®
Bravery Beads Color Guide
Salmon
Emergency\Ambulance\Unusual Occurrences
White
A course of Chemotherapy
Fuchsia
Tests/Scans (EEG,ECG,ECHO,MRI,CT PET, Bone
scan, Gallium and so on.
Teal Blue
Tube insertion (n.g.,chest, catheter)
Black
Pokes
Grape
Dopamine\Morphine infusions\Sepsis
Bone
Bone Marrow Biopsy
Cinnamon
Lumbar puncture
Dark Blue
Sleepover at the hospital
Brown
Hair loss
Red
Transfusion of blood products
Green
Stem Cell Harvest\Dialysis\TPN
Maroon
A Good Day!!!!!
Yellow
A Terrible\Horrible\Very Bad Day!!!
Glow in the
Dark
Radiation
Round Ceramic Surgery
Fancy Ceramic
Transfer tic ICU
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Glass or Femo
Bone Marrow Transplant
Other Bravery Beads currently available or under development:
Ronald McDonald House
Teen Adventures
Canuck Place
Camp Goodtimes
Stringing A Story – A Bead Program for Children with Cancer
History:
This ides came about our pediatric oncology social worker‟s teenage son
returned from a wilderness camp with a string of beads that commemorated
milestones achieved during a long and meaningful trip. She was struck by
how much he valued the string of beads and how easily he was able to
review the stories of his experiences, each one signaled by a different
colored bead. These small but concrete and significant symbols of his
accomplishments were obviously very precious to him. He saw them as
medals or badges of courage.
The social worker theorized that the children who have to travel the difficult
journey through the chemotherapy, radiation and surgical treatments for
cancer would appreciate and enjoy making up such a beaded necklace as a
well. The idea was mentioned to the oncology team and a small „task force‟
was organized to explore the feasibility of putting a program in place. Some
beads were obtained and a small pilot study was done with a few children of
different ages to see what the interest would be. The children were
universally enthusiastic. The idea of such a bead program was also presented
at a Candlelighters conference, and received an excited response from
parents, children and health professionals.
In January of 1999, the bead program now known as „Bravery Beads‟ was
launched throughout the Oncology\Hematology\Bone Marrow Transplant
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Service at British Columbia‟s Children‟s Hospital. Bravery Beads has taken
on a life of its own, its powerfulness taking on proportions that none of us
dreamed of.
Implementing the ‘Bravery Beads’:
Bravery Beads was presented to staff, patients and parents as a program
designed to document and honor the journey that children take when they
are diagnosed with cancer or a related disease. We stated that this is meant to
be fun, and a chance for children to tell their story using colorful wooden
beads as meaningful symbols of the many points along the treatment path – a
chance to portray their experience in a tangible and visual way.
Key Steps in the Creation of Bravery Beads
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Obtain funding for the program
Recruit volunteer help
Purchase supplies
Organize storage boxes for beads
Info sheet for patients, families and staff
An explanatory one-page fact sheet for patients, families and staff was
composed. The task force devised a color chart, indicating which color of
bead signifies which type of treatment. Posters were designed and placed in
all oncology areas around the hospital. The program was presented at a
nursing in-service where nurses were encouraged to create their own
necklaces in any way they found significant. Some made up necklaces that
signified their own medical history, some added beads that represented their
areas of expertise, some made them up just for artistic expression.
How it Works
Each child being treated in our program is now given a length of colored
cotton twine strung with beads that spell his\her first name. The colored
beads, each representing a different aspect of treatment and care, are
available to add to the necklace. For example, a white bead represents a
course of chemotherapy, a blue bead is for a „sleepover‟ in the hospital, and
a colorful ceramic bead is given for a terrible, horrible, very bad day.
Containers with the different beads and what they mean are placed in the
inpatient and ambulatory settings. Each time a child has a procedure,
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chemotherapy, surgery, radiation etc., and he\she is given a bead to add to
their necklace. Parents create and wear the necklaces for children who are
too young to appreciate the meanings of the beads or for whom the beads
may present a hazard.
The program is, of course, completely voluntary and children can stop at any
time if they choose not to participate. The program is also entirely flexible.
If a child wants to collect beads in a different way, they are encouraged to
alter the program in any way that better suits their unique story.
Challenges Faced in Launching the Program:
The first hurdle in starting up Bravery Beads was funding. The
Oncology/Hematology/BMT Program at BC Children‟s Hospital serves the
entire population of the province of British Columbia and the Yukon
Territories with a population base of approximately 3.5 million. We have
approximately 150 new diagnoses of childhood cancer a year, and at any one
time about 350 children on active treatment and 1200 on follow up
treatment. The oncology program employs about 120 medical and allied
services staff.
We initially anticipated that we would start Bravery Beads in January of
1999. We quickly realized, however, that the children did not want to have a
necklace that only told a portion of their story, they wanted to „backtrack‟
and add beads that signified the part of their treatment they had already
endured. Even children on follow-up treatment wanted to review their
treatment story and make up symbolic necklaces.
Dollars and Sense:
The start-up costs of making necklaces for approximately 1000 individuals
(all children on active or follow-up treatment plus all staff, plus additions we
will speak of later are significant! We budgeted and spent about ten dollars
per child or ten thousand CAN dollars for the first year of Bravery Beads.©
We received our funding from three sources. We have a charitable
organization called the Walkathon for Kids with Cancer Society that raises
funds for the exclusive use of our families, the funds allocated as needed by
the oncology social workers. This organization has donated approximately
four thousand dollars to the program. We have another hospital based fund
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composed of donations made to the oncology service on behalf of various
patients, to be used for „patient services.‟ We have drawn money from that
fund. Thirdly, the bead store (Country Beads) in Vancouver BC has also
donated some of the supplies outright and given a substantial discount on the
rest.
A second hurdle to overcome was manpower. Implementation of our
program was delayed for some time in order to devise a system of
organizing and delivering the beads and necklaces that did not seriously
impact on the workload of staff. We overcame this hurdle by recruiting
reliable volunteer students from Sunrise East Alternate Secondary School
and adult volunteer help from the Red Cross. We made up more than 20
boxes of beads (using tackle boxes purchased at Canadian Tire.) Each tackle
box has 24 compartments giving ample space for the assortment of beads
that needed to be readily available to children when an out or in-patient.
Several Bravery Bead stations located around the hospital help to facilitate
staff participation in handing out the beads.
We also call on the parents/guardians of out patients to take part in the
collection of beads for their children. As the Bravery Bead stations are
readily accessible it encourages everyone involved in a child‟s care to assist
them in (as some have called…” the building of my totem pole.”)
It has been heartening to see that there is little or no „cheating‟ or greediness
happening – our families want to make up necklaces that reflect an accurate
story of their journey.
The increased workload in unavoidable and this stems from the practical
side of the supervision of volunteers, organization of supplies, bill payment
and making up necklaces for each newly diagnosed child. This is currently a
team effort on the part of the child life specialists, social workers, volunteers
and the patient\parent advocate in the oncology program. The importance of
a well staffed Child Life department to oversee a program like Bravery
Beads cannot be stressed enough.
Results\Evaluation\Feedback:
Bravery Beads continues to generate an incredible amount of enthusiasm
from staff, parents and children. The simplicity of the program belies the
powerfulness of the process for families, children and staff.
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Starting a beaded necklace has become one of our introductions to the
journey of cancer treatment. The nurses wear their beads every day, and
putting the first beads on a necklace with a new child somehow bonds the
family and staff. It feels like a „buy in‟ or signal of commitment to the
treatment plan. The children or parents wear the necklaces very proudly. It
seems that wearing the necklaces a sense of belonging to the group and
acknowledgement of facing the battle, step by step.
The children that have very full necklaces (and sometimes two or more)
show them off with pride saying, “Look at my story- look what I have
done.”
Would You Agree That ? …:
… Children think concretely and are visual by nature. Gathering a few more
beads is a small but significant reward for a child when s\he has to come to
the hospital again and again for treatment. By giving a small visual prize, we
acknowledge the courage it takes to come and see us. As we add to the
necklace recognize the length, complexity and uniqueness of each child‟s
experience. Some of the parents say that adding the bead for a particular
procedure tells them they are one step closer to the end of treatment.
Of course, the beads are fun and pretty – something for us to give, and do
with, the children that is not uncomfortable or hurtful. Our staff has some
fun with the beads among themselves as well. Necklaces have been made for
staff using amusing nicknames. New ideas for different categories of beads
are often suggested. The beads have, is some way, lightened the heaviness
that can prevail on the cancer ward.
The easiest way to describe the symbolic nature and powerfulness of
Bravery Beads is by recounting stories of some of the events that have taken
place in connection with the program.
I. Rosemary
Rosemary was a five – year old girl who was being treated for Stage
IV neuroblastoma. She had rounds of intense chemotherapy and
surgery, and was in the middle of a stem – cell transplant when she
died of sepsis in our intensive care unit. She was one of the first
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deaths after we started Bravery Beads, and as I left her grieving
parents I saw her necklace sitting on top of their pile of belongings. I
wondered what would become of the necklace. Would her parents
angrily throw it away? What meaning would be attached to it at this
point?
The Next morning, a Sunday, Rosemary‟s father returned to the
oncology ward alone, wearing Rosemary‟s necklace. He tearfully
asked the nurses if it would be possible for him to have the bone
marrow transplant bead, to signify the marrow she received the day
before she died. He also asked for the ICU bead to complete her
necklace. He appeared to need to have completion in the tangible
memory of Rosemary‟s struggle.
There was an article about Rosemary and her family in the newspaper
after her death. Mention was made of the beaded necklace that her
mother wears, and how it recounts that Rosemary bravely endured.
2. Mark:
I attended the funeral of 15 – year old Mark who died of metastatic
osteogenic sarcoma after two years of treatment. I had made two full
necklaces with Mark and his mother just a couple of months before,
carefully retelling his enormously courageous story step by step. At
that time Mark knew he was dying and he and his mom were tearful
as they visualized and relived the magnitude of what he had
experienced. At that time Mark said, “This is fun, but isn‟t it a shame
that I went through all this and it didn‟t work?”
At his funeral there was around table with many of his belongings
displayed. On a small raised central platform sat his beaded necklace
and an explanatory letter by his mother. She explained how the beads
symbolized the bravery of her son; the story of all her family and what
they lived through and how proud she was of all of them.
3. Dan and Jonathan:
Dan was the chairman of our Walkathon for Kids with Cancer
Society. His son Jonathan died of neuroblastoma in 1993. When we
first spoke of a bead program, and the part the Walkathon could play
with funding and volunteer help, we decided to put together a sample
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necklace. Dan suggested we make one for Jonathan. Over the course
of an hour or more, Dan recounted Jonathan‟s story, and we journeyed
through it again together, stringing the beads onto the cotton twine.
Dan has said that hour was extremely powerful to him, and Jonathan‟s
necklace sits proudly in his home. He told me a story of how one day
he arrived home from work to find his teenage daughter vacuuming
the house. Around her neck were Jonathan‟s beads. When asked why
she was wearing the necklace, she replied, “Well there‟s not much to
think about when you‟re vacuuming, so I thought I would think about
Jonathan.”
Expansion of Bravery Beads:
We continue to expand Bravery Beads in a few different ways:
 We have three children currently being treated on our service who
have a parent who is also undergoing cancer treatment. It seemed
natural for both parent and child to make up necklaces together.
 We also have many siblings that are having a difficult time
managing the changes they have to endure while a brother or sister
is undergoing intensive treatment. Some siblings are in the hospital
constantly, or are at home alone constantly. Some are bone marrow
donors for their siblings. We have acknowledged these children by
making them a necklace as well. Some gather beads at the same
time as their sibling or some have made up a legend of their own.
 Other ideas for beads include one for Ronald McDonald House and
Canuck Place.
 Other beads under development include one for Teen
Adventures\A Spirit Quest and Camp Goodtimes.
 We are currently considering having a session of our bereaved
parents group where the parents make necklaces for the child they
lost or a necklace for a sibling.
 Since our local TV station did a small piece about Bravery Beads
on the news one evening, we have had many calls from social
workers, nurses and parents from many hospitals asking about the
appropriateness of a bead program for them. Calls and e-mails
have come from around the world asking about how to start
Bravery Beads in their facility.
For More information about Bravery Beads please contact:
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Dan Mornar\ Patient\Parent Advocate
Oncology\Hematology\BMT @ BCCH
604-875-2345 ext. 6477 fax: 604-875-2911
[email protected]
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BEADS!
BEADS!
BEADS!
We are pleased to present Bravery Beads
What are Bravery Beads?
Bravery Beads are designed to document and honour the journey that
children take when they are diagnosed with cancer or a related disease.
Bravery Beads is a chance for children to tell their story using colorful beads
as meaningful symbols of the many points along the treatment path.
How Do Bravery Beads Work?
 Children who receive treatment in our program, and who wish to
participate, will be given a length of colored cotton twine strung
with beads that spell out their first name.
 Colored beads, each representing a different aspect of care, will be
available to add to the necklace. Posters on 3B and in the
Oncology Clinic show examples of the different beads and what
they represent.
 Each time a child has a poke, or any procedure, chemotherapy,
surgery, a horrible day, or anything else on our list, their nurse or
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caregiver will present them with the corresponding bead to add to
their necklace.
Can Anyone Participate in Bravery Beads?
 NO!!! Only children who are part of our Oncology\ Hematology
\BMT Program. And only if they want to. Your child does not have
to participate is s\he does not want to, or you can stop at any time.
This program is meant only to be interesting and fun for the
family.
 Because the size of the beads can present a hazard to small
children, we ask that the beads for children under six years of
age be handled and worn by a parent or a guardian.
Please be careful to keep beads out of the reach of
young children who may try to swallow them.
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Nurses and Docs
Some points to remember about Bravery Beads
 Because the size of the beads can present a hazard to small children,
we ask that the beads for children under six years of age be handled
and worn by a parent or guardian. Please reinforce this request, and
remind parents if you see small children wearing a necklace or
handling the beads.
 You may have to remind parents that the beads and necklaces are
meant to be fun. They are not meant to be used as a reward or
punishment (i.e. please discourage parents from threatening to
disallow a bead if a child cries or acts out.)
 The children may want to „backtrack‟- i.e. fill up their necklaces with
beads they have already „earned‟ since the beginning of treatment.
Please encourage the children to do this if they wish. They may have
to make an estimate of the number of beads from the checklist. (We
don‟t want to be stingy – the beads are quite inexpensive.) Encourage
the children to make up their „chemo story‟ in the way most
meaningful to them.
 Please be flexible. If a child wants to use a different color, or needs an
extra bead- that is OK. This is each child‟s unique story – there are no
strict rules except around safety.
 If you want to join in the fun and make a beaded necklace of your
own, help yourself to the supplies and make a pretty necklace that will
encourage the children to take part.
 One final thought – there may be some disappointed siblings who
attend most of a brother or sister‟s treatments, and who may be quite
envious of the beaded necklace. We do not want to hurt any children
at all, or cause any family problems. If you think siblings can benefit
from a necklace, make them one. They can use their sibling‟s color
guide, or make up one more meaningful to their story of being on the
„team.‟
Please let Katiya, Helga or Dan know if you have any ideas that
will make Bravery Beads better.
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