Riley Messenger, Winter 2012

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What’s Inside

Riley Champions Presented by

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Pg. 3-10, Cover Story: Meet the 2013 Riley Champions Pg. 11

Celebrating eight courageous young people chosen to serve as ambassadors and advocates for Riley

In the News Indiana CMN Champion BJ Yoho goes to Washington, D.C.

Jonathan Nugent Valparaiso

Breana Allen Indianapolis

Pg. 12

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Gold Medal Gratitude An Olympic athlete gives back Special Section Pg. 13-16

Riley’s Towering Achievement What the Simon Family Tower means for patients and families Pg. 17

Voices of Riley: How Riley parents helped design the Tower Carmen Schleppy Brazil

Back Cover

Why I Give A couple turns grief for their daughter into a legacy of hope

Alex Rice Bloomington

Megan Whitaker New Market

We welcome your story suggestions. email ideas to g Please tshepherd@rileykids.org.

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Visit RileyKids.org/champions to see a video of the 2013 Riley Champions

Hannah Jacobs Plymouth Anissa Bredemeyer Roanoke

Cole Barnett Newburgh

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Riley Champion 2013

Jonathan Nugent 15 “I don’t want kids to go through what I went through.” – Jonathan Nugent

-year-old Jonathan Nugent of Valparaiso, Ind., brought many of his classmates to tears with an unforgettable class presentation he gave as part of a “celebration of life.” Jon had been diagnosed with a rare brain cancer when he was a sixth-grader, in March 2009.

“I put together a PowerPoint that showed what I went through, how I went from being a normal kid to having chemo and radiation,” he says.

Jon’s candid presentation helped his peers understand his cancer journey and answered the questions they had been afraid to ask.

The dramatic change in their son’s personality that began in fifth grade and baffled Joe and Jo Nugent was first misdiagnosed as a behavioral disorder. Then Jon lost his speaking

ability during 30-second “episodes” in which he became pale and sweaty and smelled an odd odor. The episodes were seizures. Scans revealed a tumor in the area of Jon’s brain that controls emotions and inhibitions.

His treatment through Riley Hospital for Children at IU Health included surgery, chemotherapy and 13 proton therapy sessions at the IU Health Proton Therapy Center, which he completed in July 2010.

After a stroke, Jon worked hard to relearn basic skills, including walking, and to strengthen a body ravaged by a 70-pound weight loss.

After working for nearly an entire season to be able to jog one lap around his school

gym, the Washington Township High School sophomore now plays varsity soccer, JV volleyball and manages two girls’ athletic teams while earning high grades.

He also makes time to give back.

With the support of his family, school administrators and community, he has raised funds for research through a host of his own creative efforts. He also raised $10,062 in this year’s Northern Indiana Ride for Kids to benefit the Pediatric Brain Tumor Foundation. “I don’t want kids to go through what I went through,” he explains.

“Most people give more than he asks,” his mother adds. “People look out for him and look up to him. He has taken something that could have been detrimental and turned it into something good.”

Jon’s commitment to helping others doesn’t end with fundraising. This Champion plans to become a doctor— most likely, a neuro-oncologist.

Riley Research Targets Brain Cancer A research team at Riley led by Karen Pollok, Ph.D., is using human tissue implanted in animals to study drug therapies for pediatric brain tumors (glioblastoma). “From basic researchers to clinical researchers and in between, we continue to fight to help find ways to manage or cure this dreadful disease,” says Dr. Pollok.

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Riley Champion 2013

Breana Allen “She is my champion.” – Robyn Allen-Miller Breana treasures the 16th birthday gift she received from Riley’s Child Life staff — a team of 27 that supports patients through play, music, art and dance therapy

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efore she was a Riley patient, Indianapolis high school senior Breana Allen hadn’t heard of Child Life. But now the term means everything to Breana: her lifeline in coping with terrible pain and the dream of a career that drives her to succeed in school in spite of huge challenges.

Breana was diagnosed at birth with sickle cell disease — an inherited condition which causes blood cells to

form in a crescent shape. Breana was 5 when she had her first sickle cell crisis, triggered by a jump into a cold pool. The painful episodes are caused when the abnormally-shaped blood cells can’t flow normally.

“You don’t want to move,” explains Breana, rubbing her hands over her skin as she recalls the pain. “It’s deep, deep down in your bones.” Her worst sickle cell crisis came at age 16, when the pain literally took her breath away.

“It was horrible,” recalls her mother, Robyn Allen-Miller, who called an ambulance that day. “She was saying it felt like someone was sitting on her chest.” Through every ordeal, Breana has found a “home away from home” on the hematology/oncology floor at Riley Hospital for Children at Indiana University Health. There, doctors calm her pain with medications, and Child Life Specialists lift her spirits with activities. Breana treasures the memory of an evening when she was struggling with pain-induced sleeplessness, and Riley Child Life Specialist Jaclyn Smith offered her a lifeline. “It was 6 p.m.; it was time for her to go home,” Breana recalls. “But she stayed with me and talked with me until I fell asleep. I will never forget that.”

The warm and outgoing teen now volunteers with Riley’s Child Life staff about twice per week. Her goal of becoming a Child Life Specialist has helped her stay on track to graduate from Pike High School this spring in spite of her many hospitalizations.

Breana has one piece of advice for other students dealing with sickle cell disease: “Don’t give up!”

Riley Hospital social worker Andy Harner admires the way Breana takes younger Riley patients under her wing, and the way she bravely shared her story at a major sickle cell conference. He nominated her to become a Riley Champion. “Breana continues to give back even though she struggles herself,” says Harner. “She is bright and will represent Riley well.”

Breana’s mother puts it even more simply: “She is my champion.”

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Riley Champion 2013

Carmen Schleppy “We help each other stay strong.” – Carmen Schleppy

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armen Schleppy is a survivor in more ways than one. The bubbly 9-year-old has a contagious smile and a can-do attitude that has seen her through a horrific ordeal that began in May of 2011.

Carmen was trying to warm up by the fireplace in her Brazil, Ind., home when her skirt caught fire. Carmen was rushed to the hospital and immediately airlifted to Riley Hospital for Children at IU Health, which offers the state’s only pediatric burn unit.

She suffered burns on 60 percent of her body, requiring nine surgeries and a three-month stay at Riley. Nurses helped Carmen get through painful dressing changes. Music therapy sessions offered through Riley’s Child Life program helped keep her spirits high. “The nurses made things for me and made me feel special,” said Carmen.

“The care they provided at Riley was outstanding,” said Carmen’s mother, Colleen Schleppy. “The nurses were so encouraging. They continue to be a big part of her life.”

The family is also thankful for Riley burn unit physician Rajiv Sood, M.D., who has worked with Carmen from the beginning. “Dr. Sood is compassionate yet to the point. He helped us better understand what to expect,” says Carmen’s father, Tony Schleppy.

“I can’t think of any other place I would have wanted my daughter to be. The level of care she received was exceptional.”

Carmen’s strong will and positive attitude helped her recover at a remarkable rate. Today she has extensive scarring, but she has regained enough mobility to participate in

cheerleading — and even do the splits.

Carmen is now working to help other burn survivors. She raises money for Hoosier Burn Camp, which gives burn survivors a week of fun in a safe and nurturing environment. “We all get along and tell each other how we got hurt. We help each other stay strong,” explains Carmen.

Carmen is also working with one of her former Riley nurses to start Compression for Compassion, a program to send compression garments to burn survivors in third world countries. She happily donated her own garments to the cause and encourages others to do the same.

“Her resilience amazes me,” says Tony. “Through all of her pain she was always so positive, always kept her chin up.”

Carmen’s treatment in Riley’s burn unit included indirect calorimetry, which measures caloric needs to provide optimal nutrition for healing

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Riley Champion 2013

Alex Rice

“There aren’t enough days in the week for all Alex wants to do.” – Steve Rice

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ith a schedule including weekly voice lessons, weight training, a spot in a TV commercial and award ceremonies, you might think Alex Rice is a local celebrity. You’d surely never think he had a disability.

As a 3-week-old baby, Alex underwent his first surgery at Riley Hospital for Children at IU Health to place a shunt to manage his hydrocephalus. Ultimately, he was diagnosed with Moyamoya, a disease causing the arteries leading to the brain to narrow that resulted in multiple strokes within his first year of life. His mother, Margie Rice of Bloomington, Ind., remembers the way Riley nurses and doctors took time to educate her and her husband Steve about Alex’s conditions. “They never made us feel that it was wrong that we were asking questions,” Margie says. Through the years Alex has been treated by a myriad of Riley specialists, including neurosurgeon Joel Boaz, M.D. Dr. Boaz connected Alex with a surgeon at Children’s Hospital Boston, who helped develop a unique surgery to revascularize the brain.

Alex received that surgery just before his second birthday and continued the rest of his care at Riley.

Now, at age 17, Alex remains positive, involved and eager to meet new challenges. He has managed his school’s basketball, track and football teams. One time he was tackled on the sidelines, but he brushed off his mother’s concern by telling her, “Mom, it’s a contact sport.” Seeing their son’s love for sports inspired the Rice family to work to bring more adaptive and

Alex volunteers regularly at WonderLab in Bloomington

universal sports to Bloomington.

Alex has participated in a huge variety of activities: martial arts; weight training; baseball; soccer; basketball; and horseback riding, which led to a gold medal win at the Special Olympics. Alex also volunteers at Bloomington’s Science Museum, WonderLab and has received multiple awards recognizing his involvement in his school and community.

His action-packed personality fits in well at Camp Riley, where he has gone each summer since he was eight.

“It’s really fun because I learned to do scuba diving,” Alex says. His parents see Camp Riley as an incredible gift.

“We see Alex — and we believe he sees himself — as a much more capable young man because of the way he has grown up at Camp Riley,” says Steve.

Margie and Steve continue to be amazed at how their son inspires those around him with his energy. His father says, “There aren’t enough days in the week for all Alex wants to do.”

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Riley Champion 2013

Hannah Jacobs

“She has been through a lot. I look at her, and I smile. I’m just proud to be her mom.” – Lisa Jacobs

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t Plymouth High School’s first Riley Dance Marathon, more than 200 students danced their final choreographed number at halftime of a boys’ varsity basketball game.

Spectators gasped, then cheered, when a dozen students in the upper bleachers turned cards that revealed a marathon total of $10,483.39—but no one was more shocked than Hannah Jacobs, 16, who started the ball rolling.

Her parents Art and Lisa Jacobs were in tears.

“It wasn’t the amount of money they raised,” Art says. “It was that Hannah was able to lead a group of people to do such good.”

Hannah had an excellent role model—her older sister Amy, who served on Ball State University’s Dance Marathon committee. Once her family attended Amy’s event, Hannah became determined to bring a dance marathon to Plymouth. “Both of my kids have very caring hearts,” Art says.

Hannah teamed up with a fellow Riley kid and PHS student, her friend Cassie Gaines, and the two worked tirelessly on the January 2012 inaugural marathon. “This was the single most inspiring event of true teamwork that we’d had in a long time,” says Aimee Portteus, director of guidance at the high school.

Hannah has received care at Riley Hospital for Children at IU Health since infancy for issues related to spina bifida, including several surgeries on her back and feet, and reconstruction of her bowel and bladder. She is paralyzed from the waist down.

“She has been through a lot,” her mother Lisa says. “I look at her, and

Hannah Jacobs, Plymouth, with Riley Urologist Mark Cain, M.D.

I smile. I’m just proud to be her mom.”

The outgoing teenager is active in her church youth group and Key Club, serves as manager for the cross country team, and has volunteered at a local food bank. Her goals include going to college to become an elementary school teacher. “I think Hannah affects her fellow students most by simply being herself,” Aimee says.

“She doesn’t act like, nor do they treat her like, a girl in a wheelchair; she’s just Hannah. She’s an important part of them just because of who she is.”

With her lifelong association with Riley Hospital, this Champion feels qualified to spread the word about Riley: “They are amazing—super, super, super nice. It’s a second home.”

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Riley Champion 2013

Megan Whitaker “Kroger has been phenomenal with Megan. They would do anything for that girl.” – Debi See

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ust days after Megan Whitaker was born, joy turned to deep concern.

Doctors discovered each of her heart chambers had only one blood vessel leading out of it instead of two — a condition known as truncus arteriosus.

The family took the advice of their pediatrician and traveled from their home in New Market, Ind., to Riley Hospital for Children at IU Health, where heart surgeon John Brown, M.D., performed life-saving openheart surgery.

The following night while she was recovering, Megan’s heart stopped, requiring CPR. “That was scary,” recalls Megan’s grandmother, Debi See. “A 5-pound baby and they’re doing compressions...but they brought her back.” That was just the first of four open-heart surgeries Megan has had so far at Riley Hospital.

Kroger employee Debi See with her “They saved my daughter’s life,” granddaughter, says Megan’s mother, Christy Megan Whitaker Whitaker. “It’s a great hospital.

They have kept her alive.”

Recently, Megan faced even more major surgeries, including spinal fusion to correct curvature, and neurosurgery for Chiari malformation, which caused some of Megan’s brain explains. “There were people from tissue to protrude into her spinal column. “I have never seen a child like corporate calling to know how she was doing. Kroger has been phenomenal Megan,” says her grandmother. “I’ll ask her, ‘are you okay?’ She’ll say, ‘I’m with Megan. They would do anything for that girl.” From selling “I’m part okay, because I’m at Riley.’ She really understands that she’s in a good place.” of Megan’s heart” T-shirts, to hostDebi says along every step of Megan’s ing a bake sale and cookout, Kroger’s support has been “awesome” in this tough journey, they have been blown away by the support they have received 14-year-old’s eyes. “It helped my famfrom Kroger, her employer of 23 years. ily, and it helped pay the bills and keep a roof over our heads,” Megan “Not just my store, I’m talking my explains. whole zone which is 18 stores,” Debi

The Kroger Co. is a long-time advocate of Riley, supporting the Riley Champions program and fundraisers such as John Andretti’s Race for Riley

Now that she has healed from her latest surgeries, Megan has been working with her grandmother to promote the Race for Riley icon sales at Kroger by sharing her Riley story at events. With Kroger’s sponsorship of the Riley Champions program, Megan will have even more chances to express her gratitude while inspiring other kids. “I feel really great about it,” she says. “I’m not only helping myself, I’m helping other kids get better.”

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Riley Champion 2013

Cole Barnett

“Cole is not going to let this disease get in the way of doing what he wants to do.” – Heidi Barnett

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hen 14-year-old Cole Barnett plays shortstop on Newburgh, Indiana’s All-Star baseball team, he’s focused on the action. But the athlete has other things on his mind, too—such as whether he ate properly before the game, his blood-sugar level and operating the insulin pump attached to a small tube inserted under the skin of his abdomen. Playing sports in hot weather is especially challenging for the teenager with type 1 diabetes.

Cole, a freshman at Castle High School, was diagnosed in August 2004 at age 6. From the intensive care unit of a hospital near his home, he was sent to Riley Hospital for Children at IU Health, where his parents Jim and Heidi received training on how to help their son manage a disease they knew nothing about.

They are wiser now, times two: Cole’s older brother Kennan, a senior at Castle, was diagnosed with type 1 diabetes as a 16-year old sophomore.

The brothers were always close— “he’s my best friend,” Cole says—but sharing the disease brought them even closer. For continuing diabetes care, Riley’s partnership with Deaconess Gateway Hospital in Newburgh has enabled Cole to see Riley pediatric endocrinologist Juan Sanchez, M.D., right in his hometown.

“I want Cole to play baseball and only worry about striking out or turning that double play,” his mother says, “not about his blood sugars going low and having to take himself out of the game.” To help make that wish a reality, Cole’s family helped to start a local chapter of the Juvenile Diabetes Research Foundation in their area, and

they have been a driving force behind an annual diabetes walk at Holiday World that has raised more than $2 million in seven years. “The money will go for research toward a cure,” explains Cole, who has been amazed at how his teams, church and community turn out for the event.

Cole and his family also meet with other families who have a child newly diagnosed with diabetes. Cole says he wants the other kids to know “that you can get through it, that it doesn’t have to be as big of a deal as people make it out to be.”

“Cole is not going to let this disease get in the way of doing what he wants to do,” Heidi says. She wants him to keep that winning attitude until a cure is found, which the family is optimistic will be in their Riley Champion’s lifetime.

Riley Diabetes Research Riley medical researchers are currently conducting a number of studies on type 1 diabetes, including some through TrialNet, a group of leading diabetes researchers. TrialNet offers blood tests to relatives of type 1 diabetes patients to identify those at increased risk.

Scientists hope this research will result in new ways to slow down or prevent diabetes.

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Riley Champion 2013

Anissa Bredemeyer “I’m not sure where we’d be today if we hadn’t made the trip to Riley.” – Angela Bredemeyer

Keeping Tabs Anissa reaches out to Riley families by collecting pop tabs for Ronald McDonald House.

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n many ways, Anissa Bredemeyer is a typical teenager. At age 14 she likes spending time with friends, reading a good book and playing with her Boston terriers. Yet Anissa is anything but typical.

If you look on her wrist, you just might spot her Supergirl watch. It’s a timepiece that carries with it a story of uncertainty which manifests into resilience and courage. Anissa’s mother bought her the watch as a gift to help her deal with unimaginable

pain that consumed her younger years — pain for which no one seemed to have an answer. It all began when she was only 3-years-old. Doctors told her parents she had a bad case of the stomach flu. But the symptoms only intensified, triggering countless trips to the doctor and test after test. Anissa lived with relentless nausea and pain, robbing her of many childhood joys.

Desperate for answers, her family made the two hour drive from their home in Roanoke, Ind., to Indianapolis

to see Joseph Croffie, M.D., a pediatric gastroenterologist at Riley Hospital for Children at IU Health. “We weren’t getting any real help until we went to Riley,” said Anissa’s mother, Angela Bredemeyer. “Dr. Croffie gave us faith in the medical field just when we had lost all hope.”

Dr. Croffie diagnosed Anissa with Crohn’s disease, an inflammatory bowel disease with no cure. “Dr. Croffie constantly worked on her case,” Angela said. “We knew he was not going to give up on her.” Testing also revealed Anissa had arthritis.

Riley physicians worked in collaboration with Mayo clinic to find an effective combination of medications, and today, Anissa’s Crohn’s and arthritis are in remission.

Through this challenging chapter in her life, Anissa has displayed strength and poise. She raises funds for the Fort Wayne chapter of the Crohn’s and Colitis Foundation of America and dreams of becoming a pediatric gastroenterologist. “Through Riley, Dr. Croffie has inspired me so much,” said Anissa. “He has been there, always holding my hand and never giving up on me — never allowing me to give up on myself. I want to do that for other kids going through this.” Angela Bredemeyer has no doubt her daughter will do just that and more. “It is so amazing to watch Anissa grow and thrive. I’m not sure where we would be today if we hadn’t made the trip to Riley.”

If you happen to cross paths with Anissa, you don’t need to look at her Supergirl watch to see a hero. The real champion is right in front of you.

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In the News 10-year-old Bloomfield boy meets the President BJ Yoho is one of the most motivated kids you’ll ever meet. With an ear-to-ear smile, BJ is eager to bring joy into other kids’ lives. Born with spina bifida, BJ also knows the halls of Riley Hospital for Children at Indiana University Health like the back of his hand. His courage and determination to help others despite serious medical obstacles is what led to his selection as the 2012 Children’s Miracle Network Hospitals Champion for Indiana. As the Riley ambassador, BJ and his family joined CMN Champions from all 50 states in visiting Washington, D.C. (Sept. 16-18), and Walt Disney World (Sept. 19-22) to inspire others to support children’s hospitals.

“I liked Washington, D.C., more than Walt Disney World,” said BJ. “Meeting President Obama — he is my favorite President; actually, he is my number one President. He was nice. He talked and gave high-fives to everyone.”

For BJ, serving as the Riley ambassador can be summed up easily, “It feels great because I like to help kids.”

Dubbed “BJ Claus” by his friends and family, BJ enjoys handing out toys at Christmas to patients at Riley Hospital. In August, BJ was honored for his CMN Champion role during an all-school assembly at Eastern Greene Elementary School.

His school started a Kids Caring & Sharing fundraiser in his honor.

BJ Yoho, Bloomfield

OF NOTE

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A free gift box is being offered to schools to help teachers include philanthropy in their everyday curriculum. The box includes a graphic novel entitled “The Adventures of Phil Anthropy and Friends,” and is also stocked with “Go Give” playing cards, conversation starters and giving circle tokens. To order a box for your school, visit the “Free Supplies” link at KidsCaringandSharing.org.

Purchase Riley Holiday Cards exclusively at RileyHolidayCards.com.

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The Riley Cancer Center and Burn Center will soon celebrate a move to the Simon Family Tower. The new Neonatal Intensive Care Unit (NICU) will open in January 2013.

Enjoy free admission on Dec. 7 to the James Whitcomb Riley Museum Home. Visit RileyKids.org/museum.

More than 1,000 former Riley patients — some born as early as 23 weeks’ gestation—gathered with family members to reunite and share stories at the Riley NICU and ECMO Reunion on Sept. 8.

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Children with cancer and other blood-related diseases gathered for an Olympic-themed Family Celebration on Sept. 29. Approximately 400 patients, family members and staff attended.

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Attended by 3,000 students and alumni including 55 campus organizations, the 22nd annual Indiana University Dance Marathon raised a record $2.1 million and surpassed $12 million in lifetime donations for the Ryan White Infectious Disease Center at Riley Hospital for Children.

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Riley Highlights Olympic gold medalist thanks Riley Indianapolis native Lauren Cheney, who helped the U.S. National Soccer team win gold at the 2012 Summer Olympics, showed how much she appreciates Riley Hospital by accepting an invitation to appear as a guest at the Riley Annual Luncheon on November 15, 2012. Cheney underwent successful open-heart surgery at Riley Hospital for Children at age 3. “Riley Hospital changed my life and made it possible for me to get to where I am today,” says Cheney. “I am honored and excited to attend the Riley Annual Luncheon to be a part of a hospital that truly saves and changes lives.” Cheney offers this advice to other children facing medical challenges: “Accept your obstacle and do whatever you can to make the most of it. And, of course, never, ever give up!”

Remind you of a movie?

Holiday cheer and appreciation for Riley Hospital inspired Nick Watkins of Wabash, Ind., to decorate his house 100,000 bulbs! The “Lights for Riley” display dances to seasonal classics and hit songs, and donations support Riley Hospital.

Visit www.RileyKids.org/events.

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Visit KohlsCaringForOurKids.org Thanks to a grant from Kohl’s Cares, KohlsCaringForOurKids.org offers positive parenting advice and resources, including videos featuring Tony Dungy.

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Braden Tamosaitis, 7, Camby, and Conner Smith, 12, Bowling Green, Ind., will always remember their first Colts game. As honorary Riley Coin Toss Kids, each received four tickets, limousine transportation, a Colts jersey, recognition at mid-field and the opportunity to participate in the pre-game coin toss.

How can I help Riley?

Host a fundraising event for Riley (visit www.rileykids.org/events for guidance) Make a gift in honor of your favorite Riley patient or staff member Switch to Riley license plates (Riley receives $25 for each plate purchase)

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Simon Family Tower Celebration of Children

August 29, 2012

Riley’s Towering Commitment to Children Children and families seeking hope and healing are being welcomed with an unprecedented level of comfort at Riley Hospital for Children at IU Health.

The new 675,000 square foot inpatient hospital was made possible by IU Health and generous donations to Riley Children’s Foundation, including a $40 million gift from the Simon family. It adds much-needed space and state-of-the-art amenities including: 300 private patient rooms; 16 operating rooms; two cardiac catheterization labs; an expanded emergency department; a 48-bed PICU; a 60-bed NICU; heart center; and expanded burn and cancer units.

Several units are now open with all floors scheduled to be complete by the end of 2013.

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“Thank you. I say that with tears in my eyes – just thank you. People behind this project obviously listened to those who have been in the trenches.

They took care of all the little things that help a family while they’re enduring a hospital stay with a child.

We have nothing but love and pure gratitude for the Simon Family.”

-Riley mother Katie Law, Fort Wayne

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Ramonie Smith Indianapolis

Simon Family Tower

Celebration of Children August 29, 2012

“It’s a special day. I feel blessed and honored to be a part of it,” said Heidi Webster, as she prepared to step on stage.

During this historic celebration, Heidi was among the former Riley patients who lined the stage representing all 10 decades of the hospital’s history. From Dorothy Murphy, who contracted polio in the 1920’s, to Harli Culy, who was rushed to Riley Hospital for Children at IU Health as a premature newborn in January 2012, each patient stood as a reminder of the countless lives that have been saved or forever changed by Riley.

In Heidi’s case, life-saving heart surgery gave her the chance for a full life. With the birth of her first child approaching, Heidi spoke emotionally as she described what it meant to be a part of this historic celebration. “No matter what milestone we reach, it’s only because of Riley that we’ve gotten there.”

“Nothing is more important than making sure all Indiana children have access to the highest quality care that is provided at Riley Hospital. We want to thank you for giving us the opportunity to be part of something so incredible and meaningful.”

- Cindy Simon-Skjodt, on behalf of the Simon Family

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Simon Family Tower Celebration of Children

August 29, 2012

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The Indianapolis Children’s Choir performs “Hope Happens Here”

Ten decades of Riley kids

Governor Mitch Daniels with Harli Culy, Hagerstown Riley Messenger l RileyKids.org l 16

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Visit RileyKids.org/blog

VOICES of RILEY The Making of the Simon Family Tower

Dynamic by Design

By Paul Haut, M.D.

As a naïve medical student in the late 1980s I had a lot of ideas about the roles I would play in health care in the future. I never could have dreamed, however, that one day I would have the honor of helping to design a new state-ofthe-art inpatient hospital.

Paul Haut, M.D. As Riley Hospital for Children at IU Health developed the plans Chief Medical Officer, Riley for what would become the Simon Hospital for Children at Family Tower, the hospital leaderIndiana University Health ship had the foresight to adopt the Lean methodologies pioneered by Toyota in automobile manufacturing and apply it to our design and construction process. This meant that the clinicians and care providers worked side-by-side with architects, designers and engineers to fully understand the needs of the hospital programs and design the best spaces while working to eliminate waste (e.g. space, motion and unnecessary duplication of services).

This dynamic and collaborative process has resulted in a beautiful and highly functional space which offers the highest level of care to children. The design included input from a wide variety of sources, including: physicians; nurses; pharmacists; social workers; patients; and families.

The views and interests of all the “customers” of the spaces were heard and incorporated into the designs, which were then tested in space by use of a “plastic hospital.” Temporary walls were used to mock up major room designs. Then the users tested the model by simulating care in the space. A version of an operating room was built and a mock surgery was set up to test whether the room was large enough and whether supplies and equipment were in the right locations.

Patients and families validated the designs at each step, ensuring that we were meeting their needs. Working side-by-side with them in this process has been a privilege — an experience I will always treasure.

Now, some of those families are experiencing the results of their work first-hand. Seeing how Riley patients like Braden Tamosaitis are thriving in the new environment underscores the importance of input from families like his. All of the Riley “team,” including the patients and families, can feel proud of our state-of-the-art hospital and roles everyone played in making the Simon Family Tower a reality.

Putting Our Families First

By Kevin Tamosaitis

This past summer, my son Braden woke up and decided he wanted to play the Wii while lying in bed. That may not seem unusual, except that he had just woken up after a major abdominal surgery and could barely move.

We gave him a controller and put a game in. He lay nearly motionless (other Kevin Tamosaitis, than his arm waving back Camby, Ind., with his son Braden and forth a bit) as he played his game. He wasn’t fussy or agitated as he normally is after waking up from surgery. He was distracted from what was going on, and more importantly he felt safe and comfortable, surrounded by family. Braden had everything he needed at that moment, and it was all because of the effort that went into creating the place where he was healing — the Simon Family Tower at Riley Hospital for Children.

During past hospital stays, it was rare that our whole family could be at Braden’s bedside post-surgery because of the size of the room and the fact that he was sharing it with another patient. But in the Simon Family Tower, the rooms are large, private and equipped with all kinds of features that are family-focused. Braden’s healing could take place in a comforting environment that allowed our entire family to be a part of his care.

Part of the reason that the Tower is so family-focused is that families like mine have been included in the design process. One of the things we were most vocal about was being able to have more room for family and comfortable amenities for parents so they can stay right in the room with their child as much as they want to.

The design staff gave us a voice — and they listened.

Thanks to this great attention to detail and the generous support of the many donors who made the new Simon Family Tower possible, our family has found that the result is much more than a new building. It is a new source of healing and comfort for our family in times when it matters the most.

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Champion Partnership

Riley Messenger Winter 2013 Dedicated to friends and partners of Riley Children’s Foundation Riley Children’s Foundation 30 S. Meridian St., Suite 200 Indianapolis, IN 46204-3509 RileyKids.org E-mail: riley@RileyKids.org Jim Morris Chairman, Board of Governors Kevin O’Keefe President and Chief Executive Officer Robin G. Bellinger Chief Development Officer Maureen Manier Chief Communications Officer Vicki Mech Hester Chief Strategy Officer David Schapker Chief Financial Officer

Editor Trisha Shepherd Associate Editor Jason Mueller Art Director David Birke Contributing Writers Nancy Alexander Jennifer Carmack-Brilliant Rachel Graham Photography Jodi Bella Ester Boston Zack Hetrick Swikar Patel Brian Powell Linda Tipton Tim Yates

Final Word

Each year we dedicate this issue of Riley Messenger Megan to our new class of Riley Champions. Reading their Whitaker stories of courage and determination inspires tremendous confidence in the care that has enabled them to establish and meet their life goals.

This year we are particularly proud to introduce you to the 2013 Riley Champions presented by Kroger, Inc. The Kroger Co. is a remarkable partner to Riley Hospital, having been a major sponsor of John Andretti’s Race for Riley for the last 16 years. Working with John, Kroger has helped to raise over $2 million for Riley. This past year, Kroger has increased its support to Riley through fundraising connected to sponsoring the Brickyard 400 Weekend.

In its first year, Kroger’s sponsorship of this program has been impressive. On November 3, opening night for the Indiana Pacers sponsored by Kroger, the Riley Champions were honored on center court and then they and their families watched the game as special guests of Kroger Central Division President Bob Moeder. This event kicked off an exciting weekend for the Riley Champions, who the next day joined the Indianapolis Colts as the honorary Riley coin toss kids at the game. Finally, on November 15, John Elliot, public affairs manager for Kroger’s Central Division, attended the Riley Annual Luncheon and, with Olympic Gold Medalist and Riley Kid Lauren Cheney, helped to acknowledge this special group of children.

November is just the start of what will be a busy and fun-filled year for the Riley Champions presented by Kroger as they are celebrated at their home schools and share their Riley stories at community and statewide events. I encourage you to learn more about our Riley Champions.

You may read about them in this issue of Riley Messenger and look for videos on our Facebook page at facebook.com/RileyKids. Starting in December, you can begin to follow their personal blogs that can be found on our web site at RileyKids.org.

In the coming months, you will have the chance to learn more about Riley Champion Megan Whitaker. Megan was nominated by Kroger associates to represent their Riley kids. Megan has had four open heart surgeries and more recently underwent neurosurgery. She has won the admiration of her grandmother Debi See, who has worked for Kroger for 23 years. Debi, Megan and their entire family praise Riley and Kroger in the same breath: Riley for providing life-saving care and Kroger for their endless support and encouragement.

Riley Children’s Foundation is incredibly fortunate to count Kroger, its associates and its leadership among our generous friends. Megan’s story is one of many that illustrate that everyone at Kroger truly gives from the heart.

With Gratitude,

Kevin O’Keefe President and CEO Riley Children’s Foundation Riley Messenger l RileyKids.org l 18

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NONPROFIT ORG. U.S. POSTAGE PAID INDIANAPOLIS, IN PERMIT NO. 5677

30 S. Meridian St. Suite 200 Indianapolis, IN 46204-3509

Why I Give

MY RILEY STORY “We didn’t think ­— we knew we were going to fix it because that’s what parents do. They fix problems,” Libby Symmes explains, as she recalls how she and her husband David received the news that their daughter Caroline had cancer.

Oncologists at Riley Hospital for Children at IU Health determined Caroline had Wilms tumor — one of the most curable forms of cancer, which affects the kidney.

But after responding well to initial surgery and chemotherapy, Caroline’s tumor grew back at an alarming rate.

“Her tumor was probably one of the most aggressive Wilms tumors I have ever seen, recalls Riley oncologist Terry Vik, M.D. “For me as a doctor to see that ­— it was frightening.” Caroline underwent aggressive treatment which included high-dose chemotherapy, a stem cell transplant and radiation. Still, the tumor returned. After a 16-month battle with cancer, Caroline died at the age of five.

Libby and David decided to channel

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Contact Trisha Shepherd to share your Riley Story, tshepherd@rileykids.org

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research funding is more critical than ever, and he is hopeful that with more financial support, scientists and doctors at Riley will be able to find new ways to attack aggressive cancers like Caroline’s.

“The only thing that’s holding back that kind of science is the funding to carry it out,” says Dr. Vik. their grief into philanthropy and they began raising money for cancer research programs at Riley. Through the Caroline Symmes Cancer Endowment, the Symmes now host two major annual events for Riley: the Caroline Classic Golf Outing, and the Pink Label Event.

They are also welcoming donations at www.CarolineSymmes.org. “We thank Riley so much; we love Riley. They did everything possible to save our child,” says Libby. “That’s why we’re so adamant about raising research money within this state and keeping it at the hospital where Caroline lived and died.”

Dr. Vik says the need for pediatric

Riley Children’s Foundation

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Robin Bellinger, Riley Children’s Foundation Chief Development Officer: By making a gift to Riley you can offer help and hope to kids who need it most. Please contact me at 317.634.4474 or rgbellinger@rileykids.org to explore the many ways to give.

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