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Community Relations Blog : Around Every Corner
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I am the director of Community Relations at Helen DeVos Children’s Hospital. In my rounds at the hospital and in my travels around the state I meet patients, families, physicians, and members of the community who share stories with me and give me reasons to smile every day. My 23 years working in children’s hospitals give me a deep appreciation for the miracles and moments that happen here. I look forward to sharing these stories and connecting with you.

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photo Tom Hanley, APR
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Friday, December 30, 2011
These Giants Walk Among Us
by Tom Hanley, APR at 12:13 PM

Last week I had an “around every corner” moment when I saw author Pam Daugavietis signing copies of her new book “Through the Eyes of a Child” outside the Sallie Bender Guild Gift Shop. Pam was having her picture taken with Annie Hauck and her mom Julie. Annie, now 18, is the tiny preemie pictured with neonatologist Tom Shaw, MD  on the book’s cover. “What are the odds of that?” I wondered.

 Many of the major children’s hospitals in this country are more than 100 years old. My former children’s hospital in Connecticut traces its roots back to the 1898 founding as “The Home for Incurables.” I knew only one of the early “giants” there, Burr H. Curtis, MD,  a renowned pediatric orthopaedist and administrator for 50 years.

 Pam Daugavietis has had a ringside seat as a freelance writer associated with the children’s hospital foundation  since 1993. Her book tells the history of Helen DeVos Children’s Hospital and the many grateful patients it has touched from the perspective of dozens of physicians, community leaders and philanthropists who made the dream of a new children’s hospital come true over the past 20 years.

 Reading “Through the Eyes of a Child” I discovered the names of so many of the “giants who walk among us” today at Helen DeVos Children’s Hospital are people who have been involved almost since the beginning, caring for children and families or supporting the hospital through their generosity.

 The book’s opening paragraph hit me between the eyes. Local pediatrician Tim Conroy, MD,  in 1986 calls Dom Sanfilippo, MD,  then chief resident in critical care at Children’s Hospital of Michigan. Tim begs his friend Dom to come to Grand Rapids to save the lives of critically ill and injured children.

 Wait a minute, I knew Dom Sanfilippo had come here in 1989, but I had no idea of Tim Conroy’s connection, and I see Tim every week. Pam’s story had hooked me immediately, and as I read I began writing down many more familiar names.

 Ron Hofman, MD; of Alger Heights Pediatrics  neonatologists, Len Radecki, MD  and Thomas Shaw, MD; and cardiac surgeon, Luis Tomatis, MD were the next names I recognized.

 Bob Connors, MD,  president of Helen DeVos Children’s Hospital, was the first dedicated pediatric surgeon when he came to Grand Rapids in 1990. It said he was motivated by the vision “of a community ready to do the right thing for kids.”

 I had heard Steve Heacock   tell the story of his late daughter Kirsten’s battle with leukemia in the mid-1980s and her lengthy hospitalizations at C.S. Mott Children’s Hospital in Ann Arbor. It meant a great deal to the Heacocks when the first pediatric hematologist/oncologist, James Fahner, MD  came to Grand Rapids in 1989 and took over Kirsten’s care. Now Steve is Senior Vice President of Community Relations at Spectrum Health and I work for Steve and Dr. Connors.

During tours of the children’s hospital I love telling the story of how pharmacist Diane Sinsabaugh  helped kids create artwork from the leftover pharmacy supplies. As Dr. Fahner’s first pharmacist, 20 years ago she helped the patients decorate brown paper bags to disguise their chemotherapy bags.

 Dr. Fahner’s cancer program by 1991 had grown to include Richard Axtell, MD  and Al Cornelius, MD, and when Kirsten Heacock relapsed in 1993, Deanna Mitchell, MD  cared for her. The pastoral care team  of Rev. Gloria Kroeze and Rev Joanna Bailey have been part of the children’s cancer program nearly since its inception.

 By the early 1990s Dr. Sanfilippo’s pediatric critical care team included John Kopec, MDRick Hackbarth, MDNabil Hassan, MD  and Mike Stoiko, MD.  

And I enjoyed discovering that the 1993 patient move into the new Center Tower for DeVos Children’s Hospital was coordinated by Mary Kay Van Driel, then head of pediatric nursing, now president of Spectrum’s Value Health Partners,   and current nurses Deb Van Putten, Joanne Mooney and Sandy Zemaitis.

 Wendy Burdo-Hartman, MD,  the Gerber Endowed Chair of Infant Development and Nutrition since 2006, had previously done her residency at Butterworth Hospital in 1992. Hematology/Oncology  nurse Candy Rietsema  was a cancer patient at age 12, and Rhys VanDemark  of Child Life had previously been part of the program at Blodgett Hospital before the 1997 merger that created Spectrum Health.

 Ed Cox, MD  came from private practice in pediatrics at Blodgett Hospital in 1990 to run the pediatric residency teaching clinic at Butterworth and Jeri Kessenich, MD  has directed the pediatric residency program since 1995.

 Gwen Fosse became a critical care nurse in 1980, and later a cardiac nurse and now is the Partner's in Children's Health outreach coordinator for Helen DeVos Children’s Hospital.

 Donna Lee Holton chaired the first CMN Telethon in 1989 and the “For Our Kids” campaign for the new children’s hospital. Yet she still serves cheeseburgers as a Guild volunteer in the Fireside Café.

 When I finished reading this book I wondered how to best convey the message that so many of the people whose ability to see “through the eyes of a child,” have dedicated their careers to Helen DeVos Children’s Hospital.

 I think the book’s epilogue by Dr. Connors says it best.

 “Beginning in the mid-1980’s a core group of individuals came together around a vision of creating a world-class children’s hospital and then stepped up to the plate to bring it to reality. Through their commitment and passion for helping children and families, they inspired many others along the way to join them.”

 Note: all profits from the sale of “Through the Eyes of a Child” benefit the Spectrum Health Center for Child Protection  at Helen DeVos Children’s Hospital.

 

 

 

 

 

 

 

 

 

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Thursday, December 22, 2011
A Holiday Tradition
by Tom Hanley, APR at 02:03 PM

I was leading a tour of the children’s hospital recently for some out-of-town hospital executives when one asked me: “Who was Helen DeVos and how was she involved with the children’s hospital?”

 “Helen DeVos IS someone who has been personally involved for more than 20 years since the beginning of this children’s hospital,” I replied. “In fact every year around Christmas she and her grandchildren come back and host a wonderful holiday party for our patients and their families.”

This year’s "Polar Express" holiday party was extra special. As Mrs. DeVos arrived she marveled at the festive decorations in the Balk Café. “This is our first Christmas in the new hospital. It looks magnificent,” she said. Game stations were set up around the perimeter with a DeVos grandchild playing the games or decorating the cookies with the patients or passing out presents.  Kids were busy playing “stack the cups,” and “snowball toss,” and decorating gingerbread houses. Children tugged at their IV poles as they clambered up to pose for pictures on Santa's lap. There were fleece scarves and blankets for everyone, and signed copies of “The Polar Express” by East Grand Rapids native Chris Van Allsburg.

Tables in the center were filled with patients and families dining together, feasting on pizza, sandwiches, ice cream and cookies. There was a delightful buzz in the air, the laughter of excited children echoed about, and a three-piece band played holiday tunes. The band was courtesy of Child Life specialist Elizabeth Ayoub. Her husband sang lead vocals and played the piano and her brother-in-law the bass player is a professional musician who has performed with Shakira and Enrique Eglesias.

 Mrs. DeVos made her way around the room, greeting patients and their parents, and bending over so she could hear the little children talking to her. When I asked how many years she had been hosting the party she reached down with her hand flat at knee level. “We started doing this when the grandchildren were this high, and now they are coming home from college to help. Some are bringing boyfriends, and they plunge right in to help too.”

 Child Life specialist Laura Freed, who started organizing the party with her co-workers right after Halloween, said, “It has been special over the years I’ve been doing this to watch the DeVos grandchildren grow up. When I started, some of them were middle schoolers, and I thought it must have been awkward for them because they were the same age as the patients. But it is so special to see the way they mingle now and are so comfortable with the patients. What a great family holiday tradition.”

 

 

 

 

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Monday, December 19, 2011
"The Best Day EVER!"
by Tom Hanley, APR at 03:25 PM

While many people are using the remaining days of the holiday season to shop for gifts, imagine what it would be like if you and your child were in the hospital and couldThe "gift wrap assembly line." not get to the store.

Seven years ago, members of Grace Reformed Church in Wyoming  reached out to Helen DeVos Children’s Hospital and asked the same question.  They put their heads together with the Child Life staff and thus began a wonderful holiday tradition for patients at the children’s hospital.

Eleven days before Christmas volunteers from the Church and the Family Network of Wyoming arrived with enough gifts to fill the entire playroom on the 11th floor with more than 2,500 items for children and their parents.

“The kids can pick out anything they want for their brother or sister, or their mom and dad,” explained Family Network volunteer Stan DeWitt. But, to make it even more festive, the family lounge next door was transformed into a giant assembly line wrapping party. Volunteers wrapped and labeled each gift and the children returned to their rooms in wheelchairs with armloads of brightly wrapped presents on their laps.

“This is just a hoot for us, we get more out of it than the kids do, just seeing their faces. Look at that little guy.” DeWitt pointed to a young boy about three, his body trembling with excitement as he jumped up and down even while attached to his IV pole and giggled at his new talking “Grover” doll.

Grace Reformed Church and the Family Network of Wyoming work for months raising funds and accepting donations for the presents, and also host a holiday party for 330 children in Wyoming to distribute toys and gifts to needy families. DeWitt said following that party members of the new InSpirit Church in Byron Center came back with 11 bags of gifts for the parents of patients  at the children’s hospital.

As one girl made selections for her parents she spied a boxed set of men’s toiletries. “This will be great when dad comes in smelling like the garage,” she said to her mom.

Later that day, I ran into Rhys VanDemark from Child Life who shared what the day meant to a teenage patient. “He’s a typical teenager, he doesn’t like having to be in the hospital and he’s been here a long time. His family lives far away and gets to see him mostly on the weekends. But today he got to pick out presents for each member of his family and get them wrapped and bring them back to his room. Later he got to meet Matt Giraud  who came here to Toys in the playroomsing during the  Radiothon on Star 105.7 and had his picture taken with him. You know what he told me?  ‘This is the Best Day EVER.’”

 

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Thursday, December 08, 2011
A Fashion Event with a Message
by Tom Hanley, APR at 04:22 PM

A Fashion Event with a Message

I am always humbled at the “why” behind the supportive community we enjoy at Helen DeVos Children’s Hospital. The upcoming Design 1 fashion show on December 13 benefiting the children's hospital features this powerful video, an interview with James and Nina Van Harn, parents of three-year-old Bennett.

I like the introduction from my colleague, Shari Schwanzl, Vice President of Nursing Services, explaining that community support helps make the children’s hospital, “a little less scary and a little more like home.”

But I was overwhelmed with the impact of the children’s hospital on the lives of the Van Harn family.

Bennett has been hospitalized 15 times for a total of 120 days in his young life since being born prematurely and rushed to the Neonatal Intensive Care Unit by ambulance from an outlying hospital. He has mitochondrial disease,  a chronic genetic disorder that causes multiple complications.

“It has been quite the road,” Nina says. She and James have been impressed “that the team of doctors and nurses is treating Bennett as an individual and us as a family. The doctors value our opinion in taking care of our son.”

The Van Harns appreciate “the big, bright colorful rooms that are great for families to visit. There is no other hospital like it and we have been to several.” Bennett’s two older sisters look forward to visiting him when he is hospitalized. Nina says maybe the “Slushie” machines have something to do with that. “It’s like a home away from home for us.”

Nina says, Bennett’s illness means “We HAVE to go to the hospital. We GET to go to Helen DeVos Children’s Hospital.”

We appreciate Design 1 for putting on this fashion event, the JW Marriott for hosting it, and StellaFly  for promoting this cause.

Tickets are still available from Event@design1.com or by calling 284-4942.

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Wednesday, December 07, 2011
The "Pepsi Refresh Project" Helps "Refresh" Kids in Cancer Clinic
by Tom Hanley, APR at 05:33 PM

Jen Wilson, a Child Life specialist, says some kids getting infusion therapy for cancer develop “chemo taste buds,” a craving for junk food snacks, the more sour, salty and sweeter the better. Eight-year-old Blake Hulliberger, battling leukemia since 2009 was no different.  But Blake  and his family figured out a unique way to help satisfy his appetite, and that of hundreds of other kids undergoing chemotherapy in the hematology/oncology clinic at Helen DeVos Children’s Hospital.

With the help of family and friends in Greenville, the Hullibergers entered the Pepsi Refresh Challenge. Blake’s Poke Prize Project, which asked for funds to buy snacks and “poke prizes” was awarded $10,000 in November. Blake and his parents, Joe and Kristeen Hulliberger, have made two trips to the children’s hospital with a carload of snacks, toys and games.

Jen Wilson said the prize is being awarded in $2,000 increments. “I ran into Blake and his family shopping for the poke prizes at Meijer and they are really helping to fill our snack pantry at the clinic.”

Wilson explained that kids at the clinic usually receive treatment for an entire day, and even with the free lunch provided, they get hungry for snacks. In addition to the “Refresh Challenge” funds, Blake’s family collected more than 2,000 Pepsi pop bottles to collect the bottle caps. And, redeeming the bottles, Blake was able to buy holiday stockings and Halloween grab bags.

“Blake went above and beyond. He tried to think outside the box of the kids he was being treated with, so he even bought bigger candy bars and poke prizes for older kids to enjoy.”

Meanwhile  Wilson says the kids in the “Hem/Onc Clinic” are excitedly enjoying the giant “Pixie Stix,” the sour “Skittles” and even cans of beef ravioli thanks to Blake and Pepsi.

You can read more about Blake in the “Greenville Daily News” and watch a special report on Fox 17

http://www.fox17online.com/news/fox17-family-wins-10000-grant-to-help-young-cancer-patients-20111129,0,3703021.story.

http://thedailynews.cc/2011/12/02/greenville-8-year-old-wins-10000-to-help-fellow-cancer-patients/

 

http://www.refresheverything.com/blakespokeprizes

 

 

 

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Tuesday, December 06, 2011
A "Thank You" 19 Years in the Making
by Tom Hanley, APR at 03:19 PM

 

My colleague Janelle Logan received this comment on the “Contact Us” section of the Spectrum Health web site and was moved to share it with me. After reading it I had to know more and I bet you will too:

 

“Hi. I would first just like to say ‘Thank You’ to all of you for what you do. I was born in Grand Rapids at this hospital (Butterworth Hospital) November 20, 1992 with spina bifida. I am not sure who did my operation but I never had a chance to thank the person or people. I am now 19 years old. I am doing an essay for my speech class on spina bifida and I am a very lucky individual. I see. I can walk, play sports and do many other things that people born with this birth defect cannot do. I am Blessed and just wanted to tell you that what you do is amazing and very much appreciated.”

 

Nakeya Carter

Wichita Falls, TX Nakeya Carter

 

I was sure there was more to this story. Who is Nakeya Carter and what is she doing with her life now? What are her plans for the future? We exchanged a few e-mails, first to ask Nakeya permission if I could share her story. She agreed.

 

I learned Nakeya’s family was originally from Muskegon and moved to Texas years ago where she was graduated from high school in 2010.  

 

Spina bifida is an opening in the spine, and depending on the severity may cause paralysis and other complications. Nakeya says the surgery was a success at what was then called DeVos Children’s Hospital at Butterworth

 

“In high school I played basketball and track, something I was told I would never be able to do. I can pretty much do what anyone else can even though I was born with this birth defect. I am very blessed and thankful. I thank God for everything I am able to do.”

 

I was curious to know what Nakeya is doing since graduating from high school.

 

“I am now attending a junior college. I plan to go into the medical field. There is a surgical tech program my school offers that I am trying to get into soon.  I also work at the mall here part time in a clothing store.”

 

Nakeya was kind enough to forward a picture. I asked about the medal she was wearing with her graduation robe. It was awarded to Nakeya as a “Texas Scholar,” meaning she completed additional college level coursework above and beyond her high school graduation requirements. 

I am happy to introduce you to a young woman whose life has been profoundly impacted by the skilled care she received here as a baby. Are you as inspired as I am to read what she has accomplished already?

 

 

 

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Friday, December 02, 2011
Pilots Fly Santa in for Early Visit
by Tom Hanley, APR at 05:22 PM

 

Everyone knows that Santa Claus pilots a sleigh led by reindeer during his around the world visit on Christmas Eve.  But Santa flew in for an early December visit to Helen DeVos Children’s Hospital courtesy of his friends from Pilots for Kids. http://www.pilotsforkids.org/

The GRR chapter, that’s Gerald R. Ford Airport in “pilotspeak” has been visiting kids at the children’s hospital for 10 years, much like their colleagues do at children’s hospitals across the country. But since this will be the first Christmas at the new Helen DeVos Children’s Hospital, the pilots were happy to see  the sunlit space in the Balk Café.

Like elves, the 15 uniformed pilots and several flight attendants set to work before the patients came downstairs from their rooms. Some organized bean bag toss games, others put out art making projects, and helped Santa Claus get set up in a seat for children to sit on his lap. Santa heard a lot of wishes, and gave each child a “Pillow Pal” stuffed animal.

Meanwhile Delta Airlines pilot Greg Chase and his wife Shari bustled about helping the pilots organize the buffet line of pizza, macaroni and cheese and a root beer float station. For awhile they guided an eagle mascot, “Captain Baldy,” dressed in a flight suit, helmet and flying goggles. Volunteering at the event is clearly a family affair for the Chases:  inside the Captain Baldy suit was their son, Zack, an airport customer service rep at GRR who works in baggage handling.

Watching Greg in constant motion, he  paused only to take a picture; Delta pilot Tom Geerlings said, “Greg makes this all happen  and he’s been doing it from the beginning.” The pilots, from Delta, United, Jet Blue and Net Jets are recruited by Chase, and represent hundreds of pilots who donate to the Pilots for Kids program throughout the year. The come in on their day off to share the gifts they have raised for patients at the children’s hospital and at Gilda’s Club “because it connects us to something positive. It gives us the chance to give back,” Geerling said.

Along the buffet line, Delta pilot Barry Immink said he was involved because pediatrician David Duffy, MD, had cared for his daughter years ago and helped diagnose and treat her rare disorder. He was happy to know that Dr. Duffy now heads the hospitalist program at the children’s hospital. Immink introduced his colleague in the buffet line, the only pilot not in uniform.  The young man, his head bald and shiny, explained he is on sick leave for cancer treatment and he was inspired to help with the party for the children at the hospital.

Clad in their bright green shirts, the staff of Child Life specialists brought kids down from the inpatient floors to the party, and assisted and guided them through the games and stations. Pausing for a moment, Child Life specialist Elizabeth Ayoub marveled at the scene. “I came here from the Children’s Hospital of Wisconsin in Milwaukee, a much larger city, but we have so much more community support here in Grand Rapids for Helen DeVos Children’s Hospital,” she said.

After an hour I finally got Greg Chase to stop  for a comment. “I love it, this is my favorite day of the whole year. This is my Christmas Day.”

To see photos of the event, visit  http://www.flickr.com/photos/devoschildrens

 

 

 

 

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