'In the six weeks before, Ediene (4) was very sick. She had abdominal pain and leg pain. The months before, she would sometimes suddenly lie down on the floor. She wanted to be lifted up all the time. This happened so often during a vacation that my brother made a photo collage of it.
According to the family doctor, she had pneumonia. She was given antibiotics, but that didn't work. Every so often I had to pick her up from daycare because of a sudden fever. When Ediene became very sick again and bruises and spot bleeding appeared, I went to the doctor in the evening. Immediately we were referred to the emergency room and shortly thereafter to the Princess Máxima Center.’
Hemato-oncology department ‘Schommel’
'I had no belongings with me at all. Luc was working in Ghent, who had to drive another two hours to get to us. We were exhausted when we arrived at the Máxima. Security took us to department ‘Schommel’. There we were given a room and toiletries.
Very soon a pediatric oncologist came to us. That was Natasja Dors. One of the first questions I asked was about Ediene's fertility. I am a social worker and deal with that a lot. But I was immediately reassured about that. Then we sent a WhatsApp message to our family. Calling them was too much for me at the moment. I would at that moment was too much for me. I was devastated.
We didn't sleep a wink that night. I made a list of things we needed from home and went to pick them up in the morning. The laundry was still hanging outside.'
'The medical pedagogical employee came to explain at Ediene's level how the Port-A-Cath (PAC) was going to be placed. That is the little box under her skin that allows the chemo to be administered. Luc and I also received a lot of explanation. Partly it passed me by. Our oncologist made a drawing explaining the bone marrow and the white and red blood cells. That was nice to look back at.
Everyone in the Máxima is very kind. There is attention for Ediene, but also certainly for us. Ediene is now in an intensive treatment period. She has been delayed a lot because she keeps not 'qualifying' for the chemo. Then her resistance is too low. There is nothing you can do about that, only wait. She gets two more three-day hospitalizations before moving to the maintenance phase.
Ediene is in a specific treatment group with patients where there is a high chance of the leukemia coming back. Now they are doing a study to see if they can give those children something extra to reduce that chance. They want the same number of children in the groups so they can see at the end which group has the best results. During the week of June 5, the oncologist will push the button and we will know which group Ediene will be assigned to. I hope she will be accepted for an extra treatment. Everything so that we don't have to go through another course.’
A dot on the horizon
‘Before this whole process I had heard of the Máxima. My oldest son is under treatment at the WKZ. Stories about children with cancer, I never wanted to know about them. I couldn't look at them either. That may be different now - I can stand it a little better because I recognize a lot.
Luc hasn't been to work in Ghent since the night of the diagnosis. He wants to be close by and has found a job in the Netherlands. The first three months we were able to take care of Ediene together. Now that he is working again, I am at home or at the hospital with Ediene. I work a few hours a week, more is not possible yet. Fortunately, my employer has given me every opportunity to do this.
Two years and one month after the diagnosis, it is August 14, 2024. That's my dot on the horizon. Then, if all goes well, she is going to get the flower bead. Meanwhile, I notice that my two sons also need structure. They have trouble with change. Sure most of their time now goes to Ediene, there is no other way. But hopefully in a time there will be equal attention to everyone.'