‘I often sense when something is wrong. This time, I truly wished I was wrong.’

Jessica (42) shares: ‘“It is leukemia,” I said when Ediene had been feeling unwell for quite some time. I often sense things accurately. I would have loved to be wrong this time, but on July 14, 2022, the diagnosis was confirmed. In the six weeks before that, Ediene had been very ill. She had stomach pain and pain in her leg. In the months before, she would sometimes suddenly lie down on the floor and ask to be picked up. It happened so often during a holiday that my brother even made a photo collage of it.

Referral to the Princess Máxima Center

During a visit to the general practitioner, we were told she had pneumonia. She received antibiotics, but they did not help. I had to pick her up from day care again and again because of sudden fevers. When Ediene became very sick once more and bruises and small red spots appeared, I went to the out-of-hours clinic that same evening. We were sent straight to the emergency department, and shortly after that to the Princess Máxima Center.

Unit Schommel

I had no belongings with me at all. My partner Luc was at work in Ghent and had to drive another two hours to reach us. We were exhausted when we arrived at the Máxima Center. Security staff guided us to the Schommel unit, where we were given a room and some toiletries.

No sleep at all

Very soon, a pediatric oncologist came to see us. It was Natasja Dors. One of the first questions I asked was about Ediene’s fertility. I am a social worker, and I deal with that topic often. I was reassured right away. After that we sent a WhatsApp message to our family. Calling was too overwhelming at that moment, I would have broken down. We did not sleep at all that night. I made a list of things we needed from home and picked them up the next morning. The laundry was still hanging outside.

Leukemia

A child life specialist explained at Ediene’s level how the central line would be placed. That is the small device under her skin through which the chemotherapy is given. Luc and I also received a lot of information. I only partly absorbed it. Our oncologist drew a picture showing the bone marrow and the white and red blood cells. It was very helpful to look back at that later.

Attention for us as well

Everyone at the Máxima Center is incredibly kind. There is a lot of attention for Ediene, but also for us. Ediene is now in an intensive phase of treatment. She has had many delays because she often does not ‘qualify’ for chemotherapy. Her immune system is then too low. There is nothing you can do except wait. She still has two more three-day admissions before she can move to the maintenance phase.

Additional treatment

Ediene is in a specific treatment group for patients with a higher chance of relapse. Right now a study is underway to see whether these children can receive something additional to reduce that chance. They want an equal number of children in each group so they can compare the results at the end. In the week of June 5, the oncologist will press the button and we will find out which group Ediene is assigned to. I hope she is selected for the additional treatment, so that we do not have to go through another full treatment process later on.

Recognition

Before all of this, I had heard of the Máxima Center, but only in passing. My oldest son is treated at the Wilhelmina Children’s Hospital (WKZ). Stories about children with cancer were something I avoided. I could not handle hearing them or looking at them. That is different now – I can cope a little better because I recognize so much.

Since the night of the diagnosis, Luc has not returned to his job in Ghent. He wanted to stay close and found a job in the Netherlands. For the first three months we were able to care for Ediene together. Now that he is working again, I am at home or in the hospital with Ediene. I work a few hours a week, but no more than that. Fortunately, my employer has given me the space to do things this way.

A point on the horizon

Two years and one month after the diagnosis will be August 14, 2024. That is the point on the horizon for me. That is when she is expected to receive the Flower Garland. In the meantime, I have noticed that my two sons also need structure. They find change difficult. Of course most of our time goes to Ediene now, there is no other way. But I hope that at some point there will be room to give everyone the attention they need.’