Chloe, what do the beads of courage mean to our 17-year-old son L and us as a family?
Well to be honest starting the bead chain gave L an outlet to demonstrate his journey. It then became a visual voice of his endurance for his family, friends, and those caring for him to see and hear. It also became an aid to discuss with L how he felt about what each bead represented. For his dad and me, it became a balm to our anger as the untold journey/story was finally being told.
Firstly, it is our son L who is important in all of this. He is our absolute priority. As his parents, L's dad and I watched him go to hell and back with each of us holding the trauma in our hearts, souls, and minds. When L finally after 6 months, 5 operations, 3 misdiagnosis, and 2 stints under critical care arrived unknown onto the Hogarth Teenage Cancer Trust Ward, we recognised there was a risk of there being a difference of attitude. Those around us may have seen L as a newcomer to teenage cancer but to us, it wasn't his first day, it was the next painful step on his very long and arduous journey.
A journey also made rapidly from paediatrics to adults literally overnight, your friendly smile made us at ease. As none of the ward staff or indeed doctors knew L, it meant none of them knew or understood the 6 months journey L had had to arrive at the juncture of discovering he had cancer. A rare and aggressive cancer and time had been lost in treating it.
L arrived exhausted and deteriorating due to a life-threatening post-operative infection whilst his dad and I arrived angry and terrified. As the days passed, L began to improve thanks to driven, experienced, and skilled consultants, medical and nursing staff. L also finally had a treatment plan but yet again no one really knew his journey.
That all changed when it was asked literally, the day before chemotherapy was due to start if L would like to start his beads of courage…
We as a family sat with L and worked out all the injections, all the operations, all the procedures, all the clinical, all the blood transfusions, all the blood tests, all the antibiotics, all the scans all the X-rays, etc. 167 separate procedures had taken place before the white chemotherapy bead was threaded. It helped draw a line, it helped tell the story and it became quite a talking point on the ward.
It was also so lovely to award L a silver acorn courage award bead from his dad and I demonstrating our pride and love in the fact his resilience is that of a mighty oak! One of the nursing staff also awarded L a fish bead for swimming upstream whilst another awarded him the helping hand due to his positive attitude.
The "beads of courage" is an incredible positive resource that has helped us as a family come to terms with what is happening whilst importantly boosting L's morale and giving a quiet incredible young man a voice that shouts very loud as to what he has and is going through.
Thank you, Chloe.