My name is Zyara and as most of you already know, I’m Shymo’s sister. My mother and I are the ones who maintain Shymo’s persistent chain.
The persistent chain launched in 2006 and is established by the Parents, Children & Cancer association. The association supports family’s with a child that is suffering from cancer. To support these children, they came up with a system made up of beads. Each bead has a different meaning, ranging from treatments or examinations to different events. Shymo also had different kind of beads around her chain such as the ones for radiation treatment, getting a shot, anesthesia, hospitalization, surgery, injections, you name it. As of late 2007 the persistent chain has been introduced into all pediatric oncological hospitals in the Netherlands.
The association’s supplier of the beads is BSCI certified. This means that the producers that they collaborate with are providing good working conditions for its employees. Every year over 200.000 beads are being produced for children with cancer in the Netherlands.
For us as a family the chain, keeps us aware, helps to explain to others but also creates an image to visualize what Shymo already has been through. Meanwhile her chain holds 1027 beads and is over 13 meters long.
Only when we started in the PMC hospital did we start with the bead chain, because that is when we discovered its existence. Which is quite strange, since the initiative started that the VUmc where Shymo was being treated before. That is why we build up quite a lag but thanks to the amazing people of the PMC we did get all the missing beads. Our experience is that in the hospitals for adults the persistent chain does not get a lot of attention, while this is also a type of support for young adults!
A lot of people don’t know what what Shymo is actually going through. But this chain clarifies a lot and helps others to in a simple manner read her story; because every bead tells a story.
When Shymo has been at the hospital and had all her treatments and consults, we go to the doctors assistant and get the beats from the storage. At home we collect these and sort them in a little pink tray and as soon as it’s full Shymo and I string them to the chain.
Sometimes it happens that there is no bead for a particular treatment, but even for that there is a solution! You can make your own bead from a special kind of clay. Sometimes they even have special beads which Shymo gets from someone in the hospital. Recently she got a Proud-as-a-bear bead to live up the chain! Ofcourse we are also as proud as a bear and it is very nice that we are able to record that with a bead in the shape of a bear head.
We do hope that not to many beads will come our way anymore and that Shymo cures. But for now we will keep collecting them…