Care that Comforts Giving Deliberately Jeffrey Hanson Gifts Children’s Mercy Hospital with New Artwork treasures Fall 2013 | FOR SUPPORTERS OF CHILDREN’S MERCY One week after Betsy’s kidney transplant, her brother presented Besty and Molly with t-shirts. Molly’s reads: “I gave my little sister a kidney and all I got was this t-shirt” and Betsy’s reads: My big sis gave me a kidney and all I gave her was this t-shirt.” Care that Comforts T hey thought Betsy was just worn out. She’d been so busy with theater and drama her mother, Elizabeth Wendorff, thought she was extra tired. Sadly, the truth was more dangerous than mere fatigue. “When her ankles and face began to swell, I knew something was really wrong,” Elizabeth shares. Betsy was just 13 years old and experiencing kidney failure. “I didn't even know what the word ‘nephrology’ meant,” jokes Elizabeth. She can be lighthearted today. Since that time five years ago, Betsy has received a kidney transplant and will leave for Nebraska Wesleyan in Lincoln, Nebr., this fall. But when she was in middle school and on dialysis, it was no laughing matter. “We had no history of kidney disease in our family,” shares Elizabeth. “We found out the cause of Betsy's kidney problems was an autoimmune disease called microscopic polyangiitis. Before she could receive a transplant, the doctors had to control the microscopic polyangiitis so it wouldn't destroy the new kidney.” For four months, Betsy received hemodialysis onsite at Children's Mercy, followed by 11 months of home dialysis administered by her parents. She was on a regimen of steroids and other drugs to control the microscopic polyangiitis. In that time, Elizabeth and her husband, John, were impressed by the care Betsy received at Children's Mercy. “We are so blessed to have Children's Mercy in Kansas City,” she says. “The dialysis unit nurses were a godsend and Betsy had a whole team of specialists to make sure she wasn't afraid of what was going on and to help her deal with her concerns about school, her future and her friends.” Betsy appreciates the time her doctors spent explaining everything that was going on with her. “They explained each step and every option we had open to us,” she says. “It made making decisions a lot easier.” When Betsy was strong enough for the transplant, both her parents and her sister, Molly, were tested to find out who would be the best donor. While Elizabeth had a compatibility score of 4/6 and Molly’s was 3/6, Dr. Brad Warady, Betsy’s physician, had to go with youth in this case. “They wanted a younger kidney and that was Molly,” says Elizabeth. Molly was married with a two-year old at the time. Since donating a kidney to her sister, she's gone on to have two more children. As for Betsy, Children’s Mercy was there to help her make another big transition in her life. College. She attended kidney clinics where she learned how to take care of her diet, medications and generally begin to manage everything on her own. Since she'll be on medication for the rest of her life, this was a critical step in Betsy’s care. “She calls in her own refills and will take care of her monthly labs while she's at school,” says Elizabeth. “Children's Mercy worked with her college to make sure everything went smoothly. In nephrology, the kids stay with Children's Mercy until they’re 21 years old, so we're grateful for that.” Elizabeth says there's something special, something different, about Children's Mercy than other hospitals. “There's a level of TLC that you don't get everywhere else,” she explains. “They're committed to making sure you get the answers you need, and they want to give you feedback.” Betsy and Molly a few weeks before Betsy left for her freshman year of college in Nebraska. colleague in London so Betsy would have someone to call in case of an emergency. The Wendorffs plan to get more involved at Children's Mercy by volunteering in some of the programs that meant so much to them while Betsy was there. “There's no more worthy cause to support than caring for children,” says Elizabeth. The Division of Pediatric Nephrology provides the highest quality of care with compassion to children with kidney and urinary tract disorders and advances their well being by promoting education and research. Our care and research has helped us earn recognition as one of the top six nephrology programs in the nation by U.S. News and World Reports. The multidisciplinary team of specialists offers a comprehensive, individualized approach to care based on the latest developments in this field of medicine. Along with seven pediatric nephrologists, the team also includes nurses, dietitians, social workers, psychologists, pharmacists, child life specialists and nephrology fellows, all of whom are among the best in their field and who work closely with colleagues in transplant surgery, urology and interventional radiology. We are leading the largest pediatric nephrology research study ever conducted in North America. Our 1-year and 3-year pediatric kidney transplant graft survival rates are significantly above the national average and consistently rank among the highest in the country. “Knowing Betsy is in the care of such an outstanding team makes me more comfortable.” Betsy's team even helped her prepare for the graduation trip she took to the UK. When she visited Ireland, Scotland, Wales and England, Dr. Warady shared the name of a treasures fall 2013 | 3 I Giving Deliberately Ethan Briggs “ just can't say enough good things about Children's Mercy,” says Kathy Briggs. Her daughter, Elayna, and son, Ethan, both received care at the hospital. Elayna was followed for a hole in her heart she was born with, which fortunately never caused her any problems. It was Ethan's issues with Crohn's disease that really solidified the Briggs family's relationship with Children's Mercy. When Ethan was in the 9th grade, he began experiencing symptoms associated with Crohn's an inflammatory bowel disease. He started taking medication to control flare ups and manage his condition, and had surgery to address an abscess while a senior in high school. “Dr. William San Pablo and Ellen Carpenter were just wonderful,” shares Kathy. “They stuck with us through everything and went above and beyond.“ The “everything” Kathy describes began when Ethan decided he wanted to go away for college. A plan she admittedly wasn't very keen on at the outset. Ethan went away to Baylor in Waco, Texas, as a freshman, and Kathy's worst fears were realized. He was hospitalized three times within the first year. “I finally just had to bring him home,” says Kathy. “By that time he was over 18, I didn't know if Children's Mercy would see him, but I needn't have worried. “I called and told them about his condition,” she continues. “They were so compassionate and told me I 'had a history there.' “The doctors called ahead to the emergency room and told me to bring him in.” Ethan was admitted in April and remained at Children's Mercy for nearly a month. “By the time he came home from school in Texas, he was down to around 100 pounds,” Kathy says. “That's extremely underweight for a young man nearly six feet tall.” While at Children's Mercy, Ethan received Total Parenteral Nutrition therapy – a way of supplying nutritional needs of the body while bypassing the digestive system – and gained his weight back. Incredibly, one of the Gastorenterology doctors had been on staff at a hospital in Temple, Texas. He told Kathy about this hospital just 30 miles from Baylor with a more advanced GI care level. The doctor said Ethan could go there when he went back to school … which he did in the fall. Giving Deliberately As part of her personal credo of “living what she believes,” Kathy began going on mission trips to Mexico in 2010. “I'm very involved in my church,” Kathy explains. “These trips took us to some very poor areas in the suburbs of Juarez. At the time of my first trip there were concerns about the safety of being in Juarez,” she says. “I began thinking of my own mortality and doing some very thoughtprovoking reading.” “I decided that I wanted to give deliberately. To give while I'm still alive and be very conscious of where my assets are going.” Kathy also decided she wanted to “bless and help people who had blessed and helped her family.” Children's Mercy was among the organizations she chose to support. Kathy has designated the hospital as a charitable beneficiary of her IRA. “One of my favorite professors once likened our lives to a pebble thrown into a pond whose waves circle out touching others until they eventually touch the shore,” Kathy says. “By giving to Children's Mercy I am casting my pebble out so that it will result in waves of blessings that will spread and touch families' lives through Children's Mercy.” Today, Ethan is just six hours short of completing his degree in Business. He's specializing in Management of Information Systems. Kathy takes great satisfaction in knowing her gift to Children's Mercy will help children and families who are in the same situation her family was in not so long ago. Kathy Briggs was inspired by Randy Alcorn's book "Money, Possessions and Eternity". “It really is paying it forward,” she says. “So many people helped me, and I want to be in that chain of caring and compassion.” “And you don't have to be a millionaire to make a difference,” Kathy says. “That's why the IRA option makes sense for me. It allows me to be responsible — and very deliberate — about where my contributions will go.” The Inflammatory Bowel Disease Team Clinic provides comprehensive health care for children and adolescents with IBD, namely Crohn's Disease and Ulcerative Colitis, in a family-centered environment that recognizes the physical, emotional, behavioral, financial, and social needs of patients and families. Children receive the most individualized level of care, and have a team of providers who are dedicated fully to making sure children receive the best care possible. Patients and families have access to resources to help in the management of IBD. The team provides guidance for transition of patient care from adolescence to adulthood. Our patients also have access to ImproveCareNow, a partnership between more than 30 pediatric gastroenterology centers. For more information, phone (816) 234-3708. treasures fall 2013 | 5 Don't Miss Your Chance: Make Tax-Free Gifts From Your IRA Today! Jettie and James Clemens presented a $1.8 million check from the estate of Jettie’s great-aunt, Eliza Evans Monk, to executive vice presidents Jo Stueve and Dr. Charles Roberts. Mrs. Monk’s unrestricted bequest reflected her strong sense of responsibility to care for others, and she knew that for families with sick or injured children, her gift would make a difference. The IRA charitable rollover legislation allows you to transfer lifetime gifts up to $100,000 using funds from your individual retirement account (IRA) without undesirable tax effects. See how your generosity can make an impact on our children and their families today! You may contribute funds this way if: • You are age 70½ or older at the time of the gift. • You transfer up to $100,000 directly from your IRA. This opportunity applies only to IRAs and not other types of retirement plans. • You transfer the funds outright to one or more qualified charities. The legislation does not permit direct transfers to charitable trusts, donor advised funds, charitable gift annuities or supporting organizations. • You make your gift by Dec. 31, 2013. Generous Gifts of a Lifetime Learn more and receive a complimentary free e-brochure at www.childrensmercy.org/plannedgiving or call (816) 346-1300. The family of Leonard B. and H. Kathleen Wade joined Dr. Charles Roberts at the dedication of the physical therapy/ occupational therapy clinic at Children’s Mercy Northland that bears their name. The Wades were inspired to make a significant bequest because of the care their great-niece RayAnn Borjas received at Children’s Mercy. With RayAnn are her mother, Robyn Borjas, and her grandparents, Carol and Clifford Wade. The Wades believe wholeheartedly in families helping families. Jeffrey Hanson with Dr. Randall L. O'Donnell, President and CEO, Children's Mercy, and his parents, Hal and Julie Hanson in front of Summer Vacation in the Hematology/Oncology Clinic. Jeffrey Hanson Gifts Children’s Mercy with New Artwork U pon first meeting Jeffrey Hanson, you notice his kind smile. You feel at ease in his calm presence. But underneath that composure lies a talented artist who floods his canvases with bold colors and textures to support the philanthropic missions about which he’s so passionate … the unrelenting wit who named the brain tumor slowly robbing him of his vision “CLOD.” Jeffrey is the kind of guy who showed up for his radiation treatment in a tuxedo. He refuses to let challenges get him down. Dr. O'Donnell and Jeffrey pictured in front of Playground in Provence. Before Jeffrey and his family begin discussing the original paintings he completed for the board room at Children’s Mercy and the oncology clinic, they reminisce about the care he received here when he was younger. Every three months for ten years, he received MRIs to monitor “CLOD”—the name he gave to the optic nerve tumor associated with a genetic condition called Neurofibromatosis. Jeffrey was diagnosed at six years old. From 2005 to 2006, he received radiation and chemotherapy treatments because the tumor was causing severe vision loss. treasures fall 2013 | 7 It was during that time Jeffrey began painting the note cards that would segue into his larger works and selling them in his driveway to raise money for charity. From the very beginning, Jeffrey has included Children’s Mercy in his philanthropic efforts. “When you bring your child to Children’s Mercy, you don’t have a happy story,” says Jeffrey’s mother, Julie Hanson. “You’re so frightened and so scared, but they make you feel like it’s going to be ok. There’s no better place to bring your child.” Jeffrey’s father, Hal Hanson, continues, “This could be any hospital, but it’s the people and the attitude of everyone here that makes it so special. And what a blessing to have this wonderful place right at our back door.” Jeffrey agrees, and says he hopes the art he’s generously donated to Children’s Mercy helps create an atmosphere that’s welcoming and hopeful. “It makes me really happy to know that kids will feel like they’re in a safe, friendly environment,” he explains. In 2009, Jeffrey’s Generous HeART Show helped raise funds for the construction of the Lisa Barth Chapel. Today, at 19 years old, Jeffrey has a reputation, not only as a talented artist, but a most generous philanthropic leader. Through direct contributions and the paintings he’s donated and auctioned for charity, Jeffrey will have generated an incredible $1 million in philanthropic support by his 20th birthday in September 2013. The new paintings he’s completed for the hospital embody Jeffrey’s pioneering style—bold, explosive color and intense texture. The painting in the hospital’s board room is titled “Playground in Provence.” Jeffrey created it specifically to blend with the blues and greens already prominent in the room. “Summer Vacation,” which is an installation of 30 smaller individual canvases in the oncology department, each individually signed by Jeffrey, is more playful. “Jeffrey had free rein on that one,” his father notes with pride. The Hanson family hopes that everyone who sees the paintings feels the welcoming and loving spirit that is so alive at Children’s Mercy. They also hope the works and Jeffrey’s story inspire others to become part of the culture of giving that sustains the hospital and its important work in Kansas City. “We’re so proud to be part of the giving circle that is created by the people of Kansas City,” Julie says. “There is such joy in giving back.” As the conversation drifts back to the paintings, Jeff’s father explains how Dr. Randall O’Donnell, CEO of Children’s Mercy Hospital, requested specific colors to blend with the décor of the board room. As he speaks, a wry smile begins to spread across Jeffrey’s face. “Well, the painting isn’t finished till the purple goes on,” Jeffrey says, proving that the artist will always have the final word. Read more about Jeffrey’s story in his new book, Lessons From CLOD: An Inspiring Story of Art, Philanthropy and Entrepreneurship. Available at amazon.com. The Division of Pediatric Hematology, Oncology and Bone Marrow Transplantation provides comprehensive care each year to nearly 2,000 children with childhood cancers, sickle cell disease, hemophilia and other blood disorders. Our unique case management system pairs each of our more than 20 board-certified physicians with an advanced practice nurse or physician assistant and a social worker to provide comprehensive care to our patients and families. At any given time we are participating in 80-100 research trials, including those from the Children’s Oncology Group and the Pediatric Oncology Experimental Therapeutics Investigators Consortium. Our survival rates are frequently above national averages. In 2012, we once again received accreditation from American College of Surgeons Commission on Cancer, a recognition of hospitals that meet the highest standards for cancer care. For more information, phone (816) 234-3265. Access to Happy, Healthy Childhoods Because of You The last 20 years have been a time of remarkable growth at Children’s Mercy. Admissions have more than doubled, surgical procedures have tripled, and outpatient visits have surged 177 percent. We see this rapidly growing need for our care as a challenge and an opportunity. As the largest safety-net provider of pediatric care in Kansas City, we want to offer access to all the children of our region—to be there when and where they need us. And so, beginning in 2007, we asked our devoted friends to embark on an expansion unprecedented in our 115-year history. You answered the call with equally unprecedented generosity. Children’s Mercy’s Healthier Ever After campaign has raised $161 million dollars. Thank you! The more you give the more good we can do, and together we have accomplished a great deal: • In October 2012 Children’s Mercy East opened, a new 55,000-square-foot facility complete with Urgent Care Center in Independence, Mo. Since opening, this location has seen more than 20,000 visits! Children’s Mercy East completes our “circle of care” around the Kansas City metropolitan area, leaving no part of the region underserved. • On December 12, 2012 leading annual donors and major campaign contributors came together to dedicate the Elizabeth Ann Hall Tower. The tower will improve emergency room wait times and surgery room scheduling; aid at-risk babies in need of immediate care after delivery; and offer more space, services and amenities for families who call our hospital home for days, weeks and even months. • On April 29, 2013, dear friends, family and donors gathered to dedicate the Lisa Barth Chapel, a space where all are welcome. This space has rapidly become a quiet refuge for patients, families and staff. Visitors are welcome to mediate, pray and reflect in the chapel or enjoy the peaceful Nancy Nutter Moore Garden. • In January 2013, we dedicated our Children’s Mercy Wichita Specialty Clinics space on the campus of Wesley Medical Center. The clinic offers top-rated care in endocrinology/diabetes, nephrology, and via an innovative telemedicine approach, pediatric allergies. Together, we’ve done all this while remaining accessible to our region’s children whatever their economic circumstances, providing more and more care without payment. Nothing feels better than helping your neighbors and your community. All of this, and much more has been made possible because of you and your support of the Healthier Ever After Campaign. We are grateful to you! Children's Mercy donors and dignitaries at the dedication of Children's Mercy East. treasures fall 2013 | 9 Donors Were on Fire for Red Hot Night This past February 2, generous donors contributed more than $1 million to support Children’s Mercy at the annual Red Hot Night Gala, hosted by the Hands and Hearts for Children Auxiliary and attended by about 1,350 guests at the Kansas City Convention Center Grand Ballroom. Guests were treated to an evening of cocktails, gourmet dinner, exciting live auction and dancing to live entertainment by The Party Crashers. The success of Red Hot Night and our mission depends on amazing donors and volunteers like this past year’s Event Co-Chairs Joe Gregg and Tracy Brennan, and Honorary CoChairs Pat and Beth McCown and Dave and Beth Fowler. Thank you! Proceeds from this year’s event benefitted Children’s Mercy Hospitals and Clinics’ mission to provide access to care for all children. It was a fantastic evening thanks to you and we hope you’ll join us next year on February 8, 2014. For more information, visit www.redhotnight.org. 2013 Red Hot Night Leadership: Honorary Co-Chairs Dave and Beth Fowler, Event Co-Chairs Joe Gregg and Tracy Brennan, Honorary Co-Chairs Beth and Pat McCown Photo by Nikki Griffith (Front row) Laura Twyman, Ellen Murphy, Kristin Malfer, and Amber Brown (back row) LeAnn Reid and Jami Howe Photo by Nikki Griffith treasures fall 2013 | 10 Thanks to You, Big Slick was a Big Deal Celebrity hosts Jason Sudeikis, Rob Riggle and Paul Rudd with Children’s Mercy oncology patient Braysen Butter before Braysen threw out the opening pitch of the Big Slick Celebrity Wiffle Ball Game. Photo by Jon McKee We have a saying at Children’s Mercy, “kids come first” and we will do almost anything for our kids including being on stage and spoofed by three of the most talented and hilarious comedians in the country. Rob Riggle, Paul Rudd and Jason Sudeikis (and a slew of their celebrity pals) were back in town for the 4th Annual Big Slick Celebrity Weekend to glove, gamble and give! And what a weekend it was, raising $625,000; it truly was a big deal! Our homegrown talent shined the spotlight on Children’s Mercy, visiting patients and families, playing games, and raising money, never taking focus off the real celebrities, our kids. Big Slick Co-Chairs and celebrity hosts: Mark and Julie McKee, Rob Riggle, Paul Rudd, Gloria Rudd, Kathy Sudeikis, Jason Sudeikis, Dan Sudeikis. Photo by Julie Green Kudos Fall 2013 The spring opening of Children’s Mercy newest regional center in Wichita, Kansas, was celebrated on June 7 at the beautiful Wichita home of Priscilla and Gerry O'Shaughnessy. The reception was hosted by the O'Shaughnessys, along with Paula and Barry Downing also of Wichita and Mindy and John Sutherland of Andover, Kansas. Above: Chapman Hodges, 7 years old, and his friends organized “The Chap Band’s Fundraiser Yard Sale” and raised more than $500 to purchase toys for the patients and families at Children’s Mercy. Below: DEMDACO employees with two child life staff members before the "sale" DEMDACO hosted. DEMDACO donated product for our kiddos to "buy" for Christmas presents. It was a fantastic event where the kids could shop for what they wanted and pay with the play money. The kids then got to wrap the presents and make cards. Above: Dr. Charlie Roberts with Priscilla and Gerry O'Shaughnessy Below: John and Mindy Sutherland Below: Employees from Ferrell Capital took time out of their day to provide and serve lunch to families at Children’s Mercy. Above: Held in March, the Third Annual Alexander James Beverly Texas Hold-Em Tournament raised $5,000 for critical care services at Children’s Mercy. Below: The KC Century Bike Ride rolled through Kansas City and by Children’s Mercy for the first time this year, raising funds to support pediatric cancer research at Children’s Mercy. Above: The Annual Dominic L. Passantino Memorial Golf Tournament on June 9 welcomed more than 250 participants to the golf course and raised more than $40,000 for the Burn and Trauma Unit at Children’s Mercy. treasures fall 2013 | 13 KudosContinued Below: 260 medals from Burns & McDonnell employees were donated to Child Life to help patients celebrate milestones in treatment. Below: Vickie and David Garrett along with Janet Abbey worked with Chillicothe Middle School students to collect more than 1,000 boxes of markers and crayons to donate to Children’s Mercy Above: Susan Lordi (Willow artist) did a rare signing event for Naomi’s Hallmark. A portion of the proceeds from the sales of Willow during this time are designated to Children’s Mercy. Susan was instrumental in the selection of the art for the Lisa Barth Chapel. Willow is distributed by DEMDACO, another awesome donor to Children’s Mercy. Below: Kristin Malfer and Associates of Reece Nichols made a generous commitment to give a portion of each home sale back to Children’s Mercy. The team came out to Children’s Mercy South to see their recognition plaque, located in the entertainment corner of the Tom Watson Emergency Department. Below: Hoops 4 Hope is a basketball tournament that benefits our Oncology Department. Held on November 9-11, 2012 at Blue Valley Southwest and organized completely by students and Dr. Chris Jenson, the tournament raised $3,750. Above: Choice Solutions owner and CEO, Jim Steinlage, and his wife Janice, along with Choice employees, volunteered for a Wednesday Night Live session with patients. Choice Solutions holds an annual golf tournament and the mulligan proceeds generously support the Child Life Department. They raised 45% more this year than last year! Below: Representing Children’s Mercy Planned Giving Council, John Keech, Mark Vlasic and Jim Cole present $10,675 raised from their annual appeal to Melissa Pulis, assistant director for Child Life, for the Clothing Room which provides clothing to patients and families in need. Above: Jay and Marianne Rohde presented a check for $112,500, the generous first time gift from The Pat and Gil Clements Foundation to Dr. Stephen Kingsmore and Dr. Sarah Soden to support the STAT-Seq equipment upgrade for the nationally recognized Center for Pediatric Genomic Medicine. treasures fall 2013 | 15 Editor’s Note: Treasures is a publication for individuals who donate time or money to Children’s Mercy. Please forward announcements, ideas for articles or other information in writing to Children’s Mercy, Resource Development, 2401 Gillham Road, Kansas City, MO, 64108. Include your name, address and telephone number. The editor may alter submissions for clarity, length and style. Children’s Mercy is an equal opportunity/affirmative action employer and a United Way agency. If you would like to make a gift to the hospital or want more information, call Resource Development at (816) 346-1300. Community Partner Non-Profit Org. U.S. Postage PAID Kansas City, MO Permit #4301 RED HOT NIGHT SAVE THE DATE Saturday, February 8, 2014 Honorary Co-chairs Dave and Mikel Flickinger and Kevin and Stacie Needham www.redhotnight.org
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