Chain of Courage for Children with Cancer

by Dutch Childhood Cancer Organisation /Vereniging Kinderkanker Nederland
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Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer
Chain of Courage for Children with Cancer

In the last report we shared something with you about Rose. Rose was diagnosed with lymphoma in July 2020. She had a lot of support from the Kanjerketting (Chain of Courage), because it made it so clear to her what was happening.  She get a bead for every (medical) treatment. For example, when you get your chemo, you receive the pink, white and green bead. It makes a sort of diary and it helps remembering the treatments you had. 

Rose's hair also fell out during her treatment. Even twice! She had the bead for hair falling out twice.

When Rose's hair started falling out for the second time, Rose had a conversation with her brother. Together they came up with the question of why there isn't a bead for when your hair grows back. It is so important to think about the positive things as well!

With this beautiful thought, Rose started an action. An action to collect money for a new bead for the Kanjerketting, namely a bead for when your hair grows back.

This Sunday we will see in the Dutch TV-series 'Hallo, ik heb kanker' if she reached her goal!

Next to that, we will share the special bead for World Childhood Cancer Day on the 15th of February!

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This report is about Rose. Rose was diagnosed with lymphoma in July last year. She has a lot of support from the Kanjerketting (Chain of Courage), because it makes it so clear to her what happened and will happen. You get a bead for every (medical) treatment. For example, when you get your chemo, you receive the pink, white and green bead. It makes a sort of diary and it helps remembering the treatments you had.

The Kanjerketting also makes other people aware of what you experience when you are sick. You can show your chain and tell your story, where the beads help you telling is. It's a really visual diary.

When you hair starts falling out due to the treatment for cancer, you also receive a bead. This bead is a small cap. Rose's hair also fell out during her treatment. Even twice! She had the bead for hair falling out twice.

When Rose's hair started falling out for the second time, Rose had a conversation with her brother. Together they came up with the question of why there isn't a bead for when your hair grows back. It is so important to think about the positive things as well!

With this beautiful thought, Rose started an action. An action to collect money for a new bead for the Kanjerketting, namely a bead for when your hair grows back.

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 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….”

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Butterfly bead
Butterfly bead

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…. ”

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Bloemenkraal
Bloemenkraal

Who is the KanjerKetting for? The KanjerKetting is intended for all children who have been diagnosed with cancer. -

How does this work? The KanjerKetting consists of all kinds of beads. Each bead represents a particular action, investigation or event. There are beads for blood samples or for scans. But also for a very good or a very bad day, the moment the hair starts to fall out, there is a bead for the start of chemotherapy and a bead for every chemo you receive afterwards. And much more. A child / young person can receive a bead after every action or event from, for example, a nurse, laboratory technician or pedagogical employee. -

How does the chain help children during treatment? The chain tells the story of the child. Every chain is different, because every child has its own disease story. The beads show what happened. For the child / young person self, their own process becomes very tangible and visible… literally. But also for family, friends, classmates, boyfriends and girlfriends, teachers, etc. This can be very important for the support and processing for the child and the family. The chain can act as a bright spot for the children. Getting the bead after a treatment or medical examination is often seen as a reward. The chain can also be used to explain to a child the things that are about to happen. -

Is there also added value for the family and environment? Yes. As already written, the chain makes visible what has happened. Not only for the child, but also for parents and family this can be a tool to show what it means to have cancer. Children often have long chains. When outsiders see this, they understand what the child had to endure ... how often and how much a child has undergone examinations and treatments. In addition, the tangible chain is a reminder of the disease process for many families. "Remember, then you got a scan, and then the chemo started, that's where your hair started to fall out" etc. The chain is a guide to the story. -

What do children do with the chain once the treatment is finished? When a child has finished his or her treatment, it is symbolically closed with the last bead: De Bloemenkraal (flower bead). An end to the chain that the children are looking forward to. Many children and / or families keep the chain in a nice bag or box. It is different how or where the chain is stored. I often hear that he is given a prominent visible place in the house. In others, the chain pops up every now and then when talking or thinking about sick time. -

What if it goes wrong and a child dies ...? Unfortunately, that also happens. Instead of the Bloemenkraal, the chain is then closed with the Vlinderkraal (butterfly bead) or the Hartjeskraal (heart bead). Families can choose this themselves. -

How did the chain end up in Belgium? Other countries often contact us because they have become enthusiastic about the KanjerKetting. They have seen these, for example, at international meetings where the VOKK is present. Or the KanjerKetting is known because it has been seen in other children. That is also the case with Belgium. People came in contact with our initiative and contacted us. That's how the ball started rolling. -

Is there 1 bead that children like the most and like the least? Every child has its own preference or own experience of what the bead stands for. It is sometimes funny to see which beads a child likes. The Regenboogkraal (rainbow bead) is a favorite for many girls. While the reason that a child gets this bead is of course less fun: an emergency admission. But which bead children want most, that is of course the Bloemenkraal! This is not only beautiful to see, but what it stands for is even more beautiful: the end of the treatment. Where all families work towards to! -


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Organization Information

Dutch Childhood Cancer Organisation /Vereniging Kinderkanker Nederland

Location: De Bilt, Utrecht - Netherlands
Website:
Facebook: Facebook Page
Twitter: @kinderkanker_nl
Dutch Childhood Cancer Organisation /Vereniging Kinderkanker Nederland
Marinka Draaijer
Project Leader:
Marinka Draaijer
Nieuwegein, Utrecht Netherlands

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