Heroes THE MAGAZINE OF CHILDREN’S MEMORIAL HOSPITAL WINTER 2010 Our heroes share stories — in their own words Heroes CONTENTS IN THIS ISSUE Members of the Children’s Memorial family — including patients, parents, siblings, physicians, nurses, researchers, staff and donors — share their stories in their own words. We invite you to share your story online at childrensmemorial.org/tellusyourstory. On the cover: Jamarielle “Jam” Ransom-Marks, 11, has undergone years of treatment for leukemia at Children’s Memorial Hospital, including a stem cell transplant. A proud cancer survivor, Jam shares personal reflections of her journey on page 3. 11 Do you have a suggestion for a future theme or story idea? We’d love to hear it! Please send an e-mail to the editor: [email protected]. 2 Helping families when they need us most 3 I’m a survivor 4 The personal inspiration for my research 5 The best holiday gift of all 6 My way of helping to find a cure 7 An opportunity to shape the future 8 Crown Sky Garden 9 Designing a healing oasis 10 Planning now for the move to Lurie Children’s 11 Carrying on Cal’s legacy 12 Building a brighter future for children 13 Why I give 14 The greatest rewards 15 Every day is inspiring 16 My harmonious life, thanks to Children’s 17 Round Up Children’s Memorial Medical Center J. Christopher Reyes (Chairman, Board of Directors), Patrick M. Magoon (President and CEO) Children’s Memorial Foundation Daniel J. Hennessy (Chairman, Board of Directors), Thomas J. Sullivan (President) Heroes is published by Children’s Memorial Foundation Editor Alison DeShaw Contributors Elizabeth Keating, Dan Kening, Maureen King, Erin Shields, Aileen Tormon Principal Photography Andrew Campbell Additional Photography Jan Terry Design Words&Pictures, Inc. © 2010 Children’s Memorial Hospital. Written requests for permission to reproduce some or all of this publication are welcomed. Contact Alison DeShaw at [email protected] or 773.880.6948. We respect your right to privacy and will make every effort to remove your name from our mailing list, if requested. To do so, please forward a written notice to Children’s Memorial Foundation, 2300 Children’s Plaza, Box 4, Chicago, IL 60614-6636 or send an e-mail to [email protected]. 10% Cert no. SW-COC-002352 INTRODUCTION Big hearts, little donors: Former cardiology patient Owen Edwards, 8, with his twin sister Kendall of Libertyville, Illinois. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 1 Beyond medical care: Helping families when they need us most By Nancy Heap, LCSW The situations many of our patient families face today are much more complex than when I started working at Children’s Memorial Hospital 14 years ago. Not only are they dealing with a child’s illness, they are also struggling to provide basic necessities, such as a roof over their heads and food on the table. With the economic downturn, even our most resilient families are struggling. Nancy Heap, LCSW, is the Manager of Social Work and Palliative Care. 2 One of my colleagues said it best: “Sometimes a child’s illness is not the biggest issue in a family’s life, even if that illness is cancer.” Social workers help families cope with the stress of having a sick child at every stage of the illness — from dealing with a new diagnosis, to identifying resources and support, to helping the family prepare for ongoing care or sometimes even the impending death of their child. In my role, I manage Social Work, the Patient Emergency Fund, Palliative Care and Heartlight, a program that helps families at the hospital, as well as in our community, cope with the death of a child. I get to help families in so many different ways. I can’t think of a better, more creative job. There’s one patient family that I will never forget. The mother had lost her job because of the time she spent away from work to be with her dying son. The 16-year-old daughter pitched in by working at a fast food restaurant and caring for her two younger siblings. There was no money for food, and they were in danger of losing their apartment. Because of the wonderful donor-funded resources available to us at that time, we were able to provide gift cards for groceries and gas. The boy spent his last days surrounded by loved ones, and the family had a place to go home to after the boy passed away. Finding the resources to help these families is an ongoing challenge. Our funding fluctuates and we can’t always anticipate needs. Some families need only a little help, others need more than what we can provide. But in all cases, we help families find support within their community. We really try to empower families so they are better able to take care of themselves once they leave us. Philanthropy makes it possible for us to offer these vital support services. I, along with many of our social workers, would not be here if not for the generosity of our donors. The Patient Emergency Fund, Palliative Care and Heartlight are completely funded by philanthropy. When we are able to step in and help families when they need us most, it’s phenomenal, and a true testament to the many caring individuals who support our mission. H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL WIN TER 2 0 10 I’m a survivor By Jamarielle “Jam” Ransom-Marks Yes, I am a two-time cancer survivor and stem cell transplant recipient. But I am much more than that. I am Jam, and I am 11 years old. After thinking about my experiences at Children’s Memorial Hospital for this article, I realized I had a page full of heartfelt, fun-filled memories and only a quarter of a page filled with painful ones. The bad memories made me think of how I kicked cancer’s butt. Twice. Cancer and I have parted ways, and Children’s Memorial is and will always be my lifesaver. I have been poked, examined, x-rayed, isolated and woken up at all hours of the night at the hospital, but that never stopped me from being strong. I never gave up the fight, and neither did Children’s Memorial. They are the reason for my extraordinary journey. Besides my parents, there are bucket loads of people who have made a difference in my life and recovery, but the most important ones are Dr. Elaine Morgan and oncology nurse Maureen Haugen. Together, they have fought this battle alongside me for the past seven years. I look forward to seeing them and I trust them. It is special to have doctors and nurses that I can call my friends. The hardest part about spending time at Children’s Memorial is being isolated. Isolation (an infection control measure) can kind of feel like the hospital’s version of jail. It is very hard to spend time being cramped in a tiny room that you are forbidden to come out of, but it isn’t all bad. The peace and privacy of the rooms are heavenly. Art and music therapists would visit me during my isolation stays, and besides being entertaining their visits made me feel calm and consoled. I would always play the song, “What is Love” on the synthesizer, and some of the artwork I created while in the hospital is displayed in my house. Now that I am up and running, our family has found a way to give back. Each summer we host a blood drive and a block party on our street to celebrate the anniversary of my stem cell transplant. I feel so honored and thankful for the huge number of people who come and donate blood. It is important to give blood if you can, because it saves lives. I know it saved mine. Cancer does not define me. I am not cancer. I am strong. I am a “Cancer Warrior.” I am a Remaining strong through two bouts of cancer, Jam Ransom-Marks underwent chemotherapy, fighter. I am not scared of cancer. It is smaller radiation treatments and a stem cell transplant. Today she is a healthy sixth-grader and an than me. It is not intimidating. I am a survivor. inspiration to many. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 3 The personal inspiration for my research By Nikia Laurie, PhD W Nikia Laurie, PhD, is Head of the Retinoblastoma Research Laboratory at Children’s Memorial Research Center and Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine. 4 hen I was a child, a family member very close to me was diagnosed with cancer. As my family and I surrounded him with love and support, I marveled at the courage and strength he displayed while facing one of the greatest struggles of his life. Throughout my life, his example motivated me to display fortitude when faced with challenges, and to work passionately for worthy causes. As a retinoblastoma researcher, knowing that my work can make the difference in the life of a child is my greatest motivation. My passion for learning and research inspired me to start my research career at the age of 16, when I sought out volunteer positions in the science labs of local colleges in my hometown. While an undergraduate at Xavier University of Louisiana, I spent my summers conducting research at both Brown and Yale Universities. With each new experience, my excitement for the potential of research to cure diseases grew. This inspired me to pursue my PhD at Brown University and my postdoctoral training in retinoblastoma research at St. Jude Children’s Research Hospital. Retinoblastoma is the most common pediatric cancer of the eye. In the U.S., the majority of retinoblastoma patients are diagnosed before their second birthday. Even though the vast majority of patients survive retinoblastoma, this disease causes many children to lose their sight. As a researcher, my goal is to improve the quality of life for children with retinoblastoma by discovering new therapies that will treat their cancer and save their vision. I am striving toward this worthy goal in collaboration with other researchers and physicians at Children’s Memorial. We have recently started a Retinoblastoma Center of Excellence, made up of physicians and scientists working toward a common goal, including Marilyn Mets, MD, Head of the Division of Opthamology; oncologist Joanna Weinstein, MD; Marcelo Bento Soares, PhD, Director of the Cancer Biology & Epigenomics Program at Children’s Memorial Research Center; and opthamologist Paul Bryar, MD, of Northwestern Memorial Hospital. We are studying the genetic changes that occur as retinoblastoma grows, so that we can find ways to target the retinoblastoma tumor for treatment. Because of the close collaboration between scientists and physicians at Children’s Memorial, we have a greater chance of moving new discoveries from the laboratory bench to the patient bedside. I am proud to be working alongside other dedicated researchers and physicians toward the worthy goal of finding more effective treatments for children with retinoblastoma. H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL WIN TER 2 0 10 The best holiday gift of all By Carolyn Schiffner The dreams we imagine for our children don’t include stethoscopes and surgical suites. But sometimes it’s that one thing we simply couldn’t have imagined that forever alters their course. After our 13-year old daughter Alison needed emergency surgery due to complications from Crohn’s disease, we were immediately forced to face the harsh realities of a chronic illness, the necessity of a prolonged hospitalization and the knowledge that we were powerless to change what was to come. Fortunately for Alison, and for all of us, we found ourselves at Children’s Memorial Hospital, surrounded by doctors and nurses who had both the determined spirit and the ability to make that change for us. Alison’s journey to health was not easy. Several months slipped by in a repetitive routine of operating room visits, tests and almost imperceptible progress. Two days before Christmas, Alison had her third major surgery — one we hoped would be the definitive procedure to turn the course of her recovery. Here are the words I shared with family, friends and neighbors following Alison’s surgery (drawing inspiration from Clement Clark Moore’s poem, “Twas the night before Christmas”): Twas the day of the surgery and in Ali’s room, Mom and Dad await quietly each bit of news. Hour by hour, the updates they came. “She’s doing well,” or “Status, the same.” The nurses outside gave us plenty of space, With hope and concern shown on each caring face. And me at my laptop and dad Scott in the chair, Tried hard to decipher what had gotten us there. No answers discovered, or reasons were found, Just family and friends, and love that abounds. When up from the OR, there rose the last call, “They’re starting to close.” But that wasn’t all. While prayers and good wishes swirled high in the air, Carolyn Schiffner lives in Oak Park, Illinois, with her husband, Scott, and their three children — Alison, Brad and Matt. They spoke of success, with intestine to spare! When what to our wondering eyes should appear, But the team of our doctors, ever so near. With a surgeon so skilled and nurses so dear, We knew in a moment we had nothing to fear. No leak! No more stricture! The fistula out! Recovery and healing is now what it’s about! We walked one last time to the recovery room, But this time our steps weren’t heavy with gloom. Our eyes how they twinkled! Our smiles so cheery! It was hard to imagine a Christmas more merry. But good things can happen on a snowy winter’s night, So Merry Christmas to all, and to all a good night! The joyful news of a successful surgery was, without a doubt, the best gift we would receive that holiday season. A week later — after 109 days in the hospital — we were able to take Alison home. Our family walked the long road to recovery with our family at Children’s, who provided a bright new light to guide my daughter’s steps toward a healthy future and the possibility of dreams. This gift we were given will never be forgotten. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 5 Hope for sale: My way of helping to find a cure By Emily Zint My brother, Andrew, was diagnosed with a malignant brain tumor last winter when he was 15. He had surgery to remove the tumor and needed radiation and chemotherapy treatments. He had his final chemo treatment at Children’s Memorial Hospital in September. Emily Zint, 12, of Arlington Heights, Illinois, organized a garage sale fundraiser to benefit brain tumor research in honor of her brother Andrew. 6 H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL WIN TER 2 0 10 When I first found out Andrew had a brain tumor, I was shocked. It was a pretty difficult time for all of us. I think it was challenging for my parents to care for me and for Andrew, as well as juggle their jobs. What was especially hard for me was that even though Andrew and I sometimes fought, he is still my only brother. At the time, I had been going through my old clothes and toys to donate items I didn’t want or need. Then I thought, “Why not have a garage sale to raise money for Children’s?” I had never done anything like this, and I had no idea of how much work was involved. I practically spent my entire summer working on it. Fortunately, I’m a pretty good organizer. There was so much to do! I went through every item to make sure it was something someone might buy. Then I had to decide on a reasonable price for everything. For “big ticket” items, like my Barbie Swan Lake castle, I did research on eBay to help price them. I originally planned to sell only my things, but pretty soon my parents and relatives started donating things as well. Eventually I had a 30-page inventory of things for sale! We placed ads in newspapers and the reaction was amazing. People were lined up three hours before the garage sale began on the first day. A lot of people came just to donate. Two guys on motorcycles came to buy the Barbie castle intending to give it back to me, but we had already sold it for $100. They still donated the money. My gym teacher dropped by to donate $100 and the Spanish teacher at Andrew’s school paid $100 for a 10-cent stuffed animal. We had hoped to raise $1,000, and we ended up raising more than $3,600! I was beyond amazed. A few weeks later, Andrew and I came to the hospital to present the money to his neuro-oncologist, Dr. Stewart Goldman, and to neurosurgeon Dr. Tadanori Tomita. The money will help fund Dr. Goldman’s research into finding better ways to treat brain tumors for kids like my brother. Discover how you can host your own fundraiser for the hospital at childrensmemorial.org/ circleoffriends. A welcome return, an extraordinary opportunity to shape the future By John M. Costello, MD, MPH Dr. John Costello tours the progress at the construction site of Ann & Robert H. Lurie Children’s Hospital of Chicago. It truly feels like a homecoming to be back at Children’s Memorial Hospital. It’s great to work alongside some of the same clinicians who trained me during my pediatric residency and fellowships in pediatric critical care medicine and pediatric cardiology. One of the main reasons I left my positions at Boston Children’s Hospital and Harvard University to return to Chicago is the incredible potential that Ann & Robert H. Lurie Children’s Hospital of Chicago presents. Its proximity to Prentice Women’s Hospital is a major advantage. This location will enhance our ability to care for newborns with serious heart conditions who need urgent cardiac stabilization and intervention, while keeping them close to their mothers who are recovering from delivery at Prentice. The close proximity to Northwestern Memorial Hospital will also facilitate our ability to transition the care of our patients as they grow into adults with congenital heart disease. Their complex medical and surgical issues are best served by close collaboration between pediatric and adult specialists. Thanks to the generosity of the Regenstein Foundation, Eloise and Warren Batts, and many others, I’ve been given the tremendous leadership opportunity to help shape how we treat children with heart disease both now and in the future. The new Regenstein Cardiac Care Unit will offer tremendous benefits for our patients, their families and our team. It will allow children with heart disease who require hospitalization to remain in the same unit with the same caregivers from admission to discharge, significantly improving the patient care experience. Technology and expert care will be brought to patients, rather than requiring them to transfer to different units within the hospital. State-of-the-art technology will be used to monitor patients, including a heart rhythm monitoring system that can be accessed from anywhere in the hospital or remotely, and near-infrared spectroscopy, a non-invasive method for monitoring oxygen supply to all parts of the child’s body. To prepare for our transition to this innovative model of care in the new hospital, we’ve designated nine cardiac intensive care unit beds in the pediatric intensive care unit of our current hospital facility. This enables us to pilot the approach, make adjustments and train a highly specialized team of caregivers. I’m very excited about what the future holds. Over the years I’ve learned that it takes a team of committed individuals to care for children with complex heart diseases. I’m privileged to join the specialists in cardiology and cardiovascular-thoracic surgery who are working together to make all of this possible. John M. Costello, MD, MPH, is the Medical Director of the Regenstein Cardiac Care Unit. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 7 Crown Sky Garden Mikyoung Kim, an internationallyknown landscape designer, has completed her innovative schematic design for the Crown Sky Garden on the 11th floor of Ann & Robert H. Lurie Children’s Hospital of Chicago. The space, named in honor of The Crown Family, subtly divides the 5,000-square-foot garden into zones. Areas closer to the cafeteria are designed for high activity and performances, while areas closer to the windows will encourage quiet activity and respite for families and staff. The primary planting in the Crown Sky Garden will be bamboo, and the highlight of this design is a translucent interactive light wall that weaves throughout the garden at different heights and changes color and brightness as people approach it. Mikyoung Kim shares her plans for the Crown Sky Garden with Board members John Bryan, Paula Crown and Maria Smithburg. 8 H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL W IN TER 2 0 10 Designing a healing oasis for children and families By Mikyoung Kim I am a landscape architect, an artist, a musician and a parent. All those roles have informed my perspective on the Crown Sky Garden’s importance as a healing environment. At the start of the project I came to Chicago on a “listening tour” and met so many families who are here for the long haul. Because of this, it felt important to design a space that rewards the everyday experience. So I wanted to create for them a place that seems to be missing in other children’s hospitals: an oasis from the daily operations of the hospital. Children and families are under a great deal of stress in the hospital, as are the doctors and nurses and staff who care for them. They all benefit from having green spaces available where they can decompress and heal. The healing process is larger than MRI machines and pills that you take: it’s also about the experience. What guides the space is the interactive aspects that allow for kids to define the garden. Sound and color are defined through a series of interwoven ribbons of material — bamboos, wood, colored resin panels, water and recycled glass in the flooring. The space is an instrument that children transform by engaging light and sound. The sound is activated by a series of interactive sensors throughout the garden that highlight playful aural conditions of water — sounds like gurgle and splash. These work off of the baseline of the real water runnels that offer a soothing trickling of water throughout the garden. A central interactive LED light wall plays off of the water theme and creates visual aspects of water for viewing and play. We are also integrating historical wood from the Chicago area into the garden, including logs that were part of the buildings at the Columbian Exposition. In my work, I like to focus on designing solutions that are collaborations. For this project, I was privileged to spend time with the Family Advisory Board and the Kids Advisory Board. I came away humbled by the strength of those I met. The maturity of the children and teenagers, and the perspective of the parents, was quite moving. I left feeling a weight of responsibility to make this place very special. Mikyoung Kim is principal of Mikyoung Kim Design in Brookline, Massachusetts. Kim’s award-winning projects have varied from civic gardens and municipal playgrounds to large-scale parks and institutional master plans. Her work has been featured in Architectural Record, Sculpture, Landscape Architecture, Land Forum, and Pages Paysages. She is an Associate Professor and Head of the Department of Landscape Architecture at Rhode Island School of Design. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 9 Planning now for the move to Lurie Children’s By Maureen Mahoney, RN Maureen Mahoney, RN, is Chief of New Hospital Transition and Occupancy Planning. 10 Every time I walk through the lobby and see our brave patients, I am reminded how momentous our transition from Children’s Memorial Hospital to our new facility, Ann & Robert H. Lurie Children’s Hospital of Chicago, will be for them and for generations to come. I’ve been involved in the planning and development of Lurie Children’s since 2006. Our goal is to be 100 percent ready to provide excellent care and service when we open the doors in June 2012. As part of our research, we visited many hospitals across the country that underwent moves similar to ours to learn from their experiences. The message was clear: Plan early, plan well and be inclusive. Everyone, from our physicians and staff to patients and families, is passionate about the new hospital project. They have contributed tremendously at every phase, including programming, design and now transition planning. Our transition plan is quite comprehensive and covers elements such as operations, training for more than 5,000 physicians and staff, moving approximately 200 inpatients in one day and de-commissioning the old building. Staff in clinical departments will have the chance to walk through their future workspace so they can begin to envision what it will look like and how their daily workflow might change. Members of our Kids Advisory Board and Family Advisory Board are helping us determine the best way to prepare our patients and their families for the actual day of the move. Family participation will be encouraged, and we want to allow a parent to be in the ambulance as his or her child is being transported to the new facility to reduce anxiety. At times, the process seems daunting. I’ve never worked harder in my life, but it is worth every minute. I think we’re all going to look back with a lot of pride and joy in what we have accomplished together, and also look forward with excitement about what the future holds. Lurie Children’s will be a great place to provide care and a great place to work. H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL W IN TER 2 0 10 Carrying on Cal’s legacy By Tom Sutter People often ask me if I believe in destiny and because of our son, Cal, I do. His young life has had a purpose beyond what we could have imagined. Tom Sutter and his wife Stacey are the founders of Cal’s All-Star Angel Foundation (calsangels.org). They live in South Elgin, Illinois with their six children: Jessie, Ryan, Jason, Kiley, Ellie and Lexie. Our lives were forever changed when Cal, an all-star baseball player, was diagnosed with acute myelogenous leukemia at age 12. The battle with pediatric cancer is a nightmare no child or family should ever have to experience, but we were blessed to receive an outpouring of support from our community, church and employers. We soon discovered that many families are not as fortunate. I’ll never forget a conversation I had with the dad of a fellow patient. He was going back and forth between two hospitals visiting his wife, who had breast cancer, and his son who had leukemia. This man was going to great lengths to avoid any expenses so that he would have enough money to eat. I told my wife, Stacey, “No matter what happens with Cal, we’ve got to do something to help other families affected by cancer.” Throughout everything he went through, Cal never gave up hope and was always concerned about the well-being of the other children. He was caring and wise beyond his years. Our hearts were broken when Cal ultimately lost his battle with leukemia in August of 2006 at the age of 13. As we mourned, Stacey and I talked about finding a way to carry on Cal’s courageous spirit, to use his short but meaningful life to help others. We founded Cal’s All-Star Angel Foundation the following spring and what started with an e-mail to 30 people has grown into a positive force beyond our imagination. In just a few years, we have raised nearly $500,000 to grant the wishes of nearly 100 pediatric cancer patients (trips, shopping sprees, laptops and desktop computers) and provide financial assistance (rent, bills, groceries and transportation) to their families. We’ve also provided college scholarships and donated countless toys, games and electronics to Children’s Memorial Hospital. Making sure kids have something fun to do in the hospital is important to us because it was important to Cal. In the new facility, Ann & Robert H. Lurie Children’s Hospital of Chicago, Cal’s legacy is continuing. Thanks to our generous supporters, we recently made a significant funding commitment to help bring to life the extraordinary design plans for the hospital’s 17th floor, where children with cancer will receive care. We are the first organization to contribute to the Creative Arts Community Partnership Program, which is enlisting Chicago’s cultural icons to help design various floors of Lurie Children’s, infusing unique themes, art and activities (the 17th floor partner is the Chicago Children’s Museum, for example). In addition, we also plan to help stock the playrooms on the 17th and 18th floors with fun things to do for kids of all ages. We know firsthand how your surroundings can affect your state of mind when you’re in the hospital. A healing environment, with soothing colors, activities and welcome distractions, can help put the whole family at ease. As I envision the moment when I’ll first see the display in the new hospital bearing Cal’s name, I get choked up. Cal would be amazed at what we’ve been able to accomplish in such a short amount of time all because of the people he touched and inspired during the equally short, but meaningful time we all were blessed to have with him. Our hearts will always miss Cal, but we take comfort in knowing his legacy of caring continues. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 11 Building a brighter future for children You can help make Chicago the healthiest place in the nation for children. Our children deserve no less than the very best health care possible. We hope every Chicagoan will contribute to help build the state-of-the-art Ann & Robert H. Lurie Children’s Hospital of Chicago. What could be more important than investing in our children’s health and well-being? Please don’t wait, make your contribution today. Here’s how: Learn more: heroesforlife.org Make a gift: 773.880.4237 (or online) Share your story: childrensmemorial.org/ tellusyourstory 12 H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL W IN TER 2 0 10 Why I give By Joan Hinsdale, RN, MBA I knew I wanted to become a nurse after taking care of my ailing grandmother in my pre-teen years. It gave me a sense of pride to be able to help her do basic things such as eating, getting dressed and taking medications. On my drive to work every morning, I think of the day ahead and feel fortunate to have the opportunity to contribute to the care of children and families. Joan Hinsdale, RN, MBA, is a pediatric neurology nurse at Children’s Memorial Hospital, where she began her nursing career in 1985. She is a co-chair of Heroes Among Us, the employee fundraising initiative of Heroes for Life. My greatest rewards are the hugs, the kids’ artwork and the tearful words of gratitude from parents. I have a journal with the name of every child I cared for who has left this Earth. Each one of those children has affected my life in a profound way. They are my angels. I am inspired by the ability of our staff to love each child and family throughout an illness. We often become an extension of the family. The daily gestures of human kindness are why I continue to work at Children’s Memorial Hospital. I have tried other hospitals and have found that nothing matches the quality of care here. Once you work at Children’s Memorial, you are never the same. It has made me realize what is most important in life. When thinking of ways to motivate my fellow employees to give to Heroes for Life: Campaign for Ann & Robert H. Lurie Children’s Hospital of Chicago, I was reminded of my mother. Why? Because she would always tell me to give a gift that I would love to have myself. I want to do my part to help ensure that Children’s Memorial, soon to become Ann & Robert H. Lurie Children’s Hospital of Chicago, is here for my grandchildren and generations to follow. I donate to the cause because I want the hospital to touch as many lives as possible. Without contributions from all of us, the work we do every day would not be possible. Each dollar given helps fund the most advanced technology and equipment, provide private rooms where children can heal better and recruit the most knowledgeable and experienced caregivers. To me, no matter what your role is — cook, technician, nurse, unit clerk, doctor, or operator — we are all heroes when we go out of our way to make a difference in the life of a child. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 13 Giving my time, receiving the greatest rewards By Roz Supera Roz Supera (with a young surgical patient and her father) has been a volunteer in the surgical waiting area since 1975. 14 I have always had a love for children and an interest in health care. When my youngest child entered school, I eagerly took a volunteer position in the surgical waiting room at Children’s Memorial Hospital. I’ve been a volunteer for 35 years now, and it has turned out to be a life-altering experience. When I started, some of the hospital rules were quite different. Parents had to say goodbye to their children in a surgery holding area and were not allowed into the recovery room after their children woke up. I would often be with children just before they went into surgery, when they first came out and even in the operating room sometimes. But there is one thing that has not changed and that is the superb care given to children and their families. I am often asked the reason for my longevity as a volunteer. My answer is simple: the surgeons, anesthesiologists, nurses and other staff at Children’s Memorial are simply the best. I have never witnessed one instance where patients and their families were not treated with the utmost care and respect. H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL W IN TER 2 0 10 Whatever I have given to this hospital pales in comparison to what it has done for me. I have a wonderful family and many interests and involvements, yet those moments when I can be of assistance to families during a stressful time in the surgical waiting room have defined my life. The gratification is impossible to fully describe, and I have been touched by so many families over the years. It has been a privilege to be associated with this very special institution, and I look forward to an exciting future when Ann & Robert H. Lurie Children’s Hospital of Chicago opens in 2012. I’ve taken a tour of the building, and it’s going to be a wonderful facility. What will make it really special, though, will be the people who work there — the same people who have made Children’s Memorial such a special place over the years. Every day is inspiring By Gina Landfair, OTR/L The people I meet through my job inspire me every day. How many people can say that? As a pediatric occupational therapist, my ultimate goal is to help children function at their maximum potential. Gina Landfair, OTR/L, cares for Children’s Memorial patients at the Westbrook Corporate Center, near the Children’s Memorial Outpatient Center in Westchester, Illinois. The work of children is to play, learn and be active members of their families and communities. A child’s medical condition can get in the way of these activities. For example, a child with a neurological disorder may suffer muscle weakness, poor coordination and paralysis, which can hinder his or her physical and developmental growth. Initiating occupational therapy during preschool years is most beneficial because this is when learning and development is occurring rapidly. It becomes more difficult for a child to learn particular skills after the preschool years. I work with children who have sensory processing disorders (sensitivity to textures and clothing, for example), orthopedic injuries or developmental delays. During an occupational therapy session, we might work on several different areas, from fine and visual motor skills, to visual perceptual skills strengthening exercises or a range of motion exercises. A patient who really made an impression on me was a 3-year-old girl with congenital musculoskeletal deformities. Initially, she could not hold her cup, color with a crayon, sit on a swing or crawl. But through weekly occupational therapy, she learned to feed herself, draw and assist with self-care tasks like dressing and bathing. She and her family are an inspiration to me. They taught me a great deal about the power of determination and hard work. Long before I started working at Children’s Memorial, I was impressed with the staff. After one particular visit, I knew I wanted to work here. My daughter, who has both physical and cognitive challenges, had developed a deep fear of hospitals and doctors. I’ll never forget how the nurses put her at ease and kept her smiling, and how personable and kind the physicians were. My personal experience as a parent of a special-needs child influences my approach with my patients and families. I know that many occurrences can interrupt a family’s routine and I always consider this when creating their home exercise program so that they can easily incorporate it into their day or combine it with other therapies. My daily interactions with my patients have taught me to approach life with a fun, happy and hopeful outlook. I am inspired by their ability to surpass their goals in the midst of dealing with so many challenges. They have a unique way of spreading joy into your life. It feels wonderful to come to work every day. I am proud to be a part of this special place we call Children’s. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 15 My harmonious life, thanks to Children’s By Michael Hall, DMA My parents were told I would never walk. As a baby, my congenital hip condition was improperly treated by an out-of-state doctor, causing my pelvis and femurs to shatter. I spent the next 18 years undergoing dozens of corrective surgeries at Children’s Memorial Hospital, where we received hope for the first time. Michael Hall, DMA, lives with his wife, Kristine, and their two daughters in Chicago’s Hyde Park neighborhood. He performs internationally as well as locally with the Chicago Philharmonic and the Ravinia Festival Orchestras, and is on the faculties of Illinois Wesleyan University, VanderCook College of Music and the Chicago Academy for the Arts. 16 The late Mihran Tachjian, MD, was my main surgeon and savior. He was determined that I would walk, constantly reassuring my mother, “Mommy, we will fix your baby,” as he tried a number of experimental procedures to correct my legs and hips as I grew. I spent so much of my life at Children’s that it felt like home. My parents made the trip almost daily from our home in Valparaiso, Indiana, to the hospital to be with me. Many times my mother would sleep overnight at the hospital and then drive to work in Elkhart, Indiana, and back again. The love from my parents was bottomless. I can only dream of being as dedicated a parent. One day, my parents bought me a viola from the hospital’s White Elephant resale shop. They had noted my interest in a piano in the hospital’s rec room and thought I would enjoy learning a new instrument. I soon fell in love with music, a passion that has steered the course of my life. My viola has taken me through three college degrees and several times around the world. Today I am a professional musician and a music teacher at three institutions. I’ve also performed on music soundtracks and made commercial recordings. I even met my wife through music and we now have two beautiful daughters. Children’s has done so much for me: It gave me the precious ability to walk, which I did for the first time at age 16; it fostered my love of music; and it enabled me to appreciate the simple things in life. As a child in the hospital, I had only seen the world through a television screen. I couldn’t wait to get out and experience it for myself. I owe my life today to Children’s. It’s not just the renowned medical treatment that makes it special. It’s the never ending support offered to children and families, who are experiencing the most difficult times in their lives. There were so many wonderful people at Children’s. We never felt like numbers; we were loved family members. I had my last major surgery at 18 years old and was told I would need additional procedures around age 32. I’m now 42 and still doing great. Dr. Tachjian’s work is even better than he imagined. In fact, I’ve hiked more than 2,000 miles throughout the world, and last year I completed my first marathon as part of the Children’s Memorial Marathon Team. I felt compelled to give back, to reciprocate in the hope that young patients today would see that Children’s does everything possible to help make our lives as fulfilled and enriched as we dare to dream. H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL WIN TER 2 0 10 ROUND UP Gold Coast Fashion Award Show Marks 55 Years In October, more than 1,300 people attended the 55th Annual Gold Coast Fashion Award Show, the signature fundraising event of The Children’s Service Board, an Affiliated Organization of Children’s Memorial Hospital. The show’s net proceeds of more than $370,000 will go toward the board’s fundraising commitment to the Division of Pediatric Surgery at Children’s Memorial, the largest provider of pediatric surgery in the Chicago area. From left to right: Co-chair Vicki Stauber, 2009 Gold Coast Fashion Award winner Romona Keveza, Co-chair Kim Friesen and The Children’s Service Board President Jeniece Higgins. Marathon Team Goes the Distance This fall, 312 runners went the distance for kids in the Bank of America Chicago Marathon, raising more than $370,000 in net proceeds for patients and families at Children’s Memorial Hospital. The Children’s Memorial Marathon Team is a dedicated group of runners who fundraise for the hospital during their training to help improve the lives of seriously ill children. Carl Allegretti, pictured with his wife Tammy, was the team’s top fundraiser, raising more than $81,000 – a record for the team and the marathon. Carl and Tammy are grateful parents whose son Joey has been treated at Children’s Memorial for leukemia. To learn more about Children’s Memorial Marathon Team, please call 773.880.3706 or visit childrensmemorial.org/marathon. COMING UP NEXT: Kohl’s Step Up for Kids on January 30 Help the kids at Children’s Memorial Hospital reach new heights by participating in Kohl’s Step Up for Kids, a stair climb to the top of the Aon Center, Chicago’s third tallest building. The event benefits K.I.D.S.S. for Kids, an Affiliated Organization of Children’s Memorial, which raises funds for the hospital’s Department of Family Services. Some step as part of an organized team, including Lochie Daish, pictured here, a member of the British School team, which raised more than $8,000 last year. Make plans to join us on Sunday, January 30, 2011 at 8 a.m. Please call 773.880.3036 or visit childrensmemorial. org/stepup to register today. Thanks for another great year of improving children’s lives! Celebrate the year’s accomplishments with us. Look for the 2010 Annual Report online in February 2011: childrensmemorial.org/ annualreport. In our donor survey, many of you told us that you prefer reading the Annual Report online. In response, we are greatly reducing the number of printed copies. Thank you for helping us to conserve natural and material resources. And while you’re online, sign up to receive monthly e-updates at childrensmemorial. org/heroesupdate. H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010 17 CHILDREN’S MEMORIAL HOSPITAL 2300 Children’s Plaza, Box 4 Chicago, Illinois 60614-6636 Address Service Requested Non-Profit Org. U.S. Postage PAID Chicago, IL Permit No. 3470 childrensmemorial.org heroesforlife.org Also visit us on: Help children in the hospital this holiday season Your gift will help provide compassionate care for children and families in the hospital. For example: u Your gift of $50 can place special dolls that absorb a parent’s scent into the incubators of critically ill newborns, allowing parent and child to bond. u Your gift of $100 can provide 3 months of assistance with parking and transportation costs for a family experiencing severe financial difficulty after their child’s cancer diagnosis. u Your gift of $250 can house a family for a week at Kohl’s House while their child recovers from organ transplant surgery. u Your gift of $500 can provide the irreplaceable gift of bereavement photography services for a family coping with the impending loss of a child. u Your gift of $1,000 can provide a year’s supply of musical instruments and materials for children in the hospital’s music therapy program. Please, give today so all our children will have hope for a healthier tomorrow. Return the enclosed envelope, visit childrensmemorial.org/heroesmag or call 866.355.2525. Your gift helps patients like Kayla When she was just 2 years old, Kayla was diagnosed with leukemia and underwent chemotherapy and radiation treatments for nearly 3 years. Today, thanks to the expert care at Children’s Memorial Hospital, 9-year-old Kayla is in remission. She is a straight-A student who enjoys dance classes. “You’d never know what she’s been through,” says her mother, Michelle. “She’s doing so well, and every day we thank God for that.” Give online at childrensmemorial. org/heroesmag or call 866.355.2525.