Struggling

Britt shares: ‘When Lauren was five months old, she received the DTaP-IPV-Hib vaccination. She reacted strangely. Nothing serious, but something felt off. After that she started to struggle. I noticed little things. Her heart was beating fast, and she stopped rolling over. My mother also said: ‘She looks so pale.’ She was completely right.

A few days later Lauren became really ill. She looked gray and started throwing up. Our general practitioner thought it might be a stomach flu. But I looked at her and knew something was wrong. Luckily the GP took it seriously right away. Even before the blood test I asked if it could be leukemia. I had read about it, because as a parent you still end up googling.

And it turned out to be true. The pediatrician told us the news at three in the morning in the emergency department. Lauren had leukemia. She received multiple transfusions right away because her blood values were so low. The next day we were taken by ambulance to the Princess Máxima Center.

Room 375

I was in shock and very scared. Completely overwhelmed. We were given room 375, which I will never forget. Three women came in, including Lauren’s pediatric oncologist. They explained what leukemia is and that it was probably a genetic variant, because Lauren was still so young.

And then you are sitting there. All I wanted to do was run outside. Lauren had to undergo many tests, and we had to stay at the Máxima Center for a week. The tests showed that she did have the genetic variant. The outlook used to be poor, but fortunately a new immunotherapy treatment had just been added. The results of this treatment were better.

The psychologist at the Máxima Center

At the Máxima Center I immediately asked for a referral to the psychologist. Unlike a psychologist near home, the psychologist at the Máxima Center also has all the medical knowledge. Together we read all the medical reports, because I could not function well anymore. I did not dare to ask the doctors any more questions, because I was so afraid of the answers.

My fears continued. The Máxima Center and my general practitioner created a treatment plan that suited my needs. That helped me a lot.

Fifteen weeks at the Máxima Center

In the end we were admitted for fifteen weeks without going home. Lauren became more and more ill, so we had to stay longer. She even ended up in the PICU at the Wilhelmina Children’s Hospital. Everything went wrong there. Her liver, kidneys, and lungs stopped working, and she needed to be put on a ventilator. And when she survived that, she had a stroke. She lost movement on her right side. She could not do anything anymore.

Those weeks felt like a nightmare, but in a strange way also safe. Lauren was monitored all the time. At the same time she continued receiving immunotherapy for the leukemia. ‘Can’t we stop this for a moment?’ I asked the doctors. Lauren was so sick, but she responded well to the treatment. It was crucial at that moment. It was just that the complications got out of hand. At the very least we expected Lauren to come out of this in very poor condition. We did not know if she would be able to walk or move. But time and again Lauren recovered well.

Crossing the rainbow bridge

From the Máxima Center you can see the PICU. And from the PICU you can see the Máxima Center. And oh, how much we wanted to cross that bridge. You want to go to the orange side, the cheerful part. That is how it felt. Just to be there again, on the other side of that bridge. Not without scars, but at least you are there.

On September 16, after six weeks in the Wilhelmina Children’s Hospital, we could finally go back. There was a big moment to say goodbye, and nine people walked with us across the rainbow bridge. Very special. By my side were two child life specialists, Donna and Renee. They supported me so much. Sometimes they sat with me for hours. One of them was only 24, but they guided me incredibly well.

At the Máxima Center Lauren developed a fever the next day. That meant we had to stay another three weeks at the Máxima Center. But an important moment was also coming up. It was Daan’s fourth birthday, her brother. We really wanted to celebrate this as a family. At home, because we had not been there for fifteen weeks. And we managed. We were allowed to take Lauren home for a few hours. Scary, but also wonderful.

I realized that for the first time in weeks I was really looking at my child again. I had been getting used to staring at a monitor.

And now?

After that difficult time Lauren never had a fever again. When they test her now, they do not find any abnormal cells. She is in the maintenance phase, and things look good. But the impact has been enormous.

You come home and think: what now? What about work? And childcare for Lauren? I could not let her out of my sight. I wanted someone who would comfort her and really see her. We found that with a wonderful childminder. We also received a lot of help through the personal budget. With that we could arrange a nurse at home. She is very sweet with Lauren and takes her to the rehabilitation center or calls the doctor when needed.

This gives me some space again. Because leaving your child, who has had cancer, with someone else just like that never feels natural. Thanks to the support from the Máxima Center and the right help at home, we have found our way.’

Epilepsy

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