‘It takes a village to raise a child, but also to say goodbye to one.’

Maartje shared: ‘Lynn was the most beautiful girl in the world. Our wonderful daughter, full of humor. We laughed so much with her. She was very intelligent, but also realistic. Because she went through so much, she was already mature at a young age. Her motto was: ‘We’ll see’. She was amazing at reframing situations. That is one of the most important things she taught us.’

Something was wrong

In 2017, Lynn suddenly developed a high fever. She was five years old at the time. She hardly ever had a fever. She looked pale and was sweating a lot. Around that time her molars were also coming in, so I did not initially find the symptoms very strange. A week later we were supposed to go on vacation. Because Lynn was still not feeling well, I decided to call the family doctor after all. He chose to do a finger-prick blood test. The results were not good and we were referred to the hospital. Three hours later we knew it was very serious: acute lymphoblastic leukemia (ALL).

Treatment followed and lasted two years. At that time, care took place at the WKZ. It was a very nice ward, almost like a small village. We knew almost everyone, and as parents we supported each other a lot. We were all in the same boat. Sometimes, strangely enough, it was even cozy. In the end, Lynn received the final bead on her bead chain.

Cancer again

But three years later, during a routine check-up, it turned out the cancer had returned. Lynn now had acute myeloid leukemia. A stem cell transplant was needed as soon as possible. This time, treatment would take place at the Máxima Center. That is much larger than the WKZ. Fortunately, Lynn liked the stem cell unit. As long as she could do her own thing. Unfortunately, that was not always possible, because she had to be in isolation for part of the time. But when it was allowed, we would go to places like the sensory room. She loved that. In the evening she would lie on the waterbed there, and we could watch movies and relax together all evening.

Stem cell transplant

The stem cell transplant went well. Lynn improved. But a few months later, the cancer returned once again. A devastating blow. At that point, there were three options: another stem cell transplant, trying a new medication, or doing nothing. That third option was not an option. Not for Lynn, and not for us. A second stem cell transplant was too much for Lynn’s body. So we decided to try the new medication. Up to that point, it had shown good results, but there was also a high chance it would not work. After about four weeks, it became clear that the medication did little to nothing for Lynn. It exhausted her. We decided to stop.

At home

The palliative phase is described as the phase in which you have to understand that your child is going to die. How do you understand something like that? When, how, what? We agreed that we wanted Lynn to have full control. She did not want any more medication. She wanted to be at home, lying on the couch, surrounded by her own things. We were able to arrange that.

At that point, the Máxima Center transferred care to the pediatric home care team and the family doctor. They were fantastic. Doctors from the Máxima Center and the shared care hospital called us several times a week to ask how things were going.

Saying goodbye

We kept family and friends close. Everything was discussed with them. Sometimes they asked questions we had not even thought of ourselves. That is also a tip I want to share: you do not have to do this alone. ‘It takes a village to raise a child’, but also to say goodbye to a child.

The help of friends and family also made it possible for the life of our six-year-old son to continue as normally as possible. They helped us with everything. They cleaned the house, took our son to school, cooked meals, and arranged transportation to Utrecht. Lynn also really enjoyed having visitors. Until she became very ill. At that point, she no longer wanted that.

She did not want to say goodbye to all the people she loved. We agreed that she would only say goodbye to her grandparents, aunts, and uncles. We had to say goodbye to one person. She had to say goodbye to hundreds.

The gift weeks

At home, Lynn actually improved for a while, even though she did not have long to live. We were able to enjoy two more weeks with her. Two gift weeks. We went to the Efteling, went swimming, and spent one morning at school. We also went to a tattoo shop especially, where Lynn was allowed to draw a tattoo on us herself.

Lynn gradually became more tired. She slept more and more. But when she was awake, she was truly still ‘our Lynn’. On the morning of February 22, 2023, she quietly slipped away. We were close by. It felt right. She chose her moment, just when the home care nurse had stepped out and we were together as a family of four.

A piece of advice

After Lynn passed away, we needed the people around us more than we had in the weeks before. At that time, Lynn was still with us and we wanted to spend every minute with her. Looking back now, what I want to say to other parents in a similar situation is this: talk to each other, and also to family and friends. But most of all, talk to your child. Do not force him or her into things you want. Look at it from the child’s perspective. What does he or she want? Give them control back. They have already lost so much control. Lynn wanted to be at home. That wish was honored. She passed away in her favorite place, surrounded by the people she loved most. How beautiful is that?’