A Beaded Journey

You may have noticed beads around Allegra's and my neck on the Done and Dusted post,  this is  "A Beaded Journey".

The Beaded Journey is sponsored by Koala Foundation (caring for our kids with cancer) and Comfort First Therapists (a program that promote coping skills) offer beads and guide the child with their journey.

The Beaded Journey is designed to tell the story of each child's unique and personal journey through their treatment.  Colourful beads represent the many points both medical and non-medical, along the treatment path.   Each child is given a leather cord with their name as well as a bead representing their diagnosis and then collect beads along the way.

When I was first introduced to this by a beautifully-natured, bubbly lady (Kari Peters), from Comfort First, I thought what a lovely idea but I did not think it was for us, my baby is far too sick and didn't have the head space to do such a thing.  She showed me different beads and I remember so clearly pointing out a square one with coloured stars and asked "what is that one for"? She replied "end of treatment".  I soon became disinterested in the whole idea,  I saw no end of treatment, we were just starting and I was still in shock with how ill my baby girl was.

There was a time while sitting for hours in the isolated room that I began to write down every procedure, scan etc.  I asked Kari to come and see us and to start putting the beads on.  Allegra at that stage was in traction, flat on her back, sick with the first cycle of chemotherapy and I thought it could be a good distraction for us both, "to string prettys". 

We would see Kari at different times and as Allegra became more well she showed enthusiastic interest and looked forward to the bead time.  There were days that Allegra just did not want a finger prick or X-ray or dressing change and I began encouraging her by mentioning you will get a ?????? bead for this.  This worked for some time until she had so many beads that an extra one for a finger prick wasn't exciting anymore.  She had many already and my smart little girl weighed it up.

My little Allegra soon learnt what bead was for a particular treatment or procedure.  She would point out beige is for chemo, bumpy ones are for finger pricks, red ones are for blood or platelets, car is for home, heart is for diagnosis (kaemia as she says).

The kids would have them hanging from their medicine poles and they would compare beads whatever their age is.  When kids saw Allegra's they always commented, wow she has so many, I guess this tells the story of what she has been through.  The amount of colourful beads before her red heart (diagnosis bead) is heart wrenching, I still to this day find it very hard to fathom the trauma that my little Allegra endured. 

So when we ran out of hospital on Wednesday the 30th May (Aunty Sissy's birthday) it was significant that we wore our Beaded Journey as a massive part of our journey had just ended.

I was delighted and it was an extremely proud moment to finally put the square bead with colourful stars on it.  Tears of wonderment ran down my face.

Allegra's Beaded Journey (so far) consists of:

20 General Anaesthetics

28 X-rays, Scans

26 Blood, Platelets transfusion

68 Finger Pricks

71 Dressing Changes

32 Days of Chemotherapy

and special beads for many milestones achieved and memorable occasions.

Allegra's 2 metre string of prettys will end on the 13 February 2017.

What bead will be for cured?

Sent from my iPad