‘Even now, the Máxima Center still feels like coming home. We’ve always felt understood.’

Esther shares her story: ‘In 2018, while we were preparing to move to another town, Maxime (9) started to feel unwell. At first, the symptoms were quite vague: she was tired and dizzy. It seemed like stress related to the move. But my mother’s instinct told me something was not right.

Four rounds of chemotherapy and two stem cell treatments

We visited the family doctor several times without results. Eventually, the family doctor in our new town referred us to the emergency department in Goes, where a CT scan revealed a brain tumor. Within two days, we were at the Princess Máxima Center, and two days later Maxime received her first chemotherapy. Maxime tolerated the treatment well, despite all the difficult side effects of chemotherapy. Every day, we saw a little more of our funny, caring, and energetic child return. Over five months, Maxime received four rounds of chemotherapy and two stem cell treatments.

Brain surgery

An interim scan showed that the tumor had not completely disappeared, and brain surgery was necessary. I will never forget the moment the oncologist shared this news, because I immediately had a terrible feeling that she would not survive the surgery. During the operation, Maxime suffered a major brain hemorrhage and was kept in a coma in the ICU afterward. This lasted three days. We held on to her own motto: ‘Everything will be okay’. After that, she had six weeks of radiation therapy in Groningen. Despite the high intracranial pressure and the drain that was placed, Maxime recovered remarkably well.

An overdose of love

That was when acquired brain injury came to light. Maxime’s development declined rapidly. The transition from mainstream education to a special needs school was unavoidable, but she felt she did not fit in with the other children. Her behavior became increasingly difficult, she no longer wanted to go to school, had suicidal thoughts, and felt lonely. The situation at home became unmanageable. That is why Maxime now lives in a care facility. She finds calm there, and in terms of development she has already achieved positive results. In any case, she will most likely never reach her calendar age. Every other weekend, she comes home for an overdose of love.

Mother’s instinct is always right

Over the past five years, the staff at the Máxima Center have guided, helped, and supported us extremely well. Their dedication and genuine attention stay with you forever. Countless times, Maxime’s treating physicians were there for us. It was heartwarming. Years later, I spoke with physicians about my bad feeling during the ICU admission. I was reassured: a mother’s instinct is always right.

Peer support group

Even now, the Máxima Center still feels like coming home to us. We have always felt understood. The social workers also supported us very well. All the activities that are organized are very helpful as a distraction during such an intense period. Finally, we want to encourage other parents: join peer support groups on Facebook. During sleepless nights filled with worry, this was very helpful. Other parents are experts by experience and often provide practical tips and reassurance.’