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

Since 2007, the KanjerKetting (Chain of Courage) has been a known name for many children with cancer and their parents. Since this time, we often hear from children and parents that the KanjerKetting helps and supports. Nevertheless, we also wanted to map out the experiences with an investigation. In order to find out about these experiences, a questionnaire was made with various statements. Professionals, parents of children who are still in treatment, parents of children who have finished treatment, parents of children who have died, children and young people have responded. The research shows very nice and positive experiences.

From the completed questionnaires we can determine that the KanjerKetting is used by young and old, namely from 0 years to 22 years. We also found experiences that suited different topics:

Processing
The KanjerKetting appears to be able to help with the processing of the disease. One of the youth says that:

"The [KanjerKetting] is a tool to better process the [cancer]"
Girl, 18, finished treatment

Because each bead has a meaning, treatments and events are sort of more tangible and clear. This can in turn lead to processing, if it is possible to process an event, if it is also clear to someone and is understood.

Disease insight
It is therefore important for children that events are well understood. Children then have insight into their illness and understand events better. Where can accept the situation and process it appropriately. The questionnaires show that the KanjerKetting contributes to this. One of the children says:

"In a diary you write every day what you have experienced and the chain also shows what you have experienced"
Girl, 15 years old, still in treatment

The clarity that the KanjerKetting provides about events provides less certainty about a situation. This ensures that again a sense of security, familiarity, competence and development of identity. For example, a child says:

"I knew [thanks to the KanjerKetting] what was going to happen and what still had to happen"
Girl, 11 years, finished treatment

Supportive and treating
The answers to the questionnaire also showed that the KanjerKetting is a good means of sharing emotions. A professional says that:

"Where children sometimes find it difficult to talk about medical actions of feelings, the chain gives conversations in a playful and light-hearted way."
Pedagogical employee, working in a pediatric oncology center

And a parent:
"He only talks about the treatment together with the chain. Without the chain he does not let go much .. "
Parent of a 6-year-old who is still in treatment

Sharing emotions can help to process the disease, the KanjerKetting helps to accept.

Communication with environment
Many parents and children use the chain as a means of communication to talk about the disease and treatment. Especially the nice colors and shapes of the beads, generate interest from others about the necklace:

"People quickly ask for the meaning, which immediately gets the conversation going."
Older 11-year-old finished treatment

Many parents also indicate that others understand better what their species are experiencing through the KanjerKetting. With the KanjerKetting you can see in detail what happened in the hospital and that gives a clear picture. This can also lead to more understanding, for example at school:
"Our daughter also occasionally takes him to school to show what treatments they've all had."
Older 7-year-old, still in treatment

The questionnaire shows that brusses also use the chain for this.

Reminder
For most parents and children, the KanjerKetting is a precious memory, a kind of diary that tells the story. This includes both positive and negative memories. Parents and children determined not to hide these negative memories. The KanjerKetting ensures that you can look back on the period in a positive way:

"Although it is a reminder of a bad period, the chain itself is a positive thing that she proud of."
Older 8-year-old, finished treatment

Barriers / negative themes
With the questionnaire, we also looked at possible obstacles to the KanjerKetting. For example, the statements "The KanjerKetting puts my species on a pedestal", "The KankjerKetting hinders me in the processing" of "The KanjerKetting reminds me of a bad period" were given for this. Answers to these statements were especially negative. Professionals, parents and caregivers and children have little or no negative experiences. The comments on the answers to these questions also show that such obstacles are less experienced. For example, one child answered the question "The KanjerKetting reminds me of a bad period". However, the comment was:

"Sure, that period is not fun, but I also think the KanjerKetting will help you remember how strong you are."
Girl, 15 years old, still in treatment

Conclusion
The KanjerKetting has various positive effects for parents, children of all ages and (care) professionals. The chain has positive effects on the processing process of parents and children, it is a communication aid and a valuable memory for later. This tangible diary makes it easier for children and the family to deal with the disease, during and after treatment. The KanjerKetting gives the possibility to recognize, accept, remember and tell stories.

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I'm Jack. I am now almost 12 and got lymph node cancer in my chest when I was 9. I have had intensive chemotherapy for 7 months and a maintenance treatment with chemotherapy medication for over a year and a half. My Chain of Couragetherefore is very long.
Especially when I was still in the hospital, I had a lot of support from the chain. The second "most beautiful" bead is at the beginning of my chain. I missed my brothers very much because I was so far away in Amsterdam at the Emma Children's Hospital. We live in Kerkrade, Zuid-Limburg.
Because my tumor was very large, I was transported to Amsterdam by ambulance after the doctors discovered what I had. So I didn't have said goodbye to my brothers. The bead represents the visit of my brothers, Bob and Scott.

Because I had to take oral chemo so often and had to have blood samples, I decided to take a bead once a month instead of every time. Even less later. Otherwise my necklace would have been way too long.

The most beautiful bead I received last week. The flower bead. It's done ... I'm going to work out again, laugh more and hopefully I'll be able to sleep better soon.

Greetings,
Jack

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The KanjerKetting was very important to me. I have not had cancer, but cytomegaly (CMV), and this was treated with the same treatment as children and adolescents with leukemia.
With the KanjerKetting I can tell my fellow students at school and family members what my period was like. My KanjerKetting is not that long, but the story behind it is very strong.
Cytomegaly was discovered by me in November 2013. Although it seemed harmless, it apparently needed some serious treatment.
One of the nurses from the Sophia Children's Hospital in Rotterdam asked me if I also wanted a KanjerKetting. Of course I wanted that! I am 16 years old, but I think a KanjerKetting contains a storyline. With the help of each bead I can tell what happened and every time people look at it with admiration. Every time something happened, even just changing a patch, I didn't leave the treatment room before I got my beads. My brother, by the way, also enjoyed showing the beaded necklace to his friends and was able to use it to explain what actually happened in the hospital. I am happy that the KanjerKetting is here. I received my last bead on March 6; a flower bead! I was done with the treatments and declared cured.
My KanjerKetting has a total of 74 beads with the anchor included. I thank VOKK for the KanjerKetting.

Amber

 

The treatment of childhood cancer usually takes a long time and is hard. As the treatment continues a child might become more reluctant to co-operate with the necessary procedures. Knowing that there is a reward waiting at the end of the procedure improves the child's attitude. This is where the Chain of Courage (KanjerKetting) comes in. The Chain of Courage is a system that is used during the entire course of treatment. Children receive a special bead after every treatment, intervention.

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"I would like to share photos of the Chain of Courage or the story of our daughter. 
But she was sick for only three months. And yet an impressive necklace. 
I wish he could get longer. So proud of all the beads she got. 
Unfortunately, the last bead was strung on May 2nd. In our heart...

Because Benthe was a discoverer, we take her Chain with us when we start doing fun things. 
We then place it on a 'her' spot and take a picture. 
These pictures were taken at the end of May, the first holiday without our daughter and yet she was a bit like this  
This way, the beads not only give the children strength, but certainly also the parents!"- a mother
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How can a little bead be of so much help to children with cancer, one could ask. The power is the story that the beads are telling as part of the Chain of Courage that a child buids. The Chain enhances the meaning of each individual bead and all these little beads together tell his or her treatment personal journey.

Who else than parents and children can better explain the power of a little bead.
A mother of a son (13 years old) with cancer wrote a beautiful poem about it:

The years have passed,
absorbed in everything.

The beads are strung,
form a meter-long story.

The time is set,
deep valleys and high peaks
captured in images.

Joy and love
trapped in our hearts.

The memories fade.

The years have passed,
absorbed in everything.
With gratitude first.


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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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