Champions August/September by Arkansas Children's

Champions THE MAGAZINE OF ARKANSAS CHILDREN’S FOUNDATION

AUGUST/SEPTEMBER 2020

ABIGAIL‘S

SONG Because of you, music helps teen cope with devastating diagnosis

You Make a Difference Dear Champion for Children, Nothing stops for COVID-19...including childhood illnesses and injuries. In this issue of Champions, you’ll meet three children who, because of you, have received expert pediatric care through these extraordinary times. You’ll also meet a family whose generosity—like yours—makes a difference for patients and families every day at Arkansas Children’s. On pages 4–5, you can read about a teen patient who is an inspiration to her family, friends and members of her Arkansas Children’s care team. Sixteen-year-old Abigail Wells is taking on cancer with grace, humor…and music. Because of you, this special young lady has a future full of hopes, dreams, and plans to make the world a better place for kids like her. I know you’ll be inspired by her too. Then turn to pages 6–7 to meet another special teenager who is also fighting cancer at Arkansas Children’s. After more than three years, 13-year-old Max Blackwell is scheduled to finish his treatments close to his Fort Smith home this month, thanks to your generous support. On pages 8–9, you can read the harrowing story of 6-year-old James Lefler. When James and his family set out on their bicycles to enjoy a ride around Lake Fayetteville, they never imagined they would find themselves in need of emergency care. With your help, Arkansas Children's Northwest was there for James when he needed it most. And finally, generous donors like Aaron Marshall of Fayetteville and his family support Arkansas Children’s mission of making kids like Abigail, Max and James better today and healthier tomorrow. Because of Aaron’s experience with pediatric healthcare as a young child, the Marshall family has found a meaningful way to give back. Turn to pages 10–11 to read their heartwarming story. Now more than ever, I hope you see yourself in the wonderful work happening every day at Arkansas Children’s. Thank you for making a difference for kids like Abigail, Max and James!

Arkansas Children’s Foundation Board of Directors Chair Jason LaFrance* Vice Chair Jake Nabholz* Treasurer Charles B. Whiteside III* President Fred Scarborough, CFRE* Ritter Arnold Sharon Bale Nancy Benton Ginger Blackmon Frances Buchanan Stuart Cobb Steve Davison Marcy Doderer, FACHE* Harry C. Erwin III* Kim Fowler Sharilyn Gasaway* Robin George* Sonja Yates Hubbard Brandi Joplin Mandy Macke Jim McClelland Barbara Moore Beverly Morrow Cindy Murphy Marshall Ney Lynn Parker Terry Quinn Sue Redfield

Fred Scarborough, CFRE President, Arkansas Children’s Foundation Chief Communications Officer & Development Officer, Arkansas Children’s Executive Vice President, Arkansas Children’s

Kate Schaffer Jennifer Schueck Michael Shelby Belinda Shults* Isaac Smith Claudia Strange Celia Swanson Joe Tucker Emeritus Director

CHAMPIONS STAFF: Editor Becky McCauley Writers Ashley Leopoulos, Becky McCauley, Kyran Pittman Designer C. Waynette Traub Photographers Kelley Cooper, Daniel Moody 2

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Henry Rogers, MD *Executive Committee Current as of July 1, 2020

The Gift of Music Your generous support helps provide patientand family-centered care at Arkansas Children’s, especially through these challenging times. The Child Life and Education Department at Arkansas Children’s offers programs that help patients cope with emotions associated with illness and extended hospital stays. One of these special programs—music therapy—is only possible because of you. Arkansas Children’s board-certified music therapist Andrew Ghrayeb designs a treatment plan based on each child’s needs. During a session, the patient may be encouraged to play instruments such as ukulele, keyboard, xylophone and several types of drums. A session may include singing together, listening to and discussing song lyrics, or even writing and recording music. In addition, several guitars are available for patients to check out while in the hospital. Andrew uses a mobile studio that includes a laptop with recording software, microphones and headphones to record patient songs. And a special stethoscope allows him to record heartbeat songs at the bedside.

You help Arkansas Children's deliver on the promise of a healthier tomorrow for children through music therapy:

50,000

1,100

minimum cost to provide music therapy per year

instruments used in providing music therapy for patients

patients receive music therapy sessions per year

original patient songs written within the last 12 months

patient heartbeats recorded each year as remembrances for parents

music therapist currently on staff

To see Andrew work with patients at Arkansas Children’s, visit archildrens.org/musictherapy.

If you would like to support programs like music therapy, call (800) 880-7491 or visit giving.archildrens.org. GIVING.ARCHILDRENS.ORG • CHAMPIONS • AU G U S T/ S E P T E M B E R 2 0 2 0

Because of you, teenager Abigail Wells has found hope and healing through music at Arkansas Children’s BY KYRAN PITTMAN

Top: Abigail with a member of her Arkansas Children's care team. Bottom: Abigail with her parents Isaiah and Tammy Diamond-Wells, director of acute care services at ACH.

ABIGAIL WELLS AGE 16 LITTLE ROCK 4

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ixteen-year-old Abigail Wells is a ray of sunshine. Her huge, infectious smile and sunshiny personality immediately light up a room. But that beautiful smile is hiding a lot of pain. At 14 years old, the young track athlete had begun complaining of swelling and pain around her right ankle. Abigail's dad Isaiah took her to her primary care physician for an exam. Isaiah remembers making that difficult, urgent phone call to Abigail’s mom Tammy, an RN and director of acute care services at Arkansas Children’s Hospital (ACH). The x-rays had revealed something much more serious than a sports injury. The doctor told the family he thought there was a good chance Abigail had a fast-growing, highly malignant tumor. Abigail was admitted to the Emergency Department at ACH for an MRI that evening, and had a bone biopsy the next morning. The findings were alarming. On April 25, just a few weeks before her 15th birthday, Abigail was diagnosed with an aggressive

bone cancer that started in her leg and then spread to her lungs. She began chemo within a few weeks, and underwent a below-the-knee amputation of her right leg in July. In spite of these setbacks, Abigail has maintained her amazingly positive attitude. “Abigail is a rockstar,” says her mom. “She’s never asked, ‘why me?’ She says this is a part of her story, but not her whole story. And if she can help anyone else along or after her journey, that’s what she wants to do. Abigail’s taught me more than any other life experience how to deal with hard things.” Abigail has spent weeks and months recovering from surgery, undergoing chemo treatment and being away from family, friends and school. But with the help of the Child Life and Education Department, Abigail found something to occupy her time that she hopes will inspire others—music. While in the hospital, Abigail starting working with ACH’s board-certified music therapist Andrew Ghrayeb. “Abigail is one of those special patients who, the minute you meet her, you know it’s going to be a different experience,” says Andrew.

Programs like music therapy are only possible because of your generous support. Thank you for giving kids like Abigail the gift of music! • CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.

Andrew taught Abigail how to play a ukulele and other instruments. Then, after hearing some of her poetry, he said to her, “Why don’t we try writing a song?” Abigail wrote the lyrics and Andrew composed the music. The resulting song is called “Unexpected Chains,” and you can read the inspiring, heartbreaking lyrics at bottom right. “Music helped me write down my feelings; all the stuff going through my head,” says Abigail. “It helped with the process of going through all of this.” At the time of her diagnosis, Abigail had been extremely active. In addition to track, she was involved with numerous school clubs and took all pre-AP classes, which are college-level classes taken usually by college freshmen. And this remarkable young woman hasn’t let a cancer diagnosis slow her down. In between her treatment cycles last summer, Abigail fulfilled her dream of being an Arkansas Children’s junior volunteer. She has worked diligently at her schoolwork, going above and beyond to stay at an advancedplacement level. Abigail has discovered a love of research and is busy developing a non-profit business plan to assist hospitals with providing more individualized enrichment activities to other teens with cancer. And although Abigail’s heart was set on a mission trip to Guatemala this summer that was cancelled due to COVID-19, her sunshiny outlook hasn’t changed. “Abigail’s heart’s desire is to be able to say that she’s cancer-free,” says Tammy. “Not in remission… cancer-free.”

“Unexpected Chains” BY ABIGAIL WELLS

Now that I have these unexpected chains The person I was will never be the same That person is now limited to picture frames All ’cause of these unexpected chains Unexpected chains My curly hair is now in the trash All of a sudden life moves ten times fast That life I had is now out of grasp Unexpected chains turned a has into a had A has into a had Sometimes I don’t even feel like trying When you say, “how are you doing?” I end up lying Honestly Sometimes it’s hard to stop crying Because all of this pain from trying It hurts me Sometimes I feel guilty Even though I didn’t do this to me I wasn't ready for this reality A whole new normality And these unforeseen, unexpected chains Unexpected chains turned a has into a had Unexpected chains turned a has into a had

Abigail composed these lyrics and Arkansas Children's music therapist Andrew Ghrayeb set them to music. Thanks to you, programs like music therapy are possible for kids like Abigail. GIVING.ARCHILDRENS.ORG • CHAMPIONS • AU G U S T/ S E P T E M B E R 2 0 2 0

Arkansas Children‘s Northwest:

A Game Changer Because of your generosity, Northwest Arkansas teens like Max have futures full of hope and promise BY KYRAN PITTMAN

MAX BLACKWELL AGE 13 FORT SMITH

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any parents let their worried imaginations run away with them when looking up a sick child’s symptoms online. But when Dee Blackwell saw leukemia mentioned as a possible cause of her son Max’s mysterious rash, her physician husband Jeff reassured her it was the least likely of all scenarios. The 9-year-old had not been feeling well all week, but until then, he’d always been healthy. So the Fort Smith family was not prepared to discover the leastlikely scenario was the one they’d been dealt. That morning, May 12, 2017, when Dee had taken Max to his pediatrician in their hometown of Fort Smith for bloodwork, the presumption was he had a viral infection. They were called back to the doctor’s office that afternoon, where they learned Arkansas Children’s Hospital (ACH) was already expecting them. White blood cell counts revealed Max’s situation was so serious he would have to wait at the local hospital for air transport arrangements to be made, because of concern that he could suffer a stroke or heart attack at any time. “Literally, that morning our life was one way, and when we went to bed that night, it was never the same,” says Dee. She and Max flew on an airplane to Little Rock, where the ACH team was ready and waiting. “I distinctly remember a physician standing there in the pediatric intensive care unit (PICU) waiting for me,”

• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.

Because of you, 13-year-old Max Blackwell received expert pediatric cancer care at Arkansas Children’s Hospital and Arkansas Children's Northwest. Thank you for being a champion for children like Max! says Dee. “Her support and compassion were amazing. She had a mother’s heart, to stand there and talk me through what was happening and calm me down.” She also warmly recalls her first meeting with Dr. Mian, Max’s primary oncologist. “We met him in his regular clothes, because it was 11 o’clock at night, and he’d been called in to meet us. Those moments will always be etched in our memories.” Max was in the PICU for three nights to be stabilized before moving to the hematology/oncology floor. “It was a very scary, stressful time,” says Dee. But she says all the PICU nurses went above and beyond. “It’s just amazing, the little things they did from the very beginning.” Max also benefited from Child Life services, says Dee, and loved playing with the T.A.I.L.S. therapy dogs who visit patients regularly. Life changed dramatically for the Blackwells as Max underwent his first year of treatment at ACH. Dee says the opening of Arkansas Northwest Children’s (ACNW) in Springdale has been a “major game changer,” allowing Max to receive most of his maintenance therapies close to home. “It has been very impactful for our family to be so

close to ACNW. We love Dr. Mian at ACH, but now, with Dr. Saylors at ACNW, we have the best of both worlds.” “ACNW is an hour from our door at home to check-in,” she explains. “We can sleep in our own beds, take Max’s little brother Tyson to school, and often we are back in time to pick him up. When we were in Little Rock, Tyson hated being apart from us so much.” Max is expected to complete maintenance treatments in August 2020, and the Blackwells hope their experience can make more people aware of childhood cancer. Thanks to the care Max has received, he’ll be able to celebrate the end of his treatment and his 13th birthday. “My son was no different than anybody else’s. Cancer doesn’t discriminate. It hits across all socioeconomic levels, races, religions, cultures.” Dee describes the now 13-year-old Max as an easygoing, responsible eldest child who always tries his best. He loves science and space, and dreams of being an aeronautical engineer. “He has a tender heart for others, especially after going through this experience. Max understands what it is to be scared and to feel bad. If seeing him on the other side of this can help somebody else feel better, he has a real heart for that.”

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Emergency Care Close to Home Bicycle crash leads to Arkansas Children’s Northwest Emergency Department for Fayetteville boy BY BECKY MCCAULEY

ne late afternoon in April, life for the Lefler family of Fayetteville came screeching to a halt with the sound of crashing metal. Erin and TJ Lefler were enjoying a family bicycle outing on a Lake Fayetteville trail with their children Charlotte, 8, and James, 6. Their 4-year-old daughter Bray was also along for the ride in a screened trailer. The trail was crowded with people walking and biking, enjoying the beautiful spring weather. The Leflers were just rounding a curve, passing a large group of walkers when, suddenly, another adult bike rider came barreling toward the family, music blaring. Before Erin and TJ knew what was happening, their son was lying unconscious under a tangle of broken, mangled bicycles. “It sounded like a car crash…it was horrible,” says Erin. “We started peeling the bikes apart, and James wasn’t moving. For a terrible split

second, I thought he was dead.” The traumatized mom, fearing a serious neck injury, wouldn’t let anyone touch her son. James soon came to and sat up, screaming and crying. Erin used her sweatshirt to wipe his face, which was covered in blood. A gaping hole right under James’ nose appeared. Erin remembers thinking, “Okay. Other than being unconscious and needing medical attention for his face, he’s at least alive. And I don’t see any bones poking out.” After a frantic discussion with her husband about where to take James for urgent medical care, Erin says the obvious choice dawned on her—Arkansas Children’s Northwest (ACNW). Luckily, the family had needed two cars to transport their biking equipment to the Lake Fayetteville trail. While TJ waited for the biker who had hit James to carry James’ damaged bicycle to TJ’s car, Erin sped off in the other car with James and

Bray snugly secured in their car seats. Erin called ahead to alert the hospital they were on their way, and to find out any COVID-19 safety protocols. She was told only one person could be with James in the Emergency Department at a time. “The car ride was so stressful. James kept falling asleep. Then he would wake up and ask me if he was dying,” says Erin. “There was nothing I could do to make him feel better. So once we got to ACNW, where they knew exactly what to do for him, I felt such relief.” At the hospital, staff met Erin, Bray and James with a wheelchair, and Erin answered the COVID-19 screening questions about current symptoms and travel. After having their temperatures checked, Erin and James were taken to the ED’s triage area. Thankfully, by the time they reached triage, James had calmed down. “James had been incoherent after the accident,” says Erin. “But by

Your generous support provides expert pediatric emergency care at Arkansas Children's Northwest. You help kids like James get better today and have a healthier tomorrow—thank you!

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• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.

JAMES LEFLER AGE 7 FAYETTEVILLE

the time we got him back to triage in the ED, he was more like himself.” When TJ and Charlotte arrived at the hospital, hospital staff who had been watching Bray escorted her out to join her father and sister. James was examined by the physician on duty. He had sustained a mild concussion that didn’t require treatment. But the hole in James’ face would need about 30 stitches inside and out to heal. After about a week’s recovery time, James’ stitches were removed. He was gradually able to return to his favorite activities: swimming, baseball, playing with his sisters and, yes, riding his bike with his family. Erin and TJ are amazed at the difference between an adult hospital and a children’s hospital when caring for children. “Everyone who works at Arkansas Children’s Northwest knows how to deal with children. The

needle sizes…how they put in an IV… everything." Erin reflects on the stressful time with gratitude: “James received wonderful care at ACNW. We’re so thankful we can be at a hospital that caters to kids in just a few minutes. I couldn’t be more thankful for the staff—everybody we talked to was so kind. ”Now that we have ACNW in Springdale, I would never NOT choose it for my child. I don’t know why you would take your kids anywhere else.” The Lefler family is grateful to you for your support of Arkansas Children’s: “Thank you so much for providing a place where we can take our kids and they feel safe,” says Erin. “It makes me feel more secure knowing we have Arkansas Children’s Northwest within 10 minutes of our home.”

How you can support our patients, families and healthcare heroes during the COVID-19 crisis: If you like to sew, Arkansas Children’s is in need of homemade cloth masks for clinic patients and patients' family members. You can also help celebrate the healthcare heroes at Arkansas Children’s by donating restaurant gift cards or individually packaged, restaurant-catered meals. For mask guidelines, pattern and delivery, or to provide much-appreciated meals for staff, please call (501) 364-1825 for ACH or (479) 7256986 for ACNW, or you can email volunteer@archildrens.org.

Toys To donate items such as coloring books, crayons, books and toys for patients and families, visit the Arkansas Children’s Walmart Registry for Good at walmart.com/registryforgood/ ARChildrens to place your order.

Monetary Gifts To support the Arkansas Children’s COVID-19 Emergency Fund or any other program at ACH or ACNW, visit give.archildrens.org/ champions or call the Foundation at (800) 880-7491. This fund will help with evolving needs ranging from equipment to providing assistance directly to families experiencing financial hardship during this crisis.

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WHY I GIVE

Hearts & Butterflies The Marshall family of Northwest Arkansas finds a very special way to give back BY ASHLEY LEOPOULOS

hilanthropy is close to Aaron Marshall's heart for one very simple reason...it saved his life. Forty-five years ago, Aaron was born with a life-threatening congenital heart defect. At just 18 months old, he had open-heart surgery to repair the defect. Aaron’s surgery took place at Children’s Hospital Los Angeles and he received follow-up care at the Ann & Robert H. Lurie Children’s Hospital in Chicago. Along the way, Aaron’s care at both hospitals was made possible because of generous donors like you. Since that time, Aaron has been determined to give back. Although Arkansas Children’s treats primarily children, pediatric cardiology patients are treated at Arkansas Children’s throughout their lives. Since 2010, Aaron has received his fiveyear cardiology checkup at Arkansas Children’s Hospital (ACH) in Little Rock. And in 2021, Aaron will visit with his cardiologist, Dr. Bhamare, for the first time at Arkansas Children’s Northwest (ACNW) in Springdale.

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Now that Aaron is a father himself—to Jackson, 11, and twins Lily and Emma, 8—he understands even more the importance of having access to lifesaving pediatric care close to home at ACNW, and how philanthropy makes the future possible for so many families. In 2013, Aaron served as president and CEO of BCS in Springdale, a point-of-sale support company for retailers such as Walmart. When Aaron learned an employee’s child was diagnosed with cancer, he and his wife Jaye T. saw the perfect opportunity to give back in a big way. The Marshalls established an endowment to support pediatric cancer treatment at the ACH Clinic in Lowell, now a part of ACNW. An endowment is an investment fund structured so the principal amount remains intact while investment income is available for use. They named the gift the JLE Marshall Endowment for Northwest Arkansas in honor of their children. In 2015, Arkansas Children’s announced plans to build ACNW in Springdale. After hearing the plans for the new pediatric hospital, Aaron and his family wanted to provide additional support

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The Marshall family from left to right: Jackson, Emma, Jaye T., Lily and Aaron. to families in the region with a gift supporting the project. “Being a parent of three healthy children, I have a better understanding of the sacrifices my parents went through to ensure I received quality care. Jaye T. and I wanted to give back in a way that would honor my parents,” says Aaron. Together, the Marshall family celebrated the life of Aaron’s mom, Genola R. Marshall, by dedicating a butterfly garden on the ACNW campus in her honor. The family celebrated the naming of the space with an intimate ceremony in the spring of 2018 and continues to give monthly to Arkansas Children’s Northwest. “My mother was very strong in her faith, and blue butterflies were a special sign to her in the last few months of her life.” “With my personal connection to the lifesaving care provided by a children’s hospital, we are proud to support Arkansas Children’s Northwest," continues Aaron. “ACNW provides essential access to pediatric healthcare to all children in the region.”

The Butterfly Garden on the Arkansas Children’s Northwest campus is named for Aaron Marshall’s mother, Genola R. Marshall.

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HELP ME HEALTHIER HAVE A

TOMORROW

JOIN US TODAY. Make your gift to the COVID-19 Emergency Fund or any other program in support of the kids at Arkansas Children’s. Your gift of $25, $50 or more to Arkansas Children’s will help children get better today and be healthier tomorrow. Visit give.archildrens.org/champions or call (800) 880-7491.