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What’s Inside

Happy

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Cover Story, Pgs. 3-6:

Standing by Sloane

Riley and loved ones rally around a little girl battling cancer Pgs. 7-8

Moses the Musician: Music and therapeutic play help a toddler’s development

Pgs. 9-10

Building Hope for Babies How Riley is saving lives and transforming care for infants like Logan

anniversary, Women for Riley! Riley Children’s Foundation is grateful for the many ways you make a difference: n

Nearly $900,000 granted-to-date

in support of Riley Hospital programs, including the Women for Riley Legacy Endowment in support of Child Life n n

Volunteering with Riley patients Riley Cancer Center Family Prom,

Promingdales and Day Spa, signature annual events since 2009

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Riley News and Highlights Donors help Riley launch a new Gene and Cell Therapy research team

* Watch our May 18 Prom video at RileyKids.org/Videos.

Pg. 13

Savanna’s Heart for Giving “We don’t ever let her heart condition hold her back”

We welcome your story suggestions.

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Visit RileyKids.org/WomenforRiley for more information.

Please email ideas to TShepherd@RileyKids.org.

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Sloane and Courtney Davisson Fishers, Ind.

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Sweet and

STRONG Sloane’s Riley Battle

Nov. 21, 2017 “Yesterday was the hardest day of our lives. One cannot be prepared to sit in a doctor’s office and be told their child has cancer. Our child? Our sweet, spunky 15-month-old has cancer? The pit in my stomach is real? Can you start over? I’m suffocating, we’re suffocating… Yesterday was a really, really hard and long day.” - Courtney Davisson,

“Sweet & Strong” blog

Just weeks before Courtney Davisson wrote those words, she and husband Austin had started noticing that their youngest daughter, Sloane, seemed to be developing a lazy eye. When Courtney returned from a trip with friends, she could tell something was wrong. “I could actually see through her left eye, I could see something in there,” the Fishers mom recalls. “Of course, I got on Google and already had her diagnosed with cancer in 15 minutes. It was terrifying.” The official diagnosis came shortly after: retinoblastoma, a type of cancer that begins in the retina, at the back of the eye, most commonly in children. “The tumor in her left eye was quite advanced,” recalls David Plager, M.D., Director of Pediatric Ophthalmology at Riley Hospital for Children at Indiana University Health. “I told them at the beginning, ‘We’re hopefully going to be able to save her eyes, but it’s not a sure thing.’”

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Nov. 29, 2017 “What I learned in those first few hours, first few days, is that my body would keep going. It took me a while to realize I was still breathing, my lungs just knew how to inhale and knew exactly when my mind needed a very slow exhale…I relearned this same lesson last night when Sloane’s chemotherapy started. I held that baby girl tight to my chest for four straight hours as she innocently slept away. The nurses kept telling me how great she was doing, and I’d let another tear fall and gently nod my head, ‘Thank you.’”

- Courtney Davisson, “Sweet & Strong” blog

Sloane started chemotherapy within a week of her diagnosis. She had her first round during a three-day stay at Riley, and five more rounds at home. Courtney and Austin didn’t know exactly how chemo would work with a toddler. How would they keep her busy? Would she have to sit still? Hardly. Sloane got to explore, play and even dance in the Riley oncology playroom. “Sloane is very active. She always enjoyed time in the playroom, particularly riding around in the toy cars,” says Riley Pediatric Oncologist Steven Rhodes, M.D. “She has such a beautiful smile and blue eyes that light up the room. It was a joy to watch her bond with the medical team.”

Dec. 30, 2017 “I do really hate cancer. I hate it for my daughter, and I hate it for everyone else who has to come in contact with it…But as much as I hate all of this, I really love what I’m witnessing. A community that has totally come together in faith and prayer and love for us, for Sloane, and for all of our family.”

As Sloane continued chemo treatments, her parents went back to work (Courtney cutting back to part-time) and family members rotated caregiving duties for Sloane. Friends supplied support, home-cooked meals and care for Sloane’s older sister, Audrey. Austin and Courtney had Sloane baptized and leaned into their faith. “What’s unique about eye cancer is that we can actually see the tumors inside the eye, so we’ll keep monitoring them,” says Dr. Plager. Sloane’s last chemo treatment was in early May. A follow-up exam weeks later showed good progress, but later exams revealed setbacks, and Sloane’s left eye cannot be saved. The Davisson family knows their journey is not over, however they remain hopeful. “There are a lot of open questions about the future. Can she see well enough? Will she need to go to a special school?” Courtney says. “Thankfully, even though she lost her hair, Sloane is just a typical almost-2-yearold. Everyone kept telling me that kids are resilient, and it’s so true.”

April 4, 2018 “This has been a very humbling experience, one I hope I never have to travel again, but one that has indeed changed my life, one that has been totally paved by prayer. I may be a little bit more jaded, a little bit more anxious, a little bit more obsessive, but I’m also a little bit more trusting, my faith is a lot stronger, my marriage is rock strong, and my family is closer than ever.”

- Courtney Davisson, “Sweet & Strong” blog

- Courtney Davisson, “Sweet & Strong” blog

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BA B IES W H O

BRUNCH RETINOBLASTOMA RESEARCH: IMPROVING OUTCOMES Riley patients like Sloane are benefitting from dramatic advances in cancer care thanks to pediatric research, which is one of the top fundraising priorities of Riley Children’s Foundation. Retinoblastoma can take hold while babies are still in the womb. As the eyes develop in early pregnancy, cells called retinoblasts divide into new cells and fill the retina. Eventually, they stop dividing and mature into retinal cells. Rarely, a genetic mutation causes the retinoblasts to continue to divide, growing out of control and forming retinoblastoma. Even as recently as the 1990s, there weren’t many options to treat retinoblastoma, says Dr. David Plager. “Up until the mid-1990s, we removed the eye or did radiation, which caused collateral damage in the eyes, skull and brain,” he says. “Chemotherapy was first used for retinoblastoma in the 1990s, and it has been very effective. Chemotherapy doesn’t always kill the tumor, but it shrinks it and then we can go in and finish it off with local application of cryotherapy or laser ablation.” The newest form of chemotherapy used to target retinoblastoma is intra-arterial chemo, which delivers cancer-killing drugs directly to the eye via a catheter threaded up through the femoral artery in the leg. This method reduces systemic side effects by decreasing exposure of healthy tissue to chemo. Research is also improving the push to recognize retinoblastoma earlier. “We did an interesting study a few years ago where we looked back at all of our patients with retinoblastoma to see who first suspected something was wrong. We found that 95 percent of the time it was a family member who noticed something was off, usually the mother,” Dr. Plager says.

You might recognize Sloane from the Indyfamous Instagram @babieswhobrunchindy. Featuring eight babies all born to a circle of friends within a few weeks of each other, the account documents life for the babiesturned-toddlers as they navigate adorable matching outfits and famous Indy landmarks. The families rallied around Sloane during her cancer battle, posing in matching “Sloane’s Tribe” T-shirts. “They’re like my best friends now. I just get so emotional when I think about it,” Courtney says. “They have taken exceptional care of us.”

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MOSES

the Musician: A lilting voice and strumming guitar drown out the noise of medical equipment in 3-year-old Moses Thompson’s room at Riley Hospital for Children at Indiana University Health. As he beats on a small drum with shakers and hits a colorful xylophone with mallets, he has no idea that this fun experience is also therapy. “Good job, Moses,” says Child Life Specialist Heather Troyer, who is teaming up with Music Therapy and Occupational Therapy colleagues to co-treat the little boy. His dad, Sean Thompson, M.D., is a Riley emergency medicine physician who works just two floors below Moses’ room. He says this kind of therapy has been “amazing” for Moses, who spends lots of time at Riley because of a rare lung condition. “Moses loves music,” explains Dr. Thompson. “He had been intubated for a while and was fairly weak, so the goal was getting back to his baseline function. Music therapy provides stimulation and distraction, which is great for him. Occupational therapy was helping him work on his upper arm strength by stacking and grabbing. Child Life also makes a big difference for us, whether it’s singing songs with him or walking into the operating room with him where we can’t go to keep him calm and comfortable. Overall, it has been a wonderful experience for us. They know Moses very well and love him.”

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80% of funding for Riley’s team of 24 Child Life Specialists is provided by Riley Children’s Foundation. Thank you for making a difference for children like Moses.

Moses Thompson Carmel, Ind.

They know Moses very well and love him.”

- Sean Thompson, M.D. Riley physician and dad

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V O I C E S

O F

R I L E Y

GOING THE DISTANCE

FOR LOGAN

SAMANTHA MATEER Riley mother Valparaiso, Ind. My first visit to Riley Hospital for Children at Indiana University Health for a meeting with doctors was overwhelming. Our son Logan had a diagnosis of CDH (congenital diaphragmatic hernia) before he was born. His diaphragm didn’t fully develop, causing his small intestine to slide up and down. Facing a 50 percent fatality rate for our son, my husband Jacob and I stayed strong and hoped for the best. We had two options when we received Logan’s diagnosis from our local Maternal-Fetal Medicine (MFM) physician, Amy Rouse-Ho, M.D. We could go to the Chicago-area children’s hospitals, which would have been a considerably shorter trip from our home in Valparaiso, Ind., or we could choose Riley Hospital for Children. Our doctor recommended Riley due to her experience there and knowledge of its staff. When it came to the care our son needed, we would travel any distance. It was a scary helicopter ride from Porter County, Ind., to IU Health Methodist Hospital in Indianapolis for delivery. Jennifer Weida, M.D., served as our Riley Maternal-Fetal Medicine Specialist. Logan was born via emergency C-section on April 30, 2018 and brought to Riley Hospital. Logan needed surgery to repair his hernia, and Riley Pediatric Surgeon Cartland Burns, M.D., did this thoracoscopically, through a tiny incision. The normal hospital stay for a CDH baby is one to three months, so my husband and I packed a bag expecting to stay at least 30 days. Due to the tremendous care and skill of the staff at Riley, Logan went home only 11 days after surgery. Without the knowledge of Dr. Rouse-Ho, Dr. Burns, and the great nurses at Riley—especially Mary Lynn Foster—we would not be doing as well as we are. From the bottom of our hearts, we say “thank you” to all the donors who support Riley Hospital for Children. Riley could not provide extraordinary care without your help.

AMY ROSS RN, MSN, CPN, Riley Fetal Care Coordinator All expectant parents dream about a healthy baby. No one outside my field of Maternal-Fetal Medicine ever expects anything else. Their reality changes when our team at the Fetal Center at Riley Children’s Health delivers an often paradigm-shifting narrative: their child has a life-threatening problem. When I speak to these families for the first time, their anxiety is palpable. We don’t just deliver devastating news, however. We deliver hope for these families too. Our team at Riley represents many subspecialties including: pediatric surgery, cardiothoracic surgery, neonatology, cardiology, urology, neurosurgery, neurology, pediatric radiology, craniofacial, Social Work and even Palliative Care when necessary—optimizing the best care for each baby’s unique diagnosis. Logan Mateer is a good example. His condition, a congenital diaphragmatic hernia, can be very difficult to diagnose prenatally through conventional ultrasound. The fact that Logan was prenatally diagnosed allowed the team to be prepared for his delivery with specialists on site. Without that help, Logan’s outcome may not have been as favorable. Donors have made the Fetal Center a reality at Riley. Because of your support, we can now present the radiologic findings and care plan directly to the patient—in a matter of one day. This means so much to our families traveling from all over the state of Indiana and beyond. Once we present the care plan, we get to work. The fact that we are always treating both a mother and her baby presents unique challenges. Whatever we do to one of our patients during pregnancy, we do to both. The state-of-the-art technologies at the Fetal Center lessen risk and optimize survival for BOTH of our patients: mom and baby. Families in Indiana should never have to leave our state to receive the best care possible. It is an honor to be able to deliver that right here at Riley.

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Construction has begun on a new labor and delivery unit inside Riley Hospital for Children at IU Health. Riley Children’s Foundation is seeking donors’ support for the staffing of 12 Maternal-Fetal Medicine specialists and the Fetal Center team to elevate care for Indiana’s mothers and babies.

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RILEY NEWS AND HIGHLIGHTS

Riley Investigator Builds New Gene and Cell Therapy Program Gifts from Riley Children’s Foundation donors are helping Riley Hospital recruit some of the best and brightest investigators from around the globe. One of the newest recruits to the Herman B Wells Center for Pediatric Research is Roland Herzog, Ph.D. Dr. Herzog is building a new Roland Herzog, Ph.D. Gene and Cell Therapy Program using genetic therapy and immunotherapy to transform lives of children born with hemophilia. “This is a lifelong disease,” explains Dr. Herzog. “Patients constantly need injections of clotting factor protein. The goal with gene therapy is to transfer the correct gene into the patient so the patient’s body will start making the proper clotting factor all the time.” Dr. Herzog says donors who support pediatric research at Riley are making a tremendous impact. “Donations ultimately mean that my team can help the futures of boys who are born

with hemophilia, giving these patients a one-time therapy that will correct their disease for many years. There is a need. This research makes a cure happen.”

Thanks to donor support, Riley research achievements include: n

Publishing 181 research studies in 2017, each one representing an advancement in pediatric medicine

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Developing new therapies, including cellular and gene therapy, for diseases including neurofibromatosis, childhood cancers and leukemias, hemophilia, heart and lung problems, infectious diseases and diabetes

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Recruiting world-class investigators for each of the eight teams at our research facility, the Herman B Wells Center for Pediatric Research

OF NOTE Dairy Queen’s annual g

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Riley Children’s Foundation and the Indiana University School of Medicine hosted a “Neighborhood Baby Shower” at the John H. Boner Community Center in Indianapolis on June 9. Funded as part of a $610,000 Kohl’s Cares grant aimed at improving Indiana’s infant mortality rate, the baby shower promoted positive parenting skills and safe sleep practices. Watch at Riley Kids.org/Videos. To learn more about the program visit KohlsCaringForOurKids.org.

Miracle Treat Day takes place on August 2. Stop by a participating Dairy Queen for a Blizzard and support Riley kids.

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The Riley Children’s Endowment Board of Governors appointed Laurie Burns McRobbie, the first lady of Indiana University and founder of the Women’s Philanthropic Leadership Council, to the Board in May 2018.

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Liz Linden, DNP, has been appointed Chief Nursing Officer (CNO) for Riley Children’s Health. Linden previously served as clinical director for the Medical/ Surgical Care Center, and recently as Riley’s first associate CNO. Devour Indy takes place from August 20 – September 2. All participating restaurants support Riley during this two-week event.

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Visit RileyKids.org/News

Riley Kids Honored at Speedway Miracle Golf Tournament Donnavan Crawford, Anderson, Ind., and Elizabeth Street, Brazil, Ind., were selected as Speedway’s 2018 Miracle Children for the state of Indiana. They served as ambassadors at the Miracle Golf Tournament in Dayton, Ohio, on June 11-12 and will be featured in Speedway marketing materials throughout the year. Local fundraising efforts by Speedway stores support the Speedway Burn Unit at Riley Hospital for Children, the Bear in the Chair program and Camp Riley. Speedway convenience stores have raised $100 million for Children’s Miracle Network Hospitals nationwide since 1991.

James Whitcomb Riley Museum Home Receives Historical Honor The James Whitcomb Riley Museum Home recently celebrated the dedication of its own Historical Marker, a large plaque that recognizes historically important sites, individuals and events across the state. Administered by the Indiana Historical Bureau, this new marker honors the Riley Museum Home as the residence of the great “Hoosier Poet,” and celebrates Mr. Riley’s remarkable legacy: Riley Hospital for Children.

Elizabeth Street and Donnavan Crawford

How can I help Riley?

BACK TO SCHOOL EDITION n

Support your school’s fundraising events

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Ask your school principal and superintendent to make a recurring monthly gift

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Ask parents’ employers if they have a matching gift program

More information about Kids Caring & Sharing and Dance Marathon can be found at: n RileyKids.org/KCS or RileyKids.org/DM

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A HEART FOR GIVING:

SAVANNA EVANS hen you ask 12-year-old Savanna Evans to describe her experience at Riley Hospital for Children at Indiana University Health, she is quick to respond, “Very fun!” It’s not what you expect to hear from a girl who underwent heart surgery. Maleaha and Brandon Evans from Bedford, Ind., were surprised to learn that their newborn baby had a heart condition: pulmonary stenosis. Severe scarring of the pulmonary valve was causing significant pressure to build up and overload Savanna’s heart. She needed expert care and was transferred to Riley Hospital. Since Savanna weighed only 5 pounds at birth, Riley Pediatric Cardiologist Mark Hoyer, M.D., delayed surgery until Savanna was 1 month old. The procedure involved inserting a balloon catheter through a vein in her leg to tear the scarring and allow the valve to open more freely. “The skill that Dr. Hoyer had and God’s hand in everything made our experience perfect,” Maleaha said. The Riley Heart Center is one of the nation’s top 15 high-volume heart programs for effective outcomes. Dr. Hoyer likens it to a puzzle. “We have the complete set of people, from respiratory therapists to surgeons, to take care of any issue. Our job is to find the best combination of those pieces to take care of that particular patient,” he says. For Savanna, the Heart Center team found a winning combination. “I don’t feel like I get tired at all,” she says. Her energy is impressive given all of her interests, from playing multiple sports and spending time outside with her cousins to participating in 4-H and caring for animals on her grandparents’ farm. Savanna also proudly raises money in support of heart research to help other kids. As Maleaha shared, “We don’t ever let her heart condition hold her back.” Support from Riley Children’s Foundation makes outcomes for heart patients like Savanna possible. “We like to be able to offer state-of-the-art technology and treatment options,” said Dr. Hoyer. “The donor

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Riley heart patient Savanna Evans, Bedford, Ind., models clothes she sewed through 4-H.

support we get is vital and so greatly appreciated.” Today, Savanna knows Riley as a place with “very kind” staff. She laughs easily and dreams of owning a farm someday. Thanks to Riley, her heart will be able to keep up with her, every step of the way.

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FINAL WORD

Your Generosity: Fuel for Miracles

Riley Messenger Summer 2018 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 Dave Ricks Chairman, Board of Governors Kevin O’Keefe President and Chief Executive Officer Jim Austin Chief Marketing and Corporate Partnerships Officer Vicki Mech Hester Chief Administrative Officer

Editor Trisha Shepherd Associate Editor Jason Mueller Art Director David Birke Contributing Writers Laura Buckner Maggie Loiselle Olivia Mozzi Kate Sarlitto Photography Wendi Chitwood Paul D’Andrea Alison Hoover Dave Jaynes Mae Rachelle Photography

Exceptional pediatric medicine requires an assembly of top-notch research investigators, the most experienced physicians and surgeons, and skilled, compassionate nurses, all devoted to the care and comfort of children. The extraordinary care that children receive at Riley is made possible by another dedicated group of invested Hoosiers—our friends and partners who give generously to help children who need Riley Hospital. When we step back and look at the impact you make on children, it is staggering. Your gifts are the reason that Riley Hospital for Children is recognized as one of the top 10 among our nation’s pediatric research hospitals. Riley also consistently ranks among the nation’s best children’s hospitals through U.S. News & World Report thanks to our exceptional donor-supported patient care programs. When Sloane Davisson’s family faced the “suffocating” feeling of their child’s sudden Logan and Samantha Mateer cancer diagnosis, your gifts carried them Valparaiso, Ind. through months of research-based treatment toward a healthier future. When the Mateer family learned their son Logan would be born with a complex condition, your gifts gave them the highest possible level of maternal-fetal medicine care—right here in Indiana. When Moses Thompson endured lengthy hospitalizations, your gifts to our Family Support Programs brought him joy-filled therapies that helped him reach the developmental milestones of a typical 3-year-old. For all of these small miracles there is one common denominator: our community’s generosity. Riley Hospital’s 100-year story of hope began because Indiana cherishes her children and families. Children facing a health crisis such as cancer, a heart defect or diabetes require urgent care. Only with the help of our generous friends can we give these children the hope they deserve. With gratitude,

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 The first time Georgette Smith visited Riley Hospital for Children, she was greeted by a chaplain. Her toddler son had taken a bad fall at home, and his skull was fractured. “We had baby gates, but he somehow propped up a couch cushion on its side,” she says. “It was very traumatic.” Riley Pediatric Neurosurgeon Jodi Smith, M.D., brought the family comfort with her expertise and calming demeanor. “She was amazing,” says Smith. “Talking to her really put me at ease, and helped me feel like everything was going to be okay. She’s very knowledgeable, very caring and did a great job taking care of my son.” Years later, when Georgette was invited to serve on the Riley Children’s Endowment Board of Governors in 2017, she did not hesitate to accept. “It’s important to me that every child be able to have these services when they need them,” Smith explains. “No mother or father wants to be in a situation where

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Georgette Smith

their child is not taken care of.” Smith went to Purdue University where she studied mechanical engineering. After graduation she spent time working for General Motors, then entered the home health care business. Today, she is owner and Vice President of Purpose Home Health,

To discuss giving to Riley, contact Mandy Pietrykowski at MPietrykowski@RileyKids.org or 317.759.6939.

which employs several hundred people in Indiana. Smith is particularly passionate about raising funds for Riley Maternity and Newborn Health, a program designed to improve Indiana’s high infant mortality rate. “I understand the African American community is especially affected here in Indiana and that’s important to me—trying to educate people in my community about the importance of prenatal care and safe sleep, and making sure they have everything they need to keep their children healthy as they grow.” Along with giving back through Board service, Smith supports Riley financially. “It touches my heart knowing Riley is here because of all the people before me who were able to contribute to Riley Hospital and Riley Children’s Foundation,” she says. “Because of that support, my child was saved.”

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Riley Messenger: Summer 2018  

Riley Messenger: Summer 2018  

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