‘He often said, “I’m the exception. I’m going to make it.” That mindset kept him going.’

‘Wouter never really had any problems. He enjoyed life, football, his friends, and family. Until the summer of 2020, when he started having back pain. No matter what we tried, nothing helped. After many tests, it turned out to be neuroblastoma’, says his mother Mirjam.

An exception

‘Children with neuroblastoma are often young, typically between 2 and 6 years old. Wouter, at 22, was an exception. He often said, ‘I’m the exception. I’m going to make it.’ That kept him going throughout the whole process. After a few rounds of chemotherapy, things seemed to improve. But when we found out he couldn’t be operated on because the tumor was near the portal vein, things took a downturn. The tumor had to be irradiated, and it made Wouter very sick. His immune system was too weak to start immunotherapy. This made me very anxious because the treatment had to continue to control the cancer. But during the next ultrasound, we learned that new metastases had appeared.

An uncertain time

‘Wouter is very ill. Have you considered the possibility that it might not go well?’ a familiar nurse asked during a conversation. At that moment, it was awful to hear. In hindsight, I’m glad she told me the truth. I think I needed to realize that there was another possible outcome because I kept hoping. After discussing it with Wouter, we decided to start immunotherapy combined with chemotherapy, hoping it would yield something.’

Getting the most out of life

By now, Wouter was twenty-three. He wanted to make the most of life and often asked, ‘Mom, they’re still going to do everything they can to help me, right?’ That was very confronting. I can’t describe how painful that was. The new treatment was incredibly hard on Wouter. It made him very sick. After two rounds of chemo-immunotherapy, they found a bowel obstruction, which made him vomit a lot. But the scans showed even more suspicious spots. What they were exactly was unclear. We had to wait until after the weekend for the results. Two very long days, during which the worst scenarios went through your mind.

‘Mom, I’m done’

That same evening, Wouter said, ‘Mom, I’m done. My body is done, but my spirit is still willing.’ We had always promised to be honest with each other, no matter how hard it was. I felt so powerless. After those two days, we received the definitive scan results: the doctors couldn’t do anything more for Wouter. From that moment on, the Children’s Comfort Team took over to guide us through the palliative phase. The team included trusted caregivers from the Máxima Center, which was comforting because we had built a strong bond with them during our time at the Máxima Center. The Children’s Comfort Team arranged for Wouter to go home, which he wanted so much. They also called frequently to check on us, which was very reassuring.

Letting go

Once at home, Wouter’s care was transferred from the Children’s Comfort Team to a home care team. The home care team was available 24/7, but they didn’t have experience with neuroblastoma. During the transfer, all possible scenarios were discussed. Very confronting. It’s called a ‘warm transfer,’ but I didn’t find it warm at all. Instead of face-to-face, it had to be via Zoom because we live far from the Máxima Center. A week later, we got a palliative care consultant from the home care team. He lived nearby and could be there quickly. When he was there, we needed only a few words. The contact with him felt as warm as with the Máxima Center team.

Children’s Comfort Team

A few weeks after the transfer, our nurse from the Children’s Comfort Team called to check on us. She did this regularly. ‘I want to let him go out of love, but I don’t know how. I can’t do it’, I said. ‘But Wouter will help you with that. And then you will be able to, out of love for him’, she replied. I then walked back into the living room and told Wouter, his little sister, and his father about the conversation I just had. ‘If you help me let you go, and you help me, I’ll do it out of love for you,, I said to Wouter. And he breathes – he breathes one more time and he passes away.

Back to the Máxima Center

Two days after Wouter’s passing, I went back to the Máxima Center. I wanted to see everyone for a moment. It still felt a bit like home. I heard the beeping in the hall and thought: that no longer matters. Wouter is no longer in pain. I arranged a post-care conversation with a few people, including the oncologist, nursing specialist, psychologist, social worker, and the nurse from the Children’s Comfort Team. It was very comforting. I returned to the Máxima Center a few more times. I built a really special bond with several people who knew Wouter. They instinctively knew what Wouter and I needed during the most vulnerable time in our lives. Many people, also from the Máxima Center, sent cards after Wouter’s passing. That was so special, and it really helped us.

For other parents

To other parents going through a similar journey, I would say: talk openly about everything with your child and the doctors. Try to enjoy everything that is still possible. And listen carefully to your child’s wishes. We were able to fulfill all of Wouter’s wishes because we talked about everything. He knew exactly what he wanted. Now, during the grieving process, I find this very helpful. I also took many photos and videos. In the beginning, they brought me comfort. Now, I find it hard to watch the videos again. I’ve learned that everyone grieves in their own way. So give everyone that space; it’s so important.’