Author Topic: Questions for BCCA - BOC UK  (Read 3831 times)

Jolene

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Questions for BCCA - BOC UK
« on: August 04, 2013, 09:37:21 PM »
howdy, I'm compiling a list of questions for BCCA from lampworkers about Beads of Courage in the UK and want to hear your thoughts. Is there anything you would like to ask? Anything you would like to know more about? Any previous info that is confusing and that you would like have clarified?

Let me know...

Ta, Jo x

Tinker

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Re: Questions for BCCA - BOC UK
« Reply #1 on: August 04, 2013, 10:21:25 PM »
Great stuff!
I am more confident now, but in the beginning I would have been alot more comfortable making beads for them if I had definitive info on what they wanted because I didnt want to just send them any old thing if it wasn't going to be of use. What beads they want, and what specifically are they used for would be a good question x

awrylemming

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Re: Questions for BCCA - BOC UK
« Reply #2 on: August 05, 2013, 12:11:07 AM »
A torchside fact sheet would be a great thing for lampworkers, so they could see what they should make/avoid making at a glance.

Izzybeads

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Re: Questions for BCCA - BOC UK
« Reply #3 on: August 05, 2013, 07:23:38 AM »
Yes the size of them.  That was a real revelation to me at yours when Sarah said big is good, I always went for smaller for little hands, now my BoC are huge  ;D

Also, not that I use it, but silver glass, must be made clear that it can be used but has to be encased.

What is BCCA.....having a duh moment!

Jolene

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Re: Questions for BCCA - BOC UK
« Reply #4 on: August 05, 2013, 07:29:24 AM »
Be Child Cancer Aware Laney

One interesting thing that came out of chatting with Sarah at the weekends is that though it is mostly children on the BoC program there are older teens too, even up to 16-18, so I made a few fancy grown up beads. Worth thinking about for the people who make bead bags too maybe?

Izzybeads

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Re: Questions for BCCA - BOC UK
« Reply #5 on: August 05, 2013, 07:36:57 AM »
I knew I knew it, told ya DUH moment! 

Some how I think my older style beads for grown ups is not quite what the programme is looking for, however got a bit of an itching to do some encased ones.....

Cornish

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Re: Questions for BCCA - BOC UK
« Reply #6 on: August 05, 2013, 09:47:37 AM »
The teen bit might of answered my question can we make skulls / gothic inspired beads and use fabric that's a bit gothic. I know some would think its a bit macabre but I do know not all kids like cutsie etc.  :)

Jolene

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Re: Questions for BCCA - BOC UK
« Reply #7 on: August 05, 2013, 12:32:20 PM »
My gut feeling is go for it Vic, will add it to the list of q's too though

Tinker

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Re: Questions for BCCA - BOC UK
« Reply #8 on: August 05, 2013, 04:02:13 PM »
Yeah good point, I took some skulls back out of my last parcel as I wasn't sure.

SarahBCCA/BOC

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Re: Questions for BCCA - BOC UK
« Reply #9 on: September 01, 2013, 07:33:00 PM »
Hi everyone, I will endeavour to keep checking this post and answer what I can.

Yes, to the gothic, skull inspired beads or material used. We do get some teens (even boys) so they would go down well definitely. We try to send all the hospitals a mixture of all the different beads for genders and ages.

I will upload some photos during the week of some of the different kinds of beads we could really use.
The beads we get kindly donated from bead makers will either become
1.Courage beads
2.Bone Marrow recipient or Bone marrow donor beads (sometimes the donor is a sibling so we would acknowledge them too)
3. Long term follow up bead
4. Challenge bead


Courage beads are used for various reasons. They are known as a "booster bead" because they arent given for a specific treatment such as chemo, blood transfusions etc.
Sometimes a nurse will have a child who is just so poorly, or so scared they won't come out of bed. They just lay down, pull their blankets over their heads and want to forget the world. We have testimonies from nurses who have said in situations like this, they will take a box of courage beads in to the child's room, and ask them to look through the box of beads and choose one that represents how they feel that day.  They leave the box with the child, and always within about an hour the child has not only chosen a bead, but they want to tell you why that bead represents how they feel that day, and what it was about that bead that made them choose it. They want to engage, and the bead has given them a way to do that.
Some children will take all of their beads to school and give a presentation to their peers about what it is they have been or are going through, why it is they no longer have hair, and why they may be more tired than the other kids, or have a nurse come to school to take their blood. They would get a bead for that too. It is a big thing for them to stand up in front of their friends and tell them what has been happening.
Size: These are your small/medium sized beads. Kids love colourful and tactile beads, but just a warning that the more sticky out bits they have, the higher the chance they will chip or break.

Bone Marrow recipient/Donor bead
These are one of the groups of beads we are short on. Having a bone marrow transplant is a really big deal and is a dangerous procedure, so these beads are big and have a bit of wow factor to acknowledge that. A little more detail, or colour, but size is definitely a factor for these.
If a sibling donates, as mentioned we acknowledge that too by giving them a bead.

Long term follow up
This is another group we are short on. These beads are given when the children have finally got to yearly check ups, but haven't yet got their all clear. That is a big milestone to get to, but also means they don't get much opportunity to collect beads throughout the year (this is a good thing, but the kids miss them!) so again these are big and fancy. When we receive big beads, we set them aside, and they will either become Bone marrow or long term follow up.
Beads of Courage were going to discontinue this bead because of lack of supply, but we have persuaded them not to as they are really important to the kids on LTFU.

Challenge beads
One thing the kids love to do is to show people their beads. They want people to ask about them, so they can proudly show them off. One thing they love more than that is to get more beads. One way we engage the children and they earn a bead is our seasonal challenges. We do spring summer autumn and winter challenges. Some of you out there are obviously inspired, because I always seem to be donated a group of beads to use for this in time for the challenge. We have just had summer, and the beads used were strawberries and cupcakes. The children shaped their beads in to something they did this summer. One little girl shaped hers as an arm, as this holidays she had her arm amputated. To us that is devastating, but she had the BIGGEST smile on her face on the photo showing her beads.
It became about the beads and not the procedure.
Other beads we have used were a batch of eggs and ladybirds, different coloured bead with bubbles in the winter as they looked icy. Things like that. We usually have up to 30 children enter the challenges. We also engage the siblings who have the sibling programme in the challenges as they struggle to find their place during treatment.

Never under estimate the power the beads you make have on the children's well being.

Any other specific questions, please do ask, I am always happy to answer any questions. And THANK YOU always for everything you do to help carry the children through their treatment x