NZGBA – New Zealand Glass Bead Artists

Neither Rory or I remember when he received his first Beads of Courage.  I know it is written in one of the many notebooks I have filled since he was diagnosed with cancer in March 2009.  The first nine weeks after Rory’s diagnosis are a bit of a blur, punctuated by memories of intense events.  It was a very traumatic time for the whole family as he fought for his life, and we struggled to cope with the reality he had two life threatening brain tumours.  The team on the Neurosurgical ward at Starship Hospital were fantastic, and it was Nurse Specialist Stephanie Moore who closely supported Rory’s care and gave him his first Beads of Courage. 

We knew little about the programme, other than what we had seen on television.  Rory was very impressed when Nurse Steph first lifted the lid on her bead ‘stash’.  The large plastic box was divided into many compartments, each labelled with the treatment which corresponded with the bead inside.  There were a multitude of colours, shapes, and sizes.  Rory and Nurse Steph went through his treatment record and Rory picked out a bead for every procedure he had endured.  I think his first collection numbered over 50.  There was no bead for some of the procedures Rory had endured so he was able to pick a unique handmade Bead of Courage.  Nurse Steph had these special beads in a separate box.  It was always Rory’s favourite task to inspect them and narrow down a small group from which he would make his selection.  A small piece of orange paper comes with each bead, a mini achievement certificate.  On the back I write a description of the bead and the reason Rory earnt it.  They beads were all hard won; enema’s, stitches under local anaesthetic, removal of the femoral iv line in his thigh, a tricky insertion of a new naso-gastric tube.

It was Rory’s job to thread his Beads of Courage onto a string.  This has not always been easy for him to do.  After his surgeries he had left sided weakness, reduced co-ordination, and his eyes weren’t working together.  His hands would shake and it often took a long time to make a match between the bead and string.  But he was determined; I have not threaded a single one.  Each string holds 100 Beads of Courage.  Rory now had seven and a half strings, and continues to earn more beads as he battles for recovery during remission.  Rory is very proud of his Beads of Courage and knows what each type of bead stands for.  Each string is unique and tells a story of his journey with cancer.  The first two strings contain his name, four stars for his surgeries which equated to over 23 hours on the operating table, one for his 7^th birthday, 10 unique beads of courage, and a lot of yellow beads for the nights he spent in Starship.  The next two strings contain many purple beads which tell of his battle with infection after surgery, and the many needle pricks (black) he endured as they tried to find the cause and his veins collapsed.  They also contain green beads for the harvesting of his stem cells, and red beads for the blood transfusions which followed.  There are 31 beads which glow in the dark for radiotherapy, and one round green bead with a face for when all his hair fell out.  The next three strings are a rainbow of colours and cover his high dose chemotherapy (ironically this bead is white), numerous tests and scans, and countless antibiotics and le pricks.  The last, and most recent, string contains the purple heart he chose to mark the end of treatment, and a green robot which was made for him at the Born to Bead studio when he visited. 

Everywhere we go people want to see two things, Rory and his Beads of Courage.  When they see the 750 beads which represent what he has endured people are usually blown away, but the enormity of his fight, and by the unique beautiful strings which are a testament to Rory’s courage and endurance.  The strings of beads are handed round regularly at family gatherings, friend’s places, work, and at school.  Several times the strings of beads have been passed around the children during assembly at Dargaville Primary School and when they were returned to Rory you could see he felt the energy of the 300+ pairs of hands. 

The Beads of Courage programme provides a tangible, real, unique way of showing and explaining what children who have fought cancer have endured for a second chance at life.  They instil a sense of pride in the children, and choosing beads and adding them to their strings is something they enjoy doing during the long days of often unpleasant procedures in hospital.  Many of the children have the strings hanging up by their beds in the ward rooms, and the children often comment on how other children’s strings differ from their own.  The introduction of the sibling beads in 2009 has added another dimension to the programme.  Rory’s 10 year old brother Sam also has a string of beads.  The beads are different to those available to children with cancer.  The qualities or characteristics of each bead determine which beads during treatment by Rory, or by Sam and Rory together i.e. strength, love, friendship, bravery.  Most families of children with cancer struggle financially as they are reduced to a single income (often less) to support their children.  We all value the fact the Beads of Courage programme is available for all children as there is no cost involved.