The Chain of Courage of Bente:
“July 26, 2019 is etched in our memory: the day we heard that our beautiful, happy six-year-old daughter had a brain stem tumor. There was no chance of survival. From perfectly healthy to terminal… BAM. Never a flower bead (bloemenkraal, the bead that stands for the end of the treatment) for us ... Four days later we were in the Princess Máxima Center for the first time. We walked there completely uncomfortable. We saw children everywhere with probes, IV poles, bald heads. It was very strange to realize that we now belonged there too. A whole day full of research and conversations followed. The next day an MRI, another day later an operation to take a biopsy and the next day the confirmation again that it was a brain stem tumor (DIPG). In the meantime we started to get used to the Máxima. Bente got her Chain of Courage with her name and the beads for all the difficult things she had already been through, but was not sure what to do with it.
The new school year started and after a week in group 4 she started a heavy course of three weeks of radiation and chemo. The Chain of Courage grew every day with beads for anesthesia, radiation and chemo. Bente was well aware of what she was going through. The beads became important to her. She also managed to name them: MRI, CT, operations, mask, radiation, chemo, anesthesia, injections, removing plasters, hair loss, etc. She regularly took the Chain of Courage to school to show it and tell about it. This made it clear to her classmates, but also to her brother, which tough and brave things Bente had to do. Her birthday coincided with a radiation day. She was proud of her birthday bead. Her brother also took the chain to school several times to tell about it. After this treatment, the tumor had shrunk and we enjoyed life with the four of us for a number of months, culminating in our wedding in which Bente married us and we were also married that day with the four of us. The theme of our wedding was "celebrate the four of us" and we did! For that day she got the "super good day-bead". Four days after our wedding, Bente came downstairs crying. She could no longer move her arm properly. Since then she has deteriorated more and more. Because she could not yet say goodbye to her friends, she wanted re-irradiation. This caused her deterioration to be slowed. As a result, she was able to consciously say goodbye to everyone who was dear to her. Her Chain of Courage is not super long, but all important, tough and brave things are stored in this chain. The probe, another operation, mask, CT, catheter, eye drops are all "fixed" in the chain. Bente passed away on June 20, 2020. Not a flower bead, but a beautiful butterfly bead, because Bente loved butterflies. Our Chain of Courage is complete. For Bente, the Chain of Courage was important to show everyone what she was going through, even though she did not feel ill. For our son, the chain is a reminder that his big sister was ill. It helps us to keep telling him about Bente's disease process. For us, the Chain of Courage van Bente is a tangible memory. The four of us are forever…. ”