‘In a time when so much is happening, you learn what really matters.’

Ilse shares her story: ‘For several days, Noud had been listless and not himself. That happens more often with a three-year-old, of course, but this time I could not quite put my finger on it. I decided to wait and see for a bit, and on Monday he went back to day care as usual. Everything seemed fine there, but that evening I noticed that his eyes were slightly crossed. The next day, he almost rode his bike straight into a wall, as if he could no longer judge distances properly. In the car, Noud suddenly vomited. That was when alarm bells really started ringing for me.

Deterioration

An initial conversation with the family doctor did not lead to much. It was probably the flu. But with the flu, you expect things to improve quickly, and Noud was doing the opposite. He would suddenly fall asleep at random moments, did not want anything, cried a lot, and complained of headaches. His vision got worse too, he even started tripping over his own toys. The family doctor still did not find it alarming. Meanwhile, I stood there with tears in my eyes because I felt something was wrong.

Over the weekend, Noud deteriorated even more. My husband Jeroen and I decided to call the out-of-hours family doctor service. We were asked to come in. The doctor there consulted a pediatrician in Zwolle, and they also had a bad feeling about it. We were referred to the hospital immediately. I will never forget the moment we were sitting in the waiting room and the doctors came toward us and said: ‘We are going to be honest: we suspect a tumor in the nasal cavity. Noud needs a CT scan.’ Silence. At a moment like that, there are no words to describe how you feel.

Running to the ward

The CT scan confirmed what we had been so afraid of. Suddenly, everything became urgent. They feared that the tumor was pressing so much on Noud’s eyes that he might lose his vision. We had to go to the Princess Máxima Center as quickly as possible. I got into the ambulance with Noud, and Jeroen drove behind us. I realized that from that moment on, our lives would be completely turned upside down. We ran through the corridors on our way to the right ward. Even before the final diagnosis, Noud received the first medications to slow down the tumor’s growth.

After the first exhausting days, we received clarity about the type of cancer: Noud has Burkitt lymphoma. In a way, it was a stroke of luck that it was close to his eyes. That is why his eyes became crossed and the symptoms were noticed relatively quickly. Still, you start wondering: could I have seen it earlier? Why did this happen? Should we have done more? The oncologist assured us that this was not possible. We were already there early.

Transformation

Two extremely difficult weeks followed, filled with tests. One doctor after another, everyone needed something from us, everyone needed something from Noud. During that period, I kept a diary of everything that happened, it runs to dozens of pages.

I remember clearly that Jeroen asked: will Noud become one of those bald children too? He did. Noud always had a beautiful, full head of hair, and as a former hairdresser I used to create the nicest hairstyles for him. The moment I had to shave all his hair off was very emotional. Coincidentally, he also received a feeding tube that day, which made the transformation into a visibly ill child happen incredibly fast.

Treatment plan

Noud’s treatment plan includes a six-month course with the most intensive chemotherapy for children with Burkitt lymphoma. Every three weeks, he is admitted for a treatment cycle. The chance of survival is high, but I do not dare to take anything for granted yet. In January, Noud will receive his fifth cycle, and after that the cancer should be significantly reduced. Only if those results are good will I dare to look further ahead. The coming weeks will be tense.

I have not yet explained what cancer exactly is to Noud. He is too young for that. He knows that he is ill, and he has accepted that. Over the past few weeks, Noud has also started to realize more and more that this means he is different from other children. Recently, he said: ‘Oh yes, my little sister goes to day care, and I go to the hospital.’ Fortunately, he always goes along cheerfully. He really likes it at the Máxima Center.

Support

In the meantime, we are trying to arrange everything as well as possible for Noud, his little sister, and for ourselves. We receive a lot of support from our parents, friends, and other family members. In a period like this, you learn who is really there for you. Jeroen’s employer is also very understanding and flexible, which is a relief. For me, it went differently: at work, immediately after I shared the bad news about Noud, I was told that my contract would not be renewed. That was very unpleasant, but for me it is secondary to what truly matters: that Noud gets better. Work can come later.

Focusing on the future

I was able to talk things through with the family doctor. Of course, I felt anger and frustration because we were sent home twice, but Noud’s illness is so rare. It makes sense that the doctor did not think of lymphoma. Now we mainly focus on the near future: the upcoming chemotherapy cycles and, hopefully, Noud’s recovery. It is an incredibly intense time. In and out of the hospital, good news, bad news. In a time when you go through so much, you learn what really matters. We enjoy things enormously that once seemed self-evident, for example when we are at home and Noud is sweetly playing with his little sister. Those moments are worth gold to me. And in the end, we will come out of this stronger. I am sure of that.’