Hi guys,

A very quick post to let you know how pleased the Child Cancer Foundation is with all the beads you donate to the Beads of Courage Programme. Every time I get requests for more beads they go out of their way to tell me how much they appreciate all your work, and a few weeks ago I was sent this certificate.

Well done guys, keep them coming!

x Isla

Beads of Courage Certificate

Bianca started collecting her Beads of Courage when she was diagnosed with leukemia beginning June 2007.  When she completed her treatment in September 2009, she had around 1,300 beads (including some very special glass beads that were specially made and donated to the Child Cancer Foundation) and on the 11th of September 2009 Bianca got to string the most special bead ever – a special purple heart to celebrate the end of treatment… read more

Simply put, the Beads of Courage programme is the most amazing initiative ever.  Bianca loves showing her beads to others and last year she asked her teacher if she could bring her beads to share with her class and she read a story to them about what leukemia is.  The kids were so excited and so interested in what each bead represented.  They loved trying on the necklaces and it made them feel special that they got to share in this moment.

I guess that is one of the most amazing things about the beads – it is such a visual thing, people instantly get a sense of what the child cancer journey involved and in a way it helps them understand.  It is one thing telling them some of the things your child went through, but when they actually see it all strung together, that is simply mind-boggling.  And for us, it tells a story – that no matter how difficult the road was, it is a testament of how very brave and amazing our daughter was and is.   It is something Bianca can keep and one day when she is an adult, she would be able to share it with her children and grandchildren and tell her story that it is possible to live life despite cancer. 

When a child has cancer they are suddenly thrown into a world where they have to endure one unpleasant and sometimes painful treatment after another, there are no options but just to go ahead with it and whilst at first a sticker or a lollipop could help a child cope after the procedure, soon it simply doesn’t do the trick anymore and that is where the beads are so amazing.  It gives a child (and the parents) something to look forward to.  It helps to prepare a child for something that will be happening.  We had many days where we managed to talk Bianca through a procedure by telling her she would get to choose a special bead afterwards.  It definitely made a huge difference.

Bianca often looked at her beads and said “because I am so very brave” and that is what the beads did for us, it kept Bianca’s spirits up, it kept her believing in herself, it gave her something to look forward to.  And as parents, it helps us help our child cope at a time when we don’t always know how to best prepare our them for what they need to go through, for many of us, we look forward to collecting the beads just as much as our child.

And even though we are done with treatment, I still often look at Bianca’s beads, her story, her journey and I am in awe at just how much we achieved, at how far we’ve come.  The beads are such an amzing concept that we’ve even managed to convince a girl in the US to start collecting beads and then she presented it to her hospital and she managed to get them to start the programme too and even though another mom and her son’s hospital in Australia aren’t participating, she managed to get some affordable beads and they started collecting too. 

It is my heartfelt wish that the wonderful and amazing people who make and donate these beads to kids like Bianca would know just how big a difference they are making.  They are giving something that could be treasured and kept, something to brighten a child’s day and give them something to look forward to, and they really make the journey worthwhile.  It is simply amazing watching a child as they select a very special bead, to watch their face light up and watch them string that bead, and for us when Bianca strung that purple heart – that is a feeling I simply can’t explain.  Thank you so very much!

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.

Click here to see what their visit to the Born to Bead studio

We had the monthly Beads of Courage open studio this last weekend and it was very very special. Little Bianca came around to see the studio and see how we make the beads she’s collected. I recognised one bead from us so that was special to actually see a bead we had created be chosen by Bianca. her family would like to thank all the artists and has created a post on their blog with photos, have a look it was awesome fun. We got given flowers and chocolates, and big hugs and kisses from both Bianca and her sister, Caitlyn. Caitlyn got to ride on dad’s shoulders through the studio while Bianca tried on her glasses. Helen gave a fabulous demonstration and we had a number fo keen volunteers in to clean and package beads. we have added 70 new beads to the program so thank you very much everyone for your kind donation of time and glass.

Hello,

We stumbled across your website and I must say your beads are so beautiful; I just love the photos on your blog of the workshop you held.  Wow, I sure wish I was able to do this.

Anyway, I noticed you are making beads for the Beads of Courage programme and my little girl who is now 6 has been collecting beads since she was diagnosed in June 2007.  She is now nearly done with her leukemia treatment and to date she has collected probably around 1,000 beads.  I’m not really sure as I haven’t counted them recently.  She simply loves her beads and have taken them to school for a show and tell and we recently started with sibling beads for Bianca’s little sister.

Thank you for the wonderful work you are doing!

Here is a link of Bianca at the age of 4 talking about her beads:

http://www.youtube.com/watch?v=CF2oNBRVWw4&feature=channel

Here are some links for you to look at with photos of Bianca and her beads, you’ll have to scroll down to see some of the photos:

http://whitesinnz.blogspot.com/2009/06/looking-back.html  (You’ll have to scroll down the entry to see the photos)

http://whitesinnz.blogspot.com/2009/03/signing-car.html  (scroll down) 

http://whitesinnz.blogspot.com/2009/02/show-and-tell.html

 http://whitesinnz.blogspot.com/2008/12/day-started-just-like-any-other.html

 http://whitesinnz.blogspot.com/2008/10/wish-come-true.html  (scroll down)

 http://whitesinnz.blogspot.com/2008/09/girl-power.html

 http://whitesinnz.blogspot.com/2008/08/introducing-fire-chief-bianca.html

 http://whitesinnz.blogspot.com/2008/03/admitted-to-hospital.html

 http://whitesinnz.blogspot.com/2008_03_09_archive.html

 http://whitesinnz.blogspot.com/2008/03/tv-appearance-at-start-of-ccf-appeal.html

 http://whitesinnz.blogspot.com/2007/11/day-11-delayed-intensification.html

http://whitesinnz.blogspot.com/2007/10/collection-of-beads.html

http://whitesinnz.blogspot.com/2009/07/because-siblings-are-cool-and-special.html

So anyway, we just simply love the beads programme!  Thank you for being part of this.

Lea White (Bianca’s mum)

Our blog:  http://whitesinnz.blogspot.com