FALL 2017

thebeat

From the Executive Director

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Patient Spotlight

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”Event-full” Moments

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Our Ceritfied Child Life Specialist

Team

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Our NICU Team 10

Introducing “Chevy”

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A TYPICAL DAY IN THE NICUKATELYN ZILLES - FORMER CCLS

COVER PHOTO: LUCAS - PATIENT SPOTLIGHT

Josh Cares Certified Child Life Specialists (CCLS) arrive in the Neonatal Intensive Care Unit (NICU) at 8 a.m. each day, and our first goal is to check in with all of the bedside nurses who care for our patients. We speak with the nurses about how the patient’s night went, how they are doing this morning, what their plans are for the day, if there are any tests or procedures and when a good time to see the patient might be. The highest priorities for us in a day are any experiences we assess as invasive. We look to provide support for these type of procedures at least 90% of the time. Our active support during these procedures is to facilitate increased positive coping and limits the toxic stress our infants are exposed to. Often times our ability to support circumvents the need for sedation medications for minor procedures. After assessing procedural needs, we organize our day to facilitate developmentally appropriate normalization experiences. For our smallest neonates, patients who cannot tolerate much stimulation, this would be simply holding them by their bedside. We are cleared with the medical team to hold patients that are intubated as well as infants with critical tubes. For older babies this includes more interactive play - reading board books, providing normalization, socialization and engagement through music and toys - focusing overall on a positive experience.

Because we are only based in the NICU, our patients are each seen by us on a daily basis for approximately 1-2 hours. This allows for continuity of care and bonding for these patients. In addition to the patient needs during the day we also prioritize interacting with the other family members such as emailing secure updates to caregivers, making sibling support tools (ex: bears with medical devices the sibling has) and spending time with caregivers and siblings when they are present to assess their coping and provide a source of safe psycho-social support. Finally, we celebrate important milestones in the NICU which help take away the harshness of the medical environment. Some of my personal favorites are coordinating a trip to our NICU playroom, first birthday parties and siblings meeting for the first time. The members of the Josh Cares team in the NICU are proud of how we make sure every day that our smallest patients are never alone.

A Dozen Years and Still Going StrongWhen Mark and Ann Helfrich joined Dan and Lynn Pierce to form Josh Cares back in 2005 as a way to memorialize their son Josh Helfrich’s life, little did they know the impact that decision would have on over 1,000 families over the next dozen years.In 2017, the Josh Cares achieved several significant milestones:• 1,000 Patients Served• Over 2 million Donated to Cincinnati

Children’s to Support the Child Life Specialists Program

• Over 12,000 Hours of Care Provided to Patients in One Calendar Year

What all those numbers add up to is a lot of families who have interacted with our

Certified Child Life Specialists (CCLS) in a positive way to help

them through a very tough time in their lives.

This edition of the newsletter will show you what life is like in the neonatal intensive care unit. You’ll also hear one of the patients we have helped—Lucas’s story. We have also included summaries of all our events this year and wrapped it all in a fresh new look thanks to the team at LPK.Finally, in this season of giving I hope you will take the opportunity to visit us online at joshcares.org and make a gift to support the wonderful work our CCLS are doing to improve the lives of the boys and girls we help, and to let the families that surround them know all of us in Cincinnati supports our mission of assuring no child is ever alone while receiving care at Cincinnati Children’s…Josh Cares is “Always There.”

A DOZEN YEARS AND GOING STRONGMATT HUGHES - EXECUTIVE DIRECTOR

Lucas was admitted about a month after he was born due to prematurity, sleep apnea and bradycardia, which is an abnormally slow heart reaction. Lucas’s airway was evaluated, and the medical team and his parents decided to give Lucas a tracheostomy with ventilation in order for Lucas to breathe properly. His new diagnosis and principal problem became subglottic stenosis, a frightening-sounding word that meant Lucas’ tiny windpipe was too narrow and he needed the trach to help keep it open. In late October, the tracheostomy was placed. While still in the NICU, Lucas and his parents, Lexie and Luis received help, support and presence from unit child life specialists, providing photos, documenting milestones such as first bottle, and support during and after procedures. Lexie was able to be present during most of Lucas’s NICU admission, but became very appreciative and open to Josh Cares child life services; situations change, and Lexie and Luis needed extra help and so did Lucas. Lucas was referred to us because Luis and Lexie were young, Lucas was their first child and the family needed social support. They visited as often as they could, but the Josh Cares team began to see him every day to promote normalization, socialization, growth and development—the core values of child life. This was accomplished by holding Lucas, reading to him, exploring toys, and supporting him emotionally for medical procedures. Lucas grew and grew in the NICU, and was soon transferred to the Transitional Care Center (TCC) in early December 2016; under typical circumstances, Lucas and his family would have received a whole new team of child life specialists—new faces in an unfamiliar environment. Not so with Josh Cares, since we follow our patients everywhere they may go: every day, at least one member of our team would see him, play with him, and interact with him. We knew this child, and this child knew us. Often, when I would walk by his room, his smile would invite me to come and spend time with him. I would whip out my camera and

he would smile and look directly into the lens, as if he was the Gerber baby. As Lucas grew older and stronger on TCC, he was able to play with us on a floor mat and really get to explore new toys, stretch and do tummy time, just like a typical baby. He loved his crib gym, both in the crib and on the mat. Other times, I would hold him in my lap and we would read storybooks; he would fold his little hands in his lap and truly listen and look at the pages with the most serene smile on his face. We also began to see a reappearance of Lexie and Luis. By this time, Lucas had been on the TCC for about five months, and Lexie and Luis were excited to get Lucas home. They were finally able to hear the phrase, “discharge planning,” but still had an uphill struggle to find the nursing help they would require once at home. The Josh Cares team as well as the TCC staff felt such empathy for this little family, who just wanted to have their baby at home. On Wednesday, July 25, 2017, I came into the child life staff office, and Amy, my fellow Josh Cares child life specialist, exclaimed excitedly, “Lucas is going home today!” The smile that lit up my face was unlike any other. Things just fell into place.Amy and I gathered our discharge gift, the “Congratulations, Lucas!” banner I had made, along with a balloon and made for the TCC straightaway. We found Lexie and Luis already with Lucas, Lexie holding the now 11-month-old Lucas in her lap; both parents looked beyond happy, pleased, and proud. Lucas looked sleepy, but still managed to look up and smile at us. We congratulated them and shared their joy in taking Lucas home. They expressed their gratitude for our support and care over the past ten months; it was a true joy to spend time with their child, and we thanked them for allowing us to see him, too. I can only imagine what a celebration little Lucas’s first birthday party will be.

PATIENT SPOTLIGHT - LITTLE LUCASLAUREN M. KOEHLER, CCLS

You might not have noticed, but this newsletter looks a little bit different than it did in the past. Thanks to the “Media Blitz” team at LPK (Global Brand Design Agency) Josh Cares got a complete makeover. The results of “The Blitz” produced not only a new overall look, but also a new color scheme, new logo and a new Direction about how the organization presents itself to the public. Thank you so much to Sarah Sideranko Jones and her team at LPK.

NEW LOGO - NEW LOOK

Over the last 13 years Josh Cares has provided money to Cincinnati Children’s to support the Child Life Specialist program. In 2017, those dollars added together helped the organization cross the threshold of 2 million invested in the hospital, and more importantly in our mission that no child should ever be alone while receiving care at Cincinnati Children’s.“In order for us to support the hospital with those dollars we had to do a lot of fundraising ourselves,” said Josh Cares Executive Director Matt Hughes. “Behind the 2 million are thousands of donors who made gifts as small as one dollar up to gifts in the tens of thousands.”“We are blessed to have individuals, companies and foundations that believe in our mission and have made the decision to share some of their financial bounty with us. At a ceremony in late October, Cincinnati Children’s recognized Josh Cares for the 2 million achievement. Hospital Board

President Jane Portman presented Josh Cares founders Dan and Lynn Pierce and Ann Helfrich (Josh’s Mom) with plaques at a ceremony attended by friends and supporters of Josh Cares. Josh Cares Board President Pete McConney thanked the donors in the room for representing thousands of others not in attendance for making this milestone possible. Pete also thanked the seven current Josh Cares Certified Child Life Specialists for the work they do every day to make sure patients are cared for in a loving way.Matt ended the ceremony by letting the hospital know that while it is always nice to look backward and celebrate successes and achievements, the Board of Directors realizes the other eye must be trained on the future. With that in mind, he announced that Josh Cares would be taking on a new 1.2 million pledge to support the Josh Cares Certified Child Life Specialist program over the next three years.

Everyone loves a party, and boy was this year’s iteration of Josh Cares’ annual Spring Affair, a soirée to remember. Held on Saturday, April 29 at the 21C Museum Hotel, this year’s event was themed “Care to Party—A Party for Josh Cares. “The Marsh McClennan Agency served as the presenting sponsor of the Spring Affair this year with major support also coming from PLK and its employees, Premier Mail & Fulfillment, Fifth Third Bank, Collette Masonry and the JK Meurer Corp. Rounding out the team helping to make the event a financial success were: Wendy & Jim Barney, Carolyn & Mike Collette, Ann & Mark Helfrich, The Joshua Helfrich Foundation, Joseph & Marti Otto, Lynn & Dan Pierce and Robert VogtAs always all proceeds support the annual mission of the organization—assuring that no hospitalized Child is ever alone. In its 12 seasons of supporting Josh Cares the event which started as “Fire and Ice,” and now known as the Spring Affair has helped to raise over $1 million.Money is currently directed each year to support a special group of employees who serve as Certified Child Life Specialist at Cincinnati Children’s. Last year Josh Cares supported six employees who provided over 14,000 hours of work at the hospital – holding a hand, rocking a child to sleep, playing games, coaxing a smile and helping each and every boy and girl to get through a difficult time in their lives. The ability to help the Josh Cares boys and girls through the hiring of the Child Life Specialists is only possible because of the generosity of not only the sponsors listed above but over 75 couples who purchased tickets to attend the event. To all who supported the event, thank you for having the faith in Josh Cares to transform your financial blessings into medicine, books, toys, blankets and professionals all dedicated to one mission.

A great party takes time and money to be pulled off successfully. As in past years, two of Josh Cares founders, Lynn and Dan Pierce, have provided the underwriting for this event, once again assuring in 2017 that 100% of every dollar donated to this event goes directly towards the care of the Josh Cares patients. Thank you to Dan and Lynn for your unwavering support and dedication to the organization. Lynn also continued her leadership of the event planning committee by pulling together a great group of volunteers including Wendy Barney, Tracy DiGennaro, Karen Grimes, Sheryl McConney, Monique Sewell and Leigh Anne Meurer. From the invitations, to the decorations, food and entertainment, thank you ladies for a job well done. The fruits of your labors are abundant and we appreciate your talents spent prior to the event to make “Care to Party” a smashing success.

INVESTMENT WITH A PLEDGE SPRING AFFAIR

L to R: Matt Hughes, Pete McConney, Ann Helfrich, Lynn and Dan Pierce and Jane Portman celebrating Josh Cares reaching 2 Million in donations to the hospital.

Ashley Keating and Leigh Anne Meurer dancing at the Spring Affair.

Mary Cassidy, Buffie and Eppa Rixley and Spring Affair Event Chair Lynn Pierce enjoy conversation.

Mother Nature did not provide the optimal conditions for the 5th Annual Josh Cares Food Truckin’ event, but for those who were able to attend the event at Fountain Square in downtown Cincinnati, the sun came out late and our wonderful food truck partners served up another serving of yummy food for everyone to enjoy.There were 15 trucks at this year’s event, including four trucks participating in Food Truckin’ for the first time. Bob and Marianne from Warm 98’s morning show returned to host the event and along with staff from 3CDC provided some great interviews

previewing what guests could eat for lunch.

Cincinnati Mayor John Cranley also participated in the

event by hand delivering a proclamation naming it Josh Cares Food Truckin’ Day in the city. Always the politician, he would not say which was his favorite food truck. He did not want to sway the voting for the 2017

Golden Spatula competition honoring the best entree and best dessert of the day. Handling the judging for the event were the aforementioned Bob and Marianne, Nelson Castillo, managing partner at Prime Cincinnati and Matt Hughes, the executive director of Josh Cares. While there was no voter tampering on stage, the sin of gluttony was front and center and the four judges sampled dishes from all the food trucks. In the end, the Golden Spatula for the entree went to Just Jerks and the Golden Spatula for dessert went to Sugar Snap.The annual Food Truckin’ event is a fundraising project put on by the Josh Cares Junior Board. There are almost 20 young professionals on the Board, and they worked on marketing for the event, handling all the logistics including rounding up all the food trucks and selling sponsorships and tickets to the guests of the event. Joining the Junior Board were a team of over 40 volunteers who worked the day of the event to help raise money for Josh Cares. Thank you so much to everyone who made the event a special day for Josh Cares.

FOOD TRUCKIN’ IN THE RAIN!In a game where the lowest score is usually reserved for the winner, it was a high number to celebrate at the 7th Annual Josh Cares Golf Tournament. Over $52,000 was raised at the tournament which was held for the first time at the Heritage Golf Club in Mason, Ohio. 80 Golfers participated in the event which was underwritten by a generous grant from Systems Evolution Inc (SEI). Other sponsors include Joe Otto, Premiere Mail & Fulfillment, Marsh McLennan Agency, the Marvin Lewis Community Fund, Prime Cincinnati and 84.51.Prizes were awarded for the longest drive, longest putt, closest to the pin, as well as to the first place and second place teams.

Josh Cares would like to thank the Tournament Committee comprised of Matt Werner, Don Korengel, Greg Schweppe, Pete McConney and Hans Zimmer. In addition, two special ladies once again put together an awesome Yeti Cooler of Adult Beverages and sold chocolate bars chances to win it. Thanks to Maria Korengel and Meredith Blum for raising over $5,000!Thank you also to over 30 hole sponsors and 18 people who donated auction items all of which made our seventh Tournament a day to celebrate.

2017 JOSH CARES GOLF TOURNAMENT

Just Jerks Best Entree

Sugar Snap Best Dessert

Cincinnati Mayor John Cranley presents Josh Cares Executive Director Matt Hughes with proclamation declaring it “Josh Cares Food Truckin’ Day” in Cincinnati

Team Members from SEI at the Josh Cares Golf Open

This year’s Chocolate YETI Raffle raised over $5,000!

Team Members from SEI at the Josh Cares Golf Open

BRIDGET NESBITT (BS, CCLS) Joined our team in April, 2017Bridget spent the early part of her life moving as her parents served in the Military. She most recently lived in WI, where her parents, brother, sister, brother-in-law, and sweet little nephew currently live. Bridget loves to travel and has a personal goal to see all the places her family comes from. Bridget enjoys the arts and loves to sing and hopes to find some opportunities in the area.Prior to Josh Cares, Bridget spent many years working as a Nanny, creatively bringing learning opportunities, adventures, and joy to the children she served. She spent 7 years prior to Child Life working at a Behavior Health hospital with the children and adolescents in their Residential program. Here, she listened, engaged the kids in normalization, and provided emotional support as they underwent treatment. Bridget’s first position as a Child Life Specialist was also with hospitalized children with Behavioral Health challenges; supporting them through procedures, spending time with them when they were upset, and engaging them in play.Bridget transferred to the Josh Cares team in April 2017. Her favorite part thus far is the team effort and nurturing component the team gives in addition to the traditional clinical role. What she loves most are the opportunities to see these precious little souls grow and overcome their challenges. “The smiles, belly laughs, and pure joy on their faces as they play and get the chance to experience what a child (hospitalized or not) should.”

OUR CERTIFIED CHILD LIFE SPECIALIST TEAMWelcome to our newest Josh Cares team members! We have evolved over the past year with numerous departures due to people moving or choosing to stay home with their young children. We have been blessed with many talented and devoted team members over the years and are very lucky to have the wonderful and passionate current team members described below.

AMY MCGRORY (MA, CCLS) Joined our team in February, 2010Amy has been married to husband, Sean, for 29 years and they have three children, Madalen, Michael and Colleen. Her daughter, Madalen, is engaged to be married to Jeremiah in May of 2018. Amy and Sean have one cat, Ginger and one dog, Sophie.

Amy has been with Josh Cares since 2010 and began her career as

a Child Life Specialist after spending many years at home

when her children were growing up. Prior to that, she taught high school English.Amy has been passionate

about the field of Child life and Josh Cares since her

days as a CCHMC volunteer. She especially loves serving

this vulnerable population of children and families as the need

for psychosocial support can be quite significant. There are so many aspects of this job that Amy loves, but one favorite is working with facility dog, Chevy. Amy is a secondary handler for this gentle Golden Retriever and hosts a weekly preschool story time on Seacrest Studio with Chevy called “Dog Tales.” Amy is “thrilled to be able to provide therapeutic visits with Chevy and, through Seacrest, impact many patients and families—Josh Cares patients and others-- who are too ill to come out of their rooms or are in isolation.”

BARI BATES (MA, CLS) Joined our team in May, 2017Bari is a recent transplant to Ohio from Chicago, by way of Missouri, Texas and Wisconsin. She has moved around a lot but is looking forward to making Cincinnati feel like home. When not at work, Bari likes to run, cook, and read any book she can get her hands on. Bari earned her MA in Human Development and Family Science in 2017 and her Bachelor of Journalism from the University of Missouri in 2013. She is the newest member of the Josh Cares team! Bari’s favorite part of the job is being able to get to know patients through the course of their hospitalization—silly inside jokes are her favorite! She loves that the team

gets to spend a substantial amount of time working with patients

toward normalization in terms of developmental goals. “I get to see how playtime can work magic in the hospital!”

LAUREN KOEHLER (BS, CCLS) Joined our team in March, 2016Lauren has been married to husband Steve, since June 2013, and have three (yes, three…) cats named after Sherlock Holmes’ characters: Mrs. Hudson, Irene, and—of course—Sherlock. She loves to run, and has been a runner since 2008. She ran her first half-marathon in November 2016 for the Honor Flight of Northern Kentucky. In 2019 when the Star Wars portion of Walt Disney World opens, Lauren plans to visit and then run The Avengers Half-Marathon. She describes her husband and herself as “huge nerds.” They regularly attend in- and out-of-state conventions, including Cincinnati Comic Expo, ColossalCon in Sandusky, OH and Comic Con in Louisville, KY. Lauren earned a Bachelor of Science from EKU, and became a Certified Child Life Specialist in 2015. She was a Child Life Assistant at CCHMC in CBDI since 2013, and a Child Life Assistant at Shriners Hospital, Cincinnati in 2013. Prior to that, Lauren was an Infant Preschool Teacher at The Goddard School, Ft. Mitchell, KY. Lauren’s favorite part of being a Josh Cares child life specialist is the unique bond we develop with our children on various units throughout the hospital. “Even the youngest of our patients light up when one of us enters his or her room, as if they have been waiting their whole day to see one of us. That feeling truly warms my heart.”

UNCONDITIONAL LOVE - CHEVY’S HEALING TOUCHJOSH CARES NICU TEAMOur neonatal Certified Child Life Specialist team takes care of our smallest patients every day. The featured article on page 1 demonstrates what an impact they have in making these babies feel valued and loved as they go through treatment at Cincinnati Children’s.

While our Certified Child Life Specialist take great care of our patients, there’s one member of their team who makes visits with patients extra special—and cuddly. In 2017 Cincinnati Children’s welcomed Chevy to our team. Chevy works 40 hours a week, alongside his two handlers Katie Sullivan and Amy McGrory. His selfless and lovable demeanor brings a smile to each child’s face. Research has shown that dog assisted therapy can lower stress and anxiety levels, affect blood pressure, increase patient mobility and provide an alternative focus from pain. And Chevy does just that. “We are happy to be able to have Chevy working as part of the Josh Cares program as part of his overall responsibilities ,” says Amy. “On a daily basis, he visits Josh Cares patients at their bedside, participates in play sessions, calms patients during procedures, motivates kids to get out of bed after surgery, offers a listening ear and makes the hospital environment more ‘normal’.” Chevy also hosts a weekly television show called Dog Tales in the Ryan Seacrest Studio. He is known for being a social butterfly and rarely meets a stranger.

EMILY SMITH (MA, CCLS) Joined our team in April, 2017Emily comes from a small town in NW Ohio and have lived in Cincinnati for 4.5 years now. She says that her Australian shepherd mix, Willy, is her child. Emily enjoys running, hiking, cycling, crafting, reading, and exploring new coffee shops throughout the city. Prior to joining Josh Cares, Emily worked for 4 years as a CCLS in the Emergency Department. Emily recently spearheaded and is continuing to develop a hospital-based summer “camp” that will take place August 22nd-24th. She explains, “We will be taking activities that kids would be able to do at a regular camp and adapting them to the hospital setting. For instance, there will be inflatable archery and fishing for pretend fish. We will have imitation campsites set up so that kids can take part in tent chats, singing songs around the “campfire” and so much more. The idea behind this project is to add a therapeutic value to hospitalization and normalize the hospital environment. Kids don’t come to the hospital expecting to be able to experience summer camp- so we are creating some unexpected fun experiences for them.”Emily enjoys getting to know our patients and families really well over long periods of time. Her favorite part about the job is “connecting with patients and families and being a supportive presence during big moments, both happy and sad.”

MOLLY EICHE (BA, CCLS) Joined our team in March, 2017 Molly has been working in the Child Life field since 1998 and has had the privilege to work with many different populations and specialty areas within the hospital

setting. Most recently, she worked for Norton Healthcare in Louisville, KY and

was a child life specialist there for 8 years. Molly provided support in the Emergency Department, Surgery, inpatient unit, NICU and other areas throughout the hospital. Molly

recently moved to Oxford, Ohio with her husband and three children Luke 15,

Lilly 12, and Lola 8. Molly is a vegetarian, loves animals, nature, laughing, being creative and eating sweets!Molly absolutely loves working as a NICU Josh Cares Child Life Specialist. “It is an honor to be a part of their tiny lives and help nurture and support them along their journey of healing. From the first time they smile, to taking their first bottle, each milestone is a celebration and they will forever hold a special place in my heart.”

MELINDA “MINDY” ROUX (BA, CCLS) Joined our team in October, 2011Mindy is married to husband Alex and they have a baby boy on the way, due in November! They also have 2 cats, 43 bee hives and many farm animals including cows

and chickens.Mindy enjoys running, spending time outdoors, relaxing, spending time with family and friends, especially if it’s anything Ohio State related!

Mindy loves the genuine concern and care for this population of

children. Her favorite part about the job is “how well we get to know the patients and how we advocate for them.”

WORDS OF THANKS TO OUR DONORSRead about our terrific team of passionate care providers on

the Josh Cares team. We could not do the work that we do without your generous support.

Thank you so much to everyone who helps make this program possible—we’re lucky that we get to be part of these tough moments with our patients to offer much-needed support and care, and none of that would be able to happen without generous supporters.

Thank you, thank you, and thank you for your continued support for children who face hospitalization alone. Serving the children we serve is an honor and privilege, and it would not be possible without you.

The services we provide make a huge impact on the families we meet. It’s great to see the look of relief on their faces when we introduce our services. In that moment, they know that someone will be providing their child TLC when they cannot be at their side.