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What’s Inside

Pg. 7-8, Cover Story: Sea of Smiles Pg. 3-4

Shine, Pray, Believe A small Indiana town’s powerful response to a triple threat Pg. 5-6

Unstoppable Owen

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How a little boy’s against-theodds victories deepen his family’s faith Pg. 9 — In the News

Riley’s New Milk Lab Making it easier for mothers to provide their babies optimal nutrition Pg. 11-12

Voices of Riley A Riley mom praises the team that mended her infant daughter’s heart Pg. 13

No Place Like Home Traveling specialists make the road to Riley shorter

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

Forward


“Erika is still with us because of Riley. How do you ever fully say ‘thank you’ for that?” -Christie Smart

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rika Smart had the world by the tail. In May 2012, the high school junior was a standout shot put thrower for North Newton High School in Morocco, Ind.; she had just landed a spot in the state regional competition. One afternoon, after a tough workout, Erika began complaining of pain in her shoulder and side. “She had been practicing hard so we just assumed she pulled a muscle,” said Erika’s mother, Christie Smart. That night, Erika woke up in excruciating pain and could barely breathe so her parents rushed her to IU Health Arnett Hospital in Lafayette. Emergency Room physician John Woods, M.D., agreed she had probably pulled a muscle but wanted to run some tests to be sure. That’s when he discovered multiple blood clots in Erika’s lungs. An echocardiogram revealed another clot in her heart. Erika was rushed by ambulance to Riley Hospital for Children at IU Health, where she was admitted into the pediatric intensive care unit. “Life can change on a dime,” says Christie. “One minute you have a healthy child and then — boom! A few hours later, she’s fighting for her life.” Riley pulmonologist Navia Krupp, M.D., worked closely with Erika. She diagnosed her with an extremely rare and dangerous condition called Lupus Anticoagulant Syndrome. The autoimmune disease causes antibodies to form which then attack plasma proteins in the blood,

leading to a high risk of clotting. The 17-year-old spent a total of nine days at Riley, where she received specialized care from the pulmonology team. “The whole situation was terrifying. I was in so much pain everyone was so kind to me. It really helped keep me calm being in such a comforting environment,” said Erika. Erika has now made a full recovery. She is once again throwing shot put and making plans for college this fall at Indiana State University, where she will study athletic training. Off the track, Erika throws her energy into giving back to Riley Hospital. She has collected books for the Riley library and donated supplies to Ronald McDonald House, including snacks and notes for Riley families. “Riley is amazing,” says Erika. “They took such great care of me and my parents while I was in the hospital. It really is a resource for the whole state and I want to do whatever I can to give back to those who gave so much to me. I will never forget how they saved my life.” Christie Smart is also inspired by gratitude and hopes to help other parents who find themselves in similar life-changing moments. “You never know if or when you will need Riley Hospital, but I am here to tell you, it is a blessing to have such a state-of-the-art facility in our state,” says Christie. “Erika is still with us because of Riley. How do you ever fully say ‘thank you’ for that?” Erika Smart overcame a serious lung condition and became the 2013 shot put champion for the Greater South Shore Conference of IHSAA.

“I will never forget how they saved my life.” - Erika Smart

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Shine, Pray, Believe An Indiana town’s powerful response to a triple threat

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uring Bremen High School’s March 2013 Riley Hospital Dance Marathon, participants wore white t-shirts printed in fluorescent colors that glowed under the black lights. The most important letters, however, were on the back: “Team SPB.” Most of Bremen, Indiana’s 4,500 residents already knew that SPB is shorthand for Shine-Pray-Believe. The initials represent remarkable community support for three local boys recently treated for cancer at Riley Hospital. The town’s commitment to SPB—“Shine for Seth, Pray for Dylan, and Believe in Brock”—gave special meaning to Bremen’s fourth annual Dance Marathon, which rocketed past its goal. And it was all the kids’ idea, says Melissa Manges, guidance counselor at Bremen High School. After severe leg pain sidelined Dylan Shumaker, 16, a sophomore and three-sport athlete, an MRI in June 2012 revealed three tumors on his back. He was airlifted to Riley from Memorial Hospital in South Bend and diagnosed with myxopapillary ependymoma, a form of spinal cord cancer. Dylan underwent surgery followed by 33 proton radiation treatments. The day after Dylan’s final treatment, on October 12, his classmate Brock Meister, 16, was taken by ambulance to Riley and diagnosed with a rare malignant brain tumor called a germinoma. Brock, who had been battling headaches and vision changes, completed a 12-week cycle of chemotherapy and four weeks of proton radiation therapy. Exactly one month after Brock arrived at Riley, Seth

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“All of these boys are very brave.” - Melissa Manges, Bremen H.S. Guidance Counselor

Young, 12, a fifth-grader at Bremen Elementary School, had a blood test with alarming results. Seth was admitted to the Riley emergency department that same evening and diagnosed with acute lymphoblastic leukemia the next day. His cancer is in remission, and he is undergoing a three-year treatment program. The news affected everyone, says Brock’s mother Jen Meister. “It has helped raise awareness of childhood cancer in our community and the need for funding for research,” says Jen. “It was sobering,” Manges says. “Unsettling. None of us really knew what to think.” But they knew what to do. This close-knit community rallied around fundraising efforts to support each family as well as the Dance Marathon, which in addition to dancing featured a dodgeball tournament, swimming, Wii games and guest speakers, including the two older boys. “I talked about being diagnosed and then what my stay


Charlie, Kate was like andand my treatment plan,” Gabriel of ‘When you talk Dylan Peterson says. “I said, Indianapolis today, about kids that need Riley, that and in December, person’s me.’” 2012 (below).

“I wasn’t nervous,” says Brock, who usually is shy. “I was actually having a good time just being with my friends. It was awesome, how all the community came out to support all of us.” All three students were honored for their strength and courage with surprise gifts that included jerseys autographed by their sports heroes. After the presentation, Seth wasn’t feeling well and left early, but his mother Brook Young stayed. “I was impressed by the student body,” she says. “They were so energized, and I was so proud of them for the work they put into it. I was humbled that they would do that, not just for Seth, but for Riley.” “We’re passionate about Riley,” agrees Dylan’s mother Kay Shumaker, whose family supported the Dance Marathon even before her son’s diag-

nosis. She credits the success of the 2013 event both to the students and to Manges: “She felt it was her job to help, but it went way deeper than that.” Each of the boys brought his own unique personality to the event, Manges says: “Dylan is focused, strong-willed—really an inspiration. He said from the beginning he was going to play sports again and go to college. Brock has a great sense of humor. He’s a hard worker, and like Dylan, he also was very concerned about keeping up in school. Neither of them ever complained. And Seth, he has the biggest grin and the most positive attitude. He has the longest road ahead, but he just takes it one day at a time.” All three families call their community “amazing,” and they’ve stuck by each other as well. “All of these boys are very brave,” Manges says. They’ve taught their parents, siblings, friends and teachers what it really means to live life each day.”

Dylan Shumaker, Seth Young and Brock Meister are united by their common hometown – Bremen, Ind. – and their Riley journeys

“It was awesome, how all the community came out to support all of us.” - Brock Meister

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Unstoppable

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OWEN

enifer Potter doesn’t look quite as nervous or overwhelmed as some of the other parents in the surgery waiting room at Riley Hospital for Children at IU Health. She has been through this drill no fewer than 25 times with the third of her five children, Owen. “The physicians and staff at Riley have become like family to us,” explains Jenifer. Owen was born six years ago with spina bifida, hydrocephalus and cleft lip and palate. Jenifer and her husband Eric found out about their son’s rare combination of conditions during a prenatal ultrasound. “When we received Owen’s diagnosis we were told he would never walk, never be normal, and have no quality of life,” Jenifer recalls. “But we believed there was plenty of room for God to work miracles.” Determined to prove that doctor wrong, the Fort Wayne couple decided Owen’s best option for care was Riley Hospital. “I can’t imagine where we would be otherwise,” Jenifer explains as she patiently waits for the next update from the operating room. “Here, they deal with only kids, and they all talk to each other and coordinate the care.” That coordination has been critical for Owen, who has received treatment from a broad spectrum of Riley specialists including: neurosurgeons; urologists; pulmonologists in the Riley Sleep Lab; craniofacial surgeons; x-ray technicians; and orthotists in the Riley Brace Shop. “The comprehensive care we receive is second to none,” says Jenifer. “Everybody from Child Life, to reception to Tom (Lund) the librarian, we love them all! They have each left an imprint on our hearts.” On this day, urology surgeons are revising the tiny intestinal openings they created in Owen’s abdomen, called stomas, which allow him to flush his bowels and empty his bladder. Midway through his surgery, a nurse

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asks Jenifer to consult with the lead surgeon, pediatric urologist Martin Kaefer, M.D. On a computer screen, Dr. Kaefer pulls up an image he has just taken with a cell phone. He points out one of Owen’s two stomas. “Remember, we functionally don’t want him to have difficulty catheterizing, so we have to make it big enough,” Dr. Kaefer explains. Jenifer shares her perspective. “I know, Dr. Kaefer, I do realize I’m asking for the impossible,” she tells him. “But Owen is the one who has to live with this every day.” Jenifer wants the opening to be smaller, to reduce bleeding she has been noticing regularly when Owen plays. The doctor listens carefully to her concerns, and asks more questions. “Your child’s well-being is my ultimate wish,” Dr. Kaefer tells her. Before Jenifer leaves the room they agree upon the best plan. She says knowing that her voice — and Owen’s — are truly heard at Riley helps them feel at home. “It is evident that they genuinely care about Owen and see him as the kid he is, not a diagnosis.” And that sweet, funny and smart kid is exactly who Jenifer wants other people to see when they look at her son — a little boy who is “more normal than he is not.” Jenifer has made a home video celebrating Owen’s milestones: riding a bike, running to the school bus and even playing soccer. “Owen’s life is a lens through which people can see God’s hand at work more clearly,” she explains. “I thank God every day for the miracle that is my son, and for Riley Hospital. We are forever in their debt.” At age 5, Owen Potter from Fort Wayne rides a bike, plays soccer and runs to the school bus


Jenifer and Owen Potter, Fort Wayne

“They genuinely care about Owen, and see him as the kid he is, not a diagnosis.� -Jenifer Potter

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Sea Riley Cancer Research Kamnesh Pradhan, M.D., is leading one of several Riley studies on pediatric tumors. Dr. Pradhan’s study is examining the cells that promote the growth of new blood vessels that fuel tumors. Another Riley research team, led by Karen Pollok, Ph.D., is using human tissue implanted in animals to study drug therapies for brain tumors. “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. To make a donation to support pediatric research at Riley, visit RileyKids.org

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of

Smiles

11-year-old Layla Cunningham from

Indianapolis looks incredible in her orange gown and tiara as she steps onto the dance floor at the Riley Cancer Center Prom. This is a girl who loves to sing and dance. It’s her night. And she has earned it. When Layla was 4 years old she was diagnosed with a brain tumor. She underwent surgery at Riley Hospital for Children, where pediatric neurosurgeon Jodi Smith, M.D., was able to remove 85 percent of the tumor. Radiation and chemotherapy got rid of the rest. Layla’s mother, Shenika Poindexter, remembers finally feeling relief when they reached the point where Layla only needed one scan per year to make sure the cancer hadn’t returned. “It was like, ‘Okay, we’re visiting just once a year — we’re good,’” Shenika recalls. “We can relax. I can take a deep breath. She can be a normal child and move on with everything.” But last summer, almost exactly six years after Layla received her cancer diagnosis, the family was dealt a second blow: Layla had kidney cancer. As the 4th grader puts it, “I have been going through a lot.” Riley oncologists explained that Layla’s best treatment option was to remove her cancerous right kidney. Layla seems to understand why she needs to keep fighting and doing what her Riley doctors recommend, even when it’s hard. “I just ask my parents

to help me with my cancer and do the right thing,” she says. Through both cancer battles, the family has remained confident that the Riley Cancer Center, which treats 85 percent of Indiana’s pediatric cancer patients, has been the best place for Layla’s care. Layla formed special bonds with Riley pediatric oncologist, Kamnesh Pradhan, M.D. “He’s a good doctor,” Layla says. “He makes me laugh every day!” Shenika’s voice takes on a reverent tone as she agrees with her daughter. “I love him. He’s excellent.” The admiration goes both ways. “Layla is always smiling,” says Dr. Pradhan. “That’s the beauty of this family. I’m sure they have their own struggles and tears, but I have not seen them.” He also has not seen another case quite like Layla’s — for a patient so young to battle two different types of tumors is “exceptionally rare.” Testing could not pinpoint any genetic predis-

position toward tumors, although that remains a possibility. There is one thing about which Dr. Pradhan is certain: Riley is uniquely equipped to care for a child like Layla, who needed help from many pediatric specialties: oncology; radiology; radiation-oncology; psychiatry; neurosurgery; general surgery; medical genetics; and endocrinology (to treat hypothyroidism related to her cancer treatment). “This is definitely specialty care,” explains Dr. Pradhan. “You really need a complex team that’s capable of talking with each other. There’s clearly no other place in Indiana with that kind of comprehensive pediatric care available.” But, on this night, it’s more than Riley’s medical expertise that fills Shenika with gratitude as Layla and her sisters twirl with mermaids across the “Under the Sea” ballroom. “It’s not really about medicine,” Shenika explains. “It’s about the staff and support. There’s a lot of support here — a lot of support and a lot of love.” Layla is now feeling well and returning to Riley for scans every three months. “She is one tough cookie,” says Shenika, smiling down at her gowned and glowing daughter who is busy adjusting her tiara. “I look at her and think — she motivates me.”

for Riley Women for Riley are responsible for organizing and funding the annual Cancer Center Prom. Women for Riley volunteers Chrissy Ryan and Carolyn Seeger smile with Layla Cunningham, Indianapolis, and her sisters, Asiyah Hendricks and Camari Cunningham Riley Messenger l RileyKids.org l 8


In the News Riley’s New Milk Lab A new arrival at Riley Hospital for Children marks a first in the state of Indiana. Riley has opened a milk lab on the fourth floor of the Simon Family Tower, where mothers’ breast milk can be safely stored, fortified as needed and delivered by milk lab technicians to patient rooms. The milk lab will service the entire hospital, including the Newborn Intensive Care Unit. Riley NICU Medical Director William Engle, M.D., says close to 80 percent of infants in the NICU are unable to breastfeed directly from their mothers due to medical complications, making milk pumping and storage a priority. The private rooms in Riley’s new NICU are equipped with breast pumps, and pumps are available throughout the hospital. Lactation consultants are also on staff to provide support for all nursing mothers. One of the goals behind the new milk lab is to improve infants’ health by increasing the number of NICU mothers who provide breast milk, which is currently around 70 percent. “Mothers’ own milk is great medicine,” says Dr. Engle.

Riley enteral nutrition specialist Brenda Smith fortifies milk and prepares it for delivery to the NICU

OF NOTE g

Riley Hospital for Children at IU Health ranked in 10 out of 10 pediatric specialties for the third consecutive year by U.S. News & World Report. Riley remains the only children’s hospital in Indiana to be nationally ranked by the study.

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In 2013, 223 campers attended Camp Riley for youth with physical disabilities, representing 57 Indiana counties and seven states.

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The 20th annual Miracle Ride brought the total to more than $4 million in lifetime donations to Riley Hospital. More than 3,500 motorcyclists participated in the signature “Big Ride.”

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Do you know an inspiring child between the ages of 8-18 who has received care at Riley Hospital? Nominate a 2014 Riley Champion Presented by Kroger by August 9 at RileyKids.org/champions.

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Oncology patients and parents at Riley Hospital are participating in the second phase of a study testing the benefits of a music therapy intervention. Board-certified music therapists are helping children create music videos about their cancer journeys. The outcomes from the first phase of the SMART (Stories and Music for Adolescent/ Young Adult Resilience During Transplant) will be published soon.

Riley kid Matt Goodsman set a goal of building 30 Riley wagons to complete his Eagle Scout project. Matt and Boy Scout Troop 104 from Acton, Ind., more than doubled the initial goal, assembling 65 wagons in five days.

Craig Huse

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Reverend Edward (Monk) Malloy

Craig Huse, co-proprietor of St. Elmo Steak House, and Reverend Edward (Monk) Malloy, C.S.C., President Emeritus of the University of Notre Dame, have been elected to serve on the Riley Children’s Foundation’s Board of Governors.


Riley Highlights Former Riley kid pursues diabetes research breakthrough Patrick Fueger, Ph.D., Patrick Fueger, spends his days in the lab Ph.D., is a Riley Kidconnected to Riley Hospital turned-researcher for Children searching for new ways to treat diabetes. The work is personal. Dr. Fueger is a former Riley kid who has had type 1 diabetes since childhood. “Rather than letting diabetes take control of me, I decided to fight against it by conducting scientific research aimed at curing diabetes,” says Dr. Fueger. Dr. Fueger and his team have recently published three papers about their work involving a so-called “molecular brake” called Mig6, which prevents insulin-secreting beta cells in the pancreas from growing. In an article in Molecular Endocrinology, Dr. Fueger’s team proposes that by blocking Mig6, it may be possible to save beta cells and delay or prevent the onset of diabetes.

New Children’s Clinical Research Center at Riley: An Indiana First Indiana University School of Medicine has opened a new pediatric research facility that provides a family-friendly environment while dramatically increasing resources for scientists working to improve medical care for the children of Indiana and beyond. The center, the only such facility in Indiana, is housed at Riley Hospital for Children. At any given time IU physician researchers at Riley Hospital are conducting about 80 clinical trials involving 6,500 children. The Children’s Clinical Research Center will provide a home base for most of those trials.

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Introducing the Riley 2013 CMN Champion: Braden Tamosaitis

Braden Tamosaitis of Camby, Ind., is Riley’s 2013 Children’s Miracle Network Hospitals Champion. Braden was born with spina bifida, hydrocephalus and Arnold Chiari II malformation. He has undergone 16 surgeries at Riley Hospital, making Riley feel like a second home. Braden constantly finds ways to give back to the hospital he loves, from sharing his story at Riley Dance Marathons to collecting 700 beach balls for fellow patients.

How can I help Riley?

Host a fundraising event for Riley (Visit RileyKids.org/events for guidelines) Join Riley Society by making a $1,000 annual gift “Like” Riley Children’s Foundation on Facebook and follow us on Twitter

facebook.com/RileyKids

Twitter.com/RileyKids

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Visit RileyKids.org/blog

VOICES of RILEY Big Hearts and Answered Prayers by: Courtney Beyers Our daughter Lucy is 18 months old. She dances, runs, plays and giggles like a typical little girl. But without Riley Hospital for Children at IU Health, this would not be the case. Lucy was born December 15, 2011, with heterotaxy syndrome. She has a complex congenital heart Courtney Beyers defect, malrotation, a single rightMother of Riley patient sided spleen, and her stomach is on Lucy Beyers the wrong side. Before Lucy was born, my husband Bill and I didn’t know what we were facing as parents. We were so frightened to think that we could lose her. The morning of Lucy’s open-heart surgery was the most terrifying day I have ever experienced. I remember seeing her beautiful, big blue eyes look up at me as I handed her over to the operating nurse. I prayed, “Please, God, let her come back to me the same, happy baby girl.” The “big hearts” at Riley Hospital made that wish come true. Within three months, Lucy had three surgeries, and we had many Riley saviors every step of the way. Heart surgeon Mark Turrentine, M.D., helped take away our worries and became the face we couldn’t wait to see after Lucy’s openheart surgery when she was 3-and-a-half months old. There is no doubt that he saved Lucy’s life. He is a surgeon who truly cares. The amount of time he spent with Lucy helped assure us that Lucy was in the right place. Another big heart we encountered along the way was Lucy’s cardiologist Anne Farrell, M.D. She became part of our family and a ray of sunshine to us during our nightmare. Dr. Farrell wasn’t even working on the day of Lucy’s surgery. Still, she scrubbed in because she wanted to be there. The smile on Dr. Farrell’s face when she came out to the surgery waiting room to tell us that Lucy did great is still embedded in our minds. Dr. Farrell will always be special to our entire family. There are so many others who helped heal Lucy’s broken heart, and just saying “thank you” does not seem enough. Nurse practitioner Aimee Jennings made sure we were all taken care of and was so affectionate with Lucy all the time. While Lucy recovered in the pediatric intensive care unit (PICU), nurse Jill Eicher made everything easier for our 11 l RileyKids.org l Riley Messenger

family, helping us believe everything was going to be just fine. Nurse Grace Godfrey in the Heart Center was also a real blessing in our lives, providing us with smiles and encouragement to keep us strong. Yes, Lucy was born with a broken heart, but Riley Hospital fixed it! We are forever thankful for and proud of our Riley kid. She is amazing, beautiful and healthy because of Riley. In her honor, we give back our time to the Ronald McDonald house, serve on the Riley Pediatric Family Advisory Board and donate in Lucy’s name. We also collected over 500 headbands to donate to the Heart Center. We will continue to serve and give back to Riley. We will also help spread the word about the most unforgettable lesson we have learned about Riley Hospital: that it is staffed by people with great big hearts. Lucy Beyers, Carmel, with nurse practitioner Aimee Jennings.

Caring for the Hearts of Children and Families by: Anne Farrell, M.D. One of the many things I enjoy about caring for patients with heart disease is being able to follow these children from infancy to adulthood. The families we interact with give us the motivation to work toward one goal: to help their Anne Farrell, M.D. child grow and be like every Riley Hospital Pediatric other child. In our daily work Cardiologist at Riley Hospital for Children at IU Health, my team is constantly learning how to improve the care of children’s hearts and at the same time, care for the hearts of their families.


“I remember seeing her beautiful, big blue eyes look up at me as I handed her over to the operating nurse. I prayed, ‘Please, God, let her come back

Lucy Beyers Carmel

to me the same, happy girl.’” – Courtney Beyers Carmel, Ind.

Patients like Lucy challenge our evolving practice. Lucy underwent several surgeries as an infant to address her heterotaxy, including full cardiac open heart surgery at approximately three months of age. She has done very well since her surgery. Lucy no longer requires a tube to be fed. She is thriving and has remained very stable from a cardiac standpoint. Her prognosis is good. Everything we learn from children like Lucy can help patients in the future. Research and best practices are continually shared among pediatric cardiac centers across the country, helping improve care and outcomes. Riley is a national leader in best outcomes for children with heart disease, and we are fortunate to have a team of exceptionally skilled heart surgeons and pediatric cardiologists who repair heart defects in patients in Indiana and halfway around the world. Still, we are always striving to learn and improve. While parents place their trust in us to help guide decisions about their child’s physical challenges, what is often more important is caring for the family’s emotional

well-being. Lucy’s parents, like many I have worked with, have inspired me by showing how strong they can become for the sake of their children. These families make me want to do absolutely everything I can to help them reach their goals for their children. I want to make sure that a family sees a familiar, trusted face when they are most vulnerable and feeling the most helpless. I want these families to know I have their best interest represented, even when it means holding hands with them or praying when nothing else can be done. I realize that this emotional care is the part of my job that’s most important, and that is what I focus much of my time and energy on. I feel like I have led these families into this journey since they placed their trust in us for caring for their child. It is my obligation to help them through it all the way, just as I would for my own family.

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To follow the stories of more Riley staff and families, visit blog.rileykids.org.

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No Place Like Home K

ylie Freels loves cheerleading, watching all things Disney and playing with her Barbie dolls. But life for this Evansville 5-year-old is not as carefree as it may appear. Kylie was born with cystic fibrosis — a serious disorder which causes digestive and breathing problems and can present life-threatening complications. “Sometimes she has to go into the hospital for days, even weeks at a time to get what they call a “tune-up,” said Kylie’s mother, Kristie Floyd. “She recently had a feeding tube inserted because she just won’t gain weight due to the CF.” The pulmonary team at Riley Hospital for Children at IU Health has helped make Kylie’s difficult journey less challenging. Early on, receiving top-notch care meant frequent trips to the main Riley campus in Indianapolis. Now, Kylie receives most of her care at the Riley Clinic at Deaconess Gateway Hospital in Newburgh. Riley pulmonologists Jeffrey Macke, M.D., and John Stevens, M.D., alternate traveling downstate each month to lead the clinic in partnership with Evansville-based specialists. “For us to make one drive down there for three days certainly makes more sense than having 70 families make the drive to Indianapolis to receive care that, in general, is not available to them in their home community,” explains Dr. Macke. While Kylie still needs to travel to Riley Hospital in Indianapolis on occasion, the convenience of having the bulk of her care in Evansville helps the family both financially and emotionally. “As a parent, it’s stressful enough to have a child with such a horrible disease,” explains Kristie. “But Riley takes a lot of the stress off of my shoulders, making me feel like I’m not alone.” The family recently discovered Kylie’s older sister Katie, who often helps Kylie with her medications and treatments, has lung problems too. Kristie is grateful to know exactly where to turn to face this new challenge: to the compassionate caregivers at Riley who continue to give Kylie strength and hope. “It’s not an easy road, but her future looks so bright with Riley’s help.”

Did you know? In addition to caring for more than 230,000 children at the main Indianapolis campus each year, Riley Hospital for Children at IU Health also partners with hospitals in communities throughout the state including Evansville, Bloomington, South Bend, Fort Wayne and Lafayette to provide pediatric specialty care.

Kylie Freels Evansville

“Riley takes a lot of the stress off of my shoulders, making me feel like I’m not alone.”

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–Kristie Floyd Evansville


A Priceless Gift for Children: Smiles

Riley Messenger Summer 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 Email: 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 Photography Lucas Carter Dave Jaynes Brian Powell Linda Tipton John Tirotta Mark Watson Tim Yates

Final Word

Layla Cunningham graces our cover this issue in a beautiful orange — her favorite color — Riley Cancer Center Prom dress. Eleven-year-old Layla danced the night away, ate lots of candy and enjoyed every minute of the Prom. She certainly deserved a night like the one that Women for Riley created for her with this event. Layla was diagnosed with a brain tumor when she was four years old and underwent chemotherapy and radiation treatments. Just last year Layla was diagnosed with renal cancer and had her kidney surgically removed. As Layla observed, “I’ve been through a lot.” Children with cancer and their families experience “a lot,” as do the Cancer Center staff members with Camari and Layla Cunningham, Indianapolis whom they become so close during their frequent inpatient stays and outpatient visits. That is why the Prom has become an anticipated event for Cancer Center patients, families, nurses, physicians, social workers, child life specialists and other Center staff. For that night, they are together for one reason only — to enjoy every minute. None of this could happen if it weren’t for the generosity, determination and creativity of Women for Riley. Women for Riley is composed of approximately 100 women committed to supporting the mission of Riley Hospital for Children through their philanthropy and projects such as the Riley Cancer Center Prom. Each member donates a minimum of $1,000 a year to Riley Children’s Foundation. These contributions — along with dozens of sponsors’ donations — make the Riley Cancer Center Prom a magical event. Women for Riley funds also underwrite grants to the hospital to support diverse needs from dance and movement therapy to special feeding equipment for craniofacial patients. I’ve had the opportunity to attend each of the four Riley Cancer Center Proms. From the elaborately creative décor to the great spread of children’s favorite foods and desserts to the photo booths, the dance floor and the activity rooms, the Women for Riley ensure this event will be nothing short of spectacular. The Prom is one night, but the group works on the event year round, each year challenging themselves to take it to another level. Still, as dedicated as they are to making the event as special as possible for the children, no one knows better than the Women for Riley that when Layla and her fellow patients and their families took the floor that May night, the only thing we could see was their smiles. Gratefully,

Kevin O’Keefe President and CEO Riley Children’s Foundation

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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 As the CEO of one of Indiana’s most prominent companies, Michael Ray had very little spare time. Still, when the leader of Fort Wayne-based women’s handbag designer Vera Bradley, Inc., first toured Riley Hospital for Children Michael Ray in 2005, he found himself called to help. “The entire experience was amazing. But what struck me the most was the NICU, and the incredible personal care and attention given to the infants and their parents,” recalls Ray. “It was uplifting to witness, and it was influential in my decision to become involved.” Ray joined the Riley Children’s Foundation Board of Governors in 2005 and serves as a member of the communications/marketing advisory committee. He and his wife Amy are the parents of four children — Christopher 22; Molly 18; Teddy, 16; and John, 14 —

none of whom have needed treatment at Riley Hospital. It wasn’t a family Riley connection, but rather the Rays’ belief in Riley’s mission that led them to make a generous personal gift. They also decided their gift should be unrestricted in nature, allowing Riley to determine the best use. “The leadership of Riley understands what the priorities are and where funds are most needed,” says Ray. “I trust that they are making the best use of our contributions — they’ve demonstrated an ability to do so over a long period of time.” Ray recently announced plans to retire from Vera Bradley — a career change which may provide him with more free time to become even more deeply involved with the Riley mission. “After I retire, regardless of what I pursue next, I hope to have the flexibility to contribute not just financially, but with more of my time,” says Ray. He also has

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

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advice for others who have been fortunate enough not to have needed Riley’s services: “I would encourage them to visit Riley. There’s nothing more compelling than seeing firsthand the good things that the doctors, nurses and staff do every day for the patients and their families.”

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.


Riley Messenger Summer 2013