attention all Beads of Courage members!
Yes – that is
you! You are one courageous person and we encourage you to send your
story of courage to the Program Director to include here on the web site.
Sharing your experiences with treatment can help other kids who
are experiencing the same journey. Please send us your poems, stories,
digital pictures of any drawings you have created, and even a digital picture
of yourself to:
jbaruch@beadsofcourage.net
View any of the articles, stories of courage, and photos by clicking on the subjects below.
in the news:
Cumming child fights cancer with 'Beads of Courage'
Beads of Courage receives 2008 Best of Tucson Award
Beads Of Courage Help Patients Overcome Cancer
Nice guys really do finish first: Carl Edwards, the necklace and Jimmie on a crock pot
Beads of Courage Day at FlameTree Glass, Inc.
Child Cancer - Beads of Courage
Beads of Courage track kids' fight with cancer
Beads help children fight cancer
Patricia - 3-year-old has earned enough Beads of Courage to fill two full strands
Profitable Glass Quarterly - Summer 2006
Hospital program focuses on kids undergoing treatment for cancer
Beads provide courage to young cancer victims
ACH Cancer Patients Find Healing and Excitement in Bead Collections
It Becomes an Honor to Know Kids with Cancer
Giving Kids Courage to Keep Moving Forward
Program for ill kids goes global
To Rena, beads make the most beautiful necklace in the world
Workshop gives kids at hospital a boost of courage
Children’s Organ Transplant Association: TJ Wilson
YWC event raises awareness for ‘Beads of Courage’
Young cancer patients' bravery recognized
ISGB & Beads of Courage: A Partnership in Healing
in memory:
Danny Palma
Danny loved his beads so much and the art of beads that he was learning how to make beads to give to other kids before he died from complications related to his cancer. A sincere thank you to Lena Rhodes, of Follow Your Art, for her generous donation in memory of Danny.
stories of courage:
Tanya - Leukemia patient meets Kelly Clarkson
Kelli - A site dedicated to supporting Kellie Miner battle Acute Myelogenous Leukemia (AML)
photo library:
Phoenix Children's Hospital
message board:
10.2.07
Kellie was diagnosed in 2004 with acute myelogenous leukemia (AML). This poem that she wrote is on her "team Kellie" website. At the bottom of my email her mom talks about the wood turned box that is in the photo. Pretty cool.
The Big “C” Word
It happened on July third.
It was the big “C” word.
My mom and dad were speechless.
I was diagnosed with AML.
Then my stomach fell.
At that time my life took a turn.
For nine months the hospital became my home.
My view of the world took a whole different tone.
The nurses and the doctors took really good care of me.
I had to endure many new things.
I couldn’t take any outings.
My body was sore and weak.
Three years later and I’m cancer free.
Family, friends, and I are yelling yippee!
I feel thankful to be alive today.
I couldn’t have done it without my team.
They took it to the extreme.
I’m so happy Teamkellie was there for me.
This week Kellie received a gift from a box maker. Mr. Conroy made her a wood box for all of her Beads of Courage a while ago. Kellie's box was not big enough to fit all her beads now. So he made her 2 more boxes that are even bigger. Mr. Conroy Thank you so much. You do beautiful
work.
8.23.07
Hi Jean,
Amy and I both recently experienced just how much the Beads of Courage program means to our kids and we thought we would share it with you! We recently had a patient pass away after a long fight with her illness. While she was with us she was always very excited about her beads and made sure to get them every chance she could get. Amy and I recently attended her funeral service. The patient had been cremated and her grandmother had her ashes put into one of her teddy bears. The teddy bear was sitting in the front of the church wearing on of the patients nightgowns. When Amy and I went to the front to talk to the family following the service we noticed that the teddy bear was wearing the little girls Beads of Courage necklace. We mentioned it to the little girl’s grandmother who told us that she had wanted the little girl to have everything she loved with her. Needless to say Amy and I both started crying! It is so nice to know that the Beads of Courage program means so much to the children and families we all serve! So Amy and I both wanted to send you a BIG thank you for coming up with such a wonderful and meaningful program that you have allowed us to share with our families. They really do appreciate it and the program really does mean the world to these kids! Keep up the great work!
Kelley Lind, BS, CCLS
Child Life Specialist
Banner Children's Hospital
3.16.2007
Jean,
My name is Maude Miller I am Alyssa Miller's mom. You have the article called "Little Bits of Bravery" on your website about Alyssa and I wanted to let you know that we put the rest of her beads on her strands and her total length is 35 feet long. We have placed her beads in a case and hung them on the wall here in our house. WE are so very proud of her accomplishments. She is my pillar of strength and every time that I walk past them I get a huge sense of pride and I know that if my seven year old little angel could endure so much I can endure anything. Thank you so much for starting this program it is definitely worth it. The smile on her face each time that she got to get a new bead was priceless and you have given me such wonderful memories with your program.
I also want to let you know that I have been contacting other hospitals to get them involved in your program. I feel very strongly about what you are doing and the encouragement that you are giving every child that starts a strand.
Thank you so very much,
Maude Miller
article
Beads of Courage track kids' fight with cancer
Brent Whiting
The Arizona Republic
March 26, 2005
For children battling cancer, there is a different story behind each bead
in their "Beads of Courage" collection.
Blue ones represent each trip to the cancer clinic, red for a blood transfusion,
brown for loss of hair, white for chemotherapy and glow-in-the-dark beads
for radiation treatment.
And the list goes on for 17 more colors, including a final "Purple Heart" bead, representing the end of treatment.
For doctors, nurses and patients at Phoenix Children's Hospital, it's a way of marking big milestones as kids fight back against a deadly disease.
Last week, about 40 children gathered at the hospital for a party marking the first anniversary of the Beads of Courage program.
One of them, Hailey Osborne, an 8-year-old Peoria girl, proudly displayed two necklaces, a bracelet and a key chain that she has fashioned from the scores of beads she has collected while combating brain and spinal cancer.
Hailey,
a third-grader at Frontier Elementary School, said the beads help her keep
track of each step she has taken in the healing process since she was diagnosed
last fall.
"I get a bead every time I do something," she explained.
Hailey, an aspiring teacher, said the beads are a welcome reward for getting
better.
Another patient, Travis Vonende, 9, a fourth-grader at Copperwood Elementary School in Glendale, crafted his beads into a train design.
Travis,
whose cancer is in remission, said the beads now stand for his hope of becoming
a train engineer.
Tanya Radaha, 17, a leukemia patient and a junior at La Joya Community
High School in Avondale, has three strands with more than 150 beads.
"They show the progress of my treatment," Tanya said. "They symbolize what has been going on, such as whether I've needed a transfusion."
Her
mother, Cathy Knutson, 41, said the beads are small tokens when compared
with the big things they represent.
"I think it's a great program," Knutson said. "The beads help
give the kids something to look forward to, even though they're going through
a terrible time in their lives."
Beads of Courage was the idea of Jean Baruch, 30, a former nurse at Phoenix Children's Hospital now earning a doctoral degree in nursing at the University of Arizona.
"We have artists from all over the world who donate hand-made glass beads to the program," Baruch said.
Beads of Courage was adapted from a similar program at a hospital in
Vancouver, British Columbia, Baruch said.
She now is assisting two California hospitals, in Santa Barbara and Oakland,
to start up their own bead programs, something she hopes will become a
national movement.
The bead idea followed research showing kids get discouraged when they
complete cancer treatment, thinking they have nothing to show for their
ordeal, Baruch said.
The beads become a tangible symbol of their life-and-death struggle, she
said. It's something that can be shared with other people.
"We have moms
who are wearing their child's beads to work," Baruch
said. "It lets them communicate with co-workers and family members what
they're enduring."
Cheryl Stoneberger, 44, an oncology nurse at Phoenix Children's Hospital,
said she hopes the kids will keep their beads throughout life.
"When
they conquer cancer and face new challenges, they'll be able to look at
the beads and say, 'Hey, I got through that, and I can get through this,' " Stoneberger
said. "Over the long term, the beads are going
to be an asset."
Pat Shannahan, The Arizona Republic
Eight-year-old cancer patient Hailey Osborne of Peoria rests her head
on her cousin, Tawni Otterman during the Beads of Courage party at Phoenix
Children's Hospital.
article
Beads help children fight cancer
Alice Korach
Founding Editor, Beads & Button Magazine
May 24, 2005
Beads of Courage (www.beadsofcourage.net) is a wonderful program that
was started at Phoenix Children’s Hospital by Jean M. Baruch, RN, BSN.
It touches the lives of children undergoing treatment for cancer in a very
personal and beady way.
When a child enrolls in the program, he or she is given a length of stringing material and the alphabet beads that spell out his first name, along with a membership card and pamphlet that explains the meanings of 22 different bead colors that will serve as markers and milestones for every step of his battle with cancer. For example, a blue bead is given to the child to commemorate every visit to the cancer clinic, red beads stand for blood transfusions, glow-in-the-dark beads for radiation therapy, and so on. A child also receives special, larger, one-of-a-kind beads to mark “Acts of Courage” milestones, such as a bone-marrow transplant (the donor also receives an “Acts of Courage” bead). The goal is that every child’s strand end with a purple heart bead to celebrate the successful end of his treatment.
article
Beads help children fight cancer
Sharon Peters
Profitable Glass Quarterly
Summer 2006
article
Beads
of Courage - Supportive care gets a new tool, and it’s
a beaut!
Children’s HandPrints is a publication of Children’s Hospital & Research
Center at Oakland, CA
Summer/Fall 2005
Kids with cancer endure countless probes, injections and
tests. It takes courage and resilience to get through the treatment. They should
get medals. The new Beads of Courage program at Children’s Hospital & Research
Center at Oakland does just that. Patients are awarded beads for each procedure
or treatment milestone. By the end of their treatments, kids have a strand
of colorful beads, a map of their journey to good health. “To see Patricia’s
history visually like this is pretty overwhelming,” says Dina Macdonald,
mother of 3-year-old Patricia, while studying her daughter’s first
strand of beads. Patricia has earned enough beads for at least two strands,
including 33 red beads for 33 blood transfusions, 100 white beads for 100
days of chemotherapy and 8 glow-in-the-dark beads for 8 radiation
treatments. There’s also a special hand-made glass bead to
acknowledge the day Patricia met Sam, a special friend in her unit, and a blue
glass bead for a particularly courageous day. “That’s when we got
over our pity party,” Dina remembers.
Silly Mommy: Patricia shares a light moment with mom.
The 3-year-old has earned enough Beads of Courage to fill
two full strands.
link to pdf of newsletter
Children's
HandPrints
Hospital program focuses on kids undergoing treatment for cancer
Billings Gazette, June 21, 2006
By Suzzanne Kydland Ady
James Woodcock, Gazette Staff
Alan Loomis shows his off the "Beads of Courage" he has collected from
each procedure during his cancer treatments.
Through the new Beads of Courage program at Billings Clinic, kids undergoing
treatment for cancer collect colorful beads -- one for each medical procedure
they undergo.
"We start them with beads to spell out their name," said Sarah Blackburn, a pediatric social worker at the hospital. "The ideal time to start is about a month after they've been diagnosed with cancer."
Who knew a handful of beads would have such a huge impact?
Well, for one thing, we're not talking about a handful of beads. Or a string of beads. Or even a long string of beads. Alan Loomis, who was diagnosed last year with Philadelphia chromosome-positive acute lymphocytic leukemia, a rare form of cancer, has collected several hundred beads.
A story to tell
And since Loomis decided to string his in chronological order, he can pretty
much tell you the story behind any of them.
For every clinic visit, Loomis gets a blue bead. When a nurse starts an IV or does a blood draw, he receives a black bead. Overnight at the hospital? Yellow.
But these procedures get tougher for someone who hasn't yet celebrated his 14th birthday.
Each course of chemotherapy earns Loomis a white bead; hair loss gets a brown; tests or scans, light green.
For milestones, such as an act of courage or a bone marrow transplant, the Lockwood teenager gets to select a special glass bead. When Loomis completes his treatment in about a year, he'll receive a purple heart.
The nonprofit Beads of Courage curriculum was the idea of Jean Baruch, a former nurse at Phoenix Children's Hospital earning a doctoral degree in nursing at the University of Arizona. The program was adapted from a similar one in Vancouver, British Columbia.
According to Baruch at www.BeadsofCourage.net, the theory was prompted by research showing children may get discouraged after completing cancer treatment if they have nothing to show for their plight. The beads become a tangible symbol of their life-and-death struggle, she said, and it's something that can be shared with others.
"There's a lot of history behind beads," Blackburn said. "The word 'bead' actually meant 'prayer.' And throughout history, beads have often been used as a badge of honor."
Blackburn traveled to Arizona last summer to learn more about Beads of Courage, and implemented the program in Billings in March. Initially, Billings Clinic paid a membership fee and received the first of many shipments of beads.
The glass beads, Blackburn said, are often handmade and donated from beadmakers and artists all over the world. Just as the beads are unique, so is each child's journey through cancer treatment.
James Woodcock, Gazette Staff
Pediatric social worker Sarah Blackburn helps cancer patients Alan Loomis
and Rylie Kaiser, who's in remission, pick out "Beads of Courage."
Participation growing
Blackburn said Billings Clinic is the only place in Montana participating
in the Beads of Courage program, but more hospitals and medical clinics
around the United States are joining all the time. Billings Clinic has
18 patients signed up thus far.
"Jean Baruch is developing this as a research-based program," Blackburn explained. "All of the information I gather here will be part of her study."
Lots of kids do more than string their beads together. Blackburn knew of a boy in Arizona who glued his bead collection to his soccer ball; another patient put hers under glass in a coffee table. Some kids will may keychains, or hang their beads from IV poles when they stay in the hospital.
But the point isn't always what is done with the beads -- just that they signify a journey.
Loomis' mother, Tammy, feels the projects become like badges of honor for the patients.
"Since everyone's story is so different, all these beads are different and unique," she said.
Blackburn, who goes through the patients' medical records and correlates the beads for every procedure and milestone, said other bead programs -- one just for siblings and another for the whole family -- are in the works.
"This is a great intervention for these kids," she said. "It's something that can enhance the relationship between providers and patients -- and patients and their families."
Blackburn did reveal a very special bead presented to families of those patients who lose their cancer battle: a butterfly.
Beads provide courage to young cancer victims
The Record, November 20, 2006
By: Kathryn Caggianelli
ALBANY - Memphis Teal is an exuberant 2-year-old who likes to eat nacho chips and watch PBS's "Dora the Explorer" while he waits for his weekly blood work and chemotherapy. He's not too keen on sharing the messy cheese snacks, but his mother, Amsterdam resident Chauntel Kile, is willing to indulge a little bit of selfishness.
"We used to take everything for granted, and now we don't," she said.
The toddler was diagnosed Aug. 21 with Wilms tumor, also called nephroblastoma; a form of kidney cancer that is largely curable. An annual physical revealed a lump in Memphis' stomach that turned out to be a grapefruit-size growth inside his kidney. The diagnosis came a week after his second birthday.
"I felt like the walls were closing in on me when I found out. I had
to get out of there," said Kile, the mother of two sons.
Ordinarily, the waiting room at the Center for Hematology and Oncology at
Albany Medical Center's Children's Hospital is an upbeat, colorful place
boasting tables of arts and crafts and any other number of activities for
youngsters to lose themselves in between check-ups and painful treatment
regimens.
But an acronymic poster of the alphabet, obviously drawn by a child,
tells a somewhat different story about the trials that lie ahead: A is
for ambulance; B is for bactria (bacteria); L is for lost hair; P is for
pulse oximeter; R is for rest; S is for stethoscope; U is for urin (urine),
to list a few.
Memphis is no stranger to pain and anxiety. A colorful string of beads
that he sometimes clasps in his chubby fists during procedures represents
just how challenging his journey back to health has been.
"He may be a little too young to understand what the Beads of Courage
stand for," Kile said.
He's already endured surgery to remove the tumor, a kidney, his adrenal glands
and fatty tissue.
Memphis will get at least one new bead each week. The beads' color and texture
represent anything from thinning or lost hair (a brown bead) to surgery (a
silver bead) and can be likened to a warrior's trophy, said Jeff Yule, executive
director of Ronald McDonald House Charities at 139 South Lake Ave.
"These beads almost turn their treatments into a source of pride. ...
They help them tell their story and give them some perspective and a little
confidence," he said.
It's not uncommon to find a patient with a strand of beads as long as a jump
rope. Beads of Courage mark milestones in a young cancer patient's treatment
plan. For instance, they earn a special bead to commemorate 100 blood tests.
"These beads represent to me the physical demands of what the kids go
through," said physician Jennifer Pearce, who is likewise associate
professor of pediatrics and clinical director of pediatric oncology at the
Children's Hospital.
It's their way of saying 'I did this and I'm great, she said.
Wilms tumor is the most common type of kidney cancer found in children.
"It's one of the first childhood cancers that the medical community
has made great progress in curing," Pearce said.
Memphis has a better than 90 percent chance of making a full recovery.
The Beads of Courage program was introduced at Albany Medical Center Hospital in May and was developed in partnership with Ronald McDonald House Charities of the Capital Region, Inc., Albany Medical Center and the Leukemia & Lymphoma Society of Upstate New York/Vermont Chapter.
Many of the kids who visit Ronald McDonald House are served by Albany Med and the Leukemia & Lymphoma Society of Upstate New York/Vermont Chapter. Ronald McDonald House Charities funded a two-year grant through its community grant program to bring the Beads of Courage to AMC, making the hospital the first on the East Coast to adopt the program. It was first piloted in Phoenix Children's Hospital in 2003 and was the brainchild of Jean Baruch, a pediatric oncology nurse. More than 1,000 children are participating in Beads of Courage nationwide.
ACH Cancer Patients Find Healing and Excitement in Bead Collections
Arkansas Children's Hospital Public Relations,
August,
2006
LITTLE ROCK, AR. (August, 2006) – Chase Wellenberger’s collection of smooth plastic and glass beads represents more than a hobby. They’re like a scrapbook that tells the story of his long journey, which has ended once and started again.
Chase, an 8 year-old patient at Arkansas Children's Hospital (ACH), has leukemia. The Little Rock resident has undergone chemotherapy, been in and out of the hospital and endured dozens of tube insertions. And for each of these procedures, Chase has received a corresponding bead through the hospital’s new Beads of Courage program.
“He was very excited just to have something to show what he’s been through,” said Carrie Wellenberger, Chase’s mother. “We’ll get a bead to explain just about everything that’s happened.”
After children are diagnosed with cancer at ACH, their parents can choose to enroll their young patient in the program, which is run through a Phoenix-based non-profit organization. ACH is the fourteenth hospital in the nation, and the only one in Arkansas, to offer the program.
After diagnosis, the child is given beads that spell his or her name. Then,
he or she receives beads in special colors for a variety of experiences.
A yellow one is given for an overnight stay in the hospital. A red one is
presented when a child undergoes a blood transfusion. A bead that glows in
the dark represents radiation treatments. When a child loses hair, he receives
a brown bead.
Chase Wellenberger, age 8, of Little Rock, picks out lettered beads to
spell his name to start his Beads of Courage collection at Arkansas Children's
Hospital. Photo by Kelley Cooper.
“When a nurse is with the child, the nurse will take that box in and sit down with the child and talk about everything that has gone on that day,” said Kay Kirk, R.N., the nursing manager over the cancer unit. “It reinforces the accomplishments they are making, but also reminds them that for every step they’ve taken, they’re that much closer to their goal.”
Nurses, social workers and child life specialists give the children their beads after the procedure is over. They refer to this as going “beyond the sticker.” A sticker is disposable, but the beads are long-lasting and carry a special meaning.
“The patients have all been very excited,” said Carrie Calhoon, an ACH Social Worker in Hematology and Oncology. “They ask for these all day long and it is the highlight of their day to receive them.”
The program is funded for the first full year through a special fund set up for the cancer unit. Funding for the following year will be provided by proceeds from a golf tournament set up by 10-year-old Little Rock resident Lexi Acuff, who had two friends who battled cancer.
“She liked the beads, and she liked the idea that it tells a story,” said
Barbara Acuff, Lexi’s mother. “It was a lot of work, but well
worth it.”
Xavier Cole, age 6, of Little Rock, shows off his Beads of Courage necklace
at Arkansas Children's Hospital. Photo by Kelley Cooper.
Xavier Cole, age 6, of Little Rock, shows off his Beads of Courage necklace
at Arkansas Children's Hospital. Photo by Kelley Cooper.
ACH patients showcase their beads in different ways. Some string them together and hang them from their IV poles, others craft them into necklaces or store them in decorative containers.
For ACH patients who have been battling cancer for several years, special decorative milestone beads are available which indicate the child has been through hundreds of procedures. Chase, who was diagnosed with leukemia when he was 4 years old, ended his treatment and later relapsed. He will soon have more than 1,800 beads.
Chase is considering hanging his beads in his room, near his favorite purple button, which reads “Survivor.” His mother knows which bead Chase wants most. It’s a one-of-a-kind bead, hand-crafted into a purple heart. It means the recipient has reached the end of his treatment.
“We already have one purple heart,” Carrie Wellenberger said. “We hope to get a second one someday soon."
note:
Arkansas Children's Hospital is the only pediatric medical
center in Arkansas and one of the largest in the United States serving
children from birth to age 21. The campus spans 24 city blocks and houses
290 beds, a staff of approximately 500 physicians, 80 residents in pediatrics
and pediatric specialties and more than 3,600 employees. The private, nonprofit
healthcare facility boasts an internationally renowned reputation for medical
breakthroughs and intensive treatments, unique surgical procedures and forward-thinking
medical research - all dedicated to fulfilling our mission of enhancing,
sustaining and restoring children's health and development. For more information,
visit www.archildrens.org.
Little bits of bravery
"Beads of Courage" recognize the painful battles fought by the
youngest cancer patients
Star Bulletin, September 18,
2006
By Katherine Nichols
Editor's note:
Alyssa Miller died on Thursday, just after this article was completed. Her
parents asked that it run in its original form, to recognize the courage
she showed in her short life and to acknowledge the hope that Beads of
Courage can offer to other children with cancer.
CINDY
ELLEN RUSSELL
Alyssa Miller's Beads of Courage, awarded after each procedure or accomplishment
in her cancer treatment, are threaded on a strand nearly 30 feet long. Alyssa's
parents, Marv and Maude, say her beads are precious to her.
Seven-year-old Alyssa Miller already has endured more than most people do in a lifetime. Diagnosed with a Wilms' tumor in 2004, she has survived 12 surgeries -- including the removal of both kidneys, a liver resection and open heart surgery -- three rounds of chemotherapy and dialysis three times a week. Medications have caused a hearing impairment, and there's an incision that still hasn't healed five months after surgery. Following her latest health crisis, which included 11 weeks in intensive care, she lacks the strength and energy to walk, and allows her parents to transport her to and from the hospital in an oversize stroller.
"We've taken a very active part in her treatment," said her father, Marv Miller. "Part of that is because you feel so helpless. You try to find ways to bring a smile to her face, but some days, you just can't."
What always seems to bring a smile to Alyssa's face, however, is her bead collection. When the nurse presents a variety of beads for her to choose from, Alyssa's shoulders straighten, a grin emerges, her eyes sparkle and she breaks her silence with questions about how many she has earned this time.
Alyssa's mother, Maude Miller, said that Alyssa normally lays out all of the beads and narrows her selection to eight or 10. The process can take up to an hour, with mother and daughter conferring along the way.
It's all part of a program at Kapiolani Medical Center for Women & Children called Beads of Courage, started in May for pediatric oncology patients, "to acknowledge and honor what they're going through," said nurse Pam Carey-Goo, the pediatric clinical coordinator. The 50 to 60 participants range from babies to age 22. Initiated by Jean Baruch, a nurse in Arizona, Beads of Courage is used in 10 hospitals nationwide, but Kapiolani is the first in Hawaii.
The first thing young patients do is spell out their names with lettered beads. Then they choose a small, round glass bead for each procedure, special accomplishment or event. If they receive chemotherapy, they earn a certain color bead. For radiation they get a glow-in-the-dark bead. There's a different one for staying in the hospital, and especially difficult events, such as losing one's hair, call for a custom-crafted bead in the shape of a head -- with hair.
On the last day of therapy, they select a handmade purple heart of courage bead. To accommodate youngsters who had begun their regimen before the program started, nurses sat down with parents and added up the procedures, so each patient could create a strand that accurately depicted his or her course of treatment.
"This is something that has helped Alyssa," said Carey-Goo. "It's important to her."
Kids string their beads on a black silk cord, to use as a necklace if they wish. But for most the collections are far too long to wear. Some teenage boys have glued theirs to a basketball or a train set, or placed them on wire to create a sculpture. No matter how they are exhibited, the beads become tangible displays of their owners' harrowing journeys.
CINDY
ELLEN RUSSELL
Cheye Mokuhalii, 11, holds two beads he earned after undergoing treatment
for Stage 4 Ewing's carcinoma. Cheye has collected more than 200 beads through
the Beads of Courage program and says he will keep them even after he gets
well.
Kapiolani hopes to start a pilot project with siblings, giving them beads to "symbolize how they're helping and what they're going through," said Carey-Goo. Brothers and sisters would collect their own, plus get an additional bead to give to the sibling with cancer, so they have matching sets. A red heart bead starts the set for people who do not have cancer but are involved. This includes professionals at the hospital.
"Nurses and other staff members are going through a lot, also," said Carey-Goo. "They fall in love with these kids. And I feel they need to be acknowledged for what they do and what they're feeling."
Beads of Courage was a success from the start. "Usually we present staff with new things, like computerized charting," said Carey-Goo. "But this program they embraced right away, and they're very busy." Physical therapists -- whose sessions can be especially difficult for kids suffering from serious illness -- have found the beads to be an extremely helpful source of motivation.
"I was thinking, 'This is kind of nice for the kids, and they'll have fun with it,'" recalled Larry Taff, who donated funds to start Beads of Courage with his wife, physician Kheng See Ang. "But it was so touching. We were all choked up. It's much more significant than we thought it would be in terms of how the kids and the nurses feel about it."
Carey-Goo agreed. "It's like, 'Look what I've been through.' It's very visual."
One glance at Alyssa's strand, which stretches nearly 30 feet, makes that clear. Actually, it should be longer because she has more than 2,600 beads for dialysis (depicted with 26 beads representing 100 each). "Her strand is beautiful, and it really symbolizes her fight against cancer," her mother wrote in an e-mail. "The great thing about this program is that every child who takes on this fight is able to see a physical representation of all that they have been through."
CINDY ELLEN RUSSELL
Pam Carey-Goo, pediatric clinical coordinator at Kapiolani Medical Center
for Women & Children, says the beads symbolize what each child has gone
through during treatment.
Cheye Mokuhalii, 11, lives on the Big Island but travels to Oahu regularly with his grandmother June Kropfelder to treat a Stage 4 Ewing's carcinoma that began in his lower back.
"I used to be in a lot of pain, but chemo has been helping," he said from the lounge in Kapiolani's Pediatric Ambulatory Unit. "I couldn't sit down. I had to stand up all day at school, and I couldn't go in the car."
Most of his beads remained at home on the Big Island with his family, but he was happy to share details. Mokuhalii said he'd earned one for losing his hair and eyebrows. And tube insertions? "I got a lot of those," he said. "(The strand) helps me remember the hard times. It helps me be proud of myself because I did something I never wanted to do."
On a particularly difficult occasion -- when doctors told him the chemotherapy wasn't working after his first round -- he earned a bead with bumps on it, representing an unusually bumpy time.
"We try not to use it as a reward system, but rather as a recognition system," said Brenda Maglasang, a nurse who has worked with pediatric oncology patients for 12 years. "But the beads are more than a diversion. It's also a way for kids to really communicate what they've been through," especially to those who don't understand why patients can't come to school, play outside or be around anyone with a cold.
Did he plan to keep the strand of beads forever? "Yeah," said Mokuhalii. "In the future, I can look back and say, 'Wow, look what I've done.' It means a lot."
"You can actually see that you were brave," his grandmother added.
Maude Miller concurred. One day, she said, this strand "is going to mean a lot to Alyssa." To her parents, it already does.
stories of courage:
Tanya - Leukemia patient meets Kelly Clarkson
Hello, my name is Tanya, I'm 17 and was diagnosed with Acute Lymphoblastic Leukemia. I was diagnosed one month exactly after my Sweet 16… a time that was suppose to be the time of my life, right?!? WRONG! Instead I spent my time going to my cancer clinic at PCH [Phoenix Children's Hospital] going once a week, and was hospitalized 3 different times for a total of about 7 weeks. When I was offered to be in this program at first all I was think was "GO AWAY, LEAVE ME ALONE, LET ME SLEEP!" After thinking about it and talking with the wonderful nurses at PCH I thought having a tangible object which I can show everyone including my kids in the future is a WONDERFUL idea. Many children coming out of cancer don’t have anything to show for everything they went through. I have 4 strands, with over 300 beads, and am still going, my off treatment date is not until August, 2006, and I plan to still be getting all my beads until I get my Purple Heart (the best one)!!
Always,
Tanya
Tanya
and Kelly Clarkson
Tanya with new hair!
September 2005
Tanya with Santa
December 2005
Tanya with niece Jacy
December 2005
Phoenix Children's Hospital
One-Year Celebration
Honoring Box Workshop
The Honoring Box workshop is a Beads of Courage, Inc & The Bead Museum Partnership
Program
Photos from the workshop for parents and siblings at Phoenix Children's
Hospital November 3, 2005.
A hands-on workshop for parents and siblings of children in active treatment.
During the workshop participants are encouraged, while in a sympathetic and creative
environment, to use the boxes and materials provided to communicate
and reflect upon themes of personal challenges and achievements in life.
The completed Honoring Box serves as a material expression of protection,
self honoring, courage and spirituality.
Cancer survivor
Alyssa - Cancer patient in Hawaii at the Kapi’olani Medical Center.
Her string reached all the way down the hallway!
Aloha,
Here are three pictures of Ruth and her Beads of Courage. Ruth started her Beads of Courage the day after her stem cell harvest in April 2006. She acknowledged her beads each time she earned them but had Mom pick the beads out and string them on her necklace. Ruth just did not want to handle the beads until Sept. 2006 the day after her second major tumor removal surgery. Nurse Jill came into Ruth's room and worked with Ruth on picking out two special beads for her two major surgeries. From that day forward Ruth took charge of her beads. It was a big turning point. Many times Ruth has restrung her beads, remembering each one. The pictures are from her stem cell transplant Nov. 2006. She earned so many beads because there was so much going on. Again nurse Jill worked with Ruth during the most difficult part of her total treatment. The Beads of Courage program has helped Ruth deal with her neuroblastoma. It was there all through her treatment and even relapse before transplant. Ruth has had opportunity to show her beads, now over 700 off at many different places like a fundraiser she did for her preschool teacher's son who just relapsed with his cancer, at the Ronald McDonald House and now the Relay for Life Waimea at her team LumpBusters. When people first see the beads they are in awe. A couple of months ago Ruth's brother Thomas and sister Rebekah started their sibling beads through a partnership with Beads of Courage and Super Sibs. Thank you Beads of Courage for such wonderful programs to help our family.
Aloha, The Mersburgh's
Daniel, Charlene, Thomas, Rebekah and Ruth
www.caringbridge.org/visit/ruthmersburgh
©2007 Jean M. Baruch