Mirjam: 'Children with neuroblastoma are often young, mostly between 2 and 6 years old. Wouter, at 22 years old, was an exception. He often said, ‘I am the exception. I will make it.’ That kept him going throughout the whole process. After a few rounds of chemotherapy, things seemed to improve. But when we were told that surgery wasn't possible due to the tumor being near the portal vein, his condition deteriorated. The tumor had to be irradiated, which made Wouter very ill. His immune system was too weak to start immunotherapy. That made me very restless because treatment had to continue to control the cancer. However, the next ultrasound revealed new metastases.
An uncertain time
'Wouter is very sick. Do you ever consider that things might not go well?' came up in a conversation with a trusted nurse. It was devastating to hear at that moment. Looking back, I'm glad she told the truth. I think I needed it to realize that another scenario was also possible, because I always kept hoping.
In consultation with Wouter, we decided to proceed with immunotherapy combined with chemotherapy, hoping it would bring results. Wouter was now 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 it was.
The new treatment was incredibly tough for Wouter. It made him very ill. After two rounds of chemo-immunotherapy, it became clear that he had intestinal obstruction, causing him to vomit frequently. But the doctors also spotted more suspicious spots on the scan. What exactly, was unclear. We had to wait until after the weekend for an answer. Two very long days, during which the most terrible scenarios crossed your mind.
'Mom, I'm done'
That same evening, Wouter said, 'Mom, I'm done. My body doesn't want to any longer, but my spirit still wants to go on.' We always said that we would remain honest with each other, no matter how difficult it was. I felt so powerless. After those two days of waiting, we received the definitive scan results: the doctors couldn't do anything more for Wouter.
From that moment on, the Child Comfort Team set everything in motion to guide us through the palliative phase. This team included familiar caregivers from Máxima. That was very nice because we had built a bond of trust during our stay at the Máxima Center. The Child Comfort Team arranged for Wouter to come home, which he really wanted. They also called frequently to check how we were doing. That felt very comforting.
Letting go
Once at home, Wouter's care was transferred from the Child Comfort Team to a home care team. The home care team was available 24 hours a day. However, they had no knowledge about neuroblastoma. During the handover, all possible scenarios were discussed. Very confronting. It's called a 'warm handover,' but I didn't find anything warm about it, to be honest. Instead of face-to-face, it had to be done via Zoom because we lived far from the Máxima Center.
After a week, we received a palliative consultant from home care. He lived nearby and could be on-site quickly. When he arrived, a few words were enough. The contact felt just as warm as the contact with the Máxima Center.
A few weeks after the handover, our nurse from the Child Comfort Team called to ask how things were going. She did that regularly. 'I do want to let go of him out of love, I just don't know how. I can't do that at all,' I said. 'But Wouter is going to help you with that. And then you'll be able to do it, out of love for him,' she replied.
After this, I walked back into Wouter's room and told him, his sister, and father about the conversation I had just had. 'If you help me to let you go, and you're going to help me, then 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 really wanted to see everyone for a moment. It still felt a bit like home. I heard the beeps in the hallway and thought: they're no longer necessary. Wouter is no longer in pain. I had arranged meetings with a few people for a follow-up conversation, including the treating oncologist, nurse specialist, psychologist, social worker, and the nurse from the Child Comfort Team. It was very comforting.
I went back to the Máxima Center a few more times. I had developed a special bond with some people who knew Wouter. They understood exactly what Wouter and I needed during the most vulnerable time of our lives.
Many people, including those from the Máxima Center, sent cards after Wouter's passing. That was also very special, and it really comforted us.
For other parents
To other parents in such a journey, I want to say: Discuss everything with your child and the caregivers. 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 had discussed everything thoroughly. He knew in detail what he wanted. Now, during the process of healing, I find comfort in that.
I also took many photos and videos. At first, it brought me solace. Now, I find it difficult to watch the videos. I've learned that everyone mourns in their own way. So, give everyone that space; it's so important.’