Champions THE MAGAZINE OF ARKANSAS CHILDREN’S FOUNDATION
JULY/AUGUST 2019
Your Gifts Matter Because of you, kids like Tori receive expert pediatric cancer care and a healthier tomorrow
Your Gifts Matter! Dear Champion for Children, Childhood cancer is devastating. Families impacted by this terrible disease face exhausting, bewildering days, sleepless nights and constant worry. Children endure painful needle sticks and treatments, long hospital stays and separation from their family and friends. In this issue of Champions, we’re celebrating the many ways your generous support is helping Arkansas Children’s “Go Gold” in support of pediatric cancer awareness and treatment. Because of you, Arkansas Children’s provides expert, compassionate care to our young patients and their families every day. Four-year-old Tori Johnson is unstoppable. When she was stricken with a rare brain cancer, she had surgery at Arkansas Children’s Hospital to remove the tumor. On pages 4–5, you’ll read her remarkable story and how, because of your generosity, Tori is now healthy and thriving. On pages 6–7, you’ll meet 15-year-old Alex Hinerman. Alex was a typical, busy teenager when she noticed a knot on her neck. Because of the support of people like you, Alex received life-saving care and is now looking forward to a bright future filled with promise. Tristan Gill seemed like a healthy, active preschooler until his mother noticed blood in his urine. He was referred to Arkansas Children’s Hospital, where he was diagnosed with kidney cancer. Read on pages 8–9 about how a superhero gave Tristan his superpowers and made hospital visits something to look forward to. And finally, Mandy Macke is a tireless advocate for children. In addition to her role as executive director of the Willard & Pat Walker Charitable Foundation, she also dedicates her time and talent serving on the Arkansas Children’s Foundation Board of Directors. And, most recently, Mandy chaired the 2019 Color of Hope Gala in early August. Under the leadership of Mandy, Mike Sewell, Kyden Reeh and Tony Murphy, this year’s Will Golf 4 Kids Tournament and Color of Hope Gala broke last year’s record in funds raised to expand pediatric cancer treatment at Arkansas Children's Northwest. Read more about Mandy's advocacy on pages 10–11. Pediatric cancer turns the world upside down for children and their families. But your support helps provide family-centered care in a kid-savvy environment at our two hospitals and regional clinics. Thank you for helping make kids better today and healthier tomorrow.
Fred Scarborough, CFRE President, Arkansas Children’s Foundation Chief Development Officer, Arkansas Children’s CHAMPIONS STAFF: Editor Becky McCauley Contributing Writers Ashley Leopoulos, Becky McCauley, Kyran Pittman, Caralisa Richardson Designer C. Waynette Traub Photographers Beth Hall, Lazer Lee Photography, Ben Moody, Daniel Moody, Dero Sanford 2
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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 August 1, 2019
The Difference You Make Pediatric cancer is the leading cause of death by disease for children in the United States. Every three minutes, a family receives the devastating news—their child has cancer. At Arkansas Children’s, about 100 new cases of pediatric cancer are diagnosed every year. This September, join us and Go Gold in support of pediatric cancer awareness and treatment. Your generosity helps children and families fighting cancer receive expert, right-sized care in a compassionate, kid-savvy environment. Because of donors like you, Arkansas Children’s is the only place in the state where children can receive comprehensive care for cancer.
Pediatric cancer is devastating to children and families physically, emotionally and financially. Here are some shocking facts about this terrible disease:
15,780
children aged 0–19 are diagnosed with cancer each year in the U.S.*
90%
250
children are in treatment for cancer at Arkansas Children’s at any given time
100
new cases of pediatric cancer are diagnosed at Arkansas Children’s every year
#1
of pediatric cancer cases in the state are treated at Arkansas Children’s
Cancer is the leading cause of death by disease for children in America*
1/3
of patients diagnosed with cancer in Arkansas are from 11 counties in Northwest Arkansas
*DATA GATHERED FROM THE AMERICAN CHILDHOOD CANCER ORGANIZATION
Thank you for championing children at Arkansas Children’s. Because of you, children in Arkansas battling cancer receive expert, pediatric care. GIVING.ARCHILDRENS.ORG • CHAMPIONS • J U LY/AU G U S T 2 019
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Tenacious Tori Because of your support, kids like Tori win the fight against pediatric cancer BY KYRAN PITTMAN
E
rin Johnson still has the text message she received from the daycare teacher on the morning of October 20, 2015, alerting her that something was not right with Erin’s 9-month-old daughter. Tori, the message said, was spitting up and not acting like herself. Erin, who had dropped Tori off just two hours earlier, thought the teacher might be overreacting to teething symptoms. After all, the child who waved “bye-bye” to her that morning was perfectly healthy. Erin describes her as “always on the move, crawling, pulling up and close 4
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to walking,” eager to keep up with her then 3-year-old sister, Sydney. A little before noon, Erin got a second message. Something was definitely wrong. By 2:30 that afternoon, Erin was in an exam room waiting for her pediatrician, when the nurse came in and saw how lethargic the baby was. She went to get the doctor right away, who looked at Tori and asked if Erin was able to drive her to a local emergency room. Two scans and two hours later, mother and daughter were on an Angel One helicopter, headed to Arkansas Children’s Hospital.
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“There was no time to grasp what was happening,” says Erin. “When I got on the helicopter, I thought we were going down for a brain bleed. Then we got there, and Dr. Greg Albert started talking to me about cancer.” Tori, the scans revealed, had a tennis ball-sized tumor— AT/RT brain cancer. The words barely computed with Erin. “I told him, ‘I must be misunderstanding something, because when you said tumor, I heard cancer.’ And he said, ‘Yes. Do you want to sit down?’ I couldn’t believe something that terrible could be wrong with her.”
Erin, who describes herself and husband Matt as “very analytical business people,” says Dr. Albert’s calm, straightforward demeanor meant a lot to her from the very beginning. “I told him, ‘my husband is driving here, and this news is going to destroy him. I need you to tell me what we’re facing.’” She says Dr. Albert, chief of pediatric neurosurgery, patiently explained to the couple what the recommended course of action was, and prepared them for the probable outcomes. If nothing was done at all, Tori might have a few weeks. If a biopsy showed it was aggressive cancer as he suspected, further treatment might prolong her life by months. Erin remembers at the time their best hope was slowing down the progression of the tumor, but then something entirely unexpected happened during the biopsy surgery: Dr. Albert was able to remove the entire tumor. A follow-up MRI confirmed that the entire mass was removed. Erin calls it a miracle. “People say faith, prayer and science don’t go hand in hand,” she says, “but to us there’s no other explanation.” Due to the possibility of microscopic cancer cells left behind, Tori still had to undergo chemotherapy, a stem cell transplant and radiation treatment. When the new hospital opened in Springdale, they were able to transfer Tori’s treatment to Arkansas Children's Northwest. Erin says the impact on their lives was huge. Whereas before, treatments were a two-day affair, involving long road trips, expensive hotel stays and overnight sitters for big sister Sydney, the opening of Arkansas Children’s Northwest meant Tori could receive treatment and follow-up visits with minimal disruption to family routines.
“It changed life for all of us.” Through Tori’s treatment, big sister Sydney has been “a rock star.” Erin says that ACH’s Child Life specialists did a great job making sure her needs were also being met, finding her a costume and taking her trick-or-treating at the hospital on Halloween. She also appreciated the “little and huge things” the pediatric intensive care unit nurses did to help the Johnsons during their time there. “We call them angels on earth,” she says. “Their job was to take care of Tori, and they did that amazingly. But what they also did for me and my husband we can never forget.” One thing she is especially grateful for is the advice of one nurse to get a journal to record her thoughts and questions. Erin says it was an invaluable tool for coping with the overwhelming amount of information, and provided a record of Tori’s progress through her treatment. The Johnsons, who both work as sales representatives, found their proactive, analytical personalities equipped them well for the challenge. “I sell cheese for a living. I don’t know medical terms,” she says, laughing. But she pushed herself to understand and ask questions, sometimes repeatedly, until she understood. She was grateful her doggedness was welcomed and even encouraged by Tori’s team at ACH. “I felt like a toddler, sometimes asking over and over, ‘why are you doing this?’ But I want to be able to look Tori in the face when she’s 18 and say we made the best decisions we could. That we put her in the best position to fight.”
You can GO GOLD for kids like Tori September is Pediatric Cancer Awareness Month, and a gold ribbon has been chosen by the American Childhood Cancer Organization as a symbol for promoting awareness of this devastating disease. The gold ribbon represents: • the strength and courage of every childhood cancer patient • the need for research to improve the low survival rates of some types of pediatric cancer • the need to help pediatric cancer survivors who suffer long-term, debilitating health problems resulting from their cancer treatment Your support helps Arkansas Children’s treat more than 90% of Arkansas’ pediatric cancer patients. But there is still much work to be done. Your support is vital to making a difference for these patients and their families. Join us and Go Gold by making a gift to Arkansas Children’s for kids like Tori. Visit giving.archildrens.org or call (800) 880-7491. Thank you for making kids better today and healthier tomorrow!
Alex’s
Dream
Your support helps central Arkansas teenager pursue her dreams of becoming a pediatric nurse
Y
BY ASHLEY LEOPOULOS
ou would never know that less than a year ago Alex Hinerman was in the fight of her life. A tiny scar just below her right collar bone indicates where her chemotherapy port used to be. This scar is a reminder of the battle she waged and won because of her determination and donors like you. One day Alex noticed a small knot on her neck. Over the next month, the knot began to grow and multiply. While on a trip with her best friend, her care team at Arkansas Children’s Hospital (ACH) called Alex for a follow-up appointment. Her team took an x-ray and performed a biopsy. She was diagnosed with Hodgkins lymphoma, a cancer of the immune and lymph system. “I was in complete shock,” says Alex. “Cancer is not a word I was expecting to hear. I’m grateful for the continuous support from my
family. From the very beginning of my journey, I was determined to beat the disease.” For Alex, ACH is like her second home. Her mom Noel has been a member of the Arkansas Children’s team as the area coordinator for the Circle of Friends Clinic since 2006—when Alex was barely 2 years old. At just 15 years old, Alex began her first round of chemotherapy treatment in December 2018. As her hair began to fall out, Alex was determined to not let cancer steal her joy. Empowered to take control, she shaved her head. “We, like any parents, never thought we would be on the receiving end of the words ‘your child has cancer,’” explains Noel. “Alex was in NYC when we actually received confirmation that she had Hodgkins lymphoma, and it was so hard not to be able to just grab her and hold her tight.
We were all obviously scared, but Alex handled her entire cancer journey with such grace and the best attitude imaginable. From the biopsy, through chemo, losing her hair, and finally ringing the bell after completing her final treatment, Alex always had a smile on her face. She is a warrior and I have never been more proud. Her courage amazes me daily!” On February 19, Alex completed treatment and is now doing well. She looks forward to returning to her classes at Central High School, driving her first car and celebrating her 16th birthday, Alex is grateful for the care she received from Dr. David Becton and all of the nurses on the cancer unit and the Hematology/Oncology Clinic at ACH. Thanks to the excellent care she received, Alex dreams of becoming a pediatric nurse so that she too can help kids just like her beat cancer.
Because of you, teens like Alex have futures full of hope and promise.
Thank you for championing children like Alex. GIVING.ARCHILDRENS.ORG • CHAMPIONS • J U LY/AU G U S T 2 019
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STRONG
LIKE BATMAN Your support helps Rison boy “get his superpowers” BY KYRAN PITTMAN
T
ristan Gill was a perfectly healthy, active preschooler, enrolled in a pre-K program in his hometown of Rison and signing up for basketball. This all changed in October 2017 when blood appeared in his urine. His mom Jasmine took him to see his pediatrician the next day—the first time Tristan had been seen for anything other than routine wellness checkups and immunizations. During the exam, the doctor felt a mass on Tristan’s right side and referred the family to Arkansas Children’s Hospital (ACH), where Jasmine learned Tristan had a form of kidney cancer called Wilms tumor. Jasmine, an x-ray technician, was familiar with the term, but never dreamed it would apply to her child. The news sent her reeling. “Tristan had never even been to an emergency department before then,” she says. “It was a big shock. You go from having this healthy kid to being at the hospital every week, and sometimes twice a week. Everything happened so fast.”
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In less than two days, Tristan was in surgery at ACH with his kidney removed and a chemo port in place. When Tristan woke up from his surgery, he immediately spotted Batman. It was Halloween, and costumed superheroes were visiting Arkansas Children’s patients. When wide-eyed Tristan asked what the caped crusader was doing in his room, he was told he was getting superpowers from Batman. Jasmine said that the memory made the return visits to the hospital much easier. “Every Thursday, when he had to get treatment, we’d say ‘we gotta juice up your superpowers so you can be strong like Batman.’” Jasmine, a single parent, says they could not have made it through Tristan’s treatment without the help of their social worker at ACH. “I had just closed on a brand-new house when he was diagnosed. I thought, ‘I’m about to lose everything.’” Jasmine’s social worker was able to connect her with support to help her with mortgage and utility payments while
she worked drastically reduced hours in order to care for Tristan. Social Work helped her with gas for the weekly trips to Little Rock from Pine Bluff. Jasmine says the assistance meant she could focus on Tristan’s recovery. “I don’t think we’d have made it without them,” she says. Jasmine dreams of one day starting a fund in Tristan’s name to help other families like theirs cope with the financial stress of illness. Tristan underwent weekly treatments for six months. Though he did occasionally run a fever or experience nausea, his mom says that 80 percent of the time he was still the upbeat, energetic boy she’d always known. Last fall, Tristan was able to attend pre-kindergarten and Jasmine is back to work—life, she says, “is back to normal,” though she will never take it for granted. “Be grateful for what you have, because it can be taken just like that.”
Thank you for championing children like Tristan through your generous support of Arkansas Children’s!
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WHY I GIVE
An Advocate’s Passion
Community leader helps raise funds to expand hematology/oncology services at Arkansas Children’s Northwest BY BECKY MCCAULEY
M
andy Macke is passionate about championing children in her community. As executive director and vice chairman for the Willard & Pat Walker Charitable Foundation, Mandy continues to uphold the legacy of Arkansas philanthropists Willard and Pat Walker. Willard and Pat Walker had a passion for advocating for children and a legacy of providing gifts which support children statewide. Established in 1986, the Walker Charitable Foundation has supported a variety of organizations including the college of business at the University of Arkansas, Crystal Bridges Museum of American Art in Bentonville and Arkansas Children’s. Their investment of $2 million supported construction of the first floor in the South Wing at ACH, added in 2012. MANDY MACKE Mandy was a key player in the foundation’s $8 million gift to open Arkansas Children’s Northwest (ACNW) in Springdale in January 2018. In honor of the Walker Foundation’s generous gift, the Beacon of Hope at ACNW was named in Pat’s honor. The Pat Walker Beacon of Hope is a colorfully lit stairwell that serves each of the four floors of the hospital and can be seen from Interstate 49 in Springdale, lighting the way to ACNW for families needing expert pediatric care for their child. In addition to the Beacon of Hope, the Willard Walker Helipad and the third floor at ACNW celebrate the Walker family and the Walker Foundation’s investment in children’s health.
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• CHAMPIONS • BETTER TODAY. HEALTHIER TOMORROW.
Expansion of hematology/ oncology services at Arkansas Children’s Northwest includes central monitoring in the inpatient unit for patients who need a higher level of care.
“Pat would be very proud of the effort to reach more children in more ways,” says Mandy. “We were delighted to continue our investment in a healthier tomorrow for all children throughout Arkansas.” WILLARD & PAT Mandy’s commitment to WALKER changing children’s health in the Northwest Arkansas region goes beyond her work through the Walker Foundation. She’s thrown her heart and soul into making a difference for kids through her service on the Arkansas Children’s Foundation Board of Directors, which she joined in 2016. And this year, Mandy made the decision to Go Gold for pediatric cancer. She enthusiastically took on the monumental task of chairing the 12th annual Color of Hope Gala, which was held Friday, August 2, at the John Q. Hammons Center in Rogers. The more than 1,500 Color of Hope Gala attendees dressed in their best gold attire. The color gold is worn in solidarity around the country during the month of September to raise awareness for pediatric cancer and treatment. Pediatric cancer is the leading cause of death by disease in children ages 0–14. Yet less than four percent of funding by the federal government is designated to pediatric cancer research. In anticipation of September’s Pediatric Cancer Awareness Month, this year’s combined event—
Will Golf 4 Kids Tournament and Color of Hope Gala—raised a recordbreaking $2.1 million to expand pediatric cancer care at ACNW. The funds support the addition of a pediatric oncologist, nurses and support team members for the hematology/oncology program, plus the addition of central monitoring systems to the inpatient unit. ACNW’s pharmacology services will also expand through the investment, allowing the team to prepare more complex treatments and keep children close to home throughout their cancer care. “We need to increase services and programs for our local families facing such a serious diagnosis,” says Mandy. “There’s something special about committing time to promoting an organization that has such an important mission—taking care of children.” Mandy doesn’t have children of her own, but that doesn’t stop her from being an outspoken advocate for providing right-sized, compassionate care for children and families in Northwest Arkansas. “I’m proud to be a champion of children and join so many of our community members in making sure local children have continued access to healthcare close to home, working for a healthier tomorrow.” Photo of Mandy Macke provided by Celebrate Arkansas and quotes from Mandy Macke provided by 3W Magazine.
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Your Gift Gives Kids a Healthier Tomorrow "Thanks to donors who support Arkansas Children’s, the little details are taken care of so we can focus on the big details. I don’t always get physical rest, but I have peace of mind.” — Carmilya Wilson, grateful parent
BE A CHAMPION FOR CHILDREN You can help children like Mia have a healthier tomorrow. A gift of $25, $50, $100 or more to Arkansas Children’s makes a huge difference in the life of a child.
PLEASE GIVE GENEROUSLY!
To give a one-time gift or become a monthly Miracle Maker, use the enclosed envelope, visit giving.archildrens.org or call (800) 880-7491.