‘We visited the general practitioner several more times, to no avail. Finally, it was the doctor in our new hometown who referred us to the emergency room in Goes, where the CT scan showed a brain tumor. Within two days we were at the Princess Máxima Center and after two more days the first chemotherapy was administered. Maxime tolerated the treatment well, despite all the unpleasant side effects of the chemotherapy. Every day we saw a bit more of our funny, caring and energetic child. Over the course of five months, Maxime underwent four rounds of chemotherapy and two rounds of stem cell treatment.
Brain surgery
An interim scan showed that the tumor had not completely disappeared and that brain surgery was necessary. I will never forget the moment the oncologist told me this news, because I immediately had the unpleasant feeling that she would not survive the operation. During the operation, Maxime suffered a cerebral hemorrhage and was kept in a coma in the intensive care unit. This lasted for three days. We held on to her own motto: ‘Everything will be fine’. This was followed by six weeks of radiotherapy in Groningen. Despite the high pressure on her brain and the drain that was placed, Maxime made a miraculous recovery.
Overdose of love
Then the ‘acquired brain damage’ came to light. Maxime quickly regressed in development. The transition from regular education to a special school was inevitable, but she did not fit in with the other children. Her behavior became increasingly difficult, she no longer wanted to go to school, she had suicidal thoughts and felt lonely. The situation at home became unbearable. For this reason, Maxime now lives in a care facility. She finds peace there and has already made positive progress in her development. Nevertheless, she will probably never reach her calendar age. Every other weekend she comes home for an overdose of love.
Motherhood
The staff at the Máxima Center has guided, helped and supported us very well over the past five years. Their drive and sincere attention always stay with you. Maxime's doctors have been there for us countless times. It was heartwarming. Years later, I started a conversation with the doctors about my bad premonition in the intensive care unit. I was confirmed: motherly feelings are always right.
Advise
The Máxima Center still feels like home to us; we have always felt understood. The social workers have also guided us very well. All the activities that are organized are very nice to distract from the intense period that you’re going through. Finally, we would like to advise other parents to join the Facebook group with other parents. This has been very helpful during the late-night worrying. Other parents are experts by experience and can often give you useful tips and reassurance.’