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TOPIC: Beads of Courage

Beads of Courage 9 years 2 weeks ago #1197

  • tacmom
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Have any of your children received one of these? Caitlin was given one today by her hematology nurse. They started mostly for cancer patients but recently added hematology to it at the hospital where Caitlin goes. Wish she would have had something like this at the beginning but they will start from today's treatment. Basically, it is a journal that shows what you have been through. Each color bead represents something you have gone through. Caitlin got a black bead which represents her infusion and a blue bead which represents an IV "poke" and then a multiple colored glass bead which represents courage. I think this is a great idea and it will be something she can hold onto forever that tells her story.
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:Beads of Courage 9 years 2 weeks ago #1235

  • BethF
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I've never heard of this, but what a great idea! I am a very disorganized person and a method like this would be a great way to keep track, as well as a sweet reminder of how brave our ITP kids are. Over the years, Brady has received special presents from the hospital or clinic, especially when he gets a treatment during a holiday - Christmas, Easter, etc. - and when we come across one of them we enjoy talking about the experience (even though the treatment isn't enjoyable, there are always nice moments with a nurse or the doctor or something we read or watch on tv during the time). I love the beads of courage!

Thanks for sharing that.

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment in Dec. '08
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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Re:Beads of Courage 9 years 2 weeks ago #1236

  • lili
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I've never heard of it, but this is a great idea. Even us adults would like it.

Lily

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Re:Beads of Courage 9 years 1 week ago #1366

  • sannyt
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I've never heard of it either but i think it's a wonderful idea.
Sandy~~ mom to Doug.

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Re:Beads of Courage 9 years 1 week ago #1370

  • Bunnie
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After TACMOM posted, I was curious enough to do a google. Very impressive 501C Charity started by a RN from Tuscon Arizona. The charity provides the beads to 50 hospitals worldwide and if you google, you find all these wonderful people who make beads, or wooden boxes, or cloth bags to hold the beads donating their time and effort for special children.

www.beadsofcourage.org/pages/about.htm

I work for CVS Caremark and the charity focus within our company is those that impact children. Currently here in the Phoenix area we have different efforts going on in the month of March to support the Phoenix Childrens hospital (buy a jeans week, raffling baskets donated by different departments, etc.) I asked corporate communications today to see they would add the event on March 20 here in Mesa AZ for Beads of Courage to our Arizona home page newsletters.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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Re:Beads of Courage 9 years 1 week ago #1425

  • tacmom
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Bunnie...that's nice that you asked your HQ to add the info about this charity in their newsletter. I hope they do it! I think this must have just started at our hospital because today I saw quite a few kids wearing them. Caitlin got two more beads added to her necklace. I have to say that this truly made her feel special and she looked forward to getting her beads today! I have also asked my girlfriends if we can participate in making some of the bags because two of them can quilt and then one of my friends' husband loves making things out of wood so we can help this way too! We've made blankets several times for different organizations (moms & kids) and this will be another way we can contribute and teach our kids the importance of volunteering.
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:Beads of Courage 8 years 5 months ago #8753

  • seetamccann
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Hi Beth,

My daughter was just diagnosed 0n 8-27-2010 and is getting the WinRho treatment tomorrow 10-05-2010.,..can you tell me anything about the treatment??? we are both nervous

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Re:Beads of Courage 8 years 5 months ago #8754

  • Angelalogin
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My son has two or three ropes of beads, they do them at the Hospital for Sick Children in Toronto Ontario too. They did indeed start them for cancer patients but have extended it to most floors including hemo, and cardiology. I went through the list that you get as best I could and had to make up for 7 years of not having them, they said just put down as best you can remember, so I did, but Im sure there are waaaaaaaaaay more red beads missing for bloodwork! Its an awsome idea, gives the kids even a tiny thing to look forward to when they are admitted, they have boxes on every floor at the nursing station and most children down there adorn their IV poles with them, some have many, many strands. There are very large and special beads for major surgeries etc...its awsome, my son loves them. I think every hospital should do it.

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Re:Beads of Courage 8 years 5 months ago #8779

  • jaycharness
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I agree, my daughter was included as the first hematology patient. We counted up her treatments so they gave her some beads that accounted for 50-100 (labs, visits, etc) so she did not even get one bead for every visit (since we started 4 years into her diagnosis. Even without the single beads for the first 4 years, she is finishing her 4th strand of beads. I love it because it puts a physical connection to all of the visits, treatments, etc that she has been through. Since they had not had a hematology patient before, they kind of made up there own coloring system (black is for every appointment, blue is for every blood draw and purple is for every treatment). We love it!

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Re:Beads of Courage 8 years 5 months ago #8791

  • tacmom
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This is awesome that they are including other patients! Caitlin was given one while she was doing Rituximab by one of the nurses that we met at diagnosis and she was her nurse for a long time. We haven't seen her in a while so we miss her. We were told over the summer that they would be extending this program to hematology patients in October. So if your child goes to a Children's Hospital and you see other kids wearing these beads (has their name in large beads) then the program is at your hospital.

We only got to start with Rituximab so we do not have the beads prior to and I'm not so sure I could even sit down and count how many blood draws Caitlin has had since she had two a week for a long time. Anyways, if your child is not part of a Children's hospital, these are the beads that represent the "hematology" portion of it:

Bone marrow aspirate/biopsy=beige
Clinic Visit/Infusion-blue
Immunizations/chemotherapy-white
ER Visits-Magenta
Hair Loss (for those of you who have loss hair with vistincrine)=brown & face
Infusions-purple
Inpatient Admission/Sleepover at Hospital-Yellow
Pic Line-Orange
Pokes (IV/Blood Draws)=black
Tests/Scans (MRIs, CT Scans)=Light Green
Transfusions-Red
Act of Courage-Glass selection
Completion of Treatment-Purple (Only given at exit appointments)

There are more, but many are geared towards cancer treatments. Since they are now starting this up for hematology, I think there will be some special beads for our kids. Caitlin has received one "Act of Courage" bead and quite a few of the others. We have not documented every clinic visit or blood draw. I really should document everything on my own that I create for her and then keep the ones the hospital gives her separate. (Each bead is specially made so you can't buy these anywhere.) There is a group on Facebook if you want to join and find out more. There are always inspirational stories of how these beads have touch these kids' lives! :) (Some are sad too so beware!)
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:Beads of Courage 8 years 5 months ago #8797

  • Angel85
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I think the beads of courage is a wonderful idea, I wish they had something like that when I was younger, I can't even count how many blood tests and hospital visits I have had this year let alone how many all up since I was born. Things like that do make it easier when u know your gonna get a reward or treat for going through all that we have to endure.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:Beads of Courage 8 years 5 months ago #8817

  • jupiter1219
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I wanted to add to this thread because I think that this is a great program that my daughter has enjoyed being a part of. Our hospital DOES participate in it, but just for the oncology patients (at this time). I'd asked a few times if she could participate and was told no because they still needed to institute a program for the hematology patients.

HOWEVER, I was advised to contact Beads of Courage directly and they were so awesome! They have an "at a distance" program that she is enrolled in now. They asked me to tally up which beads she would have already received and to estimate some she would get often/need in the future. They sent everything directly to our house in a cute little hand-made bag to hold them in. Now, I am the one who gets to dispense them, which is great because we often go to the local lab for weekly counts instead of to the Children's Hospital. Nothing ever gets missed.

Colin Smith is the person I contacted and I got his email address directly from the Beads of Courage website.
csmith@beadsofcourage.org

I hope this helps someone's child :)
Sabrina
mom to 6 year old DD with Refractory Chronic ITP
diagnosed at 2.5 years old

Treatments tried to date:
IVIg
WinRho
Rituximab - 4 doses
Dexameth - both IV and oral
Prednisone / Solumedrol - too many times to count
Transexamic Acid prior to proceedures

Currently on Promacta, 25mg

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