Once Dylan became an outpatient we were introduced to the Beads of Courage programme.
Beads of Courage is sponsored by the charity Be Child Cancer Aware & was started in the USA in 2004 & in the UK in 2011 in order to help children with serious illnesses. They offer support with emotional and social wellbeing to chronically ill children and their families as they go through their medical journey.
Trying to find positives within such an enormous negative is a daily test, more so when you have to help a child accept as normal all the difficult situations that have been placed at their feet due to serious illness. The beads give Dylan’s cancer a narrative that he can understand which in turn helps him to recognise what he is going through with more clarity.
These beads help Dylan in so many ways; they are not called beads of courage for nothing. They are an important form of recognition & acknowledgement of his illness. In short they are a kind of coping mechanism & give him something tangible to use when talking about his cancer with other people.
Recently Dylan’s community nurse visited his school to talk to the children in his class & then separately to their parents. Dylan is one of two children in his class who have cancer; this is not only rare but also disquieting. Dylan is now in year two so the children are six & seven. It is an inquisitive age & they were struggling to understand why Dylan has a lot of days off school & why some of his medicines make him feel poorly or why they make people’s hair fall out.
Dylan was not present during the talk the nurse gave but afterwards went into the class with her & bravely showed them how he has his thumb prick blood test every week, he also showed them his port where he now receives chemotherapy. Fortunately children are blessed with naivety & do not see things as adults do; apparently they were fascinated. Just by doing this Dylan had the opportunity to be able to normalise his situation & has also helped others to process a bit of what goes on in his life.
The following day he took his ever increasing Beads of Courage into school to show his class & teacher. Again, this helped him & his classmates understand a bit more about cancer & he was able to talk freely using the beads as a means of demonstrating all of the procedures he has had to undergo.
Every single procedure or treatment that Dylan has to endure is marked by a bead & the different colours represent different procedures.
The white beads represent how much chemotherapy he has had; so far he has 484 white beads which when stretched out measure five & a half metres. Examples of other beads collected are 178 steroids (blue), 126 antibiotics (purple), 96 blood tests (black), 63 nurse visits (light purple), 30 neutropenia//fever (lime), 25 anaesthetics (pink), 19 lumbar punctures (tortoiseshell). There are too many more to list here but I think the concept is clear.
Dylan gets more excited about some beads than others & the reasons that he receives them. The apple bead is one of his his favourites, it represents going back to school which was a massive milestone having been unable to go for so long.
These beads have restored Dylan’s sense of self whilst coping with the many fears that cancer brings. They have helped enable me to explain in simple terms what he is going through. They symbolise strength as well as courage & they have also helped him to take control of this awful situation.
They are a powerful visual reminder of how much Dylan has gone through, how far he has come & what he is yet to endure. I hope that in years to come he will be able to look at them with pride because if he can get through this he can get through pretty much anything.