Pieter: 'Poor sleep, eating less, and often having stomach pain: with those symptoms, we first visited the family doctor in the fall of 2021. We didn't immediately think it was anything serious; Nomi had just started elementary school, and that change could have been intense for her.'
Yvon: 'Only weeks later did we see a pediatrician because Nomi's symptoms worsened. Things escalated quickly: a tumor was spotted in her abdomen, and we were referred to the Princess Máxima Center. There we received the diagnosis: stage 4 high-risk neuroblastoma with metastases. We had to stay for six weeks immediately.'
Uncertainty
Yvon: 'There was a lot of uncertainty about Nomi's prognosis. Neuroblastoma is unpredictable, and there's also a significant chance of recurrence. Nomi even had two genetic mutations in her tumor cells, adding more uncertainty. So much bad news came in those first few weeks... We were numb, in disbelief. How do you even process all that?'
Pieter: 'Yet, during the first year, it seemed to be going well. The chemotherapy was effective; the tumor shrank, and Nomi felt relatively good. Gradually, she became herself again.'
Yvon: 'One day I saw her laughing with her younger sister, Elin, again. She was making funny sounds at her. It brought tears to my eyes, such a beautiful moment. Before Nomi got sick, they laughed together every day, but as she felt worse, that stopped. There were also very sad moments, like when Nomi had to cut her long hair off. So tough for a five-year-old. She held herself together, but noticed she was 'different' then.'
Bad news
Pieter: 'In September 2022, we received bad news. On an MRI scan, the doctors saw that the tumor was growing. A combination of immuno- and chemotherapy was the next step. It didn't help: in December, the tumor had grown again. Now there was no standard protocol, no set plan for the doctors to follow. We faced an extremely uncertain time.'
Yvon: 'With surgery, the doctors tried to remove as much as possible from Nomi's abdomen. After that, another scan followed. We'll never forget that day. The oncologist approached, the children were taken care of for us, and by then we pretty much knew which way it was going. The tumor had grown by 5 centimeters.'
Making memories
Pieter: 'There was still a very small chance of survival. A few percent. We wanted to fight for it, what else could we do? So we went through ten more radiation sessions. But in March, we learned that more metastases were found. From that point on, virtually nothing else was possible: further treatments or studies would only make her sicker. We chose quality of life as long as it was possible, so that we could make beautiful memories. This is how we got in touch with the Children's Comfort Team at the Princess Máxima Center. They helped us fulfill as many of our wishes as possible. We are very grateful for that.'
Yvon: 'For example, we really wanted to go to Disneyland and to the Efteling. That was a significant logistical effort with all the medication, but thanks to the help, we managed. We also threw a big party in April, with everyone dear to Nomi. It was tough to organize everything in a short time, but we're glad we did it. Those are cherished memories.'
Yvon: 'After that, things declined rapidly. Nomi was completely exhausted. In the last week, a few dear friends and family members came to visit: then she had a little burst of energy and so we had a few more beautiful moments. On May 8, Nomi passed away peacefully, with both of us by her side. It was very sad, but also comforting that we were together at that moment.
Just like grandma
Yvon: 'We never directly talked about death with Nomi, but she knew it was coming. In those last months, she started asking questions like, 'Am I not dying yet? Will it take a long time? Then I'll go underground, right, just like grandma?' We got help from a child psychologist at the Máxima to answer all those questions. The conversation was difficult, yet I believe it was necessary for her to have clarity. We then explained that we would always love her, even if she wasn't with us anymore. After that, she didn't ask anymore.'
Pieter: 'The day before Nomi's funeral, we set her little coffin in the living room behind the glass sliding door, very subtly, with a mosquito net over it and surrounded by her favorite items. We proudly showed who she was. That day, hundreds of people came to say goodbye. Everyone brought a candle; in the evening, the garden was filled with over 500 candles. At the funeral, Nomi was driven away in a pink hearse, just as she would have liked.'
Grieving
Yvon: 'Of course, we are still in the middle of our grieving process. It's not a straight line, as people sometimes think. There are better and worse moments, each finding our way through it.'
Pieter: 'For me, it's a bit different than for Yvon. And that's okay. For instance, I went to the carnival in the village last February. I didn't spend every evening jumping around, but I did have a beer. For Yvon, it was still a bit too soon, but she has recently started working again.'
Yvon: 'I couldn't have imagined that a few months ago. Working, how? Yet, eventually, there's also a need to start participating in ordinary life again. Our world has been so small for so long.'
Pieter: 'Nomi has also taught us a lot about resilience and positivity. Living in the moment, doing what can be done at that moment. Even in the very last phase of her life, she would sit down to draw whenever she felt a bit better. That resilience is also in us, I know now.'
Big sister
Yvon: 'Nomi still has her place in our family. We keep the memories of her alive, for instance, by regularly flipping through photo albums with Elin. We talk about her every day. Not just the sad things, but especially about all the beautiful moments we shared together. We ask that of people around us too: don't avoid the subject of Nomi; it's okay to talk about her. She is still with us.'
Pieter: 'We also visit the nature cemetery where Nomi is buried, then we walk around there with Elin. 'Nomi is with the flowers,' she says then. That's how she remembers her big sister. Because even though she's not physically here, Nomi will always be the big sister.'