The story of Bente
“July 26, 2019 is etched in our memory: the day we learned that our beautiful, happy six-year-old daughter had a brain stem tumor. There was no chance of survival. From healthy to terminal… BAM. Never a flower bead (the bead for the end of treatment) for us…” “Four days later we were at the Princess Máxima Center for the first time. We walked there completely uncomfortably. We saw children everywhere with tubes, IV poles, bald heads. It was very strange to realize that we now also belonged there. 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 again confirmation that it was a brain stem tumor (DIPG). In the meantime we started to get used to the Máxima. Bente got her Kanjerketting (Chain of Courage) with her name and the beads for all the difficult things she had already endured, but wasn't quite sure what to do with it yet.
Bente started to like the Princess Máxima Center. Singer Maan became ambassador and we were there that moment. Bente enjoyed the performance immensely and she was proud to sit in the front. 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 Kanjerketting 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 knew how to name them: MRI, CT, operations, mask, radiation, chemo, anesthesia, injections, removal of plasters, hair loss, etc. She regularly took the Kanjerketting 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 has also taken the Kanjerketting 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 few more months, culminating in our wedding in which Bente married us and we also married the four of us that day. . The theme of our wedding was 'celebrating the four of us' and we did! For that day she received 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 steadily deteriorated. Because she couldn't say goodbye to her friends yet, she wanted re-irradiation. This caused her decline to be slowed down. As a result, she was able to consciously say goodbye to everyone who was dear to her. Her Kanjerketting is not super long, but really important, tough and brave things are fixed in this necklace. 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 (the bead for when a child passes away), because Bente loved butterflies, ended the Kanjerketting. Our Kanjerketting is complete. For Bente, the Kanjerketting was important to show everyone what she was going through, even though she didn't feel sick. For our son, the Kanjerketting is a reminder that his big sister was sick. It helps us to be able to continue to tell him about Bente's disease process. For us, Bente's Kanjerketting is a tangible memory. We are forever together….”