‘You feel powerless. I was angry, too. Everything was so uncertain. What lay ahead of us?’

Sanne shares: ‘Moving on with our lives is still difficult. We lost the most precious part of our lives, our future. People grow old and pass away, that is the natural order of things. But Kayden was taken from his life far too soon. Rick and I still have our daughter, Livaiya, who is three. We keep going for her.

Summer 2023

Kayden, who was three and a half, had a slightly round belly. We were not worried. Many young children have that, and Kayden was never sick. But when his daycare also mentioned it, I decided to search online. I quickly came across information about tumors. That felt wrong. The family doctor sent us for an ultrasound. The doctors saw a large tumor, and that same day we were referred to the Máxima Center.

A very busy week

On Instagram I followed children who were treated at the Máxima Center, so I already knew a little about it. Even so, walking in for the first time was overwhelming. Bald heads, IV poles, tubes. For Kayden it all seemed completely normal. He stayed cheerful, did not ask questions and did not feel sick. Within one week he had scans, a biopsy and several other tests. It was a relief that everything could move so quickly. The doctors told us that Kayden had a Wilms tumor that had spread to his spine, hip and lungs. We never expected that.

Long treatment process

A long treatment journey followed and everything seemed to be going well, until Kayden changed a few weeks later. He began having angry outbursts. The doctors felt there was no urgent reason to repeat the scan. That was frustrating, because my mother’s instinct told me something was wrong.

Headaches

A few months later Kayden started complaining about headaches. At night he often woke up and suddenly his eyes began to roll back. We could not reach him anymore. We called the ambulance right away and we also called the Máxima Center. Someone from the Máxima Center stayed on the phone with us while we waited.

Feeling powerless

At the shared care hospital they found that he had an epileptic seizure, but the cause was unknown. Kayden was sedated and placed on a ventilator in the pediatric ICU. I asked if we could go to the Máxima Center, but that was not possible. A professor who also worked at the Máxima Center told us that something in his head was unlikely, but later it turned out that this was exactly what was going on. I thought: this will never get better.

You feel completely powerless. There is nothing you can do. I was also angry. Everything was uncertain. What lay ahead of us? What Kayden had was extremely rare. Doctors even had to consult colleagues abroad to find the right treatment.

Bare bottom

During that time, and really throughout the whole journey, I found a lot of support in Kayden’s lead physician and in the CliniClowns. I remember one moment when Kayden showed his bare bottom to his doctor when she walked in. We felt so comfortable with her, and that moment showed it. At first he found the CliniClowns a bit scary, but later he laughed so much with them. That was wonderful to see. For a moment you get to see your child smile again.

Sushi, Disney and Sinterklaas

‘Why is mommy crying?’, Kayden asked my sister. After spending four weeks in a row at the Máxima Center, the tumor had grown again. From that moment on, only life-prolonging treatments were possible.

You cannot control your emotions anymore. Kayden did not understand what dying meant, and we never explained it to him. We only told him that he was sick and had angry cells. Looking back, I sometimes doubt that decision, but he was so young and not thinking about things like that. Why would we burden him with it? Instead, we focused on making special memories together. We stayed at the Efteling Hotel, went to Disneyland, took trips and went out for sushi. When things became very bad and the chemo stopped, we celebrated Sinterklaas. In September, in thirty-degree weather.

Palliative care

The palliative care team at the Máxima Center, the home care team and our family doctor meant so much to us in those final weeks. The same people came to help each time, and that was comforting for Kayden. When he started receiving morphine and became very confused, we knew it was time. Kayden passed away at home on September 28, due to the spread of the disease in his brain.

Support

Then you suddenly have to continue with life. I asked for help because I no longer knew how to move forward. Soon I will start treatment through mental health services, and through the Máxima Center I already received bereavement support. It is comforting that people think along with you, because you do not have the space to do that yourself.

Keeping Kayden’s memory alive

At Kayden’s funeral we all danced to ‘Van Links naar Rechts’ by Snollebollekes, his favorite song. For Sinterklaas we still put out a small shoe for him. At Christmas he received a gift under the tree. Recently we took our daughter Livaiya to Disneyland. She said: ‘Kayden would have loved this!’ She sometimes talks about him. Together we keep Kayden’s memory alive.’