It’s been proven again and again, dogs provide healing therapy to those suffering through illness and recovery. Meet Drummer, one of two facility dogs that joined Cincinnati Children’s in February from Canine Companions and is handled by Josh Cares CLS, Ashley Fiffick. Here is Ashley’s story on her new life with Drummer by her side.

Life with Drummer by Ashley Fiffick Rivet

After working as a Josh Cares Child Life Specialist for 1.5 years, my practice changed dramatically on February 8, 2016. I acquired a new, very valuable tool that supports patients, siblings, and families of the Josh Cares population. This new “tool” is by my side 40 hours a week, weighs 65 pounds, walks on four legs, and makes life in the hospital more comfortable, calming, and furry. I am therefore privileged to be one of two primary handlers for the new facility dog program at Cincinnati Children’s.

As a facility dog, Drummer was born and trained at Canine Assistants near Atlanta, GA. The agency Canine Assistants has been training service dogs since 1991, placing their dogs with individual recipients with physical disabilities/special needs and now with handlers in pediatric hospitals. To date, Canine Assistants has placed over a dozen dogs in hospitals in: Georgia, Kansas, Texas, Michigan, and now Ohio. The team of hospital facility dogs at Cincinnati includes two dogs (Drummer and Leica- pronounced “like-uh”), one primary handler for each dog, and 2 back-up handlers for each canine, including Amy McGrory, also a Josh Cares Child Life Specialist. The team

of handlers spent a week in Atlanta in early February training and getting to know the dogs before all returned back to the hospital.

Drummer shares a relaxing moment with Nathaniel, a patient in the

Hematology/Oncology unit.

Drummer is a wonderful addition to the Josh Cares program. 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’. Take three-year-old Mkenzy, for example. After staying at Cincinnati Children’s for over four months, she had an extensive abdominal surgery that left an incision from hip to hip. We know that getting out of bed after surgical procedures promotes healing, but for Mkenzy, this was a painful task. In collaboration with the nurse, we were able to get Mkenzy up and walking within just a day of her surgery by having her take Drummer for a walk. After she grasped the leash and put her feet on the floor, the pain melted away and she was able to complete this task with a smile on her face.

Drummer also serves as a great support tool for staff. I once was on a unit on which a Code Blue was called. A Code Blue constitutes a medical emergency in which a patient’s heart stops beating and/or they stop breathing. The “Code Team” rushed into action, assembling very quickly from different parts of the hospital. Once at the patient’s bedside, they begin pushing medications, watching vital signs, inserting breathing tubes, and starting CPR. As most can imagine, this is a very emotionally taxing event for all staff. Drummer and I sat quietly on the sidelines, offering a moment of comfort, non-judgment, and calmness, which many staff were pleased to accept.

Overall, working with Drummer has been the highlight of my career thus far. I am proud to participate in the unique and innovative program that is the facility dogs. Perhaps the best thing about having Drummer by my side is that I am simply the handler; Drummer performs the magic, and I am there as his guide. At times, he is my guide as well. He teaches me to listen deeper, forgive quicker, increase my patience, and go with the flow.

Josh Cares, Inc. 7870 E. Kemper Rd, Suite 400

Cincinnati, OH 45249(513) 459-1911 • joshcares.org

Contact@joshcares.org

JOSH CARES BEAT

Letter from the Executive Director

Page 2

Hero Spotlight

Page 3

Our Priorities

Page 4-5

Events

Page 6

Quick Facts

Page 7

Ruth Lyons Award

Page 8

SPRING 2016

Meet Drummer, our tail-wagging companion

Mkenzy and her pal, Drummer.

JOSH CARES MISSIONTo provide companionship and support to critically and

chronically ill children hospitalized within Cincinnati Children’s. Josh Cares Child Life Specialists serve as a consistent presence for, and links to, the families who

would be by their child’s side if they could.

JOSH CARES VISION

To ensure that no critically ill child feels alone and afraid

while hospitalized.

RECENT GRANTS RECEIVED The Butler Foundation

CCHMC Community Relations

John and Shirley Davies Foundation

Thomas J. Emery Memorial

Good Charity

The Carol Ann and Ralph V. Haile, Jr./U.S. Bank Foundation

Heritage Hill Foundation

The Andrew Jergens Foundation

The Linnemann Family Foundation

Meshewa Farm Foundation

Jack J. Smith, Jr Charitable Trust

And our ongoing thanks to the Charles H. Dater Foundation for their continued leadership support of our efforts in the Newborn Intensive Care Unit.

May 2016

Dear Friends of Josh Cares,

I am honored to be the new Executive Director of this one-of-a-kind organization that serves patients whose families are experiencing a wide range of barriers that prevent them from providing their child with the consistent support needed as a result of hospitalization within Cincinnati Children’s. For these particularly vulnerable children and their families, Josh Cares Child Life Specialists serve as a true lifeline – providing emotional stability, a consistent presence, and often a reason to relish in the “small joys” of everyday life.

The power and impact of the child life profession continually amazes me. Daily, our Josh Cares Child Life team, full of commitment and passion, works to find creative ways to support these pediatric patients so they can cope with, and thrive beyond the often stressful events that occur due to their hospitalization and illness. In this issue, we focus on our new, furry companion who is easing fears and provides a calming style of tail-wagging comfort. We are also sharing some stories of our patients, past & present.

As Josh Cares enters its 11th year, my goal is to broaden the awareness of, and support for, the amazing work done everyday by our Josh Cares Child Life Specialists. The entire Josh Cares team is acutely aware of the adage “The whole is greater than the sum of its parts,” and are continually grateful for all of the support we receive from thousands of donors (individual, corporate and foundations) and hundreds of volunteers who, also, believe in our mission to ensure that no ill child faces hospitalization alone.

Thank you for your continued support and Happy Spring!

Sincerely,

Kelly Flood, Executive Director

EXECUTIVE DIRECTOR NOTE

2

Former patient still thriving in his medically complex world“My name is Emmanuel Evans but I go by Manny. I was diagnosed with neurofibromatosis or NF1 when I was six months old. I spent my first three years in and out of the hospital, but then my tumors started growing very quickly and I needed such complex medical care that my mom could no longer care for me at home. I then spent almost eight years living in Cincinnati Children’s Hospital.

“I have café au lait spots all over my skin, my head is a little bigger than most people’s, and I have tumors throughout my body including my brain, my optic nerves, my heart, my intestines, my kidneys, my trachea, and my lungs. I also have a few small external tumors and ADHD. I can walk and talk like everyone else, but I have to use a power wheelchair since I can’t walk very far due to the tumors affecting my breathing and the heavy equipment that has to go everywhere with me.

“I have a tumor that closes my airway so, when I was two, doctors performed a tracheostomy to allow me to breathe. Since I also have tumors on my lungs, I have to use a ventilator to help me breathe too. However, I have been working hard and have been able to breathe on my own for most of the day. I primarily use the vent when I sleep or get tired. Because I have so many tumors throughout my intestines, I have a g-tube in my stomach with a bag attached. At age three, I had to have a central line (which is like a permanent IV) placed in my chest because it was the only way for me to get nutrition. I get my IV fluids, called TPN and lipids, at night, mostly while I am asleep. But I have to get ‘hooked up’ at 6:00 p.m. since they run 12 hours and I have to be done before school in the morning.

“Living in the hospital for eight years was hard sometimes but they took excellent care of me. They never gave up on me and I am forever grateful to Cincinnati Children’s Hospital and all the doctors, nurses, respiratory therapists, child life specialists from Josh Cares, (www.joshcares.org), and everyone else that works there; they were my family for almost a decade. They not only took care of my medical needs, but also my emotional and social needs. It was like having 200 parents!! My other constant friend was Thomas the Tank. I still love Thomas even though I am now 12 years old.

“When I turned seven, I finally got to start school. I had to have a nurse go to school with me every day. I got to ride a real school bus that picked up me and my nurse at the hospital. After my first year of being able to leave the hospital for school, the child life specialists from Josh Cares thought it would be difficult for me to have to spend the entire summer stuck in the hospital. So they arranged weekly outings for me! Nurses from the home care

department and Josh Cares took me to movies, amusement parks, and plays. I even got to ride in a helicopter and actually fly an airplane!

“When I was nine, one of the home care nurses asked me if I wanted to come live with her family. I wanted a home more than ANYTHING. It took a while but, finally, I got a real home and a new family! I have been home for two years now and I even have a dog, two cats, and a turtle!

“Since I have been home, I have been to Champ Camp (for kids with trachs) twice and am going again this year. I went to Florida and got to put my feet in the ocean, and this summer we are going to Disney World!

“Living with NF can be hard because I want to be like everyone else. Having to have a trach and a central line makes me sad sometimes because it means that I can’t always do what my buddies are doing. But thankfully I have great friends who don’t treat me any differently than anyone else.

“I hope there is a cure for neurofibromatosis someday so that all us NF Heroes can just be kids.”

HERO SPOTLIGHT

Continuing to find joy in the little thingsCourtesy of the Children’s Tumor Foundation (ctf.org)

Manny Evans, today at age 12.

3

Special thanks to Debbie McQuade of T&D Graphics in producing this newsletter.

MEET JOSH CARES PATIENTS

On any given day, averages of 25 critically and chronically ill children are receiving care at Cincinnati Children’s without the consistent support of parents or guardians by their side. Josh Cares Child Life Specialists work tirelessly to provide comfort and support to these vulnerable patients so they can cope with, and thrive beyond the often stressful and traumatic events that occur daily. Take a glimpse at some of the patients and families we support and touch along the way.

Vanessa’s Sound of MusicJust like the von Trapp children in the musical, The Sound of Music, baby Vanessa loves to sing! Sing-a-long parties and competitions with her Josh Cares family creates smiles and make a long-term stay in the hospital a fun way to spend the day.

Vanessa is clearly enjoying herself singing, smiling and having fun, thanks to Josh Cares CLS, Katelyn. That’s what happens when Josh Cares specialists become an integral part of the healing process. A special relationship blossoms between patient and caregiver. Vanessa is

one of triplets who spent most of her first year at CCHMC.

Josh Cares CLS, Katelyn and Vanessa sing!

Vanessa and her brothers were in the NICU for an extended time and gradually she progressed and was transferred to the Transitional Care Center. Little Vanessa was the perfect candidate to receive the special treatment Josh Cares patients receive. Her premature birth at 27 weeks required extra support for her lungs and a shunt to help relieve the excess fluid buildup on her brain.

Vanessa progressed into the Transitional Care Center which was integral to her development. While her family was stretched thin caring for her brothers and a four-year old sibling at home, the playtime and social interaction provided by Josh Cares has made Vanessa thrive.

Vanessa TodayToday, Vanessa is home with her family in Union, KY and doing well with the support of home healthcare nurses. She’s 18 months old and Josh Cares was thrilled to help celebrate Vanessa and her brother’s 1st birthday at CCHMC! Vanessa’s progress is good and she should be able to have her 2nd birthday at home. Now that’s something to celebrate!

In the years ahead, Vanessa will continue to be challenged by her significant health complexities due to her premature birth. However, it’s reassuring to know that should she need to be readmitted to CCHMC, Josh Cares will be immediately available to assist and support her.

A New Year’s Resolution for JoshA one-year-old with a New Year’s Resolution?! Well, not quite. How about the New Year’s Resolution of Josh Cares for a very tiny patient of the same glorious name, Josh! In April 2015, at the tender age of five months young, Josh received a brand new heart. Since he was a mere one month old, Josh Cares has been by his side snuggling, singing and providing much needed TLC. And, it all paid off. Josh Cares accomplished its New Year’s Resolution and Josh was released to his loving family in January, 2016.

Not only did Josh Cares provide loving support to Josh, but to his big sister, too. When Josh received his tracheostomy, his sister was given a Trach Bear to snuggle and to help understand what her little brother was going through. Books and therapeutic playtime were part of the plan for

Josh’s sister too. Helping the family sort through the rapid and overwhelming number of changes in Josh’s life was necessary to teach the family how to evolve with Josh’s changing needs.

Josh enjoys playtime.

Josh Cares specialists treated Josh to lots of playtime on the mat, snuggling in tender, caring arms and staying by his side. While receiving

treatment, Josh really responded to lots of musical sound making activities, including shaking his rattle.

Aaron’s Heart of GoldAaron’s been challenged medically since birth. Even so, he has a heart of gold and a brilliant smile. Born with multiple medical issues, specifically Tetralogy of Fallot, or cardiac malformation, Aaron is also tracheostomy and ventilator dependent. He’s 19 months old now and living at home with mom and dad. Early on though, Aaron’s home away from home was here at Cincinnati Children’s Hospital Medical Center with the Josh Cares team of Child Life Specialists.

Born in September, 2014, Aaron faced a variety of complex medical issues, but through regular therapy and developmental growth, he’s improved to the point where he’s not completely dependent upon a ventilator and can spend much of the day without it. Holistic Health Specialists provided medical massage at various times while Aaron was intubated and in the CICU early last year. He was able to go home to his family, but still returns to CCHMC for respiratory management whenever necessary.

Aaron smiles big for the camera.

Just like other 19 month old children, Aaron loves time on the playmat. He sits up with support and has begun to crawl. Pulling himself up to stand makes him smile brightly. Aaron happily dances and loves to move with the music. His mom and dad couldn’t be more appreciative of the support they’ve received from CCHMC and Josh Cares, as they live in Virginia and visiting Aaron was limited.

4

Neveah’s Beads of CourageColorful beads that commemorate every milestone achieved during a child’s treatment are called Beads of Courage. Of course, Neveah is too young to understand the major strides she’s made, but her family easily understands what they represent.

Neveah and her “Beads of Courage”

Neveah’s journey began at only 24 weeks gestation, which of course, means a tiny and premature baby. Because of her size, holding Neveah was a real treat. A breathing tube also made snuggling challenging, but not impossible. Little Neveah has triumphed through it all and is now home with her loving family after spending seven months in the NICU.

While Neveah was being cared for by the Josh Cares team, she received a gastrostomy tube, or G-Tube, commonly known as a feeding tube. To help her big sister understand the complexities Neveah faced, the Josh Cares team gave Neveah’s sister a stuffed animal with a G-Tube. As Neveah

improved and grew healthier, she was able to enjoy bath time in the tub, playing and being held by her family. Josh Cares Child Life Specialists even made a scrapbook for the family that documented Neveah’s progress during her stay in the NICU.

Neveah is home now with her family, still maintains the G-Tube and receives some oxygen support. Home care nurses visit and help Neveah and her family every week along with regular follow-up visits to CCHMC. To learn more about the Beads of Courage program, visit www.beadsofcourage.org.

A Ray of SunshineSweet baby Ray was born without functioning kidneys and spent over six months at Cincinnati Children’s waiting for a healthy kidney. He’s the youngest of three siblings, who also have demanding healthcare needs. Ray’s parents have their hands full between work and caring for their other children. Being able to stay at the hospital and comfort Ray presented its own set of challenges, emotionally, from a parent perspective and, logistically, from a geographic perspective, since they don’t live close to the hospital. While Ray waited for a new kidney, he received dialysis treatments five times per week until a kidney became available.

Ray gets moving.

Josh Cares Child Life Specialist, Katelyn, reflects on a special memory...

“It had been only a few days since Ray had received his kidney transplant and he was extremely uncomfortable due to the swelling and retention of fluids. When I checked on him, he recognized me well enough to let me hold, rock and comfort him. According to his bedside

nurse, he’d been very restless and unable to fall asleep due to his discomfort, but immediately relaxed and rested in my arms. A few minutes into the snuggle session, Ray’s mom [who was his kidney donor!] was wheeled into his room. Her eyes immediately welled with tears and I thought it was due to Ray’s swollen appearance. She quickly explained that her tears were those of joy and relief seeing Ray was being held after his transplant, since she was still too sore to do so herself.” Katelyn also revealed this statement from Ray’s Mom, “Knowing that Ray is being taken care of by the Josh Cares team helps both of us heal. I knew he wasn’t just left in his crib all day.” All of this provided Ray’s mom a tremendous amount of comfort.

Reflections of a MotherWhile thinking about the services Josh Cares provides, Ray’s mom said, “They are a great and caring group of people who are constantly trying to do their best to make families feel at ease. They are especially great at helping siblings feel included and needed and help provide coping mechanisms to put them at ease.”

While Ray was in the care of Cincinnati Children’s and Josh Cares, he was treated as a parent would care for their own child. Josh Cares Child Life Specialists spent quality time with Ray. They collaborated with Ray’s medical team to assess daily needs and coping requirements. They organized trips to the playroom for developmentally appropriate play. They brought him educational toys and books and they read to him. They also provided a variety of sibling scrapbooks and transplant prep books to help Ray’s siblings understand what their brother was dealing with. Additionally, they supported Ray’s mom while she endured separation from her son post-transplant [she donated her kidney to save her son!]. Lastly, and very importantly, Josh Cares Child Life Specialists supported Ray throughout multiple medical tests and procedures including ultrasounds, EKG’s and all of the pre-transplant prep work.

It’s patients and families like Ray’s that make Josh Cares mission worth it all. To be able to assist families with medical needs like Ray’s and so many other young children with families who struggle to be with them during major medical situations and events is why Josh Cares exists.

MORE JOSH CARES’ PATIENTS

5

Thanks to PLK Communities and its employees, as well as a number of other dedicated sponsors, Josh Cares pulled off a new Spring Affair—this year with a British Flair. On April 23rd, a group of about 180 fun-loving party-goers descended on Kenwood Country Club for a unique evening of live music, British food and plenty of cocktails and brews fit for royalty. It was a fun evening, enjoyed by longtime supporters and many new faces. It was great to see that the message of Josh Cares is being recognized by a new generation

of supporters who can help spread the word of our wonderful organization. Many thanks to everyone who came out to enjoy this new event in support of Josh Cares and its mission to ensure that no child faces hospitalization alone.

Food Truckin’ for Josh Cares returns to Cincinnati’s Fountain Square on Wednesday, June 8, 2016 from 11:00 am-2:00 pm and promises to build on the great success of prior years with an expanded food truck selection and continued partnership with Presenting Sponsors, Kroger and P&G.

Now in it’s fourth year, Food Truckin’ for Josh Cares is a Josh Cares’ Jr. Board-driven event aimed at raising funds for and awareness of, the Josh Cares Child Life Program at Cincinnati Children’s Hospital Medical Center. Not only has Food Truckin’ quickly become a signature downtown fundraising event, it also works to promote the vibrant life and work community of Downtown Cincinnati.

In 2015, Food Truckin’ for Josh Cares raised close to $40,000 to support the Josh Cares Child Life Program. Typically, an estimated 2,000+ people attend this lunchtime event on Fountain Square, where they enjoy cuisine from dozens of diverse trucks including such favorites as: Red Sesame, Empanadas Aqui, C’est Cheese and more! And for those with a sweet tooth, we have included trucks such as Dojo Gelato and Street Pops.

Highlights of this year’s event will include: Denise Johnson from Fox 19 as celebrity emcee, hosts Bob & Marianne from Warm 98, “Golden Spatula

Awards” chosen by local restaurateurs and chefs, plus other tasty surprises. In addition, our Josh Cares Student Advisory Council will be displaying their impressive “Chain of Love” links signifying a year’s worth of grassroots fundraising efforts executed solely by local students on our behalf.

So, bring your family and your friends on Wednesday, June 8th for lunch on Fountain Square, with proceeds benefitting Josh Cares.

JOSH CARES EVENTS

Junior Board Keeps on Truckin’

A Spring Affair, The British Are Coming!

THANKS TO OUR SPONSORS & SUPPORTERS:

CONFIRMED FOOD TRUCKS Andy’s Mediterranean Kabobske Mobile

Catch-a-Fire Pizza

C’est Cheese

Dojo Gelato

Eli’s BBQ

Empanadas Aqui

Hungry Bros.

Red Sesame

Rhino’s Frozen Yogurt & Soft Serve

Snowie Shaved Ice

Street Pops

Sugar Snap!

SPRING AFFAIR – THE BRITISH ARE COMING!

Royal Presenting Sponsors:

PLK Communities and its Employees

Noble Chaps:

Marsh & McLennan Agency

Systems Evolution, Inc.

Posh Fanatics:

Jim & Wendy Barney

Mike & Carolyn Collette

Fifth Third Bank

Joshua Helfrich Memorial Foundation

Premier Mail & Fulfillment

Loyal Mates:

JR & Kadi Anderson

Gary & Laura Bohn

Cincinnati Mine and Machinery

Dinsmore

Alex & Kathy Saba

Velocity

6

QUICK FACTS ABOUT JOSH CARES

7

Josh Cares, Inc.7870 E. Kemper Rd, Suite 400

Cincinnati, OH 45249

NON-PROFITUS POSTAGE PAID

Cincinnati OHPermit No 7312

UPCOMING EVENTS:

FOOD TRUCKIN’ FOR JOSH CARESWed., June 8, 201611am–2pmFountain Square

JOSH CARES GOLF OUTINGThurs., September 15, 2016Terrace Park Country Club

Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to Josh Cares whenever you shop on AmazonSmile.

BOARD OF DIRECTORSJim BarneyAshley Carrico Mike CoxMike ColletteAnn HelfrichPete McConney

JP Pharr Dan PierceLynn PierceKathy Peterson SabaPatti WuennemannHans Zimmer

EXECUTIVE DIRECTORKelly Flood

joshcares.org

http://www.facebook.com/joshcaresforchildren

For the thousands of families that benefit from child life services every year, the impact of the profession is tremendous and unforgettable. A child life specialist makes sure that no child every feels alone or afraid during their hospital stay. In the case of Josh Cares patients who do not always have parents or guardians by their side, the child life specialist serves as a consistent presence for, and links to, the families who would be by their children’s sides if they could.

On March 31st, Amy McGrory, Josh Cares Senior Child Life Specialist was awarded the Ruth Lyons Award for Excellence in Clinical Care. “Amy goes above and beyond a typical child life specialist role,” said Katelyn Zilles, fellow Josh Cares Child Life Specialist. “She passionately provided psychosocial care that focuses on all aspects of a patients ability to cope and never overlooks the amazing healing capability a calming presence can have.”

The Ruth Lyons Award is named after famed Cincinnati television personality Ruth Lyons who created the Ruth Lyons Children’s Fund in 1939 to provide toys and activities to children in the hospital. “It is an incredible honor to be nominated for this award and a humbling experience to win it,” said McGrory.

Ruth Lyons Award 2016

Amy McGrory (center) with some of the Josh Cares team8