Kids With Courage V Sunday, September 29, 2013 Wisconsin Dells, Wisconsin

Kids With Courage V
Sunday, September 29, 2013
Kalahari Resort and Convention Center
Wisconsin Dells, Wisconsin
Table of
Contents
A Message from Cindy Crawford......... 1
Schedule of Events...........................2-4
Keynote Presenters.............................. 5
Event Informattion.............................6-7
Photos with Cindy Crawford
Kids With Courage Challenge
Superhero Capes
First Aid Room
Child Care
Lost Children
Emcees and Presenters....................8-9
Breakout Session Presenters.......10-11
Informational Displays........................ 12
Sponsors/Special Thanks.................. 12
Kids With Courage Committee.......... 13
Welcome
Welcome to Kids With Courage V! This special reunion
celebrates a remarkable group of courageous kids whom
have all received care for cancer or related diseases
at American Family Children’s Hospital (formerly UW
Children’s Hospital). Today, we honor these current and
former patients as well as those children who did not
survive. We have been so privileged to care for all of you
and your family.
A Message from
Cindy Crawford
I am honored to be back in Wisconsin for Kids With Courage V!
Over the past 20 years, Kids With Courage has meant so much to me and my family. I love connecting with
childhood cancer patients and families and seeing the strength you gain from one another. And, what an
amazing sight it is to see hundreds of childhood cancer survivors all under one roof.
We’ve come a long way in the research, care and
treatment of pediatric cancers and related diseases.
Through today’s events, we hope to celebrate our
progress together, entertain, educate, provide support
and inspire.
My connection with this fight, as you may know, is very personal. My little brother Jeffrey was not quite
4 years old when he lost a two-year battle with leukemia (ALL) in 1975. Living a couple hours south in
DeKalb, Illinois, our family chose to have Jeff treated at UW Children’s Hospital in Madison. While my family
misses Jeff dearly, we are honored to stay closely connected with the Pediatric Hematology, Oncology and
Bone Marrow Transplant program and American Family Children’s Hospital.
If at any time you have questions or concerns – please
look for a committee member wearing a blue shirt or
a volunteer with an orange “volunteer” ribbon on their
nametag.
Most of all, we are grateful for the incredible advances that have come along toward curing childhood
cancer since Jeff was diagnosed nearly 40 years ago. Back then, a diagnosis of cancer was virtually a
death sentence for any child. Today, thanks to the amazing research taking place at UW and other centers
around the world, about 80 percent of children diagnosed with cancer will be cured.
Once again, welcome to Kids With Courage V!
While we have come a long way, the job will not be finished until every last mystery of childhood cancer is
unraveled and every child can be cured. With your continuing support, I know we will live to see that day.
Sincerely,
The Kids With Courage V Committee
Sincerely,
Cindy Crawford
To stay connected, visit our web-site and uwhealthkids.org/courage;
join our online community and our Facebook group.
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Schedule of Events
Kalahari Resort and Convention Center
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8:30 – 10:00 am
8:45 – 10:00 am
Registration, Continental Breakfast
and Informational Displays
Lobby (South Atrium)
Small Group (Family) Photos
with Cindy Crawford
Ballrooms 3 & 6
10:15 – 11:30 am
“Exploring Our Past Strength”
Ballrooms A-H
Welcome and Introductions
Jon Elenius
Paul Sondel, MD, PhD
Kids With Courage Chair
UW Division of Pediatric Hematology, Oncology and Bone Marrow Transplant
Donna Katen-Bahensky
President and Chief Executive Officer, UW Hospitals and Clinics/
American Family Children’s Hospital
Howard Bailey, MD
Interim Director, UW Carbone Cancer Center
Cindy Crawford
Cameron Davis and James Gilmore
Magic Show
Ken DeSantes, MD
Heather Kelly McKay
“Superheroes in Us and Among Us”
Kelly Cotter
11:30 am – 1:00 pm
Lunch
Ballrooms A-H, Lobby (South Atrium)
and South Hallway
Informational Displays and Cape Activity
Lobby (South Atrium)
11:30 am
Large Group Photos with Cindy Crawford
(One photo with survivors, and one with siblings)
Ballrooms 3 & 6
12:00 pm
Small Group Photos (Family) with Cindy Crawford
Ballrooms 3 & 6
1:00 – 2:00 pm
“Our Hope for the Future” and Closing Ceremony
Jon Elenius
Ballrooms A-H
Rebekah Wreidt
Paul Sondel, MD, PhD
Megan Ketterhagen
“Someone Watching Over Me”
Performed by Kelly Hoeppner, accompanied by Kristin Brickl
“Why Pediatric Cancer Chose Me”
D. Simone Devereueawax
Finale
2:00 – 4:00 pm
Kids With Courage Challenge
Recommended for children ages 6-14
Indoor Theme Park
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Breakout Sessions
Select one of the four following breakout sessions:
“Late Effects of Therapy”Cypress
Sharon Frierdich, RN, MS, CPNP
American Family Children’s Hospital
Peggy Possin, RN
American Family Children’s Hospital
Diane M. Puccetti, MD
UW Division of Pediatric Hematology, Oncology and Bone Marrow Transplant
Alanna Kessler-Jones, MD
UW Department of Neurology
Wendy Prihoda Stewart, PT
American Family Children’s Hospital
“Living with the Emotional Impact of Diagnosis”
Joyce Kilgore-Carlin, CAPSW
American Family Children’s Hospital
“Remembering our Loved Ones”
Kris Simon, RN, LPC, CHPN, CT
Kelly Fischer, RN, CHPN
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Special thanks to our
2:30 – 3:30 pm
“Mission Possible: For Teens and Young Adults”
D. Simone Devereueawax
keynote presenters
Kelly Cotter
Kelly Cotter is a lawyer and cancer advocate. In 1988, Kelly was diagnosed with ALL and received a bone marrow
transplant from her brother, Adam, at UW Children’s Hospital.
The experience sparked her dedication to local, regional and national cancer advocacy. She served as director of
legislative affairs for Children’s Oncology Group/CureSearch, where she was effective in raising national awareness and
lobbying for directed childhood cancer research funding. As a member of the NCI Director’s Consumer Liaison Group,
Kelly worked to engage advocates to accelerate research progress. She is currently an advocate on the Stand Up To
Cancer/St. Baldrick’s Pediatric Cancer Dream Team.
Kelly and her husband Bill live in Chicago and have two young boys, Enzo, age 4, and Teo, Age 2.
Aralia
D. Simone Devereueawax
Marula
Aloeswood
Shortly after being diagnosed with cancer at age 17, Simone Devereueawax realized the real battle to survival wasn’t
against her body, the chemotherapy, the radiation, or the side effects, but took place in her mind. At an early age,
Simone learned how to take control of her thoughts and beliefs to create the reality she desired to live—in spite of the
unfortunate circumstance in which she found herself. While her cancer experience was grueling, she survived and built
a solid foundation of personal success rooted in vision, belief, perseverance and determination. Simone now impacts
audiences of all kinds in her public addresses, seminars, and workshops with her “Triangle of Personal Success”.
As a captivating speaker, author, personal success trainer and entrepreneur, Simone shows others how to create their
own reality and what it takes to decide what is true for their own lives.
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Event Information
Photos with Cindy Crawford
Superhero Capes
Immediately following the morning program, we will be taking two group photos with Cindy Crawford in Ballrooms 3 & 6 – one of all childhood cancer
survivors and one including all of the siblings.
All kids are invited to create their own superhero cape. Please visit the cape making table in the lobby during the following times:
8:30 – 10:15 am
11:30 am – 1:00 pm
Small group (family) photos with Cindy Crawford are available from 8:30 – 10:00 am and 11:30 am – 1:00 pm in Ballrooms 3 and 6 on a first come, first
served basis. Your time will be provided at registration.
Photos will be available online two weeks after the event for you to download and print at your convenience at: uwhealth.photoshelter.com/
Kids With Courage Challenge
The Kids With Courage Challenge will take place in the Indoor Theme Park beginning at 2:00 pm. Individuals participating in the challenge MUST wear
their Kids With Courage T-shirt and the Indoor Theme Park wristband.
Immediately following the afternoon session, instructions will be provided for the Kids With Courage Challenge. All children who will be supervised by a
parent or guardian will be asked to meet at the southwest door of the ballroom and children without supervision will be asked to meet at the southeast
door of the ballroom. Both groups will be escorted to the Indoor Theme Park. Volunteers will be available in the theme park for assistance and escorting
children through the activities if needed. Wristbands will be provided to all participants and will be valid for two hours.
Activity stations and height requirements include:
• Revolution 360 – 44” tall and 9 years old
• XD Dark Ride – 42”
• Atomic Rush – 42”
• Ferris Wheel – 42”
• Climbing Wall – 44”
• Laser Tag – 5 years or older
• Mini-golf - None
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• Ropes Course – 44”
• Vortex Tunnel - None
• Carousel – 42”
• Sky Tykes – 3 years – 48”
• Kiddie Bumper Boats – 3 years – 90 lbs.
• Crafts – None
First Aid Room
A First Aid station/resting area is located in the Wisteria room. A nurse is
available on an on-call basis; however there are no treatments or medications
available.
Child Care
Care is available for children ages 0 – 5 in the Guava, Tamarind and Portia
rooms through The Pop-In Nanny Agency during the following times;
9:45 – 11:30 am
12:30 – 3:45 pm
Age-appropriate equipment, toys, games and other activities will be provided.
A separate child registration and check-in and check-out will be conducted by
Pop-In Nanny staff on site.
Lost Children
If you cannot locate your child or he/she is lost, please notify a volunteer
wearing an orange “volunteer” nametag.
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emcees and presenters
Rebekah “Bekah” Wreidt
Cameron Davis
Age: 15
Hometown: South Beloit, Illinois
Age: 13
Hometown: Freeport, Illinois
Jon Elenius
Megan Ketterhagen
Age: 51
Hometown: Chicago, Illinois
Age: 19
Hometown: Whitewater, Wisconsin
In 1972, just before my tenth birthday, I was
diagnosed with Lymphosarcoma. My parents were
told that I had six months, maybe a year to live.
Although my prognosis was bleak, I am one of the
lucky survivors. Fast-forward 41 years and I am a
happy, healthy, 51-year-old man who enjoys a wonderful life. I credit
loving parents, a great medical team, answered prayers and maybe
just a little luck.
In 2008, at age 14, I was diagnosed with
Osteosarcoma in my left femur. I endured ten
months of chemotherapy, five surgeries including
a total knee replacement, and multiple setbacks
to get to where I am today. Being diagnosed with
cancer at such a young age has had a large impact on my life. I cannot
play sports, still have physical therapy, and often find myself restricted
from activities my peers are perfectly capable of completing. Still, having
Osteosarcoma has given me perspective on how to thrive in the world
around me.
I was diagnosed with Acute Lymphoblastic
Leukemia in November of 2005. I am now a
high school sophomore. I am obsessed with
photography and filming and want to be able to
use this passion to serve the Lord. I also love
to swim, play volleyball and play guitar. I have also participated in two
triathlons in the past two years and placed in both.
I was diagnosed with Wilm’s Tumor, a cancer of
the kidney, at only ten months old in 2000 and
then again, at two years old. I do not remember
anything about my diagnosis, but my parents say
that I was very good with all of my treatments. With
my second diagnosis, I was treated at UW Children’s Hospital. My family
and community were always there to support me, and my aunt donated
a kidney to me when I needed it the most. I always enjoyed the hospital
playrooms and even got to meet some pretty special sports visitors and
take a trip through Make-A-Wish to Disney World. Today, I can go places
and do most of the things that I want to do. I enjoy hanging out with my
friends and playing basketball. I look forward to completing the 8th grade,
and becoming a freshman.
Heather Kelly McKay
Age: 40
Hometown: Kenosha, Wisconsin
I was diagnosed with Chronic Myelogenous
Leukemia at the age of 13. My brother was my
only hope for a cure through a bone marrow
transplant. I am now married and serve as a
school-based speech language pathologist in the
Kenosha Unified School District.
I like to use my experience with cancer to drive my future and impact all
around me in a positive way. I have served as a speaker for the Midwest
Athletes Against Childhood Cancer (MACC) Fund for the past three
years, and enjoy educating others on cancer awareness and prevention.
Through scholarship programs like the National Children’s Cancer Society,
I have been able to focus on furthering my education in the health field
and goal of helping those touched by cancer.
Currently, I am a sophomore at UW-Madison studying healthcare
administration and consulting and am chair of one of UW-Madison’s
largest student run leadership conferences.
James Gilmore
Age: 12
Hometown: Madison, Wisconsin
When I was 13 months old, I was diagnosed
with Acute Myeloid Leukemia. I lived at the UW
Children’s Hospital for four months as I underwent
three rounds of very intensive chemotherapy. My
parents were always at my bedside, as was the
caring and dedicated hospital staff at the UW
Children’s Hospital. The compassion given to our family during that difficult
time is something we will always remember. My cancer experience had a
profound impact on my family. My father, Jim Gilmore, changed careers
and today serves on the development staff at American Family Children’s
Hospital, helping to advance philanthropy for the hospital. As for me, I
am now a healthy and thriving 7th grader, approaching my 13th birthday.
I enjoy time with my family and friends, and play hockey and golf in my
spare time.
Kelly Hoeppner
Age: 16
Hometown: Appleton, Wisconsin
I was diagnosed with Glioblastoma Multiforme
Astrocytoma grade 4 (a type of brain tumor) in May
2009 when I was 12 years old and in the 6th grade.
I had two brain surgeries to remove the tumor and
surrounding tissue in my left frontal lobe. I then
had 30 oral chemotherapy treatments, 30 radiation
treatments, and 3 years of IV chemotherapy.
Before my diagnosis, I played sports. When I was unable to play sports
during treatment, I discovered my love for music and the arts. Music is a
way to express myself and my feelings. It also allows me to get away from
dealing with my illness for a while.
I am now a junior at Sauk Prairie High School, am active in the school
musicals; show choir, voice lessons and dance, and love art. Best of all,
my scans remain clear!!
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BreakOut Session Presenters
“Remembering Our Loved Ones”
“Late Effects of Therapy”
Kelly Fischer, RN, CHPN
Diane M. Puccetti, MD
Kelly is an experienced clinical leader with
special interest in complex illness requiring
pain and symptom management, psychosocial
support and palliative care. Kelly’s executive
experience includes both hospice and palliative
care. Kelly graduated from Grand Canyon
University of Arizona (GCU) with a Bachelor of
Science in Nursing, and is certified as a Hospice and Palliative Nurse
and as an ELNEC-Pediatric Palliative Care trainer. Kelly is currently the
Chief Operating Officer at JourneyCare Hospice and Palliative Care, in
Barrington, IL. After visiting a children’s hospice program in Germany, she
became interested in learning about US pediatric programs.
Kris and Kelly co-founded Bear Courage, a not-for-profit with the goal of
improving the care and support of seriously ill children and their families
within the state of Wisconsin. They were honored to receive the ELNEC
Pediatric Palliative Care 2011 award due to their work with Bear Courage.
Kris Simon, RN, LPC, CHPN, CT
Kris has 25 years of oncology/hospice nursing experience in addition to
6 years as a professional counselor with an emphasis in grief counseling.
Kris graduated from the University of Wisconsin – Madison with a BSN
and received her Masters Degree in Counseling from the University
of Wisconsin-Whitewater. Kris is a Certified Thanatologist through the
Association for Death Education and Counseling and is a certified
End-of-Life Nursing Education Consortium (ELNEC) Pediatric Palliative
Care Trainer.
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Dr. Puccetti, an Associate Professor, joined the
faculty at UW Children’s Hospital in 1991. She
cares for patients in the outpatient clinic and on the
pediatric hematology, oncology and bone marrow
transplant inpatient unit. She serves as the Medical
Director of the Pediatric Neuro-Oncology Tumor
Clinic and the Medical Director of the Caring for Life
program.
Sharon Frierdich,
RN, MS, CPNP
Sharon has been a nurse practitioner in Pediatric
Hematology/Oncology for more than 30 years.
She partners with the physicians and other team
members to provide care, education and counseling
presently in the outpatient setting. She specializes
in servicing the oncology, blood and bone marrow
transplant, sickle cell, and childhood cancer survivor populations. She has
presented at local to national conferences and published extensively.
Alanna Kessler-Jones, MD
Dr. Kessler-Jones conducts neuropsychological
evaluations of children with a broad array
of medical, developmental, psychiatric, and
educational difficulties. Her clinical interests include
pediatric epilepsy, pediatric cancer, pediatric head
injury and outcomes of premature or complicated
birth. She trained at Henry Ford Hospital and
Dartmouth-Hitchcock Medical Center.
Wendy Prihoda Stewart
Wendy Prihoda Stewart is a pediatric physical therapist at the UW
American Family Children’s Hospital and Clinics where her clinical focus
is Pediatric Oncology. Wendy’s clinical expertise is in the areas neuroorthpedics and gait with specializations in Gait Analysis Interpretation
and Orthotic Management for the Child with Neuromuscular Issues.
She is currently on a national committee to establish guidelines for
physical therapy intervention in the child with cancer. Wendy recently
joined the team in the Caring for Life Clinic at the American Family
Children’s Hospital.
Peggy Possin, RN
Peggy has been a staff nurse in pediatric
hematology and other specialty clinics since 1976.
She is the Coordinator of the Caring for Life Clinic–
the American Family Children’s Hospital’s long-term
follow up clinic which was established
in 1989.
“Living with the Emotional Impact of
Cancer: Emotional Factors”
Joyce Kilgore-Carlin, MSW
Since 2006, Joyce has been providing social
work services as a member of the UW Division
of Pediatric Hematology, Oncology and Bone
Marrow Transplant. Joyce is a certified “Caring For
the Caregiver” presenter and a trained Hospice
grief support facilitator. Her focus on community
collaboration has led her to a number of volunteer
opportunities and leadership roles. Joyce received
her Bachelor of Arts Degree in Psychology at Clarke University and a
Masters in Social Work at the University of Iowa.
“Mission Possible: For Teens
and Young Adults”
D. Simone Devereueawax
Teens and young adults are invited to connect
with keynote presenter Simone Devereueawax in a
smaller group setting. Simone says, “Far too often,
people are convinced that cancer is an impossible
mission they’re handed. As such, the message I
created is aimed at showing young adults how to
see it differently.” See Simone’s full biography on
page 5.
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Kids With
Courage
Committee
Informational Displays
American Family Children’s Hospital- Caring For Life Clinic
American Family Children’s Hospital- Pediatric Neuro-Oncology Group
American Family Children’s Hospital- Pediatric Social Work
American Family Children’s Hospital- Patient Family Advisory Council
(PFAC)
Angel on My Shoulder/ Camp Angel
Badger Childhood Cancer Network
Center For Patient Partnerships
Cure Search
Flashes of Hope
Gabe’s Chemo Duck
Gilda’s Club
Leukemia and Lymphoma Society
One Step At A Time Camp
Joshua’s Camp
Midwest Athletes Against Childhood Cancer (MACC) Fund
Make A Wish
Monkey In My Chair
Ronald McDonald House Charities
Super Sibs
UW Division of Pediatric Hematology, Oncology and Bone Marrow
Transplant
special thanks to our sponsors
and other contributors
Amgen
Dr. Christian Capitini
Dr. Ken DeSantes
Events Plus Productions
Kalahari Resort and Convention Center
Madison Media Institute
Ellis Paul – ellispaul.com
Mr. and Mrs. Richard Pitzner
RW Baird Foundation
Smart Motors
Tom Loucks Photography
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Chair – Paul Sondel, MD, PhD,
UW Division of Pediatric Hematology,
Oncology and Bone Marrow Transplant
Sharon Frierdich, American Family
Children’s Hospital
Kathryn Murphy, American Family
Children’s Hospital
Jim Gilmore, American Family Children’s Hospital
Beth Blum, UW Health Marketing and
Public Affairs
Liz Hill, American Family Children’s Hospital
Beth Pinkerton, UW Health Marketing and
Public Affairs
Michael Felber, UW Health Marketing and
Public Affairs
Lynda Meade, UW Department of Pediatrics
Nancy Francisco-Welke, UW Foundation
Colleen Fraser, UW Hospital and Clinics
Dan Inda, Inda Designs
Toni Morriseey, UW Health Marketing and
Public Affairs
Diane Puccetti, MD,
UW Division of Hematology, Oncology and
Bone Marrow Transplant
Terri Spring, American Family Children’s Hospital
Tom Young, American Family Children’s Hospital
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finding
your way
Breakout
Sessions
Mission Possible
Remembering Our
Loved Ones
PARKING LOT
Small group/family photos
and large group photos
Emotional Impact
Registration
Lunch
Breakfast/Lunch
Morning session
and
afternoon session
Child Care
Informational Booths
Safari Clothing
and Swimwear
Cape Activity
Zakanaka
Kids
First Aid
0913
Breakout session
“Late Effects”