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. 1 Schedule of Events Kalahari Resort and Convention Center 2 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 3 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 4 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. 5 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 6 • 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. 7 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!! 8 9 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. 10 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. 11 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 12 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 13 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”