THE MAGAZINE OF ARKANSAS CHILDREN’S FOUNDATION
DECEMBER 2020
Hope IN THE DARKNESS
Because of you, 7-year-old Genevieve is well on her way to a healthier tomorrow.
You Make a Difference Dear Champion for Children, Pediatric cancer is one of the most financially and emotionally devastating illnesses a family can face. Families impacted by this terrible disease suffer exhausting, bewildering days, sleepless nights and constant worry. And due to treatment plans that can include long hospitalizations and frequent clinic visits, parents often must make the choice between working to provide for their family and being with their child while they are getting the life-saving treatment they need. In this issue of Champions, we’re celebrating how your generosity provides a critical lifeline for these young patients and their families. Turn to pages 8–9 to learn how the Arkansas Children’s Social Work Department provides compassionate care through financial assistance and mental health support—all because of you. The McFerrons are one such family. Last Christmas, Megan and David McFerron
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
received a call they will never forget. On pages 4–5, you’ll read 7-year-old Genevieve
Frances Buchanan
McFerron's remarkable story and how, because of your generosity, she is receiving
Stuart Cobb
treatment for cancer and is well on the road to a healthier tomorrow. Then, on pages 6–7, you’ll meet 16-year-old Keyohn Johnson. When Keyohn was 11, this kind-hearted, athletic boy was stricken with cancer and faced three years of treatment. But according to Keyohn’s mom, Atta, her son has been “amazing” through it all. Because of the support of people like you, Keyohn is now looking toward a bright future filled with promise. And finally, JaKiah Collins is a special young lady who inspires me every day with her
Steve Davison Marcy Doderer, FACHE* Harry C. Erwin III* Kim Fowler Sharilyn Gasaway* Robin George* Sonja Yates Hubbard
determination and dedication to helping other kids like her. Turn to pages 10–11 to read
Brandi Joplin
about how JaKiah and her family have helped change the lives of cancer patients
Mandy Macke
at Arkansas Children’s and around the state. Cancer touches all our lives, and pediatric cancer turns the world upside down for children and their families. But your support helps provide exceptional patient- and
Jim McClelland Barbara Moore Beverly Morrow
family-centered care in a kid-savvy environment at Arkansas Children’s. Thank you for
Cindy Murphy
being a champion for children!
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, Shelley Youngblood Designer C. Waynette Traub Photographers Katie Childs, Daniel Moody 2
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Henry Rogers, MD *Executive Committee Current as of December 1, 2020
The Difference You Make AT ARKANSAS CHILDREN’S
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he Social Work Department at Arkansas Children’s is an important part of delivering exceptional pediatric healthcare to children. Each child with high-risk, critical-care needs, such as cancer, is assigned a statelicensed, Master’s -level social worker to help their family cope with the devastating, far-reaching effects of a lifechanging diagnosis. With your generous support, this dedicated, compassionate team of highly trained professionals provides a variety of resources—from emotional support to help paying the bills—to aid families through some of the darkest times of their lives.
Your support helps the Social Work team do critical work every day at Arkansas Children’s Hospital. Here are some of the many ways you deliver compassion to patients and families through the Social Work Department:
273,464+
$
from champions like you provided to families at ACH
253,413+
20,051
$
$
for basic needs like clothing, transportation, food, household items, prescription meds and utility expenses for families
49,384 contacts
in housing expenses for families with a hospitalized child
41
contacts with families receiving end-of-the year holiday assistance
with patient families by social workers at ACH
JULY 1, 2019–JUNE 30, 2020
Because of you, the Social Work Department at Arkansas Children’s Hospital gives patient families vital emotional and financial resources—leading to a healthier tomorrow for kids fighting devastating illnesses like cancer. Thank you for being a champion for children at Arkansas Children’s! GIVING.ARCHILDRENS.ORG • CHAMPIONS • DE C E M BE R 2 0 2 0
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Hope IN THE DARKNESS Because of you, 7-year-old Genevieve McFerron and her family receive expert, compassionate care at Arkansas Children’s Hospital. BY BECKY MCCAULEY
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hen Megan and David McFerron’s 6-year-old daughter, Genevieve, asked, “Am I going to die from cancer?” their hearts stopped. Last fall, Genevieve began coming home from school more tired than usual. She would sometimes eat dinner and immediately ask her parents if she could go to bed. As a kid who “doesn’t want to miss family time,” Megan and David grew concerned. Then, a month later, Genevieve began running a low-grade fever and had a cough that wouldn’t go away. Her pediatrician ran multiple tests that all came back negative. Genevieve was treated for a sinus infection, and for a few weeks, she seemed better... Until her fever returned.
Megan’s uncle, who is a family doctor, suggested they run bloodwork. When, on Christmas Day, they still didn’t have the test results, the worried uncle couldn’t wait—he headed to the office to see if the labs had returned. They had...and the results were alarming. On Christmas night, Megan received a call from her uncle she would never forget. Although he couldn’t give her a definite diagnosis, Megan and David had a horrible premonition their world was about to be turned upside down. The day after Christmas, Megan’s uncle called Genevieve’s pediatrician, who immediately referred them to Arkansas Children’s Hospital. Genevieve was rushed to the Emergency Department at ACH and admitted to the cancer unit for more tests.
YOU R GENERO US SUPPORT HE L PS CA N C E R PAT I E N T G E N EV IE V E — A N D 4
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GENEVIEVE MCFERRON AGE 7 MOUNT VERNON
Sadly, Megan and David’s suspicions were correct... their world was shattered. Their sweet, bright, creative daughter had been stricken with the life-threatening disease we all dread...cancer. Genevieve’s type of cancer involves three phases of treatment. Each phase includes different medications, chemotherapy treatments and tests. Genevieve is currently going through her third phase. It’s been a journey of ups and downs for the close-knit family of six. “When your child is sick, there’s a constant reminder whenever she walks into the room and looks different,” says David. “Or whenever she gets sick or doesn’t have the energy to play. There’s nothing worse than worrying about your child all the time.” “The hardest parts for me are those little moments when I feel like I’m forgetting what she’s really like,”
says Megan. “The steroids and chemo make her look and act so differently. In those moments, I pray for just a little glimpse of ‘my Genevieve.’” Genevieve’s illness has been especially hard on her three younger brothers. Genevieve is a “little mama” to Maverick, who is 5, Tate David, who is 3, and little Miller, who is just 1. Sweet, sensitive Maverick checks on Genevieve often to make sure she’s okay. Tate David and Genevieve dream up big things together. And baby Miller never fails to get a smile out of Genevieve…even when no one else can. Genevieve’s family is so grateful for your support. “Your money helps give life-saving care to kids like my daughter,” says David. “You help provide hope in the darkness. Where would we be if we didn’t have Arkansas Children’s?”
KI D S LIKE HE R— GET THE LI FE-SAVI NG PE D I AT RI C CA RE T HE Y D E SE RVE ! GIVING.ARCHILDRENS.ORG • CHAMPIONS • DE C E M BE R 2 0 2 0
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A Special Bond With your help, Fayetteville boy forms a special bond with his care team at Arkansas Children’s. BY SHELLEY YOUNGBLOOD
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eyohn Johnson of Fayetteville was your average 11-year-old boy, full of energy and playing just about any sport that involved a ball. Naturally, when he began complaining of ankle pain during a baseball tournament, his parents, C.J. and Atta, assumed it was just a minor sports-related injury. That was, until they watched their son jump to catch a fly ball. When Keyohn landed from the jump, the impact caused such intense pain he wasn’t able to walk. C.J. rushed to carry Keyohn off the field and straight to an urgent care clinic. X-rays showed a cyst on Keyohn’s ankle, and he was immediately referred to Arkansas Children’s Hospital (ACH). Keyohn had surgery at ACH to remove the cyst. After he healed, the orthopedic surgeon gave him the green light to resume sports. Everyone thought the worst was behind them. Then came basketball season. While Keyohn was excited to be back in the game, he was growing increasingly frustrated by fatigue and a decreased level of performance. He and his parents chalked it up to being out of shape from the time off. But Atta could tell something wasn’t right. Unfortunately, her instincts were correct. 6
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Keyohn spent his Thanksgiving break on the couch. He wasn’t eating and turned down offers from friends to go out and play. Atta and C.J. grew more and more concerned, and made plans to take Keyohn to the emergency room the following day. Atta watched over and worried about her son all night. When morning came, his condition had worsened, so she drove him to a local emergency room. From that point forward, Atta’s world began to spin. Keyohn was rushed into a room and put on oxygen and a heart monitor. Atta says, “They came in four different times to take blood, and suddenly, I was handed papers to sign while being told Keyohn needed a blood transfusion, and he needed it right then!” Atta was relieved to see the life returning to her son’s body after the blood transfusion—the color returned to his face, the dark circles under his eyes lessened and his lips regained a pinkish hue. Unfortunately, that relief was shortlived once the doctor asked to speak to her in the hall. The doctor explained that the Arkansas Children’s Angel One helicopter would pick Keyohn up in 30 minutes to transport him to ACH
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KEYOHN JOHNSON AGE 16 FAYETTEVILLE for care. Then Atta heard some of the scariest words any parent could ever hear: “We need to test your son for leukemia.” Atta and Keyohn were flown to ACH, where a care team of four doctors and four nurses awaited his arrival. C.J. made a long, frantic drive from their hometown of Fayetteville to meet his wife and son in Little Rock. After a series of tests, Atta heard the devastating news for a second time: “We are 99.9 percent sure Keyohn has leukemia.” “After the bone biopsy the following day, our worst fears were confirmed,” says Atta. “We learned our son had acute lymphoblastic leukemia (ALL)—a progressive cancer of the blood and bone marrow.” The cancer was so advanced his parents were shocked to learn Keyohn might not have survived another couple of weeks.
Your generous support helps cancer patients like Keyohn get the life-saving care they need. Thank you for being a champion for children at Arkansas Children’s! Keyohn Johnson (second from left) with his parents, Atta and C.J. (center), and members of his care team celebrate his last chemotherapy treatment at Arkansas Children’s. Because of the severity of his illness, Keyohn was about to face the biggest challenge of his life: a threeand-a-half year treatment plan. From that moment forward, Keyohn’s optimism never wavered, even after earning the nickname “complicated Keyohn”—lovingly given to him by the nursing staff. “Keyohn endured so many setbacks and crazy complications throughout his journey with leukemia. Everyone joked that if something could go wrong with him, it would.” Through it all, Atta says her son has been amazing. She recalls being up with Keyohn one night as ACH staff administered fluids to flush the chemo out of his system. At one point, Keyohn looked up at Atta and said, “Mama, I’m sorry.”
When Atta asked him why, Keyohn said, “Because you have to do everything for me.” Atta told her son not to be sad and that if she could take it from him, she would. Keyohn immediately responded with, “No! I’m glad it’s me and not you or daddy or Sania,” his younger sister. He then said, “I’m glad you’re my mom. You’re the best mom ever.” A true example of Keyohn’s selflessness and beautiful spirit. The Johnsons are appreciative of the support they’ve received through these difficult years, saying, “We are truly blessed to have amazing family, friends and a community who all pulled together and helped us in so many ways.” Atta lost her job due to the hours of home-care Keyohn required, making
the love and support they received from others all the more special. Keyohn completed his treatment plan in March 2019, but still has lingering health issues. He currently sees a neurologist, a nephrologist and a cardiologist, in addition to ongoing cancer scans. When Arkansas Children’s Northwest opened in Springdale, Keyohn was able to begin receiving care close to home. But Atta says they have a very special place in their hearts for the team at ACH. “We have been with them since 2015; they are amazing and we love them,” says Atta. “We just have that special bond that can’t be explained. They are our family.”
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A Critical Lifeline
Because of you, the Social Work Department provides emotional and financial support for patients and families at Arkansas Children’s Hospital. BY BECKY MCCAULEY
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hen a child is hit with a devastating illness, a family’s financial situation can suddenly become dire. The family may not have any savings. A single mom may have to quit her job to be with her hospitalized child. A dad might miss too much work because his child must visit the hospital several times a week for treatment. “There are a lot of families in Arkansas who live on the edge of poverty…many of these families are just getting by,” says Arkansas Children's Hospital (ACH) Director of Social Work, Family Services and Interpreter Services Carol Maxwell, LCSW, ACSW. “So when they’ve suddenly got a sick kid, it tips them over the edge.” With your generous support, the Social Work team at Arkansas Children’s champions families struggling to make sense of a devastating childhood illness or injury. The goal of the Social Work team is to help families navigate what can often be an overwhelming healthcare system. Whether it be financial assistance, mental health support, help understanding and coping with a new medical diagnosis, even help paying for vehicle repairs; the social workers are an important part of a child’s care team at Arkansas Children’s.
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Thanks to your generous support, the Social Work Department at Arkansas Children’s Hospital provides vital emotional and financial resources for patients and families every day. The Social Work Department provides care for a patient while he or she is in the hospital—or at home. For example, if a family can’t pay their rent due to their child’s illness, the child could end up homeless. Or, a mom with a chronically ill child who has frequent clinic visits may be driving on worn-out tires, which is dangerous for both. In cases like these, Social Work will often step in to help. But according to Carol, they can’t do it without the support of people like you. “These are the
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things for which we rely heavily on philanthropy,” says Carol. Because of you, social workers at Arkansas Children’s are able to address a wide variety of issues for patients and their families. When a child is suddenly stricken with a life-changing or life-limiting illness or injury, the emotional impact on the family can also be devastating. Arkansas Children’s social workers are trained to provide emotional support and crisis counseling for the entire family. “A lot of what we do requires mental health skills,” says Carol.
Because of you, children at Arkansas Children’s Hospital are better today and will be healthier tomorrow. Thank you for giving kids at ACH a brighter future! “We often work with patients and families who have suffered from abuse or neglect. We do a lot of grief or end-of-life work, trying to help families prepare and cope with the death of their child. We address fears and anxieties, and help families find their voice when speaking with members of their medical team. Some families are reluctant to speak up, and if there is a language or cultural barrier, it’s even more difficult for them. Our goal is to help all our families advocate for themselves.” Arkansas Children’s social workers are often referred to as “angels” by the patients and families they serve. And it fits. This specially trained, hardworking team is a critical lifeline in helping families cope with the financial and emotional impact of having a sick or injured child. And because the services provided through the Social Work program are never billed to the family, they couldn’t do it without your generosity. “We cannot and do not survive without your support,” says Carol. “At Arkansas Children’s, we have such generous donors. I’m always in awe of people who want to give their money to help our patients and families—it’s amazing!”
Nia and Michelle In November 2017, 11-year-old Nia was sent to a small town in Crawford County to live with her 22-year-old sister, Michelle. Nia had traveled from her home in another country— she needed life-saving cancer treatment at Arkansas Children’s Hospital (ACH). But Nia was 3 years old the last time she had seen her older sister. Michelle was single with no children and worked six days a week in a plant. The situation was difficult and life-changing for both sisters. Nia was suddenly living with someone she barely knew; she spoke little English; and she missed her home, her mother, her other sister and her dogs. At a young age, Michelle suddenly became a guardian to a very sick child and had no one to lean on for emotional or financial support. This is where ACH Social Work Supervisor and Hematology/ Oncology Social Worker Jennifer Taussig Irby, LCSW, stepped in. Because of your support, the Social Work Department helped Michelle pay several months of rent, utilities, gas and travel expenses, and even car repairs. “Nia and Michelle were so dedicated and determined to make this work, but they couldn’t do it without help,” says Jennifer. “Without this support, Nia would have been forced to return home to her mother and wouldn’t have received the life-saving care she needed.” While the financial assistance for families is important, emotional support is just as crucial to a successful outcome for patients like Nia. Nia was angry, and felt isolated and abandoned by her mother. Michelle felt unappreciated for the enormous responsibility she had taken on and the sacrifices she made to care for her sister. But because of your generosity, Jennifer was able to help the sisters, through many months and numerous sessions, develop a close, supportive relationship. Jennifer remembers the first time Michelle and Nia said they loved each other. The first time Nia thanked her sister for taking care of her and helping her to live was a moment Jennifer will never forget. “I think what we do means a lot to families like Nia and Michelle. It can be a difficult, sometimes heartbreaking job,” says Jennifer. “But these moments are what keep us going. You can’t underestimate the value of being present in the middle of their pain and just saying, ‘What can I do to help?’”
Because of your generous support, the Arkansas Children’s Social Work Department provides assistance for families of patients with cancer and other terrible illnesses. GIVING.ARCHILDRENS.ORG • CHAMPIONS • DE C E M BE R 2 0 2 0
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WHY I GIVE
Dedication & Determination With your help, Central Arkansas cancer patient makes a difference for kids locally, statewide and across the country. BY ASHLEY LEOPOULOS
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t first glance, JaKiah Collins is a typical 12-year-old—funloving, active and kind. But don’t let her sweet exterior fool you. Inside, this young cancer survivor is a powerhouse of dedication and determination to make a difference for kids just like her. JaKiah’s cancer journey began in 2012 with a routine visit to the doctor. At her well-child appointment, the pediatrician was concerned about swelling in JaKiah’s belly and recommended a follow-up visit. When her belly continued to swell and harden, the doctor referred the family to Arkansas Children’s Hospital (ACH). At ACH, JaKiah’s family received the devastating news. The 4-year-old had stage IV Wilms tumor, a form of kidney cancer in children. She received chemotherapy to shrink the tumor, and then had surgery to remove it. Thankfully, six months from her initial diagnosis, JaKiah was cancer-free. JaKiah returned to ACH every six months for follow-up appointments and checkups to ensure her cancer hadn’t returned. Then, in 2018, JaKiah’s care team at ACH gave her the ALL CLEAR, celebrating five years cancer-free! Reaching this milestone greatly increases her 10
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chances for life-long remission. Now, JaKiah returns to ACH just once a year for a checkup. After her successful cancer treatment, JaKiah and her family wanted to pay it forward. In 2015, JaKiah was nominated by an ACH staff member for the Arkansas Children’s Ambassador Program—a group of current and former patients who travel the state, attending fundraisers and sharing their stories of receiving care at Arkansas Children’s. After JaKiah’s first year of serving as an Arkansas Children’s Ambassador, JaKiah’s commitment to making a difference for kids grew. She continues to serve as an Ambassador, and is one of the longest serving Ambassadors in the history of the program. This dynamo has attended more than 100 events, donated thousands of hours of her time and helped raised tens of thousands of dollars for Arkansas Children’s. In addition to JaKiah’s statewide service as an Arkansas Children’s Ambassador, she was one of 50 Local Champions selected in 2016 by Children’s Miracle Network Hospitals (CMNH) to represent children’s hospitals nationally. Founded in 1983, CMNH is a
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nonprofit organization that raises funds for 170 children’s hospitals in North America. Arkansas Children’s is a proud founding member. As a Local Champion, JaKiah traveled to Washington, D.C., to advocate on behalf of children’s health and to celebrate children’s hospitals at Momentum, the annual CMNH event. After two years of serving as a Local Champion, JaKiah was handpicked as one of only 10 children nationwide to represent CMNH across the U.S. as a National Champion.
JAKIAH COLLINS AGE 12 BENTON Through her national CMNH service, JaKiah served as a face for pediatric cancer, appearing in dozens of national philanthropic campaigns for corporate partners like Costco, Coca-Cola, Casey’s General Stores, Love’s Travel Stops, IHOP and many more who donate to pediatric hospitals across the country. She has appeared on the front of cereal boxes and in store
advertising—all to advocate on behalf of children, just like her, who need expert care from a pediatric hospital. JaKiah’s story continues to inspire in Arkansas and far beyond. In May 2018, JaKiah was featured in a USA Today HUMANKIND video celebrating her five years of being cancer-free. JaKiah’s involvement as an
advocate for children’s health on local, state and national levels has brought visibility to Arkansas Children’s, CMNH and pediatric cancer across the continent. Because of you, JaKiah is able to share her inspiring story and make a difference for cancer patients across the country.
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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.