Champions THE MAGAZINE OF ARKANSAS CHILDREN’S FOUNDATION
NOVEMBER/DECEMBER 2019
YOUR GIFTS HELP give Kendryck and his sister Abigail a healthier tomorrow
Your Gifts Matter! Dear Champion for Children, Because of your support, Arkansas Children’s provides patient- and familycentered care every day. Your generosity improves children’s lives through art programs, music therapy, holiday and end-of-treatment celebrations, and helping school-age patients keep up with their homework. In this issue of Champions, we’re celebrating the holiday spirit by focusing on the special programs that make Arkansas Children’s uniquely suited to care for children. These programs are only possible because of you. Alyssa Lewis has had a year-and-a-half filled with unknowns. When the unthinkable happened, Alyssa turned to Arkansas Children’s. On pages 4–5, you’ll learn how, with your help, Arkansas Children’s has been with Alyssa and her children Abigail and Kendryck every step of the way. On pages 6–7, you’ll meet Arkansas Children’s Hospital employee Jodie McGinley. As a Parent Partner, Jodie has turned her family’s heartbreak and tragedy into passion for helping improve patient- and family-centered care at ACH. Four-year-old Lyric Hammons was born with multiple health challenges, including problems swallowing and breathing. On pages 8–9, her mom Terra shares how the dedication of Lyric’s care team at ACH helped Lyric grow into a happy, active 4-year-old. This could only happen with the support of people like you. And finally, architect firm Polk Stanley Wilcox and construction company Nabholz found a unique and thoughtful way to enhance patient- and familycentered care at ACH. Turn to pages 10–11 to learn how their gift of a “compassion cart” will provide comfort to countless patients and their families during visits to ACH’s Emergency Department. Your gifts provide programs that help deliver on the promise of a healthier tomorrow for children in Arkansas and beyond. May you and your family have a happy and blessed holiday season. Thank you for championing children at Arkansas Children’s. Gratefully,
Fred Scarborough, CFRE President, Arkansas Children’s Foundation Chief Development Officer, Arkansas Children’s Chief Communications Officer, Arkansas Children’s
CHAMPIONS STAFF: Editor Becky McCauley Contributing Writer Ashley Leopoulos, Becky McCauley, Kyran Pittman Designer C. Waynette Traub Photographers Katie Childs, Beth Hall, Brandon Markin, Daniel Moody 2
| N OV E M B E R / D E C E M B E R 2019
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
Arkansas Children’s Foundation Board of Directors Chair Charles B. Whiteside III* Vice Chair Jason LaFrance* Treasurer Jake Nabholz* President Fred Scarborough, CFRE* Ritter Arnold Sharon Bale Ginger Blackmon Frances Buchanan Stuart Cobb Steve Davison Marcy Doderer, FACHE* Kirk Dupps Harry C. Erwin III* Kim Fowler Sharilyn Gasaway* Robin George* Mike Gibson Sonja Yates Hubbard Brandi Joplin Jim McClelland Mandy Macke Barbara Moore Beverly Morrow Cindy Murphy Marshall Ney Lynn Parker Terry Quinn Sue Redfield Kate Schaffer Jennifer Schueck Michael Shelby Belinda Shults* Isaac Smith Claudia Strange Celia Swanson Emeritus Directors Robert G. Cress Don Edmondson Henry Rogers, MD
*Executive Committee Current as of December 1, 2019
The Difference You Make
During the holiday season and all year long, your support helps provide patient- and family-centered care at Arkansas Children’s through the Child Life, Good Mourning, Social Work and Pastoral Care departments. Programs that make Arkansas Children’s uniquely tailored for children’s needs in all stages of growth and development are only possible because of you: Artists-in-Residence and Music Therapy; toys and games available in play and teen rooms; compassionate care for families who have lost a child; and young patients comforted by the gift of a special book and stuffed animal. Your thoughtfulness helps deliver on the Arkansas Children’s promise of a healthier tomorrow for kids in Arkansas. Thank you for championing children at Arkansas Children’s.
Because of you, children at Arkansas Children’s Hospital receive patient-centered, kid-savvy care:
62,000
patients benefited from a Child Life Specialist during their visit*
3,287
inpatients received a children’s book and stuffed animal through Pastoral Care’s Faithful Friends program
1,200
1,100
students kept up with schoolwork through ACH’s inpatient school program*
patients participated in music therapy sessions*
12
1,350
patients benefited from the Artists-in-Residence program*
59
families received compassionate bereavement care through Good Mourning in 2019
red wagons donated for patient use in 2019
*Approximated based on weekly averages since November 2018.
Your generous support makes children better today and healthier tomorrow. Thank you for your generosity! GIVING.ARCHILDRENS.ORG • CHAMPIONS • N OV E M B E R / D E C E M B E R 2019
|3
A Healthier Tomorrow Your support helps Northwest Arkansas siblings fight devastating illnesses at Arkansas Children’s Hospital and Arkansas Children’s Northwest.
BY BECKY MCCAULEY
“The hardest part is the unknown.”
N
orthwest Arkansas mom Alyssa Lewis has endured a lot of unknowns over the past year-and-a-half. For her, it’s been a time of chaos, excruciating worry and mindnumbing fear. In May 2018, Alyssa’s world was turned upside down when her then 8-year-old daughter Abigail received a devastating diagnosis. Then, in January 2019, the unthinkable happened…Alyssa’s 2-year-old son Kendryck also received a devastating diagnosis. Abigail had been suffering from back pain for nearly six months. Several visits to her pediatrician and local emergency room hadn’t given Alyssa any answers. Alyssa, who worked in a lab at the time, decided to take matters into her own hands. She ran Abigail’s bloodwork—the results were troubling. After reviewing Abigail’s bloodwork, her pediatrician ordered an MRI, which showed a mass. She referred Abigail to Arkansas Children’s Hospital (ACH), where a surgical biopsy 4
| N OV E M B E R / D E C E M B E R 2019
of the area around her spine was performed—it was cancer. “The day we learned about Abigail’s diagnosis was a big day…a BIG day,” says Alyssa. “It’s a jumble in my memory of: ‘This is what she has and this is what we’re going to do next.’ We learned what a road map [comprehensive care plan] is and how it works. And these are the chemo drugs she’s going to be taking and these are some of the side effects. And you’re definitely going to get to know your child and you’re going to be able to tell when she’s sick. And she’s going to be able to articulate to you what tastes good and what doesn’t. And so on and so on and so on.” “In other words—‘You’re now a cancer parent.’” Then, suddenly, Kendryck began to have unusual bruising. He was more tired than usual, and visited the emergency room several times with respiratory problems. Alyssa, unable to face the unimaginable, convinced herself the bruises, fatigue and infections
were normal for an active little boy enrolled in daycare. But then Kendryck was admitted to Arkansas Children’s Northwest (ACNW) in Springdale for a severe respiratory infection. In January 2019, he was flown to ACH in Little Rock aboard an Arkansas Children’s Angel One Transport helicopter and admitted into the pediatric intensive care unit for treatment and more testing. Unbelievably…it was leukemia. Alyssa says, “When I heard Kendryck’s diagnosis, I felt horror...utter horror. You never want to be told one...much less both...of your kids have cancer.” The future is uncertain for both Abigail and Kendryck. Abigail has a type of cancer— Ewing sarcoma—that has a high likelihood of relapse. And Kendryck is still undergoing treatment for leukemia. Both Abigail and Kendryck are receiving treatment at ACH and ACNW. Your support gives Alyssa peace of mind that both hospitals will continue to be here for her kids anytime they need help.
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
ABIGAIL & KENDRYCK AGES 9 & 3 BENTONVILLE
Because of you, Abigail and Kendryck have hope for a healthier tomorrow. To provide expert pediatric care to children like Abigail and Kendryck, call (800) 880-7491 or visit giving.archildrens.org to make your gift today. GIVING.ARCHILDRENS.ORG • CHAMPIONS • N OV E M B E R / D E C E M B E R 2019
|5
LITTLE ROCK
From Heartbreak to
Healing
J
odie McGinley has known her share of heartbreak. After several miscarriages, she and her husband Jesse were eagerly awaiting the birth of their first children— fraternal twins they were to name Eli and Walker. Sixteen weeks into her pregnancy, Jodie and Jesse were given the devastating news—the twins had a 50 percent chance of survival. One of the babies was not growing properly—he was a full week in growth behind his brother. Devastatingly, the doctor told the couple if they lost one baby, they were likely to lose the other. At 20 weeks, Jodie, still hopeful, was sent to a high-risk specialist. “Our world completely stopped that day,” says Jodie. The ultrasound had shown baby 6
| N OV E M B E R / D E C E M B E R 2019
Central Arkansas mom turns tragedy into passion for improving patient- and family-centered care at Arkansas Children’s BY BECKY MCCAULEY
Eli had a major birth defect—spina bifida. Spina bifida occurs when the spine and spinal cord don’t develop properly. Jodie and Jesse were sent to Arkansas Children’s Hospital (ACH) to meet with the spina bifida team. “The first thing the spina bifida team said to us was, ‘Congratulations! We can’t wait to meet your son,’” Jodie remembers. “As a new parent, especially a new parent expecting a special-needs child, that’s one of the most comforting things I’ve ever
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
heard. We immediately felt like part of the family.” At one day shy of 36 weeks, the twins arrived. Eli was born first and weighed in at 6 pounds 3 ounces. Walker followed at 5 pounds 9 ounces. Walker was taken to the delivery hospital’s neonatal intensive care unit for observation. Then, a few minutes later, the Arkansas Children’s Angel One Transport team arrived to transfer Eli to the neonatal intensive care unit at Arkansas Children’s Hospital. “There were several members of the Angel One team in their jumpsuits and I now refer to them as ‘superheroes,’” says Jodie. “Because that’s exactly what they looked like.” “The recovery room nurse wheeled Eli up to my bedside and said, ‘Jodie, this is Eli. Would you like to touch
him?’ She placed my hand into the isolette and I just rubbed his little arm with my index finger. Then they took him away.” The next morning, Walker—the healthy twin—began to suffer lung complications and quickly became critical. The baby needed complete rest so the McGinleys weren’t allowed to touch or talk to their son. “Suddenly, we went from having a completely healthy little boy and a critically ill little boy with a birth defect to two critically ill little boys.” Via teleconference, Jodie and Jesse met with Eli’s care team at ACH—a chaplain, social worker and the ACH neurosurgeon who was going to close the hole in his back. The surgeon told the McGinleys their son was worse off than they originally thought. “At the time, it didn’t register what that meant,” says Jodie. The next morning, the McGinleys arrived early at ACH to sign paperwork. It was then the nurse practitioner, Sabra Curry, realized they hadn’t grasped the seriousness of Eli’s condition. She took the time to explain: During the last two weeks of the pregnancy, Eli’s brainstem herniated due to spinal fluid pressure. The fluid collected in his head and eroded the center of his brain. “I was stunned. Jesse was stunned. We had never talked about the possibility of losing one of our children. We just knew that he was going to have some difficulties in his life.” That afternoon, the McGinleys invited friends and family to come to the hospital to say goodbye to their son. Then something happened for which Jodie says they will be forever grateful. Thanks to
a determined doctor, Baby Eli was transferred back to the birth hospital to be with his brother. Jodie says, “Eli had been very gray in color, but when the nurse laid his arm over Walker’s shoulder, a little spark came across his face and he began to turn pink. The nurse grabbed my camera and began taking pictures. Those are the only pictures we have of our boys together. They are the only pictures that we’ll ever have of our boys together.”
“We were able to spend that whole afternoon as a family of four. It was as beautiful an afternoon as it possibly could have been.”
“We held Eli,” says Jodie. “We were able to spend that whole afternoon as a family of four. It was as beautiful an afternoon as it possibly could have been.” Eli passed away at 1:30 a.m. in his family’s arms. Jodie soon learned the special care her family received has a name—patient- and familycentered care. “Patient- and family-centered care looks like many different things,” says Jodie. “It looks like compassion from a nurse practitioner who made sure we fully understood our child’s condition. It looks like the neonatologist who decided he was going to do whatever he had to do to have two little boys reunited, just to give the parents a little bit more time to find their peace with the situation.”
Inspired by her family’s experience, she joined the Arkansas Children’s team as a Parent Partner two years ago. In this role, Jodie advises senior leadership, department leaders and directors to bring a parental perspective for decision-making, ideas and program planning. She also works with family advisors—volunteer patients and families who also have experiences and stories—to bring their perspectives to committees and boards at Arkansas Children’s. “I love this aspect of my job,” says Jodie. “Knowing families’ ‘whys’ is essential to the changes we’re making in patient- and family-centered care at Arkansas Children’s.” Jodie shares her story at newemployee orientations twice a month. “It’s an honor to talk about my son and use our story to educate new Arkansas Children’s team members,” says Jodie. “And to show it’s okay to sit with your patients and families and share their desires, hear their wants and give them options. It’s so important.” Walker is now a healthy, typical 10-year-old. He has been joined by a sister, Ellie, who is 8, and the baby of the family, Charlee Kate, who is 4. “Raising Walker is like raising an 82-year-old man,” says Jodie with a smile. “This child loves coffee. He loves history. And he loves Werther’s Originals above any other candy.” Although Walker was a newborn when Eli passed away, he will never forget his twin brother. He recently collected money for his birthday and gifted it to the spina bifida clinic at Arkansas Children’s. “I wanted to help kids with spina bifida because my brother had the same thing,” says Walker.
GIVING.ARCHILDRENS.ORG • CHAMPIONS • N OV E M B E R / D E C E M B E R 2019
|7
Because of you, Central Arkansas girl received expert pediatric care at Arkansas Children’s Hospital BY KYRAN PITTMAN
A
special case calls for a special place. For 4-year-old Lyric Hammons of Benton and her family, that special place is Arkansas Children’s Hospital (ACH). From birth, Lyric has kept her parents and doctors on their toes with a complex set of medical conditions. When Terra and Lamond Hammons’ newborn began having choking spells that caused her to turn blue, her parents were told by their local doctor the episodes were caused by amniotic fluid and would eventually pass. But Lyric continued to struggle with breathing. Terra began taking notes and kept a video log of the baby’s symptoms. After Terra insisted to their doctor that something wasn’t right, the family was referred to the Ear, Nose and Throat (ENT) department at ACH. “At Lyric’s first appointment, we were informed she had a variety of conditions affecting her breathing—dysphagia, laryngomalacia, stridor and reflux,”
says Terra. Since then, Lyric has seen eight departments at ACH and is currently followed by five different specialties— ENT, pulmonary, urology, gastroenterology and orthopedics. Kids typically grow out of dysphagia, or difficulty swallowing, and laryngomalacia, which is a softening of the tissues of the larynx that causes noisy breathing, in toddlerhood. But Lyric is still having symptoms. “She’s just a special case,” says her mom. At ACH, Terra feels heard. “The doctors do a good job of communicating. They take the time to listen and show they really care.” “It’s been a journey for us and I don’t know exactly where it’s going to end, but we’re grateful for everything they have done for us,” says Terra. “I can never pay back what Arkansas Children’s has done for our family.” Terra says the Arkansas Children’s team has been
a resource in other ways as well, helping the family obtain financial assistance for Lyric’s medical expenses and equipping Terra and Lamond to teach Lyric sign language when her speech development was delayed. Lyric’s condition continues to present special challenges, but thanks to the dedication of her team at ACH and the persistent advocacy of her mom, Terra says she has grown into a happy, active young girl, best described as “sassy.” “She loves to dance and sing,” says Terra with a chuckle. “She lives for a good tutu.” As an Arkansas Children’s Ambassador family, Terra says she hopes to encourage other parents to persevere in the face of uncertainty. “Don’t give up. Keep fighting. You have to be the voice for your child. Sometimes you’re not going to know what to do, but take it day by day.”
You give patients like Lyric a healthier tomorrow. Thank you for your generous support. 8
| N OV E M B E R / D E C E M B E R 2019
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
“At Arkansas Children’s, they care. They take the time and are thorough. They do what needs to be done to get your child the care they need. I trust them, hands down.”
LYRIC HAMMONS AGE 4 BENTON
GIVING.ARCHILDRENS.ORG • CHAMPIONS • N OV E M B E R / D E C E M B E R 2019
|9
WHY WE GIVE
All
Heart
Architect and construction firms’ unique gift helps provide family-centered care at Arkansas Children’s BY ASHLEY LEOPOULOS
T
he architect firm of Polk Stanley Wilcox, with offices in Little Rock and Fayetteville, along with construction company Nabholz, has found a unique and special way to support family-centered care at Arkansas Children’s. After touring Arkansas Children’s Hospital (ACH), the team began brainstorming ways they could provide a joyful experience for patients and families visiting ACH’s Emergency Department. David Porter, principle and CEO of Polk Stanley Wilcox, and his team consulted the Family Advisory Board and the Facilities and Support Services teams at ACH to better understand the needs of patient families while their child receives care. “Literally the moment we heard the vision for a compassion cart we knew we wanted to be a part of creating it,” says David. The idea of the “Heart Cart” began to take shape. This cart would provide snacks, coffee,
water, coloring books and small toys for patients and families during Emergency Department visits. Compassion carts like the Heart Cart are in use at pediatric hospitals around the country, but this cart is the first of its kind at ACH. Taking into consideration the needs of patient families, Polk Stanley Wilcox architects Nikki Crane and Wendell Kinzler designed the Heart Cart. The mill shop at Nabholz Construction cut, assembled and painted the unique, colorful cart. “The Heart Cart was designed to take care of our families beyond traditional clinical care and ultimately deliver joy,” says Amy Cress, vice president of facilities and support services at Arkansas Children’s Hospital. “We hope the generosity of Polk Stanley Wilcox and Nabholz Construction will inspire
“The Heart Cart was designed to take care of our families beyond traditional clinical care and ultimately deliver joy.“ 10
| N OV E M B E R / D E C E M B E R 2019
• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
Members of the Polk Stanley Wilcox team celebrate the unveiling of the Heart Cart at ACH with Arkansas Children’s Ambassadors, 10-year-old Alex Cherepski (front left) and 16-year-old Alex Hinerman (front middle). more carts for ACH and for our sister hospital, Arkansas Children’s Northwest.” On Tuesday, November 7, the Heart Cart was unveiled and the first items from the cart were delivered to patients and families by the Polk Stanley Wilcox team.
“We always hope our projects create a sense of inspiration and delight for others. But honestly, while we absolutely love the design outcome of the cart, we were the ones inspired by the delight it brought to the kids and caregivers,” explains David.
Your support provides programs that help deliver patient- and family-centered care at Arkansas Children’s—thank you! GIVING.ARCHILDRENS.ORG • CHAMPIONS • N OV E M B E R / D E C E M B E R 2019
| 11
HELP US HEALTHIER
HAVE A
TOMORROW
JOIN US TODAY. Make your gift to champion children like Abigail and Kendryck. Your gift of $25, $50 or more will help Arkansas Children’s deliver on the promise of a healthier tomorrow for children in Arkansas and beyond. Visit giving.archildrens.org or call (800) 880-7491