A man in the elevator

Juul: ‘Not long ago, we went to pick up Hermen’s Flower bead. We were in such a happy, celebratory mood when we stepped into the elevator with another man. Hermen had brought gifts for everyone and asked him, “Do you have a child at the Máxima Center too?” The man said, “Yes, I have a son.” So Hermen gave him a gift as well. He said, “I hope your son gets to ring the bell one day too.” As the man stepped out of the elevator, he replied, “He already has.”

At that moment, the elevator doors opened. There stood his son. Bald and sick.

That made a huge impression on me. I think that fear never completely goes away. If my daughter Saar doesn’t feel well, I think, “It’s probably just the flu.” But if something is wrong with Hermen, my mind immediately jumps to: What if it’s back? I think it will take time before that feeling fades.’

Leukemia

‘In 2024, Hermen was sick all the time. It started with a throat and ear infection. After a course of antibiotics, he felt a little better, but before long he became ill again. So we went back to our family doctor. Because it was the May vacation, we saw a different doctor. She thought he looked unusually pale and sent us for blood tests.

That same afternoon, the family doctor called us back. The test results didn’t look good and we had to come in right away. I said, “I think you’re telling me he has leukemia.” She confirmed it.

I packed our things and drove Hermen to Isala Hospital in Zwolle. As I got onto the highway, it hit me: we were about to face a very difficult time. Even so, we stopped at a gas station to have an ice cream together. Just one more moment to enjoy. On the way, I only told Hermen that his blood was sick and that we needed to go to the hospital. He didn’t know he had leukemia yet.’

In the ambulance

‘When the family doctor called, I was at the neighbors’ house. It felt as though the ground disappeared beneath my feet. There’s only one thing you think: we’re going to lose our child. I panicked and had to sit down for a moment.

The first person I called was my husband, Tom. He immediately drove home to pick up our daughter, Saar, and I took her to the neighbors. Later, on the way home, I realized that panicking wouldn’t help. That gave me a certain sense of calm because I didn’t want Hermen or Saar to panic.

From there, everything happened very quickly. That same evening, Hermen received a blood transfusion at the hospital. We were taken such good care of.

The next day, we were taken by ambulance to Utrecht. That may have been the hardest moment of all. There was a severe storm. Traffic was at a standstill, and we sped down the shoulder with the sirens on. I remember thinking: this may be even worse than we realize.

Soon after, Hermen asked, “Am I going to die?” I had to stay strong and told him, “I don’t think so. They have really good medicines.”

When we arrived at the Princess Máxima Center, the porter was already waiting to take our bag. That immediately felt so welcoming. At that moment, you think you’re about to lose your child. In the parent and child room, the doctors reassured us. They took plenty of time to explain what was going to happen and talked about the chances as well. Those words meant so much to us. By the end of the day, I felt different. I thought: we’re going to do this.’

The Máxima Center

‘The care at the Máxima Center is beyond wonderful, if you ask me. Once you experience it yourself, you understand why this care needs to be brought together in one place, even if it means being far from home.

I also loved that the conversations always started with Hermen. Only once everything was clear to him would they ask, “Do you have any questions as parents?” That’s how you know the child truly comes first.

Hermen went through about six months of intensive treatment. Every other day, we traveled to the Máxima Center for chemotherapy. For one month, he was so incredibly sick that he threw up everything he ate. On other days he managed to keep food down, but he was still terribly nauseous.

From the very beginning, Hermen found the tubes in children’s noses upsetting. That’s why he absolutely did not want tube feeding. It meant that, no matter how sick he felt, he had to keep trying to eat something. Together we would look in the refrigerator to see what he might be able to manage, even if it was only a small piece of apple. Reluctantly, but with incredible determination, he ate tiny amounts throughout the day. He lost a lot of weight, but he made it through treatment without tube feeding.

Sometimes we stayed at Isala Hospital in Zwolle. The care there was excellent too, but it felt different. Because of the risk of infection, Hermen wasn’t allowed to leave his room, while at the Máxima Center he had much more freedom to walk around.’

Four Days Marches

‘During the first month after his diagnosis, Saar was taking part in the Four Days Marches. Hermen said he wanted to join too, even though he could barely walk at that point. We arranged a wheelchair and decided to go anyway. We figured that if it didn’t work out, we could always go home. No one knew we were coming.

It was the first time in a long while that Hermen saw his classmates again, and they saw him. Because of the dexamethasone, his appearance had changed dramatically. When we arrived, his classmates stood around him for at least five minutes. They looked at each other without saying much. It was incredibly emotional, but also beautiful.

As soon as we started walking, it was as if we had our old Hermen back. At first, a few children walked beside him. Later, they all wanted a turn pushing his wheelchair. For a little while, his illness no longer seemed to matter. It showed so beautifully how children are.’

Staying positive

‘I truly believe it helps to stay positive. During treatment, Hermen had a countdown calendar for his chemotherapy. Every day he got to put on another sticker. We kept telling him, “Hang in there. It’s going to be okay.” We still try to pass that positive outlook on to our children. Complaining doesn’t change anything or move you forward, no matter how hard life can be. That doesn’t mean there’s no room for sadness or fear, but we try to focus on what is still possible.

And then the day finally came. Hermen got to ring the bell. More than anything, I feel an overwhelming sense of gratitude for everyone at the Máxima Center who was there for us. From the people who brought us meals to the housekeeping staff, nurses, and doctors. Every single person made a difference in their own way.

I hope our story can give other parents hope too. Don’t give up.’

Getting around in the Máxima Center