Ilse: ‘Noud had been lethargic and not himself for several days. It's common for a three-year-old to be like that sometimes, but this time I couldn't put my finger on it. I waited and on Monday, he went to daycare as usual. Nothing seemed wrong there, but that evening I noticed his eyes were slightly cross-eyed. The next day, he almost cycled into a wall, as if he couldn't judge distances correctly. In the car, Noud suddenly started vomiting. That's when alarm bells started ringing for me.
Deterioration
The initial visit to the family doctor didn't yield much. It was probably just the flu. But with the flu, you expect improvement; Noud was getting worse. He would randomly fall asleep, refuse to do anything, cry a lot, complain about headaches... His vision got worse; now he was tripping over his own toys. The doctor still wasn't concerned. Meanwhile, I was standing there with tears in my eyes because I felt something was wrong.
Over the weekend, Noud's condition worsened. My husband Jeroen and I decided to call the after-hours doctor. We were allowed to come in. The doctor there consulted with a pediatrician in Zwolle, and even they had a bad feeling about it. We were immediately referred to the hospital. I'll never forget the moment we sat in the waiting room, and the doctors came to us: 'We'll be honest; we suspect a tumor in the nasal cavity. Noud needs a CT scan.' Silence. At such a moment, there are no words to describe your feelings.
Rush
The CT scan confirmed our fears. Suddenly, there was urgency. They feared the tumor was pressing so much on Noud's eyes that he might lose his sight. We had to get to the Princess Máxima Center as soon as possible. I boarded the ambulance with Noud, Jeroen followed behind. I realized that our life would be completely upside down from now on. We ran through the halls to the right department. Even before the final diagnosis, Noud received the first medications to slow down the tumor's growth.
After the first exhausting days, we got confirmation about the type of cancer: Noud has Burkitt lymphoma. It was a stroke of luck that it was near his eyes, which caused them to cross, making it relatively quickly noticeable. Still, you start to wonder: could I have seen it earlier? Why is this happening? Should we have done more? The oncologist assured us that it wasn't possible. We were early.
Transformation
Two grueling weeks followed, filled with examinations. One doctor after another, everyone needed something from us, everyone needed something from Noud. I kept a diary during that period detailing everything that happened – it spans dozens of pages.
I remember well when Jeroen asked: will Noud also become a bald kid? And he did. Noud always had a beautiful full head of hair, and as a former hairdresser, I used to create the most beautiful styles with it. The moment I had to shave everything off was very emotional. That day, he also happened to get a feeding tube, accelerating the transformation into a visibly sick child.
Treatment Plan
Noud's treatment plan involves a six-month journey with the most intensive chemotherapy for children with Burkitt lymphoma. Every three weeks, he's admitted for a round of treatment. The chance of survival is high, but I'm not assuming anything yet. In January, Noud will undergo the fifth round, and by then, the cancer should have receded significantly. If that result is good, I'll dare to look further ahead. It will be suspenseful weeks.
I haven't explained to Noud what cancer exactly is; he's too young for that. He knows he's sick, and he has accepted it. In the past few weeks, Noud has increasingly realized that it means he's different from other children. He recently said, 'My little sister goes to daycare, and I go to the hospital.' Fortunately, he always accompanies us cheerfully; he really enjoys being at the Máxima Center.
Meanwhile, we try to organize everything as well as possible for Noud, his little sister, and ourselves. We have a lot of support from our parents, friends, and other family members. In such a period, you learn who is truly there for you. Jeroen's employer is fortunately considerate and flexible. In my case, it was different: I was told at work, right after I shared the bad news about Noud, that my contract would not be extended. Unpleasant, but for me, it's secondary to what really matters: Noud getting better. Work can wait.
Focusing on the Future I've had the chance to talk it out with the family doctor. Of course, there was anger and frustration in me because we were sent home twice, but Noud's illness is so rare... It's understandable that the doctor didn't think of lymphoma. Now, we mainly focus on the near future: the upcoming chemotherapy sessions and hopefully Noud's recovery. It's 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 immensely enjoy things that used to seem obvious. For example, when we're at home, and Noud is playing sweetly with his little sister. Those moments are priceless to me. And ultimately, we will emerge from this stronger. I'm sure of that."
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