Winter 2006 - Badger Childhood Cancer Network

In This Newsletter:
Pg 2
FREE Childhood Cancer Books
New Teen Book – send your stories
Pg 3
Holiday Party Photos
Pg 4
Peds Heme-Onc Hero Beads
Pg 5-7 Shining Your Light For Kids
With Cancer: Donor Honor Roll,
2005
Pg 7
Crop For Kids With Cancer
Pg 8
Ashley’s Med Box Update
Author’s Luncheon
Pg 9
News from the Candlelighters’
Office
Pg 10 World Cancer Day
Pg 11 Teleconferences for Parents and
Professionals
Capital Candlelighters
Winter 2006
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FREE Childhood Cancer Books
In partnership with the Lance Armstrong Foundation, our parent organization, the Candlelighters
Childhood Cancer Foundation, continues to provide copies of the following childhood cancer books to
families in financial need. Parents or survivors may choose one of the following books that best
applies to your or your child’s cancer diagnosis. Please send your request to:
Candlelighters Childhood Cancer Foundation
PO Box 498
Kensington, MD 20895-0498
Fax 301-962-3521
• Nancy Keene, Childhood Leukemia: A Guide for Families, Friends & Caregivers
• Honna Janes-Hodder and Nancy Keene, Childhood Cancer: A Parent's Guide to Solid
Tumor Cancers
• Hobbie, Keene and Ruccione, Childhood Cancer Survivors: A Practical Guide to Your
Future
• Shiminski-Mahar, Cullen and Sansalone, Childhood Brain and Spinal Cord Tumors: A
Guide For Families, Friends and Caregivers
Thanks to the LANCE ARMSTRONG FOUNDATION for their financial support
of this very important program!
Attention: Teens with Cancer!
Candlelighters Childhood Cancer Foundation is collecting personal perspectives
for a new book on Teens With Cancer. If you would like to share your personal
stories, treatment tips, thoughts on traveling to treatment, friendship, comfort,
experiences getting through treatment while living the busy life of a teen or
other thoughts, please submit them for possible use in the new book.
We’d also like to hear stories of what didn’t work, things that bothered you and
things you’d like to see changed. Share your journey with others by submitting
your work along with your contact information to Teen Book, CCCF, 3910 Warner
St., Kensington MD 20895
Capital Candlelighters
Winter 2006
Scenes from the Candlelighters’ Holiday Party
December 10, 2005
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Capital Candlelighters
Winter 2006
Peds Heme-Onc
“Hero Beads” Program
Capital Candlelighters is delighted to announce
that we have been successful in working with
staff in the UW Peds Heme-Onc department to
develop a “Hero Bead” program that will soon
be offered to every child and teen treated for
cancer and blood disorders. A very critical
piece in launching the program fell into place
in mid-January when we received word that the
Hero Bead program has been awarded a startup grant from the UW Cure Kids Cancer
Coalition Patient and Family Support Fund.
Hero Beads are designed to let kids and teens
with cancer and blood disorders commemorate
their personal journey in the form of a simple,
visible medical record. Every time that a child
or teen has a procedure—(see the list on the
right for examples) a member of their medical
team can provide them with a special bead to
add to their cord of beads that represents a
specific treatment or test he or she has
received. For example, a red heart bead
represents a red blood cell transfusion. A
glow-in-the-dark star wearing sunglasses
symbolizes total body irradiation.
Patients will first receive a cord with letter
beads that spell out their first name plus a
diagnosis bead and a bead from their treatment
center. Beads are added to the cord as they are
earned. Hero Beads provide a symbol of each
child’s personal journey, a touchable testament
to strength and endurance. Displaying their
strings of beads can help their friends, school
mates and extended family members to better
understand what they have has been going
through.
As we get the program up and running in the
next few months, there will be information
about it available through the hospital and
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clinics. We will encourage kids and teens who
are already in treatment to obtain a cord and
beads to “catch up” to where they are now in
treatment. If you have questions about the
program in the meantime, please contact Anne
in the Candlelighters’ office at 231-8006.
A sample list of available Hero Beads:
Air Lift
Biopsy Complete
Birthday on Treatment
Blood Transfusion
Bone Marrow Aspiration
Bone Marrow Transplant
Cast
Central Line surgically in / out
Course of Chemo
CT Scan
Diagnosis
Echocardiogram
End of Treatment
Hair Loss
ICU/PICU
Inpatient Admission
IV Infusion
Lumbar Puncture
MRI
Nuclear Med Scan
PET Scan
Platelet Transfusion
Radiation
Relapse
Remission, No Evidence of Disease
Sedation
Stem Cell Harvest
Surgery
Total Body Irradiation
Travel Long Distance to treatment
Tube Insertion (NG, G-tube, Chest tube)
X-Ray
Wish Trip
WOW Bead (to honor a special
accomplishment while on treatment)
Years Off Treatment (1, 2, 3, etc.)
Capital Candlelighters
Winter 2006
5
Shining Your Light For Kids With Cancer and their Families
Capital Candlelighters’ Donors 2005
We are very grateful for these donations received from January 1 through December 31, 2005:
Shooting Star (over $1000)
Dirk Todd/Red Letter Mortgage of Madison
Haraldson Brothers’ Open Golf Classic
Italian Workmen’s Club/Italian Golf Classic
Optimist Club of Brodhead Bike Tour
Thrivent Financial For Lutherans
William and Barbara Byrne
Wisconsin Department of Justice Grant
WISC-TV3 Beat the Pro
Zimbrick of Madison
Anonymous
Beacon ($1000)
Acker Floor to Ceiling
Robert W. Baird and Co.
EPIC Systems
Ethan Allen Home Interiors
Famous Footwear
Subway Restaurants
Thomasville Home Furnishings
University of Wisconsin Children’s Hospital
Wells Blue Bunny Ice Cream
Torch ($500-999)
Jim and Kim Gilmore
Shelly Turner
Vitense Golfland
Wal*Mart Foundation
Candleabra ($250-$499)
West Side Optimists of
Madison
James and Sheerin Sturm
Anonymous (2)
Pillar ($150-249)
Pro-Telcom, Inc
Claims Assoc. of
Wisconsin
Karen Schlageter
Jennifer Chiaverini
Soroptimist Foundation of
Fond du Lac
Greg and Mary Davidson
Dr. Diane Puccetti
Caroline Joyce - in honor
of Rebekah Joyce
Illuminator ($100-149)
Laura Teduits
Haselwander Bros., Inc
W.L. Whitman
Pedro Vila
Jim and Peggy Possin
Capital Candlelighters
Shining Light ($50-$99)
Sandra Johnston
Diane Liebenthal
Memorial Library Staffin memory of William
Byrne's mother
Mark and Nury Duerst
Patricia Jens
Dina Pocernich
Matthew Richards
Mike and Katherine Kollman
Dr. Mary Stoffel
Nancy and William Ricketts
Joseph and Tanya Maitland
Michael and Karen Merk
Judy Coenen Eichhorn
Beverly Eichhorn
Rebekah Phillips- in memory
of Allison Miller
Shining Light ($20-49)
Nancy Klein
Ada Martin
Ann Tulip
Elizabeth Crosswaite
Linda Lazic
Sally Graff
James and Marcia Egle
Lynn Germanson
Judith Litman
Timothy and Sharon
Davidson
Florence Mielcarek
Gary Choncholas
Jessica and Kevin Lenius
John and Hilda Uelmen
Lisa and Jeff Immel
Lynn Moon
Mr. and Mrs. Thomas Glatz
Tammy Eichhorn
Terry and Robin Fink
Alliant Energy Foundation
Amy and Tom Talerico
Anne Kies
Carrie Noonan
Catherine Voge
Debra Barnes
Diane Humboldt
Elaine Gadzicki
Winter 2006
Freddi Adelson
Helene Phelps
Jennifer Stamm
Jill Mack
Joanne Streit
Julie Dittman
Katherine Trace
Kathleen Helm
Marcia Bastian
Mary Bartzen
Mary Jo Tillquist
Mary Manering
Mimi Killpack
Nancy Block
Nancy Zellmer
Paul and Sherie Sondel
Quinn Heneghan
Rosemary Daniels
Shelly Kennedy
Sherry Quamme
Susan Colby
Susan Latton
Susannah Taylor
Tracey Hensen
Tracy Reichenbacher
We have received vital inkind support from the
following this year:
Jane and Allen Kahl
Jennifer Chiaverini
Pacific Cycle
Subway Restaurants
Wells Blue Bunny
Lorie Miller
Joel Wish
Noah's Ark
Cathy Cigelske
Vitense Golfland
Badgerland Bowling
Jen Rozinski
Madison Magazine
1st Choice Dental
Carolyn Morrison Phillips
Jack Guzman
Jayne Pollele
Joel Haraldson
Middleton Optimists'
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Roger and Gladys Conlisk
Swing Ltd
Tom Hirsch/Hirsch Group
Windy City Novelties/
Chemical Light
WISC-TV3/UPN 14
Woodman's Markets
Tio Spa Salon
Movin' Shoes
Cameo Spa Salon
Overture Center for the Arts
American Girl
Nakoma Golf Club
La Brioche
Eno Vino Wine Bar
Johannsen's Greenhouse
Orange Tree Imports
Simply Swimming
Wild Child
Mallatt's Pharmacy
Sweet Basil Personal Chefs
Mansion Hill Inn
Ancora Coffee Roasters
TCBY
Lakeside Fibers
Ubake
Blue Velvet Lounge
Crandall's Homemade
Gourmet Takeout
Bliss Flow Yoga Center
Johnny's Italian Steakhouse
Vanilla Bean
MC Sports
J Kinney Florist
INA Company
Laurel Tavern
Beauty Blossoms
Suzen Sez
Jan's Bath Boutique
Jung's Garden Center
Spectrum Brands
Peter Leidy
Rebecca Koscik
Tina Langhough
Kris Chambas
Russ Darrow Group
Peggy and Jim Possin
Princeton Club
Barbara Byrne
Capital Candlelighters
Quivey's Grove
Studio Z
Madison Symphony
Len Backus
Sally Giles
C.J. Farms
Andrea Urbon
Madison Ballet
M&M Victorian Inn
Whitehorse Inn
Jim Gilmore
RZ and Co.
Savoir Faire
Fritz and Associates
Winter 2006
Deonne Salon and Day Spa
Food Fight Restaurants
Bohemian Bauble
Madison Magazine
Anonymous (5)
Cambridge Wood-Fired
Pottery
Concepts in Art
Sentry
Cookies By Design
Flower Gallery
Grape and Co.
Premier Dance Academy
Brennans
Klinke Cleaners
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Lombardino's
Rogan's Shoes
Rejuvenation Spa
Twigs
Bodacious Boutique
Sunglass Hut
Bellini
Gratitudes
Sentry
UW-Madison Athletics
Larsen Portrait Design
Shu Yang
Kalahari Resort
Wilderness Lodge
Calling All Scrapbook Enthusiasts and Rubber Stamping Crafters!
Crop For Kids With Cancer
Saturday, March 4
9 am to 4 pm
Sun Prairie United Methodist Church
For everyone from beginners to advanced scrapbookers!
Bring your photos and craft to your heart’s content!
Vendors from Stampin’ Up and Creative Memories will present 2 idea breakout
sessions during the day and will be on hand with materials, ideas and tools for you
to use. There will be giveaways throughout the day and a “Supplies Garage Sale.”
Lunch, snacks, beverages and generous workspace included in the admission price.
To register or for more info, contact Wisconsin Angels’ event organizer
Jane Kahl at 608-837-8577 or [email protected]
$25 before Feb 26, $30 at the door
payable by check, cash or credit card to “Capital Candlelighters”
All proceeds benefit Capital Candlelighters and Leukemia/Lymphoma Society
Capital Candlelighters
Winter 2006
8
“Ashley’s Med Box” Update
Ashley Eichhorn’s Medical Box program is now able to provide all Pediatric Oncology patients
with a box of their own. As we reported last summer, Ashley, a teen with leukemia, decided
that other patients could benefit from having a safe, lockable box like she had to organize and
transport her medications. The boxes have proven to be very popular with patients, who often
need to bring their medications with them to clinic or to the hospital. She has raised nearly
$1300 in contributions so far, and the generous folks at Plano Moulding Co. in Plano, IL were so
inspired by this use of their products that they offered us a very reasonable cost for the
boxes -- and free shipping!
We now provide an “Ashley’s Med Box” to every patient with their “New Diagnosis” bag. If you
have a child currently on treatment and would like a box, please ask your nurse for one the next
time you are in clinic or you can contact the Candlelighters’ office by calling 608-231-8006 or emailing [email protected].
Capital Candlelighters’ Author’s Luncheon a Big Success!
Novelist Jennifer Chiaverini gave a wonderful presentation at our November 13 Author’s
Luncheon and Silent Auction at Nakoma Golf Club. Candlelighters’ mom Deb Kapke and Attorney
General Peg Lautenschlager also offered their thoughts from the podium to about 200 people
in attendance. The words were inspirational, the food was delicious and the silent auction was
fun! A HUGE thanks to volunteer Jayne Pollele who was a powerhouse and a gracious inspiration
for the whole event. Board members Barbara Byrne and Jim Gilmore worked hard to form
great relationships with our sponsors, and our energetic volunteers made it all run smoothly.
Our deepest thanks to our event sponsors, Zimbrick of Madison, Acker Floor to Ceiling, Robert
W. Baird and Co., EPIC Systems, Ethan Allen Home Interiors, Famous Footwear, Thomasville
Home Furnishings and the UW Children’s Hospital.
Capital Candlelighters
Winter 2006
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News From The Capital Candlelighters’ Office
Thank You, Volunteers!
We’ve had some great volunteers helping to make our social
events, fundraisers and office chores easier, better and brighter! A special shout-out to Dawn
Grelle, our weekly office volunteer, for all her great help.
Where would we be without the Madison East High Candlelighters Club? They do wonderful
work raising awareness of childhood cancer issues, raising funds and creating and running
wonderful games for kids at the Vitensefest Carnival and the Summer Picnic. With no
assistance they put on an amazing Halloween Party in October and entertained about 70
Candlelighters kids with games, prizes and great treats.
We’ve also received great assistance from the Madison West High Latin Club filling New
Diagnosis bags, and helping with setting up and running the Author’s Luncheon and this year’s
Holiday Party. Members of the East Madison-Monona Lioness Club have been providing
volunteers for events and are dedicating the funds they raise from their February 4th raffle to
Capital Candlelighters!
A Yummy Gift for Families! Personal chef Carolyn Morrison Phillips of Sweet Basil Chefs
delighted lots of Candlelighters’ families right before Christmas with beautiful trays of
delicious, hand decorated cookies created by Phillips, her friends and students in her holiday
baking class. This thoughtful and perfectly timed gift was in addition to the generous donation
Sweet Basil Chefs made to the Author’s Luncheon Silent Auction in November.
“Clean Sweep” at the Candlelighters office—Personal organizers Jill Annis of Simply
Organized and Paula Apfelbach of Breathing Room donated their services to Capital
Candlelighters as a service project for January, which their profession promotes as “Get
Organized Month.” They have been tremendously helpful in guiding us to organize our limited
storage space and to make sure our office meets the needs of our growing organization. You
can learn more about them at www.siimplyorganizedwithjill.com and www.breathing-room.us
School Issues? We have a new supply of “Educating the Child With Cancer,” edited by
Nancy Keene and published by Candlelighters National Office. The book is invaluable for
parents, teachers and others trying to help a child stay successful in school during cancer
treatment and in the years afterwards. Call or e-mail the office if you’d like a copy.
For Families: 1) We would like to resume our parent support groups in the near future. If
you want to participate or have questions, please contact the office at 231-8006.
2) Limited financial assistance is available through Capital Candlelighters. You can get a simple
application form from the Candlelighters office or from your hospital social worker.
Capital Candlelighters
Winter 2006
10
World Cancer Day, February 4, 2006
& World Cancer Campaign
Barbara Bush, former United States First Lady, is a mother who lost her young
daughter to leukemia. Knowing first hand what it is like to lose a child to cancer, she
is a dedicated cancer advocate who strongly supports efforts to educate parents
about childhood cancer.
“When our daughter was first diagnosed with leukemia we had never heard of the
disease and felt very helpless and dependent on the physicians,” remembers Barbara
Bush. “Forty years ago survival rates were very low and despite different medical
treatments, our daughter Robin unfortunately died.”
“It was extremely difficult for the whole family to lose someone we all loved so
dearly, someone who had her entire future ahead of her. We decided the best way to
save our daughter’s memory was to make this tragedy a positive experience by raising
awareness of the disease so that other children would have a chance to live. I would
like to encourage all parents to take the time to familiarize themselves with the most
common symptoms. With early detection and the treatments available today, most
children diagnosed with cancer have a good chance of surviving and of living an active
life,” says Mrs. Bush.
This year marks the launch of the International Union Against Cancer’s (UICC) World Cancer
Campaign focused on childhood cancer. (www.uicc.org). The World Cancer Campaign calls for an
alliance between researchers, healthcare professionals, patients, government, industry and media, to
fight cancer and its greatest allies which are fear, ignorance and complacency. The World Cancer
Campaign theme for 2006 will be “My Child Matters” (www.mychildmatters.org). Focused on the
international impact of childhood cancer, the campaign consists of three main components: support for
research initiatives to reduce childhood cancer mortality and morbidity in developing countries; a
comprehensive state-of-the-art report on childhood cancers which will be made available to the
general public on World Cancer Day, 4 February 2006; and a worldwide mobilization and
awareness campaign, to highlight the effects of childhood cancers on children and their families.
Each year, more than 160,000 children world-wide are diagnosed with cancer and approximately
90,000 will die of their disease. While cure rates for many childhood cancers have reached
approximately 75% in the US, more than half of all children diagnosed with cancer in developing
countries will die of their disease. HIV/AIDS remains a critical priority for the health of children in
sub-Saharan Africa, but cancer is emerging as a major cause of childhood death in Asia, Central and
South America, northwest Africa and the Middle East, where fewer children are now dying from
preventable infectious diseases.
In support of the World Cancer Awareness Campaign, Candlelighters is proud to announce the
February 4th, 2006 website release of a photo essay focused on the impact of childhood cancer in the
United States. The photos will be the work of professional photographers Jed Share and Trevor
Romain. You can view the photos starting Feb. 4th at www.candlelighters.org.
Capital Candlelighters
Winter 2006
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Teleconferences for Parents and Professionals
The National Children’s Cancer Society’s “Beyond the Cure” program hosts teleconferences on a variety
issues and concerns experienced by survivors and their families after completion of treatment for
childhood cancer. These teleconferences provide you with current information from leading national
experts without leaving your home or office.
Chemotherapy, Radiation and Your Long-Term Health
A Free Teleconference for Parents and Professionals
February 21, 2006
12:00 p.m. - 1:00 p.m. CST
This teleconference will have an emphasis on the specific medical late effects associated with radiation
and chemotherapy.
Dr. Oeffinger, Director Living Beyond Cancer: A Program For Adult Survivors of Pediatric Cancer, at
Memorial Sloan Kettering Cancer Center will be presenting and answering participants questions.
Register for the teleconference and read the brochure at:
http://www.beyondthecure.org/announcements/index.html?ssection
Look for information on upcoming teleconferences:
March 14, 2006
Bone Marrow, Stem Cell Transplant and Your Long Term Health
April 18, 2006
Cancer and Its Impact on Fertility
You can also listen to previous teleconferences, archived at the web site.
Capital Candlelighters
Capital Candlelighters Board 2006:
Barbara Byrne
Jim Egle
Kent Emerson
Jim Gilmore
Joel Haraldson
Tracey Hensen
Helena Scherer-Jones
Lorie Miller
Madison East High School
Candlelighters’ Sponsor
Winter 2006
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