makes everyone happy and inspires in his book.”

The book is written about Kasper in the words of Jeroen. But how does his wife handle the whole situation? “Charlotte is a blood fanatic, in a dear way. She is truly invaluable. She is there 24/7, she takes care of everything. If she has a breakdown, it doesn’t matter. Then she scrambles up again after half a day. They said at the beginning: you grow together or you grow apart. You don’t have much influence over that. But we just grew together. I will never leave her again. I must be crazy.”

The book ‘Kasper – Roller coaster on loose screws’ is now available in the (online) bookstore. Publisher Splint Media. € 20.99.

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