‘Moving forward is still difficult. We’ve lost the most precious part of our lives. Our future. People grow old and pass away—that’s the natural order. But Kayden was taken from his life. Rick and I still have our daughter, Livaiya (3). For her, we keep going.’
Summer 2023
‘Kayden (then 3.5) had a slightly bloated belly. We didn’t think much of it. Many children have round tummies, and Kayden was never sick. But when his daycare mentioned it too, I started Googling. I quickly came across information about tumors. It didn’t feel right. Our GP referred us for an ultrasound, and indeed, the doctors saw a large tumor. That same day, we were sent to the Princess Máxima Center.
A very busy week
I followed children treated at the Máxima on Instagram, so I already knew about the center. But walking in for the first time was overwhelming. Bald heads, IV poles, tubes. To Kayden, however, it all seemed normal. He stayed cheerful, didn’t ask questions, and didn’t feel sick. Within a week, we went through countless scans, a biopsy, and other tests. It was reassuring that this could all happen so quickly. The doctors told us Kayden had a Wilms tumor with metastases in his spine, hip, and lungs. We had never expected that.
Fits of anger
A long treatment plan followed, and everything seemed to be going well until a few weeks later when Kayden wasn’t himself. He started having fits of anger. The doctors saw no urgent need for a new scan. That was frustrating because my instincts told me otherwise.
A few months later, Kayden complained about headaches. At night, he often woke up, and suddenly his eyes rolled back. We couldn’t reach him anymore and immediately called an ambulance and the Máxima. While waiting, the Máxima stayed on the phone with us.
At the shared care hospital, it turned out to be an epileptic seizure, but the cause was unclear. Kayden was sedated and placed on a ventilator in the pediatric ICU. I asked if we could go to the Máxima, but that wasn’t possible. A professor who also worked at the Máxima said something in his brain was unlikely, but later, my suspicion was confirmed. This isn’t going to end well, I thought.
Feeling powerless
You feel powerless. There’s nothing you can do. I was also angry. Everything was so uncertain. What lay ahead of us? What Kayden had was rare. The Máxima had to consult experts abroad to determine the right treatment.
During that time, and actually throughout the whole journey, I found a lot of support from Kayden’s primary doctor and the CliniClowns. I remember one time Kayden showed his bare bottom to his doctor when she came in. That shows how comfortable we felt with her. At first, he found the CliniClowns a bit intimidating, but later, they made him laugh so much. Seeing your child laugh again as a parent is priceless.
Sushi, Disney, and Sinterklaas
‘Why is Mom crying?’ Kayden asked my sister. After staying at the Máxima for four consecutive weeks, the tumor had grown. Only life-prolonging treatments were now possible.
You can’t control your emotions anymore. Kayden didn’t understand what death meant, and we never explained it to him. We only told him he was sick and had bad cells. Looking back, I question that decision, but he was so young and not focused on that. Why burden him with it? Instead, we created beautiful memories as a family. We stayed at the Efteling Hotel, went to Disneyland, took vacations, and ate sushi. When things got really bad, and chemo was stopped, we celebrated Sinterklaas. In September, in 30-degree weather.
From left to right
The palliative care team at the Máxima, home care, and our GP were very supportive during the final weeks. The same familiar faces came, which was comforting for Kayden. When he was given morphine and became very confused, we decided it was enough. Kayden passed away at home on September 28 from the metastases in his brain.
And then, suddenly, you have to move forward. I sought help because I didn’t know how to cope. Soon, I’ll start treatment through mental health services, and I’ve already had grief therapy through the Máxima. It’s comforting that they think along with you because you can’t figure it out on your own.
At Kayden’s funeral, we all danced to ‘From Left to Right’ by Snollebollekes—his favorite song. At Sinterklaas, we still put out a shoe for Kayden. At Christmas, he had a gift under the tree. Recently, we were in Disneyland with Livaiya, and she said, ‘Kayden thought this was beautiful too!’ She sometimes talks about him. Together, we keep Kayden alive.’
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