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Beads of Courage


 

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Beads of Courage -- Discussion for all things Beads of Courage; the only not-for-profit, arts-in-medicine program putting to use the talents of glass beadmakers to uplift children dealing with life threatening illnesses, their families and the people who care for them. Families, clinicians and artists alike are welcome to join in! (Thank you to Lampwork Etc. for supporting Beads of Courage and helping to foster communication!) PHOTOS OF INDIVIDUALS OR CHILDREN ONLY ALLOWED WITH THEIR SPECIFIC CONSENT.

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  #1  
Old 2012-03-31, 9:01am
GR GR is offline
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Join Date: Mar 31, 2012
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Hi Lampworkers,
Like many of you, I have made several donations to Beads of Courage. Theoretically, it's a great idea that kids might enjoy beads to signify what they have been through.
Recently, it became personal. My toddler grandson was diagnosed with stage 3 cancer. Difficult cannot begin to describe what he has been through. He has been through 4 rounds of chemo and a major surgery. His week looks like this - an appointment for chemo, a poke and a tube insertion for blood counts and chemo delivery, some type of test (another poke, plus the test, often under anesthesia). Each round of chemo he gets a transfusion (another poke/tube), and an overnight stay in the hospital. He's been in the PICU and ER, and taken morphine. And each cycle he gets neutropenia - that means his white blood counts are so low, he has to be isolated from people (everyone but mom, dad, grandma, grandpa and medical personnel.) Each of these is "routine" and he gets a bead. Beads to signify these treatments are specific colors, purchased by Beads of Courage due to the large number used.
The “routine” is just the beginning of what he has been through. As lampworkers, we contribute beads used as “Act of Courage Beads.” You may wonder what that means. Talking with a nurse, she said it can be anything. Her example was a teenager who walked down the hall in the clinic for the first time in months. For my beautiful boy... sitting up after they cut open his abdomen, or taking his 10th dose of oral meds for the day, and then taking it again because he threw up. The process of treating cancer is torture to these babies and children. Our "Act of Courage Beads" encourages them at a low point.
The nurse I spoke with said the kids most often choose bright, big beads. But there are kids of all ages - so think of the kids you know and what they might like. You could make a character from a movie, or an animal. Or maybe a child is fixated on a color and you could make the best "purple" (or any other color) bead a child could imagine. She also said they would like beads with letters on them.
My hope is that you all can better understand how important our donations really are to the treatment and healing process of these children. They are fighting a war for their lives, and maybe our little beads can help on a day they need it most!
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  #2  
Old 2012-03-31, 9:16am
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Diane Woodall Diane Woodall is offline
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Wow GR, your note has touched my heart! BOC is a very dear part of my life, but it has never been as personal to me as what you are going through right now. I am so sorry to hear about your grand-baby. Thank you so much for sharing your story with us and giving us a glimpse of BOC from the "inside".

I am so thankful for this program. The medical professionals who work with these children have to be some of the most compassionate people on the planet, and if us making beads for them will help in even a small way to ease the suffering of the wee ones, we need to make it a top priority.

I'll pray for your grandson and will keep up my mission to encourage as many others to make beads as I can. Every single bead makes a difference to one child. God bless.
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Old 2012-03-31, 9:49am
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Elizabeth Beads Elizabeth Beads is offline
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GR my heart goes out to you and your grandson and his family. I'm so glad I can be a small part of the Act of Courage bead program. It is sobering to realize just how many children are fighting this battle and the number of beads that are needed and what they symbolize.

Today I am mailing a box that I just weighed at more than 5 lbs. of beads - 100 big ones and about 50 smaller ones plus a half dozen purple hearts.

I'm also personally working with a family I met through my BOC work and I just made their 11-year-old a big bead in the colors of his favorite sports team. Although I have never met him or his wonderful family, I'm following his story at Caring Bridge. It is a poignant reminder of how very much I have to be grateful for every single day.

Thank you for posting. May your grandson emerge victorious from his battle and may his journey be eased by the BOC arts-in-medicine program.
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"And all will turn to silver glass, a light on the water, grey ships pass into the west." Annie Lennox
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Old 2012-04-05, 5:40am
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Glowbead Glowbead is offline
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I can't imagine...The birth of my own grandson in December inspired me to devote my bead making in 2012 to BOC. I was so grateful that he was healthy. Your story makes me want to double my efforts. I wish the best for you, your grandson, and family.
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Old 2012-04-05, 5:59am
ginger2 ginger2 is offline
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GR, I also would like to ditto what Diane, Liz and Glowbead said. It is horrific what the children have to endure to fight for their precious little lives. I can only imagine the horror of having someone you dearly love go through all of this. I try to make beads for BOC everyday. Thank you for taking the time to share what those precious children have to go through.
Healing hugs to GS and to you,
ginger
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Old 2012-04-05, 3:30pm
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demcc2 demcc2 is offline
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Wow! Gr, thanks so much for the inspiration!

Almost 20 years ago I was doing a lot of inline skating (rollerblading) and was even participating in organized inline skate races throughout New England and New York. I had to give all that up due to a new family at the time and developing back woes. While a member of the inline skating club we would participate in the Jimmy Fund Walk (Boston Marathon route except peopple would walk to raise money for the Jimmy Fund). Our role was S.O.S or support on skates. We were the only ones allowed to be on skates for the whole route.

Long story short...each year we would be assigned our "hero" for the team.
We would go into the old FAO Swartz toy store in Boston and there would be a meet and greet with Dana Farber's staff and some patients and their families. Let me tell you, being able to meet our hero up close and in person makes you put things in perspective. I also went into the clinic with a couple other skaters and nurses and could spend time chatting with kids who were healthy enough.... Its an amazing experience to do that.

On a side note, Ginger, I know you received some type of recognition for your BOC conttributions a couple of years ago. Thanks you so much for your dedication! This year is still early so guess what?! Ginger, I'm calling you out
I hereby commit myself to go after and surpass what you did a couple of years ago!! (you never gave me a total quantity).

Duane
PS Please check out my thread, "Another BOC Idea."
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Old 2012-04-05, 4:44pm
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Elizabeth Beads Elizabeth Beads is offline
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Duane I think Ginger made something like 2,000 beads for BOC.
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Old 2012-04-05, 5:28pm
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Eileen Eileen is offline
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Thank you so much for sharing your story. I have a 19 month old grand daughter that I cherish, and I can imagine how hard it is to see your grand son go through this.

I will think of him next time I'm making beads for the program.
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Old 2012-04-06, 9:38pm
GR GR is offline
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Thank you all for well wishes and encouraging words. My grandson will start his final round of chemo on Monday!

Those of you making huge numbers of beads for BOC are amazing. A box of 100 + is great! Purple hearts are the best of all...every child wants one! I understand how important these beads are to the wonderful medical personnel & the precious kids. I will be joining you and aim for 2012 beads this year
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But, anyone can make any number of beads and they all matter, and are all appreciated by a particular child that picks them out and is encouraged!
Have a great day!
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