2011-2012 Haslinger Family Pediatric Palliative Care Center Report to the Community Inside Director’s Letter to the Community ........................................................... 3 A Palette of Care..................................................................................... 4 2011-2012 Clinical Activity ...................................................................... 5 Awards and Recognition .......................................................................... 7 Milestones .............................................................................................. 8 We received a beautiful letter Meet Logan .......................................................................................... 10 from one of our parents Programs ............................................................................................. 12 describing how much our palliative care team meant Volunteers ............................................................................................ 14 to her and her family. She Meet the Kneppers ................................................................................ 16 addressed the letter to “The Palette of Care Team.” In that phrase, she described so well what we strive to be – a transdisciplinary collection of colors that blends together on a Education ............................................................................................. 17 Meet Lucas ........................................................................................... 22 Special Projects .................................................................................... 23 Financial Support .................................................................................. 24 canvas to paint the best picture of care for all of our families. Each painting is unique, created by our patients who hold the brush. The artwork used here is one child’s vision of “the palette of care team” in her life – 11-year-old Cassidy Jackson. Find us on Facebook, twitter and Pinterest The Haslinger Family Pediatric Palliative Care Center has a Facebook page featuring center updates and events, and links to articles, websites and discussion groups on bereavement, chronic illness and more. We would love to connect with more of you. Visit us at facebook.com/haslingerpalliativecare. For more updates, you can also follow us on twitter at twitter.com@haslingerppc or on Pinterest at pinterest.com/haslingerppc. 2 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Director’s Letter to the Community This year, the Haslinger Family Pediatric Palliative Care Center’s Report to the Community captures activities from 2011 and 2012, years in which a recurring theme seems to be “innovation.” We are always striving to find innovative ways to provide better care to our patients and families as they face life-threatening conditions. While that remains our primary goal, we also appreciate when our efforts receive national recognition – furthering another goal to “spread the word” about the incredible benefits of pediatric palliative care for children of all ages and their families. We hope to set an example that educates and inspires pediatric palliative care programs to go above and beyond in the care they provide, and to discover their own innovations. Our program is continuing to grow through funding from the Center for Medicare and Medicaid Innovation. In partnership with Nationwide Children’s Hospital, we are part of a three-pronged pilot effort to examine models of care delivery that further the “triple aim” of healthcare: improved quality, reduced cost and improved health. We are focusing on care coordination for children with complex medical conditions as we streamline communication, resources and community-based support to provide better, more cost-effective care where families prefer – in their own homes and communities. Some other highlights include: • In 2011, we established the first endowed chair position in pediatric palliative care, which was named in my honor. I am incredibly appreciative of this recognition, but it would not have been possible without the entire palliative care team and our generous donors. • In 2012, we were honored to receive the Circle of Life Award from the American Hospital Association, a national award that recognizes innovations in palliative and end-of-life care. • The Haslinger Center turned 10 in 2012 – a tremendous milestone. We have been privileged to serve more than 1,600 patients during this time, making us one of the largest pediatric palliative care programs in the country. In honor of our anniversary, many volunteers and staff worked hard to plan a party at the Akron Civic Theatre, which featured great food and a lip-synching contest, with the proceeds from the voting benefiting our center. Generous voters and sponsors made our celebration a very successful fundraiser and contributed to some very special memories and YouTube moments. A heartfelt “thank you” to everyone who helped or attended. We hope you will celebrate future milestones with us. We hope you will enjoy reading about these and other innovative activities of the Haslinger Center. As always, we’d love to hear from you if you’re interested in learning more about our program, would like to make a donation or volunteer, or know a family that might benefit from our services. Thank you for your continued support of the Haslinger Family Pediatric Palliative Care Center and Akron Children’s Hospital. Blessings, Sarah Friebert, MD Director, A Palette of Care Haslinger Family Pediatric Palliative Care Center 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 3 A Palette of Care Haslinger Family Pediatric Palliative Care Center The Akron Children’s Hospital Haslinger Family Pediatric Palliative Care Center serves children, from before birth and into adulthood, who have complex, chronic or serious medical conditions. Pediatric palliative care provides an additional layer of support for families on difficult medical journeys, in partnership with cure-directed care. Our nationally recognized palliative care team works in collaboration with a child’s other healthcare providers to coordinate care and improve communication, as well as to help families make informed choices regarding difficult medical decisions. Palliative care patients receive comprehensive, interdisciplinary care to control pain and other symptoms. Support is also provided for emotional, psychological, practical, spiritual, educational and developmental issues which may contribute to suffering or interfere with healing. Our care is customized for each patient, allowing each family to choose from a variety of programs and services that will best meet their needs. Our Mission • To integrate legendary, indispensible and individualized pediatric palliative care into the journey for all children, adults and their families living with chronic, complex and/or life-threatening conditions of childhood. • To provide leadership in education, research and advocacy initiatives in pediatric palliative care locally, regionally, nationally and internationally. Carsen Hays 4 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 2011-2012 Clinical Activity New Families Served and Patient Consults – 2002 - 2012 New Families Served Patient Consults 500 400 300 200 100 0 2002 2003 2005 2004 2006 2007 2008 2009 2010 2011 2012 Total families served - 1,659 Total patient consults - 2,683 46 Counties Served – 2002 - 2012 Patient Gender 2011 2012 Ashtabula Lake Fulton Male 60.7% 58.7% Female 39.3% 41.3% Geauga Wood Sandusky Cuyahoga Erie Lorain Trumbull Medina Ashland Richland Van Wert Wayne Holmes Knox 2011 Delaware Coshocton Franklin Muskingum Shelby Neurologic/Neurodegenerative 22.6% 16.3% Hematologic/Oncologic 15.5% 20.4% Sudden/Burn 12.6% 12.4% 7.1% 10% Harrison Guernsey Belmont Monroe Athens Clermont Complex/Chronic 7.5% Carroll Washington 9.6% 14.9% 11.3% Columbiana Perry Butler Genetic/Chromosomal Stark 2012 Miami Cardiologic Mahoning Tuscarawas Marion Top 6 Patient Diagnoses Portage Summit Huron Pike Other States Served Florida Maryland Georgia Nebraska Indiana New Hampshire Pennsylvania West Virginia 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 5 2011-2012 Clinical Activity Types of Insurance – 2011 Types of Insurance – 2012 Medicare - 2.5% Medicare - 2.5% Unknown - .8% Bureau for Children with Medical Handicaps (BCMH) - .8% None/Self Pay - 2.5% Private - 32.2% None/Self Pay - 5% Unknown - 5% Bureau for Children with Medical Handicaps (BCMH) .5% Medicaid/ Medicaid HMO 61.2% Private - 32.3% Medicaid/ Medicaid HMO 54.7% Patient Age – 2011 > 20 yrs. - 6.3% 16-20 yrs. - 14.2% Patient Age – 2012 > 20 yrs. - 6% 16-20 yrs. - 10% < 1 yr. - 54% 11-15 yrs. 9.2% 1-10 yrs. - 16.3% 6 < 1 yr. - 50.7% 11-15 yrs. 9.4% 1-10 yrs. - 23.9% 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Awards and Recognition National Healthcare Innovation Through a three-year award from the Center for Medicare and Medicaid Innovation (CMMI), the Haslinger Center has been able to develop a case management team consisting of social workers, registered nurses and a dietitian. This team is making home visits and coordinating the care of children with neurological diagnoses and gastrostomy tubes (g-tubes) for feeding. Our overarching goal is to improve the quality of life and health system satisfaction for patients with complex medical needs. The specific aims being measured include decreasing mean hospital days for children receiving tube feedings, providing comprehensive care coordination for children with a neurological diagnosis and g-tube, and improving nutritional status of this population so they fall within a healthy range for weight on a standard growth chart. Todd Linden, president and CEO of Grinnell Regional Medical Center, presents Sarah Friebert, MD, founder and director of the Haslinger Center, with the Circle of Life Award. Circle of Life Award In 2012, the Haslinger Center was honored to receive the Circle of Life Award from the American Hospital Association (AHA). The award recognizes innovative programs in palliative and end-of-life care. After submitting a lengthy application highlighting our program’s services, research and other aspects, we were chosen as one of nine finalists. We then hosted a day-long site visit for representatives of the Circle of Life selection committee. We were invited to accept the award at the American Hospital Association Annual Meeting in San Francisco. Sarah Friebert, director of the Haslinger Center, Lisa Long, office coordinator for the Haslinger Center, and Norm Christopher, Akron Children’s chair of Pediatrics, traveled to San Francisco to attend the award ceremony and other AHA events. Tyler Esposito 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 7 Milestones Endowed Chair Established The Sarah Elizabeth Friebert, MD Leadership Chair in Pediatric Palliative Care, named in honor of the founder and director of the Haslinger Center, was officially established in 2011 to support the advancement of patient care, research and education. A celebration reception was held in May 2011 for donors, volunteers and staff to recognize its establishment as the first pediatric palliative care endowed chair position in the country. Haslinger Center Celebrates 10 Years of Serving Patients The Haslinger Family Pediatric Palliative Care Center turned 10 in 2012! A huge celebration was held at the Akron Civic Theatre in honor of our birthday. Todd Meany from Fox 8 Cleveland emceed the event and his band Ace Molar performed. The highlight of the night was a lip-synching contest, which featured acts by many local personalities, including the palliative care team performing “Car Wash” and Dr. Sarah Friebert performing dressed as Tina Turner. Guests could vote that night by making a donation for their favorite act, in addition to voting online before the event. Generous sponsors and donors helped make the celebration a successful fundraiser as well. Guests enjoyed visiting with Akron Children’s Doggie Brigade, and delicious food and desserts from Totally Cooked Catering and the West Side Bakery. Thank you to everyone who helped with or attended the celebration, and everyone who has supported us the last 10 years. We appreciate everything you do and look forward to many more years of serving our patients and families. Haslinger Center Timeline 2002200320072008 Dr. Sarah Friebert founded the Haslinger Family Pediatric Palliative Care Center. The center received an endowment commitment from the Haslinger family. 8 The center created a pediatric palliative care fellowship program to further its commitment to education and training, and to this day, it’s one of only a handful in the country. The center hosted a national pediatric palliative care conference in Akron, attracting 480 participants from 30 states. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY The center was chosen to be one of two Pediatric Palliative Care Leadership Center training sites by the Center to Advance Palliative Care. The Children’s Garden of Hope & Healing is completed. Abigail Myers 200920112012 Dr. Friebert was honored with the Children’s Miracle Network “Children’s Miracle Achievement Award” for her transformational work. The center received ACGME accreditation for its palliative care fellowship. Akron Children’s received a $1.2 million donation to create an endowed chair in pediatric palliative care, believed to be the first of its kind in the country. The center is honored with the Circle of Life Award from the American Hospital Association. The Emily Cooper Welty Expressive Therapy Center opened. It’s the region’s only dedicated expressive therapy facility designed for patients, families, staff and the community. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 9 Laura and Logan Keith. Meet Logan Three-year-old Logan Keith of Akron continues to amaze his doctors and family with his miraculous recovery from a devastating brain injury. “Medically, they can’t explain his recovery. His doctors didn’t expect him to live,” said Logan’s mom, Laura, noting that her son’s pupils were fully dilated for seven days while his intracranial pressure remained dangerously high. Not only has Logan survived, he continues to thrive more than one year later. Shortly after he was admitted to Akron Children’s, Logan underwent an emergency craniotomy to insert a VP shunt to relieve the swelling and fluid that was building in his brain. He spent the next three months at Akron Children’s, including two months in the Pediatric Intensive Care 10 Unit (PICU). After that, he spent two more months in an inpatient rehabilitation facility, followed by intensive rehabilitation five days a week in Akron Children’s Day Rehabilitation program. Through this program, Logan received all-day therapy for two months, but would return to his home every evening to be with his family, which also includes his 13-year-old sister, Lauren. Through it all, Laura relied on her faith and the support she received from the staff in the Haslinger Family Pediatric Palliative Care Center. “I prayed a lot and just put it on God,” she said. One of the first staff members she met from the Haslinger Center was social worker, Denise Powers Fabian, who was not only a great source of comfort, but also helped Laura with practical issues, such as 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY applying for a leave of absence from her job so she could stay near her son. “Denise was awesome and really helped me get through what was an emotionally overwhelming and difficult time,” said Laura. A child life specialist from the center helped Lauren understand what was going on with her baby brother, in terms she could understand. At this point, Laura also met the center’s palliative care physicians who were part of Logan’s care team in the PICU. They helped Laura make difficult medical decisions regarding his care and made sure her concerns were addressed. The staff in the Haslinger Center also continues to assist the Keith family with these ongoing needs, including coordinating Logan’s medical care and helping Laura identify other resources that are available for her son. When the Keiths were living in a two-bedroom apartment, Denise, the social worker, helped Laura find a nice home for her family. “They’ve been there to help me every step of the way, especially when I didn’t know where to turn,” Laura said. Although Logan’s condition improved, his prognosis still remained grim. “He was expected to have major disabilities and we weren’t sure if he’d ever be able to walk or talk again, or even be able to breathe on his own,” said Laura. Once again, Logan defied the odds. He continues to receive outpatient physical therapy at Akron Children’s once a week. He’s able to walk, although he has some muscle stiffness that affects his gait. He now attends an integrated preschool with other children who have special needs, along with those whose development is on track. Since Logan has begun attending preschool, Laura has seen significant progress in her son. He laughs, plays, loves to cuddle and is learning new words. He also has the twinkle in his eyes that Laura remembers. “I have my boy back,” she said. Logan still has the VP shunt, so he continues to see the pediatric neurosurgeons at Akron Children’s, as well as specialists in neurology, physiatry and ophthalmology, in addition to his weekly physical therapy sessions. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 11 Programs Emily Cooper Welty Expressive Therapy Center Akron Children’s Emily Cooper Welty Expressive Therapy Center is the only facility in northeast Ohio designed for patients, families, staff and the community to receive holistic healing through a variety of modalities, including art, music, theater and dance. Here patients use the creative arts to deal with illness, cope with difficult emotions and find comfort. It’s staffed by art and music therapists who are trained to address the psychosocial and physiological concerns that accompany serious illness. In 2011 and 2012, a variety of music and art therapy programs and workshops were held, as well as performances by community organizations and local musicians, actors and dancers. To learn more, go to akronchildrens.org/expressivetherapy. 2011 Artist-in-Residence The Expressive Therapy Center received a grant from LiveSTRONG, which funded an artist-in-residence for 2011. Emily Dennis filled that position for the year and was able to work on many art projects with hematology/oncology patients. This culminated in an art show at the end of the year, the Gallery of Strength, featuring the artwork created through this project. 12 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Grief and Bereavement Services Individual and Family Counseling is available for bereaved family members as needed. Family-centered, follow-up phone calls are made to bereaved families by palliative care volunteers and staff. Good Mourning Grief Support Series helps children and their parents understand and deal with grief resulting from the death of a loved one. Support for Your Journey – A Resource Guide for Grieving Families provides information on a host of available community resources and other services to help families through the grieving process. Hope for Grandparents Grief Support Series offers support for grandparents who have experienced the pain of losing a grandchild. Precious Parents is a pregnancy and infant loss support group run by parents for parents. Supporting Super Kids is a support group for children ages 5-16 who have a family member coping with a chronic illness. Thursday Night Grief Support Series is co-facilitated by professionals and parents to provide information and support to bereaved parents. Kamp Kaleidoscope is a free day camp for bereaved children and young adults. The Compassionate Friends, Akron Area, is led by parent facilitators and offers friendship, understanding and hope to bereaved families. Annual Remembrance Service at the Holidays is a non-denominational service featuring speakers, music, a candle-lighting ceremony and a slide show of the children who have been lost. It’s a huge event, which would not be possible without hundreds of volunteers and hospital staff members. Since the first service was held in 1984, it has grown every year. In 2012, approximately 600 people attended the service, which is now hosted by The Chapel at either their downtown Akron or Green location. In 2012, the Compassionate Friends of Akron sponsored inspirational speaker, singer and songwriter Alan Pedersen. The music of this bereaved father greatly enhanced the service. Alan also gave a lecture at Akron Children’s the day after the service to physicians, residents, nurses, social workers, other hospital staff and volunteers. He will return in 2013. Funeral Assistance Program provides up to $500 for funeralrelated expenses to needy families whose children have died at Akron Children’s. This provides for the basic cost of cremation and a service, or can help defray the cost of burial or other funeral expenses. This is an ongoing need and something we feel is important to offer to families. If you’re interested in supporting or raising funds for our Funeral Assistance Program, please contact our office. In 2012, our program received $6,000 as the beneficiary of the Akron Children’s Kids Are Number One Run. This annual 5K run and family fun day is organized by the hospital’s Employee Foundation as a way to give back. For more information about any of these programs, please visit our website at akronchildrens.org/palliativecare or contact the Palliative Care office at 330-543-3343. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 13 Volunteers Our dedicated volunteers donate hundreds of hours to help our patients and families. With their help, we are able to offer many additional programs and services that are of great benefit to the patients and families we serve. This includes home visits and phone calls to patient families; the creation of beautiful handmade cards to send to patients on their birthdays and to bereaved families on special days; portraits for patient families, including complimentary, professional photos through Flashes of Hope and Now I Lay Me Down to Sleep and drawings of children for bereaved families through Faces of Angels; and assistance with many other programs and special events. focused mission and identify goals for moving forward. During the retreat, a new name was selected, indicating the members’ desire to expand from an advisory role to a more active leadership role. The team has continued the Holiday Elves program, which provides holiday wreaths, trees and other treats to palliative care families. Many members of the team serve as volunteers in the Haslinger Center and the Expressive Therapy Center and assist with events and fundraisers. They have also committed to raising funds for our partnership with a pediatric palliative care program in Kenya, a special project we began in 2012 (See page 23.). Community Leadership Team Members Community Leadership Team The Community Leadership Team (formerly the Community Advisory Board) began in 2003 for members to serve as liaisons to the community and promote the center’s services. As its membership and purpose has shifted over the years, the group decided to have a retreat in 2012 to create a more David Anthony Kathy Bearer Barbara Brown Shelly Brown Eileen Burg Catherine Clark Bill Cushwa Paula Dutton Patti Kelleher Andy Lamb Meg Lamb, Chair Sue Locke Jody Miller-Konstand Jaynee Nance Marie Parker Vicki Parisi Joe Randazzo Elizabeth Sheeler A Heartfelt Thank You to Our Volunteers Sandy Adkins Ari Aviram Emily Bauman Emily Bennett Linda Bowlin Libert Bozzelli Madeline Bozzelli Allison Brookes Barbara Brown Anne Bruno Sharon Bursky Connie Buzek Kristen Carbary Cierra Clark Bailey Cole Gail Cousino Laurie Cousino Alex Davis Ned Davis Renee Anthony Dee Ginny Deighton Tom Deighton James Dowdell Paula Dutton Katie Durr Tonya Durst Nick Edwards Jack Edwards Anna Ehrmantraut Allison Ewing Ed Fabian Lianna Fertig Ulia Fisher Christina Foisie Laura Francis Michelle Friess Jean Frisone Nancy Gartner Tammy Gersman Jennifer Greulich Paula Gross Melissa Gurik Robin Habunek Cheryl Hatcher Jackson Henderstrom Carolyn Hofmann Katy Holland Sara Holm Nora Houser Katie Humbel Judy Huehner Tiffany Jett Brandon Johnson Mejgon Joya Alex Kempf Karen King Terrie Kisha Ariel Klusty Lori Konwinski Bridget Lacy Andy Lamb Matt Lamb Meg Lamb Sol Lee Kellie Lightfoot Allison Lint Ellen Lintner Fred Linxweiler Kelly Livesay Sarah Locke Sue Locke Nancy Ludwick Russell Malone Rhea Marcinko Catherine May Audra McCoury Taylor McDaniel Bill McGinnis Mary Jane McGinnis Emily McGuirk Emily McKenna Stephen McNulty Kristen McTaggart Laurie Mellion Janet Miller Sandra Montgomery Brian Murphy Mae O’Donnell Bill Oliver Cynthia Oliver Jeff Otterman Mary Beth Palmer Joe Parisi Elizabeth Parker Marie Parker Taylor Parker Carolyn Parry Debbie Patterson Emily Paulhardt Alex Petroski Tess Powers Tiffany Price Camryn Rabourn Akhinav Raval Ann Ries Leslie Robbins Leslie Saralino Denise Scala Clare Scantling Nicole Schreffler Michelle Sergi Danielle Shatrich Daniel Snyder Nikolche Sobevski Rhonda Spada Emily Speerbrecher Carol Stanley Lisa Straughn Madison Straughn Diane Tobias Nicole Valentino Christin Vargo Holly Weisbrodt Terry Wells Alicia Weston Penny White Shannon Wilkes Alexis Williams Sataire Williams Jill Wolf Grace Worley Rachel Wurzel If you are interested in becoming a volunteer, please contact us at 330-543-3343 and let us know how you’d like to get involved. 14 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Since joining the Community Leadership Team eight years ago, Lamb has been involved in a host of projects aimed at building awareness for the Haslinger Center and furthering its mission. This includes assisting with continuing education programs, making follow-up phone calls to families, sending cards to bereaved families, and helping with the Holiday Elves program which provides trees, wreaths and other treats to families. She’s also been involved in many of the center’s special events, such as the recent 10th birthday celebration and an open house in the Expressive Therapy Center, and is now helping to get the center’s latest special project under way, a partnership with a pediatric palliative care program in Kenya, Africa. “As a member of the Community Leadership Team, I’m here to support any activities or programs that come up,” said Lamb. “As the services have grown, so have the needs.” Meet Meg Lamb Because of her healthcare background and community volunteerism, Meg Lamb was an obvious choice for the Haslinger Center’s Community Leadership Team. A licensed pharmacist, Meg and her husband, Tom, own Sand Run Pharmacy in Akron. However, the day she was supposed to attend her first team meeting in 2004, her 12-year-old son Matt was admitted to Akron Children’s Burn Center with a serious injury. He would spend the next month in the hospital, followed by 18 months of ongoing care, giving her a whole new perspective on Akron Children’s Hospital. “Previously we had been at Children’s for only minor problems, like stitches,” said Lamb, who also has another son, Andy, age 22. Once Matt had recovered, Lamb joined the Community Leadership Team in 2005, now more familiar with Akron Children’s and with a new appreciation for the services it offers. Her sons have also gotten involved with some of the center’s activities, particularly the Holiday Elves program. Matt, now 21, and Andy both help make deliveries to patient families, getting great joy in spreading holiday cheer and handing out stockings to the children, which always seem to have just the right toy or treat. “Having an opportunity to interact with the families and get a better understanding of what we can do to help is the most rewarding part of being a volunteer,” said Lamb. “Dr. Friebert and her staff are incredibly committed to meeting the needs of the community and the families they serve. I’m honored to be able to support that, so they can focus on this important work.” Meg lives in Bath Township, where she is also active in the Bath Church. She’s on the Dean’s Advisory Board at Northeast Ohio Medical University’s College of Pharmacy, serving as a preceptor for pharmacy students. She’s also a member of the Summit Vaccine Coalition and Partners for Safety, a fall prevention initiative for seniors. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 15 of Ainsley’s illness, the Haslinger Family Pediatric Palliative Care Center was there. “They really served as our go-between and our voice with the rest of the staff,” said Jennifer. (Besides 13 months in the NICU, Ainsley also spent three months in the Pediatric Intensive Care Unit at Children’s.) Jennifer and Mark Knepper with daughters Olivia and Adelle. “It was very overwhelming and Marlene (Marlene Hardy-Gomez, a pediatric nurse practitioner on the palliative care team) was really good at anticipating what we needed, even before we knew it,” said Jennifer. Meet the Kneppers Palliative care staff also helped the Kneppers sort through the vast medical information they were receiving throughout their daughter’s care. Like many young couples, Mark and Jennifer Knepper of Streetsboro looked forward to starting a family. When their first child, Olivia, was about 1 year old, they found out Jennifer was pregnant with identical twin girls. This pregnancy, however, did not go smoothly. “Ainsley was handled flawlessly in the hospital. When the time came, the palliative care team helped her pass peacefully,” said Jennifer. “They were so caring and proactive, and did everything possible to help us.” Jennifer developed pre-eclampsia, a potentially dangerous complication of pregnancy, and was hospitalized at 31 weeks. A Caesarean section was scheduled at 32 weeks, yet the day before, Jennifer and Mark lost one of the twins to a fetomaternal hemorrhage, a condition where blood from the fetus leaks into the mother’s bloodstream. Because of the risk to the surviving twin, she had to be delivered right away. Ainsley was born on December 29, 2010, and immediately transported to Akron Children’s Hospital’s Neonatal Intensive Care Unit (NICU). The biggest issue facing the preemie was her under-developed lungs. Although she started out strong, there would be set-backs as Ainsley’s breathing continued to deteriorate, said Jennifer. Eventually she had to have a tracheotomy and was dependent on a ventilator to help her breathe. She also had a feeding tube. As they were preparing to say goodbye to one child, the Kneppers were also preparing for the birth of another. When Ainsley was 9 months old, they found out that Jennifer was pregnant. Throughout the pregnancy, the palliative care staff made sure Jennifer was comfortable while she was at Ainsley’s bedside every day. Ainsley passed away on May 12, 2012 and two weeks later on May 29, Adelle was born. It was a bittersweet time for the Kneppers as they said goodbye to one daughter and welcomed another. “At that point, we were in survival mode and focused on moving forward,” said Jennifer. The Kneppers no longer make daily visits to Children’s, and have settled into a new family routine with their young daughters, who, like Ainsley, have brought them so much joy. Despite everything they have been through, they have many good memories of the days when Ainsley was doing well – smiling, laughing and happy in spite of being so sick. For the Kneppers, the next 16 months would be spent at Akron Children’s as they helped their baby fight to survive. Throughout the ups and downs 16 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Education Impacting the Delivery of Palliative Care • Selected as a Palliative Care Leadership Center (PCLC) by the Center to Advance Palliative Care (CAPC) in 2008, the Haslinger Center trains and mentors teams from institutions around the country that are starting or enhancing their own pediatric palliative care programs. In 2011 and 2012, we trained 19 teams (more than 100 people). • Our Pediatric Palliative Care Fellowship Training Program received certification from the Accreditation Council for Graduate Medical Education (ACGME) in 2009, and was reaccredited for 10 years after a site visit in 2012. All of our graduated fellows who have taken the board exam in Hospice and Palliative Medicine have passed and are currently practicing in the field. Palliative care fellows trained in 2011-2012 include: - Kristin Meade, MD and Blaine Pitts, MD 2010-2011 - Britni Lookabaugh, MD and Dianna Yip, DO 2011-2012 - Brooke Johnston, MD and Conrad Williams, MD 2012-2013 other hospital staff, community members, patients and parents. Continuing education credit is offered to nurses, physicians, psychologists and social workers, with a certificate of completion offered for other allied health professionals. • The quarterly Lunch ‘N Learn Series continues to be well-attended by community agencies and hospice organizations. Many of these organizations do not frequently see children with life-threatening or chronic conditions, so our education can help them provide better care for our patients in their own communities. In 2011 and 2012, topics included care coordination for children with special needs, feeding and nutrition for children with special needs, pediatric symptom management, perinatal palliative care, complementary and alternative therapies, and boundaries. For the most up-to-date schedule and topics for these educational programs, check our event listing at akronchildrens.org/palliativecare. Educating our Medical Community • The Haslinger Center continues to offer elective rotations for medical students from Northeast Ohio Medical University (NEOMED) and for Akron Children’s Hospital residents, as well as residents and students from institutions that do not have well-developed pediatric palliative care programs. • We host nursing and social work students, physicians and other healthcare professionals who want to learn more about pediatric palliative care. Learners participate in consultations and family meetings, and receive overall exposure to the goals, philosophies and practice of pediatric palliative care. • The monthly Pediatric Palliative Care Curriculum series continues to be well-received by Akron Children’s staff and the community, and is a required lecture for the hospital’s residents. Topics include communication, treatment of pain and other symptoms, boundary issues, ethics, spirituality, grief and bereavement. Presenters include palliative care and Emani Johnson 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 17 Education Collaborating with the Faith Community • The Palette of Faith Coalition was established in 2009 to share ideas among the faith community regarding how to better serve families facing serious illness. As part of this mission, an annual conference is held. In 2011, Summa Health System hosted “Honoring the Stories: Enriching Meaning at End of Life.” In 2012, Akron Children’s hosted “Sacred Moments: The Role of Spirituality in Sustaining Patients, Families and Their Professional Caregivers.” Presenting to National and International Audiences Middle East Cancer Consortium Advanced Pain Medicine & Palliative Care for Children Workshop for Professionals in Pediatric Hematology-Oncology, Larnaca, Cyprus • Sarah Friebert - Advanced Communication and Decision-making in Pediatric Hematology-Oncology - Ethical and Legal Challenges in Pediatric Hematology-Oncology - Team Collaboration and Effectiveness in Pediatric Hematology-Oncology - Managing Distressing Symptoms: Fatigue, Psychosocial & Psychiatric Symptoms International Symposium on Pediatric Palliative Care, Seoul, South Korea • Sarah Friebert - Healing the Total Pain of Children and Adolescents: The Global Pediatric Palliative Care Movement - Pediatric Palliative Care in the USA - A Doctor’s Perspective on Pediatric Palliative Care in the USA • Marlene Hardy-Gomez - The Role of the Nurse Practitioner in Pediatric Palliative Care - Being an Advanced Practice Nurse in the U.S. - A Nurse Practitioner’s Perspectives on Pediatric Palliative Care in the USA 15th Annual Update on Pediatric and Congenital Cardiovascular Disease: A Holistic Approach – Bringing Interdisciplinary Evidence-Based Practice to the Patient, Scottsdale, AZ • Marlene Hardy-Gomez - The Newest “Odd Couple:” The Heart Center and the Pediatric Palliative Care Team at Akron Children’s Hospital: A Comprehensive and Transdisciplinary Team Approach to Complex Congenital Heart Disease American Academy of Child and Adolescent Psychiatry and Canadian Academy of Child and Adolescent Psychiatry Joint Annual Meeting, Toronto, ON • Sarah Friebert - If You Build it Right, They Will Come: Pediatric Palliative Care Delivery Models - Teaching Palliative Care in an Oncology Setting - Preparation for Imminent Death - Sedation to Unconsciousness for Refractory Distress - Developing Strategies of Change for Palliative Care in Your Institution - Small Group Facilitator: Professional Care for Professionals; Family-Centered Care; Psychosocial/ Spiritual Care; Procedural Pain Management Workshop Nevaeh Mann 18 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Center to Advance Palliative Care National Seminar, San Diego, CA • Margaret Farrar-Laco - Time: Why Does it Take So Many People to Take Care of These Patients? - Pediatric Palliative Care and the Adult Community Provider - Structure and Function of the Pediatric Palliative Care Team First Pediatric Palliative Care Symposium, Kingdom of Saudi Arabia, Jeddah Lucas Smolinski and his service dog, Clarabelle. • Sarah Friebert - Referral Criteria to Pediatric Palliative Care - Managing Anxiety and Depression in Pediatrics - Ethical Principles and Decision-making in Pediatric Palliative Care - Development of Quality Indicators in Pediatric Palliative Care New York University, Langone Medical Center Pediatric Grand Rounds, New York, NY • Sarah Friebert - State of the Art and Science in Pediatric Palliative Care: Arrive Early and Stay Late Riley Children’s Hospital, Pediatric Grand Rounds, Indianapolis, IN Cooper Regional Hospital Pediatric Grand Rounds, Camden, NJ • Sarah Friebert - State of the Art and Science in Pediatric Palliative Care: Arrive Early and Stay Late • Sarah Friebert - State of the Art and Science in Pediatric Palliative Care: Arrive Early and Stay Late Society of Hospital Medicine Annual Conference (HM12), San Diego, CA OPPEN (Ohio Pediatric Palliative and End-of-Life Care Network) Fall Educational Seminar, Dublin, OH • Sarah Friebert - State of the Art and Science in Pediatric Palliative Care: Arrive Early and Stay Late • Sarah Friebert - Management of Suffering During Discontinuation of Medically Provided Nutrition and Hydration Hospice of the Valley, Youngstown, OH University of Maryland Medical Center Pediatric Grand Rounds, Baltimore, MD • Margaret Farrar-Laco - Pediatric Pain and Symptom Management - Introduction to Pediatric Palliative Care MetroHealth Medical Center Pediatric Grand Rounds, Cleveland, OH • Sarah Friebert - State of the Art and Science in Pediatric Palliative Care: Arrive Early and Stay Late • Sarah Friebert - Mission Possible: Integrating Pediatric Palliative Care into the Subspecialty Care of Children with Serious Illness Children’s of Alabama Pediatric Grand Rounds, University of Alabama at Birmingham, AL • Sarah Friebert - A Zero-Tolerance Policy for Symptoms and Suffering in Children and Families: Together, We Can! 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 19 Education Cleveland Clinic Foundation Pediatric Grand Rounds, Cleveland, OH • Sarah Friebert - A Zero-Tolerance Policy for Symptoms and Suffering in Children and Families: Together, We Can! Georgetown University Hospital, Washington, DC • Sarah Friebert - A Zero-Tolerance Policy for Symptoms and Suffering in Children and Families: Together, We Can! Boston Children’s Hospital Stephen E. and Catherine Pappas Annual Grand Rounds Lecture in Pediatric Palliative Care, Boston, MA • Sarah Friebert - Moral Distress in the Care of Children with Advanced Neurological Illness OSF Annual Supportive Care Education Day, OSF Saint Francis Medical Center and Children’s Hospital of Illinois, Peoria, IL • Sarah Friebert - Spirituality in the Dying Child/Child with Terminal Illness District of Columbia Pediatric Palliative Care Collaboration’s Carlos F. Gomez Quality of Life for the Children Conference, Washington, DC • Sarah Friebert - The Child with Cancer: Oncologic and Pediatric Palliative Care Approach - The Interdisciplinary Team 21st Annual Good Grief Conference, “Innovations in Spiritual Technologies: Voices of Compassionate Care,” Virginia Commonwealth University/Medical College of Virginia, Richmond, VA • Sarah Friebert and M. Karen Ballard - Compassionate Practice in Pediatric Palliative Care: A Workshop • Sarah Friebert - Leaving the Nest: Moving Your Pediatric Palliative Care Program Beyond the Inpatient Setting - Yes We Can: Seamless Integration of Palliative Care in the Pediatric Intensive Care Unit National Hospice and Palliative Care Organization 12th Clinical Team Conference, San Diego, CA National Hospice and Palliative Care Organization Management and Leadership Conference, National Harbor, MD • Sarah Friebert - Care for Children: Section 2302 of the Patient Protection and Affordable Care Act • Sarah Friebert - Pediatric Standards to Improve Organizational Quality Across the Lifespan Greater Illinois Pediatric Palliative Care Collaboration Regional Conference, Springfield, IL • Sarah Friebert and Margaret Farrar-Laco - Building for the Long Run: Care and Feeding of the Pediatric Interdisciplinary Team Baptist Health South Florida Pediatric Grand Rounds, Miami, FL • Sarah Friebert - Care for Children: Section 2302 of the Patient Protection and Affordable Care Act • Sarah Friebert - Pediatric Oncology and Palliative Care: Time for the Twain to Meet Virginia Commonwealth University/Medical College of Virginia Pediatric Grand Rounds, Richmond, VA • Sarah Friebert and M. Karen Ballard Nationwide Children’s Hospital Pediatric Grand Rounds, Columbus, OH • Sarah Friebert - Management of Distressing Symptoms in Pediatric Palliative Care - Yes We Can: Seamless Integration of Palliative Care in the Pediatric Intensive Care Unit 20 Nationwide Children’s Hospital, Columbus, OH - A Study of the Collective Soul of a Pediatric Palliative Care Team and Interventions to Support the Soul Association of Professional Chaplains 2011 Annual Conference, Dallas, TX • Sarah Friebert and M. Karen Ballard - A Study of the Collective Soul of a Pediatric Palliative Care Team and Interventions to Support the Soul 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Bears made for our families by Peggy Vreuls and friends. Northeast Ohio Medical University Community Health Sciences Grand Rounds, Rootstown, OH • Sarah Friebert - Pediatric Palliative Care: Why It Should Matter To You: An Unrecognized Global Health Initiative American Society of Pediatric Hematology-Oncology 24th Annual Meeting, Baltimore, MD • Sarah Friebert - Closing the Gap on Palliative Care Children’s Memorial Hospital, Chicago, IL • Sarah Friebert - Pediatric Palliative Care: State of the Art and Science American Academy of Hospice and Palliative Medicine Annual Assembly, Vancouver, BC • Sarah Friebert - Figuring Developmental Disability into the Calculus of Benefits and Burdens of Life-Prolonging Interventions for Children Center to Advance Palliative Care Audioconference • Sarah Friebert - Creating Pediatric Palliative Care Programs in Your Community - Top Strategies for Early Integration of Palliative Care for Children with Cancer American Society of Pediatric Hematology-Oncology (ASPHO) Audioconference • Sarah Friebert - Pediatric Palliative Care in Sickle Cell Disease Midwest Care Alliance and HospiScript Services Audioconference • Sarah Friebert - Pediatric Palliative Care National Hospice and Palliative Care Organization Audioconference • Sarah Friebert - Pediatric Palliative Care: Putting Standards into Practice - From Competencies to Curriculum: The National Collaborative Project on Defining the Pediatric Palliative Care Competencies and Developing a Shared Curriculum 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 21 “Social worker Denise Powers Fabian is amazing,” said Beth. “If questions came up, we’d call Denise first. She always came through for us.” Lucas still has a VP shunt to relieve fluid and swelling on the brain and a feeding tube, but since May 2013, he no longer has a tracheotomy and is breathing on his own. Although he’s home with his family, which also includes his 8-year-old brother, Aiden, Lucas still requires overnight nursing care through Children’s Home Care Group. Denise helped the family apply for coverage for Lucas’ medical care through Medicaid and the Bureau for Children with Medical Handicaps. Palliative care has also assisted the family with other financial concerns, since Beth had to quit her job at a local hospital. Beth and Lucas Ransom. Meet Lucas From the moment he was born, Lucas Ransom was in a fight for his life. Although he arrived one month early in January 2010, with a cleft palate that made feeding difficult, he had several other serious problems unrelated to his prematurity that made his condition critical. This included a type of bacterial infection known as Group B strep (GBS), meningitis, sepsis and a build-up of fluid on the brain or hydrocephalus. “As a man, it’s hard to ask for help,” said Brent, who’s self-employed as a web developer/designer. “But we are so grateful for the financial assistance that palliative care has provided.” “They’ve been a huge help behind the scenes, helping us apply for programs and just keeping us informed about new resources that are available,” added Beth. Lucas is now 3 and attends an integrated preschool three days a week with other children who may have special needs, as well as those who do not. His parents are thrilled that Lucas is able to be with other kids his age and is making friends. Initially he spent time in the neonatal intensive care unit at the hospital where he was born, but when his condition worsened, he was transferred to the Pediatric Intensive Care Unit at Akron Children’s Hospital. Shortly after this, his parents, Beth and Brent of North Canton, met the team in the Haslinger Family Pediatric Palliative Care Center. The palliative care team offered moral and emotional support to the Ransoms, especially through the ups and downs of Lucas’ condition. “We almost lost him three different times,” said Brent. Along with the emotional rollercoaster of having a critically ill child, the Ransoms also had practical concerns and questions. 22 Brent and Lucas Ransom. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Special Projects Foundation for Hospices in Sub-Saharan Africa (FHSSA) Beth, Brent and Lucas Ransom. “It’s like a dream come true,” said Beth. Because the preschool was not used to having a child who is medically fragile, Denise met with his teachers to review Lucas’ Individualized Education Program (IEP). Since starting preschool in January 2013, Lucas has made great strides. He’s starting to say words and has taught his classmates and teachers how to sign, which is his primary method of communicating. Along with preschool, Lucas attends weekly speech, physical and occupational therapy sessions at Akron Children’s. Previously in a wheelchair, he’s now able to use a walker, often under the watchful eye of Aiden who’s very protective of his little brother. Through Akron Children’s, the Ransoms have met other families of children with special needs, who all recently attended an event together at the Akron Zoo. “It was so nice to be in a situation where we can all be comfortable and nobody stares or gawks at your child,” said Beth. With each new word or skill that Lucas learns, his parents marvel at just how far he has come. The Haslinger Center has recently partnered with a pediatric palliative care program in Kenya, Africa, through the Foundation for Hospices in Sub-Saharan Africa (FHSSA), a program of the National Hospice and Palliative Care Organization (NHPCO). U.S. hospice and palliative care programs commit to supporting the African programs by sharing knowledge and raising funds, which can make a big difference in a place with very few resources. We’ve been able to have a few calls via Skype with the pediatric palliative care staff at Garissa Provincial General Hospital in Kenya and plan to communicate with them on a monthly basis. The hope is that eventually members of our staff will be able to travel to Africa, and members of their staff will be able to come here. We are grateful to our Community Leadership Team for committing to raise funds for this worthwhile project. For more information about the FHSSA program, visit www.fhssa.org. Documentary: Portraits of Life, Love & Legacy Through Pediatric Palliative Care In 2012, in collaboration with Northeast Ohio Medical University and a grant from the Akron Community Foundation, we created Portraits of Life, Love and Legacy Through Pediatric Palliative Care. This documentary about our program features the stories of seven of our families who discuss their close partnerships with our team and how they found love, joy and purpose through the lives of their special children. Visit www.neomed.edu/educationalmedia to view a trailer and for ordering information. “He’s a miracle child,” said Brent. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 23 Financial Support Palliative Care Funds The following is a list of funds that support the Haslinger Family Pediatric Palliative Care Center. The funds allow donors to better choose and direct how their money is used. Your gift to any of the funds listed will go a long way toward enhancing the lives of children and families. If you are interested in making a donation, please use the enclosed postage-paid envelope and indicate if there is a specific fund you would like to support, or contact the Akron Children’s Hospital Foundation at 330-543-8340. Thank you! The Palliative Care General Fund provides financial support for the immediate needs of the center, such as equipment and supplies for patient use, educational needs, or other expenses related to the operation of the center. The Cushwa Family Pediatric Palliative Care Fund was established by Mr. and Mrs. William Cushwa to support program staff who provide unreimbursed care, such as our psychologist, dietitian, child life specialist and massage therapist. 24 The Pediatric Palliative Care Gift Card Fund was recently renamed the Courage for Carina Gift Card Fund in honor of Carina Britz, a palliative care patient who died in 2009. It was established by Mr. and Mrs. William Cushwa to purchase gift cards for patients to buy items such as groceries, clothing, gasoline and other necessities. The Austin Michael Davis Memorial Endowment Fund was created by donations received in memory of Austin Michael Davis who died in 1992 at age 2 1/2 from Hemolytic Uremic Syndrome. It funds parent and family support services. The River of Life Fund assists caregivers by relieving financial burdens when other resources have been exhausted or are unavailable, particularly for housing, utilities, groceries, transportation, medical and burial expenses. Sarah Elizabeth Friebert, MD Leadership Chair in Pediatric Palliative Care Fund supports the director of the Haslinger Center and was started by a gift from the Sutkowski Foundation. This is the first-ever pediatric palliative care endowed chair position in the country. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY The Pediatric Palliative Care Fellowship Fund supports programs and activities to enhance the education of pediatric palliative care fellows trained at Akron Children’s Hospital. The Colin James Carr Fund supports community bereavement services and programs at Akron Children’s Hospital. It was established in 2001 by Adam and Valerie Carr in memory of their son. Lauren Ellen Gartner, Forever in Our Hearts, Expressive Therapy Fund supports the Expressive Therapy Center at Akron Children’s Hospital. The center provides space where patients and family members can participate in music, art, dance, photography and other forms of creative expression. The Stan and Roberta Marks Fund for Music Therapy supports staffing, supplies, instruments, programming, education and other designated projects needed for the music therapy program. The Manny Rodriguez Patient Safety Education Fund supports education and training of staff and families related to patient safety, as well as the importance of pediatric palliative care in the lives of children and families. Donor Angels January 1, 2011 through December 31, 2012 Dr. and Mrs. Drew K. Abramovich Mr. Bruce Agneberg Akron Children’s Hospital Employee Foundation Council Akron Children’s Hospital Genetics Department Akron Children’s Hospital Medical Staff Akron Children’s Hospital Pediatrics Green Akron Civic Theatre Akron Community Foundation Akron General Medical Center Akron Glass Tinting Akron Racers Professional Softball Team Mrs. Virginia and Mr. William E. Albanese Album Epoca USA, LLC Mr. and Mrs. Michael D. Allega Beth and Ham Amer American Centrifuge Manufacturing, LLC American International Group, Inc. Matching Grants Program Ms. Julie E. Amsden Mrs. Kathy A. Andrea Rennick and Dee Andreoli Andrew Jordan Photography Mr. and Mrs. Greg Anthony Mr. and Mrs. Charles Antibus Mr. and Mrs. Spiros Arfaras Association of Ohio Music Therapists Mr. and Mrs. Arthur E. Bailey Bailey’s Quality Plumbing & Heating, LLC Mr. and Mrs. Michael C. Bair Ms. Beverly Baker Ms. Hallia Baker Dr. Kimberly N. Baker Ms. Regina J. Bandera Mr. and Mrs. Jacques B. Barrett Dr. and Mrs. Anthony P. Bartholomew Believe in Tomorrow Mr. and Mrs. Justin M. Benko Dr. and Mrs. Arthur S. Benson Ms. Joyce Berkenstock Mr. and Mrs. Joseph Bernel Mr. and Mrs. James A. Berresford Ms. Camille M. Berrodin Mrs. Phyllis C. Berry Beverly’s Invitations & Stationery Dr. and Mrs. Michael T. Bigham Mr. and Mrs. Mark J. Blakely Ms. Nancy Bodnar Mr. Roger D. Bodosi Mr. Nathaniel Bowler Boy Scout Troop 933 Mr. and Mrs. Dan Boyle Ms. Katherine Brandt Ms. Madeleine Breen Mr. and Mrs. David L. Brennan Bridgestone Americas Trust Fund Mrs. Ann Britz Mr. and Mrs. James Broers Mrs. Ann Marie Brown, CNP and Mr. Douglas Brown Mr. and Mrs. Charles A. Brown Mrs. LaRee J. Brown Mr. and Mrs. Russell Brown Ms. Julie Bruno Mr. and Mrs. John A. Bryson Mr. and Mrs. Brendan C. Buescher Mrs. Eileen E. Burg Ms. Barbara Burger Mr. and Mrs. Jeffrey L. Burman Mr. and Mrs. James R. Bussman Mr. and Mrs. David Butler Ms. Betty Caetta Ms. Marilyn Calciano Mr. and Mrs. Bruce J. Campbell Mr. and Mrs. Jay E. Campbell Mr. and Mrs. Joseph J. Campo Mr. and Mrs. Joseph M. Campo Ms. Patti Cantwell Mr. and Mrs. Rocco L. Caponi Mr. and Mrs. James A. Cargle Carl & Sadie Shaheen Charitable Foundation Debbie and Joe Carpenter Mr. Adam Elliot Carr and Mrs. Valerie Wax Carr Ms. Nancy A. Carst Mr. and Mrs. Steven M. Carter Ms. Roxann Case Mr. Chuck Catalano Mr. and Mrs. David J. Celik Mr. and Mrs. Michael L. Cercell Ms. Lyn Ceronsky Charles Schwab Corporation Foundation Mr. and Mrs. Thomas S.K. Chi Norman and Jean Christopher CHUBB & Son Mr. Lance Churchman Mr. Larry K. Churchman Cindy & John T. Petures, Jr. Family Fund of Akron Community Foundation Ms. Elizabeth A. Clark Mr. and Mrs. John C. Clark Mark and Cathy Clark Ms. Janette Clements Mr. and Mrs. Douglas I. Cole, Jr. Drs. Georgette and Stavros Constantinou Mr. and Mrs. David Cook Mr. and Mrs. Kevin M. Cook Mr. and Mrs. Gregory J. Cordray Ms. Janet F. Cornelius Courage for Carina & Company Covelli Enterprises, Inc. Mr. and Mrs. Scott Cox Thomas R. and Mary Lynn Crowley Mr. Dennis Cukon Mr. Ron Culberson Mr. and Mrs. Jonathan P. Culp, Jr. Mr. and Mrs. Robert L. Culp, Jr. Ms. Michele Cummings Mr. and Mrs. Howard M. Cunningham Mr. and Mrs. William W. Cushwa, Jr. Ms. Marlene M. D’Amura Ms. Susan Daum and Ms. Sandy Gleason Mr. and Mrs. Mark C. Davey Mr. and Mrs. Dennis D. Davidson Chrissy Davis Mr. and Mrs. Harry Davis Mr. and Mrs. Richard Davis Mr. Terence F. Deane Mrs. Terence F. Deane Ms. Dianne L. DeBord Mr. and Mrs. Eric T. Deighton Mr. and Mrs. Thomas J. Deighton Mr. Doug Delahanty Mr. Robert Demboski Rev. Douglas B. Denton Dermatologic Surgery Center of Northeast Ohio, Inc. Mrs. Susan DiCosimo and Mr. Michael E. Snyder Mr. and Mrs. Edward A. DiCresce Mr. and Mrs. Kevin Dieter DiFeo & Sons Poultry Mr. Anthony D. Dilucente Master Xavier Dirker Mr. and Mrs. Jeffery J. DiSandro Ms. Deborah S. Dodd Mr. and Mrs. Mark A. Dodez Mr. and Mrs. Michael J. Donahue, Jr. Mr. and Mrs. Thomas C. Dormo Ms. Betty Dowd Ms. Cynthia K. Duncan Tom Dye Mr. and Mrs. James S. Earich Ms. Carol A. Eckroate Mr. Anthony M. Elavsky Mr. and Mrs. Chip Elavsky Mr. and Mrs. Frank V. Elavsky Jason and Allison Ewing Continued on next page The Haslinger Family’s Generous Support The Haslinger Family Pediatric Palliative Care Center Fund was created in 2002 with a generous $4 million commitment in support of the center’s operations. In 2009, the Haslinger family generously pledged to continue their support of the Haslinger Center and an endowed chair in Pediatric Palliative Care through a matching grant. A challenge was issued: to raise $200,000 annually for five years, with each dollar matched by the Haslingers, up to $1 million. Sandra Haslinger Through the generosity of donors, over $900,000 has been raised toward the endowed chair since 2009. Including the generous grant match, the grand total raised stands at more than $1.7 million. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 25 Financial Support Ed and Denise Fabian Dr. Ibrahim S. Farid and Dr. Rosemary R.G. Farag Ms. Beth Farnstrom Mr. Christopher Laco and Mrs. Margaret E. Farrar-Laco, CNP Mr. John Faust Mr. Lawrence Fenton Fidelity Charitable Gift Fund FirstEnergy Corporation Mr. Jon Fiume Ms. Bridget R. Flowers Mr. and Mrs. Gregory A. Folatko Mr. and Mrs. John C. Fondran Dr. Michael Forbes Mr. and Mrs. David G. Forgach Ms. Judith L. Fowler Dr. and Mrs. Monte E. Fox Mr. and Mrs. William G. Frantz Fraternal Order of Police 88 Dr. Sarah Friebert Steve and Naomi Friebert Stuart and Diane Friebert Mr. and Mrs. Jason A. Fried Friends of Children’s Hospital Mr. Harold H. Gaehle, Jr. Ms. Catherine M. Gaeta Ms. Eleanor Gaeta Mr. Brooks Collins Gaines Ms. Carol Ganzel Ms. Emily Ganzel Gap Foundation Gift Match Program Mr. and Mrs. David A. Gardner Mr. and Mrs. Carl Gartner Ms. Nancy X. Gartner Mr. and Mrs. Daniel L. Gentile Giant Eagle 4060 Mr. Joshua Gippin Ms. Michelle Gippin The Honorable and Mrs. Robert Gippin Girl Scout Troop 90806 from Brimfield Girl Scout Troop 1420 from Wadsworth Mr. and Mrs. Dennis Gonano Dr. and Mrs. Terry Gordon Mr. and Mrs. Robert Gottschick, Jr. Mr. Joseph Graham Ms. Theresa Graziani Mr. James R. Griggy Dr. and Mrs. Jordan P. Grossman Mr. and Mrs. Jeremy M. Gursky Mr. and Mrs. Jeremy D. Ha Ms. Eileen M. Habunek Drs. Timothy L. and Brenda L. Hagen Mr. and Mrs. William G. Hager Ms. Joyce K. Hamaker Mr. Randy M. Hamblin 26 Mr. and Mrs. Carl M. Hammons Ms. Jean Hansen Ms. Lenora Hanuschock Ms. Rita Hanuschock Mr. and Mrs. Kenneth N. Harlin Mr. and Mrs. Robert A. Harris Ms. Latrice D. Harris-Hazell Harwick Standard Distribution Corporation Ms. Jennifer Sue Haslinger and Mr. Jeff Johnson Ms. Melissa A. Haslinger Haslinger Family Foundation Dr. Julie Hauer Mr. and Mrs. Michael J. Haught Helen Brach Foundation Hernandez Construction Services, Inc. Mr. and Mrs. Gary A. HeslopBaker Mr. Michael L. Hillman Mr. and Mrs. Mitchell E. Hirsch Dr. Cassandra Hirsh and Mr. Brian Harrell Ms. Rae Hoelzer Ms. Carolyn B. Hofmann Mr. and Mrs. Thomas G. Hofmann Mr. and Mrs. Steven R. Holdsworth Mr. and Mrs. Willard T. Holland Mr. and Mrs. Brian J. Hollingsworth Mr. and Mrs. Bruce Hollingsworth Adam and Pam Holtz Mr. and Mrs. Barry B. Holtzer Tami Hood Mr. and Mrs. William M. Hopkins Mr. and Mrs. Steven J. Hopp Drs. Jeffrey and Patricia Hord Horizon Hospice Hospice of the Valley Hospice of the Western Reserve, Inc. Mr. and Mrs. Otis A. Hower Susan Howson Ms. Rebecca S. Huff Ms. Connie W. Humble and Mr. Bill Delagrange Mr. and Mrs. Paul A. Hummel Hummel Funeral Homes Mr. and Mrs. Jeffrey H. Hunt Mr. and Mrs. Joseph F. Hutchinson, Jr. Mr. and Mrs. John N. Innamorato Dr. Sharon R. Irwin J.M. Smucker Company Jackson Band Boosters Jean P. Wade Foundation Jevs Human Services Ohio FMS John S. and James L. Knight Foundation Mr. and Mrs. Donn Johnson Mr. and Mrs. David C. Johnston Joy Mining Machinery Ms. Sandra A. Kalenterides Mr. and Mrs. Elias J. Karam Ms. Nadine Kasmar Ms. Elizabeth Katavich Mr. George J. Katzakis Mr. and Mrs. Craig Kearns Drs. Costas and Sarah Kefalas Mr. and Mrs. William Kelleher Drs. Jeff and Ellen Kempf Mr. and Mrs. David R. Kimberly Kiwanis Club of Belden Village KKG Akron Alumnae Association Ms. Inga Klein Jennifer Knepper Mr. and Mrs. Lloyd F. Knudsen Mr. and Mrs. W. Dale Koblenzer Mr. and Mrs. Mark L. Kohler Mr. and Mrs. Robert G. Konstand Mr. and Mrs. Kenneth Koontz Kovatch Castings Mr. Larry Kowicki Mr. and Mrs. William J. Koza Mr. and Mrs. Douglas Krapf Mr. William P. Krause Mr. and Mrs. Stanley M. Krusinski Drs. Steven and Carolyn Kuerbitz Mr. and Mrs. Lester D. Kurtz Mr. and Mrs. James Lalumandier Tom and Meg Lamb Mr. William P. Landers Mr. and Mrs. Butch Landis Mr. and Mrs. Stephen A. Landry Laura R. and Lucian Q. Moffitt Foundation Mr. Steven C. Lazarides Dr. Amy F. Lee Ms. Valoree Lee Ms. Rachel Levi Lexus of Akron Canton Lexus Pursuit of Potential Dr. Stephen Liben Mr. and Mrs. Scott A. Life Linton & Hirshman, LLC Mr. and Mrs. Frederick C. Linxweiler, Jr. Mr. and Mrs. Michael Livesay Lloyd L. & Louise K. Smith Memorial Foundation Sue Locke Mr. and Mrs. William B. Lockwood Russ and Tonya Long Mr. and Mrs. David A. Looney Lubrizol Foundation Mr. and Mrs. Joseph D. Lucci, Jr. 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY Mr. and Mrs. John Lukez Mr. and Mrs. Charles L. Lunghofer Mr. and Mrs. Gerald A. Lutkus Mr. Jeff Lycan Mr. and Mrs. Shawn M. Lyden Mr. and Mrs. Martin L. Lyman Ms. Teri Vreuls Maerki Manchester United Methodist Church Mann Architects Margaret Clark Morgan Foundation Marketing Essentials International Mr. and Mrs. Anthony F. Marko Roberta and Stan Marks Mr. and Mrs. Joseph Massey Mr. and Mrs. Daniel J. Mastroianni Mr. John Mastrojohn, III Mr. and Mrs. Benjamin Mathews Mr. and Mrs. James D. Maxen Mr. and Mrs. Philip H. Maynard Drs. John and Margaret McBride Mr. and Mrs. Brian S. McCaulley Spike and Lindsay McCorcle Ms. Edna McCort Greg and Jackie McDermott Mr. and Mrs. Tommy McDonald Mr. and Mrs. Leo McGuinness Mr. and Mrs. David E. McIlvaine Mr. and Mrs. Thomas McKenna Mr. Robert McKimm Mr. and Mrs. Richard McPeek MCV Foundation MDS Foods, Inc. Dr. Kristin Meade Mr. Glen Medellin Laurie Mellion Mellion Orthodontics Ms. Iris J. Meltzer Ms. Christine Meneer Ms. Julie Mertz Mr. and Mrs. John Michael Mr. Scott J. Michaels Mr. and Mrs. Frederick S. Miller Mr. Galen Miller Ms. Ashley Minck Ms. Virginia Mitchell Mr. and Mrs. Vincent L. Monahan Mr. and Mrs. Sean A. Monigold Mr. and Mrs. Mark J. Montgomery Ms. Pam Montisano Marie Moore Ms. Kathy Moorhouse Mrs. Josephine A. Moran Ms. Kristine R. Moran Carol Morano Mr. and Mrs. Martin F. Moritz Ms. Stephanie Morley Ms. Linda M. Murillo Ms. Bonita Myers Ms. Narketta Myles Mr. and Mrs. Larry D. Nance Mr. Samer N. Narouze Mr. and Mrs. John A. Naska Mr. and Mrs. Robert L. Nathan Neurology & Neuroscience Associates, Inc. Mr. and Mrs. Gregory R. Nichols and Family Mr. and Mrs. James Nolte Mr. Christopher M. Nonno and Ms. Kara Joy Alvey Ms. Emily Norman Northeast Ohio Medical University Dr. and Mrs. Keith G. Novak Mr. and Mrs. Kurt S. Nygaard Ohio Farmers Insurance Co. Mr. and Mrs. Rory H. O’Neil Mr. Dominic R. Oravec Mr. and Mrs. John O’Toole Mr. and Mrs. John W. Palazzo Mary Beth Palmer Mr. and Mrs. Ralph J. Palmisano Ms. Mary V. Parasilite Mr. and Mrs. Joseph Parisi Mr. and Mrs. Joseph S. Parisi Ms. Dyana R. Parker Ms. Elizabeth R. Parker Dr. and Mrs. Michael G. Parker Mr. Howard Parr Ms. Mary G. Parr Mrs. Janise B. Parry Dr. Robert L. Parry and Mrs. Jennifer L. Parry Mr. and Mrs. William C. Parry Ms. Darlene M. Patsey Judy and Phil Pedrotty Karen and Anthony Pendolino Mr. and Mrs. Clifton A. Perren Ms. Ida Perrine Dr. Marjie L. Persons Mr. Alexander Peter Mr. John Peters Mr. and Mrs. Paul J. Peterson Mr. David M. Petkiewicz Mr. Sam Petros Mr. and Mrs. James M. Pfeiffer Ms. Cynthia K. Phelps Mr. and Mrs. David W. Pierce Ms. Irene Pilot Ms. Molly J. Pirie Pleasant Valley Construction Company PNC Bank NA Corporate Office PNC Wealth Management Dr. and Mrs. John F. Pope Mr. and Mrs. Chuck Portier Ms. Shari Poteet Ms. Beth Z. Potere Mr. and Mrs. Steven J. Potirakis Mr. and Mrs. D. Eric Prestegaard Mr. and Mrs. Frank A. Preziuso Mrs. Kathy Pullella Mr. Jon Radulovic Drs. Steven M. and Julia B. Radwany Ms. Stephanie Ramsay Mr. and Mrs. Randall Rankin Mr. and Mrs. Timothy E. Rasicci Mr. Reshmi Raveendran Rea Foundation, Inc. Mr. and Mrs. Derek S. Redwine Mr. and Mrs. Robert P. Reffner Mrs. Nancy L. Reymann Mr. and Mrs. Robert R. Rice Mr. and Mrs. Michael J. Risaliti Mr. and Mrs. Shawn L. Ritchie Mr. and Mrs. Sam Rodriguez Mr. and Mrs. Joe C. Rose, II Rosemount Analytical, Inc. Ms. Adrienne Rosenberg Mrs. Bruce F. Rothmann Mr. and Mrs. Edward A. Russell Ms. Eileen Saffran Mrs. Kathy M. Salem Mr. James K. Salsburg Sand Run Pharmacy Ms. Shirley C. Saxton Mr. and Mrs. Steven E. Schonfeld Mr. John D. Schumacher Mr. and Mrs. Walter E. Schwoeble SeibertKeck Insurance Ms. Shelley Sereni Ms. Rita J. Service Drs. Ajay K. and Kimberly Seth Mr. and Mrs. David R. Shabino Mr. Carl N. Shaheen Mrs. Sadie N. Shaheen Maureen Shannon Mr. and Mrs. John R. Sharp Mr. and Mrs. Steven B. Shechter Elizabeth Sheeler Mr. and Mrs. Timothy D. Sheeler Mr. and Mrs. Robert C. Shoenfelt Mr. and Mrs. William H. Silver Mr. and Mrs. Joseph Siti Ms. Janey Skinner Mr. Richard R. Slocum and Mrs. Eva Katherine Bertsch Ms. Janus Small Mr. Ken Smith Mr. Michael J. Smith and Ms. Jill R. Penrose Mr. and Mrs. Rodney Smith Mr. and Mrs. Steve Smith Ms. Dawn Smoley Ms. Jaclyn Smolinski Girl Scouts from Brimfield created memory boxes for bereaved families. Mr. and Mrs. Mark Spatz Ms. Lynn Spragens Mr. James Srp Mr. and Mrs. Robert T. Stanton Dr. and Mrs. Kim L. Stearns Mr. and Mrs. Thomas J. Stecz Mr. Michael Steel Mr. and Mrs. John P. Stefanik Mr. and Mrs. R. H. Steiger, Jr. Mr. and Mrs. Bryan M. Stephens Ms. Sandra K. Stewart Mr. and Mrs. David H. Stoller Mr. and Mrs. John V. Sturiale, Jr. Sylvart Studio Mr. and Mrs. Michael A. Tallal Mr. and Mrs. Donald P. Tarosky Ms. Lashonda Taylor Dr. and Mrs. Robert L. Tener Mr. and Mrs. Dan Ternosky Mrs. Tina Thiel Mrs. Judith Jones Thomas Linda and William Thomas Dr. and Mrs. Brooks Toliver Totally Cooked Catering Dr. Rodney Tucker Mr. and Mrs. Christopher M. Ulrich United Mitochondrial Disease Foundation United Way of Summit County Vanguard Charitable Endowment Program Mr. and Mrs. Mike Vermeulen Vince Hrobat Insurance Agency, Inc. Ms. Diane L. Vishnia Mr. and Mrs. Rick Vogt Mr. Eric Voth Mr. and Mrs. Robert F. Voth, IV Mr. and Mrs. Donald Vreuls Peggy Vreuls Ms. Kathleen Wagner Ms. Diane Wargo Mr. and Mrs. Brandon W. Watson Mark A. Watson Ms. Sara Jane Wax Mr. and Mrs. Wayne W. Wax Mr. and Mrs. Michael R. Weinsz Ms. Kathryn Weise Mr. and Mrs. Gary J. Weisenburger Ms. Lynn Weissert Dr. Charles V. Wellman Mr. Gregory D. Wells Wellspring Photography West Side Bakery White Pond Crossing, Inc. Ms. Allisa Whitt Carol Whittaker Ms. Lori Wiener Wilbert Foundation Ms. Mary E. Wiles Bernett L. Williams Mr. Conrad Williams, III Ms. Linda L. Wilmot Mrs. Ruby C. Winter Dr. Janine Winters Women’s Board of Akron Children’s Hospital Ms. Kimberly D. Woods Jo and Bill Wooldredge Mr. and Mrs. Randy Wooten Mr. and Mrs. Clayton H. Wright Mr. and Mrs. Robert Xeller Mr. and Mrs. Johnny Yanik Mr. and Mrs. William Yarger The York Children’s Foundation Mr. William Q. Zapf Mr. Emil Zuberbueler 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY 27 2011-2012 Haslinger Family Pediatric Palliative Care Center Report to the Community CASSIDY JACKSON-CZECH of Valley City, OH, created the artwork you see here. At the age of 11, Cassidy painted this, her first watercolor, to represent her vision of the “palette of care team” and the role the team played in her life, as she valiantly battled a rare form of cancer. Cassidy got her angel wings on April 29, 2006, at the age of 12. She was a remarkable young woman who is greatly missed by her loving family and the entire staff at Children’s who helped care for her. One of Cassidy’s dreams was to become a famous artist, known throughout the world. To honor this dream, Cassidy’s painting has been reprinted on the Haslinger Family Pediatric Palliative Care Center brochure and other department materials, and has represented the center in places as far away as Hungary. Cassidy’s artwork will continue to represent our “Palette of Care Program” at Akron Children’s as a permanent tribute to her colorful spirit. About Akron Children’s Hospital Akron Children’s Hospital is one of the largest pediatric Achieved Rankings In: Cancer | Diabetes & Endocrinology hospitals in the U.S. We are proud to be ranked among Nephrology |Neurology & Neurosurgery the best children’s hospitals in the country for pediatric Orthopedics | Pulmonology | Urology specialty care and nursing excellence. More than 780 providers strong, our dedicated staff handles more than 700,000 patient visits a year. As an integrated, independent pediatric healthcare delivery system, we have two hospital campuses and 80+ primary and specialty care locations throughout northern Ohio. Besides expert medical care, we’re leading the way to healthier futures for children and communities through prevention and wellness programs. We are a teaching affiliate of Northeast Ohio Medical University, training a new generation of pediatricians and specialists, and our research institute is advancing pediatric medicine and improving patient care. Akron Children’s has been caring for children regardless of a family’s ability to pay since 1890. For more information, visit akronchildrens.org. Haslinger Family Pediatric Palliative Care Center Akron Children’s Hospital One Perkins Square Akron, OH 44308 330-543-3343 akronchildrens.org 12/13
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