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Vol. 4 Number 2	May 2000

Hershey Hearts is committed to supporting, helping, and educating families of children with heart disease. This is achieved through meetings, newsletters, and a visitation program. Our aim is to strengthen families during their long journey from despair to hope.

In This Edition...

Heart Beat Auction
By Jill Hester

The second annual Heart Beat Auction/Raffle will be held the week of July 10-14, 2000 and conclude at the annual Hershey Hearts Picnic on July 15, 2000. The Heart Beat Auction will be held in room H-1260 at the Hershey Medical Center, which is in the main corridor from the entrance to the cafeteria. The committee members are in the process of soliciting and gathering donated prizes. Again, we will be selling tickets in which the purchaser can choose which prize(s) they would like a chance to win. Tickets will be placed in bags with the corresponding prize, and winners will be drawn at random at the Picnic.

Watch your mail in the middle of June for a list of the prizes for the Auction so that everyone has the chance to support Hershey Hearts in this second annual fundraiser. At this point, we are not planning on selling tickets the day of the picnic, so that every-one can enjoy the picnic. We will be asking anyone who sells tickets to friends, family, or coworkers to do one of the following; please bring the prize sheets to the Medical Center the week of the Auction or to mail them to the Hershey Hearts P.O. Box. If you choose to mail the prize sheets, please mail them early, so that the tickets can be completed and put in the corresponding bags before the Picnic on Saturday.

We would like to have a photo collage of our Hershey Hearts kids to be displayed at the auction. Anyone who would like to have their child's photo included, please mail them to Jill Hester, c/o Hershey Hearts, P.O. Box 163, Hershey, PA 17033-0163. Feel free to send more than one photo, whether it was taken in the hospital, at a Hershey Hearts event, or just a candid shot.

Anyone interested in selling tickets at the Medical Center the week of the auction, or helping in other ways, please contact Jill Hester at glennhmom@juno.com or call the Hershey Hearts number 1-800-864-2349 mailbox #3388. 

Picnic
By Bob Garvin

The 4th annual Hershey Hearts Picnic will be held on Saturday, July 15th from 11:00 a.m. until 4:00 p.m.. The picnic will be at Hoffer Park, in Middletown. There will be Hershey Hearts signs posted from the Medical Center to help you find your way. Please use the directions included in this news-letter to find the new location of the picnic.

Please bring chairs, a covered dish and/or a dessert. Hamburgers, hot dogs, silverware, plates, napkins, cups, and drinks will be provided. 

We have the picnic shelter from 11:00 a.m. until 4:00 p.m., and will eat at 12:00 noon.

The Picnic Committee is planning a fun day which will include: clowns, face painters, a visit from the BREW Club which is a motorcycle riding group, and some entertainment in the afternoon. We will also finish up the Heart Beat Auction on this day. 

A brief meeting will take place after Lunch to elect a new president and secretary. 

Please call 1-800-864-2349, mailbox #3388, by Friday, July 7th to RSVP for the picnic. We need to know how many children and adults will be attending the picnic. The picnic shelter is enclosed at this new location, so the picnic will be held rain or shine.

Let's make the 4th Hershey Hearts picnic the best picnic yet!! Please come and join in on the fun and fellowship! WE HOPE TO SEE YOU THERE !!! 

A Letter from the President
By Rich Reinsburrow

I would like to take this opportunity to thank Jamie Reynolds, who was our guest speaker at the March Meeting, for coming and sharing her story with us. It was truly inspirational to hear what she went through and to see where she is today. Jamie is now a PICU nurse at the Hershey Medical Center. It is wonderful to know that our children are being taken care of by someone as compassionate as Jamie! Thanks again Jamie! We all enjoyed your visit.

It is time for the annual Hershey Hearts picnic and that means it is time for elections of officers. As was explained at last years picnic, in the even number years the term of the President and Secretary are up, and in the odd number years the position of Vice-President and Treasurer are up. So at this years picnic we will be holding the election for the President and Secretary. If anyone is interested in either of these officer positions you need to reply via regular mail to the Hershey Hearts address. Please list the position you are interested in. Some one from the board will contact you concerning the responsibilities of the position and to confirm your interest. We also still have two open board positions, Member at Large and Fund Raising Committee Chairperson. If you are interested in either of these positions please respond to the Hershey Hearts address as well

Fundraising Committee Chair - This position is responsible for overseeing all programs that generate revenue for Hershey Hearts. They would be in-volved in events at a high level while overseeing Event Coordinators.

Members-At-Large - These positions provide additional input to the Board of Directors in representing the opinion of the general membership. Terisa Johnson has stepped forward to fill the first position, but we are still looking to fill the last Member-at-large position. . 

I can also be reached by email at Bigyimmer@aol.com or you can leave a message on the Hershey Hearts phone system at 1-800-864-2349 ext. 3388.

Treasurer's Report
By Tom Teeter

In the last newsletter, I reported that, as of January 16, 2000 our cash balance was $10,645.09.
During the last three months, our primary source of income has been the very successful Longaberger basket bingo event that netted us a profit of $3,842.78. We certainly owe our thanks to the members who helped in a variety of ways, but most of all to Terisa Johnson, who did an unbelievable job at coordinating the entire event and making it as successful as it was. Thank you, Terisa!

We also received other donations that totaled $225.86

The expenses incurred since the last report were $2,553.07. Included in this amount were the costs of printing for two of our newsletters and the mailing of the February newsletter. These costs totaled $1,053.83. Also included in the expenses was the payment in the amount of $1,400.00 for the Reading Phillies outing that we are sponsoring for our members. The remainder of the expenses were for general costs, including supplies, post office box rental, etc.

The January 16th balance and the recent months' activity has resulted in our having a cash balance as of April 19th of $12,160.66.

As always, if anyone would like to make a donation, or needs to contact us by mail, our address is:

Hershey Hearts
P.O. Box 163
Hershey, PA 17033-0163

Longaberger Basket Bingo
By Terisa Johnson

Summer Safety Tips for Children with Heart Problems
By Mary Lou Box RNC,MSN

Summer is just around the corner, so just a few tips to make your summer safe and enjoyable.

Children with heart rhythm problems and pacemakers:

• Avoid spinning amusement rides and rides that have sudden drop-off like the flume or roller coasters. These can aggravate the rhythm problem.
• Children with pacemakers should avoid contact sports where the pacemaker site could be injured - Example: goalie in soccer, catcher in baseball, diving from high boards or "belly-flopping". Injury to the pacemaker site could cause fracture of the pacemaker leads. Also, rides that have safety belts that may press heavily over the pacer site and cause injury should be avoided.
• Drink extra fluids during very warm weather to avoid dehydration and dizziness.

Children with un-repaired or partially repaired heart defects; children who still have "blue" episodes - Example: Hypoplastic Left Heart, Hemi-Fontan, Fontan, Shunts, 3 chambered hearts:

• Drink plenty of water or fluids to avoid de-hydration. The heart needs extra fluid to pump efficiently.
• "Stay Cool" - avoid direct exposure to sun and severe heat. Wear hats, loose, light clothing; use fans or light air conditioning. Increased heat can make the heart work harder to try and cool the body.
• Take frequent rest periods - avoid over-exerting.

Have a Safe and fun summer!!

Art Request
By Mary Lou Box RNC,MSN

We are looking for children's artwork to decorate the Pediatric Cardiology clinic. Art should reflect the child's hospital stay or a clinic visit. Please have the children create their masterpieces on 11 x 14 paper. If possible, please encourage the use of brightly colored materials. We are hoping to make the clinic look very friendly and non-threatening for our patients. Please mail artwork to Pediatric Cardiology, c/o Mary Lou Box, Milton S. Hershey Medical Center, Hershey, Pa. 17033. Thanks!!

Visitation Program
By April Weaver

The Visitation Program continues to reach out to Pediatric Cardiology families at the Hershey Medical Center. Thank you to all our volunteers who continue to donate their time to visit these families.

For those who are not familiar with the Visitation Program and would like more information, please contact April Weaver at Nontradmom2001@netscape.net or Kelley Houtz at Bhoutz@paonline.com.

Hospitals, ailing youngsters keep asking for Woody Wolfe
By Michael Vitez, Inquirer Staff Writer mvitez@phillynews.com

'Musicianary' wins hearts of children

Every weekday, Woody Wolfe does something he thought he never could. Usually by the time the sun is up in the Susquehanna River town of Danville, he's on the road in a 1988 Plymouth Reliant that al-ready has given him 118,000 miles. In the backseat is a worn-out guitar, cracked and epoxied in six places, and a bulging canvas pack that is his "magic bag." 

He might be headed for Pittsburgh or Hershey or Philadelphia, but the end of the line is always the same: a hospital where sick children, many gravely so, wait for Woody Wolfe to sing to them. 

He calls himself a "musicianary." It's a word he made up for the calling that he answered eight years ago, when he quit his job as a cardiac technician and began riding the circuit of pediatric wards across Pennsylvania. 

"The last place I want to be is with families in the midst of the most horrible sufferings of their children," he said. "I don't want to be there. Yet God has shown me the most incredible blessings there." 

Like in Jake Waltman's room at St. Christopher's Hospital for Children. In the world of chronically ill youngsters, the 7-year-old Feasterville boy is a "frequent flier" - a regular - whose cancer keeps him coming back. On a Thursday, a Philly day for Woody, Jake lay curled in pain in bed, alternately sleeping and vomiting. Woody peeked in, but when Jake's father and the nurses waved him off, he moved to the next room. A moment later, John Waltman rushed into the hall, tears in his eyes. "Please, can you come play for Jake?" he asked. "He hollered out, 'Woody!' " 

Woodrow Wilson Wolfe Jr. is 46 and looks like an old folkie, bald and bearded, with wire-rim glasses and sandals that he wears through the winter. He can play hundreds of songs by heart. "Itsy Bitsy Spider" for a toddler, Carole King's "You've Got a Friend" for a lonely teenager, "The Booger Song" for a child who will laugh at nothing else. 

"In a hospital where there are so many people ready to poke you and measure you and examine you, he just comes in and gives," said Gail Hertz, a pediatric resident at the M.S. Hershey Medical Center, where Woody spends Wednesdays. 

"The kids go nuts for him. So do the nurses," said Lynn Dempsey, a cardiac ICU nurse at Children's Hospital of Philadelphia, his Friday stop. "I follow him around." 

In a simple studio he built in his little white duplex by the river, Woody has recorded five cassettes of songs. He has given away 30,000 copies to children and their families, so his music can be there when he is not. He charges nothing for what he does. Hospitals give him small stipends - $75 a day, tops - and donations from churches and admirers keep him on the road. When he got a haircut the other morning, his barber wouldn't take his money. "Put it in your gas tank," he said. Woody might travel with just $10 in his wallet, yet he counts himself a rich man. "People often live their whole lives hoping to meet their he-roes," he said. "I get to meet mine every day." 

Walking down a corridor at Hershey Medical Center the other day, he spotted one of them. Jonathan Jagozinski, a Luzerne County boy who has battled leukemia for two of his four years, was playing in bed with Power Rangers and Legos. The boy looked up. "Woodyyyyyyyy!" he yelled. Soon he was singing along to "Love Is." Bending his knees when Woody sang "Love is deeper than the oceans." Raising his arms as far as they would go when Woody sang "Love is higher than a mountain." Flexing his muscles when Woody sang "Love is stronger than a freight train." Running to Woody and hugging his hips with all his might when the song ended. "Through every spinal tap that Jonathan has ever had," said his mother, Jeanne, "he had Woody's music on." 

At age 10, Woody Wolfe wanted to be a minister, but he grew up to be a paramedic, assigned to helicopter medivac at Geisinger Medical Center in Danville, his hometown. One afternoon in 1981, he got a call from pediatric oncology. A 17-year-old cancer patient, bored with lying in bed, wanted a ride. He took the teen up in the chopper. Woody mentioned he played guitar, and had ever since the Beatles invaded America. "Maybe I could come by and play," he offered. Almost as soon as he said it, Woody panicked. He was terrified at the thought of playing to sick children, of even talking to them. But he was stuck. So he went. The children loved him. At the time, Woody was thinking about quitting his job and going into seminary. He had a long talk with a minister, a friend who knew about Woody's debut in pediatrics. "Did you ever think your ministry is right where you're at?" the pastor asked. "It can't be," Woody argued. "I crumble around critically ill kids." "That's the point," the pastor replied. "You rely on the greater strength to get through it. That's when you can really get through to parents and kids." 

Woody went back to the Geisinger children's ward - every few months at first, then almost daily on his lunch break and after work. "I'd see these kids who looked pretty miserable and soon enough they're smiling," he said. "And their parents, they were pretty wiped out. But when they saw their kids smiling, they became so rejuvenated. To me, that was just a joy." 

There Woody met "Little Matt." Seven years old, he was not only a cancer patient but also a foster child. Woody, his wife, Debbie, and their two sons - one of whom also is named Matt - visited the boy so often that "he really became like ours," Woody said. Little Matt was 10 when he died. "The last thing he said to me," Woody said, "was, 'You'll be OK when I'm gone. But I couldn't have done it without you. I love you.' " Woody paused. "I think that's as close as I've come to really knowing what these parents feel." 

A year later, Woody left Geisinger, where he had become a technician. He called his new one-man mission Heart to Hand Ministries. (www.hearttohandministries.com) His wife, a day-care worker, encouraged him - but kept her distance from his work. She told him, "Fine, if that's what you want to do." But after the pain of Little Matt's death, "I just can't get involved with every child." Word of Woody's music was spread by families, physicians and staff at Geisinger. Soon he was playing hospitals in Arizona, Florida, South Carolina, and camps for sick children as far away as Montana. 

In the last year, he has stayed closer to home, to be consistently available to Pennsylvania children. On Mondays, he drives to Children's Hospital of Pittsburgh, or occasionally to Baltimore. On Tuesdays, he plays Geisinger. Wednesdays, Hershey. Thursdays and Fridays, Philadelphia - with a night at a Motel 6 in King of Prussia. He always drives the back roads, a tape recorder on the seat beside him. When inspired or discouraged by the day's experience, he talks. 

Coming over Blue Mountain in Schuylkill County on a recent morning, he watched a hawk catch the wind and soar over his car. Woody recorded: "The beauty of this hawk comes from it simply being what it was created to be, no more no less. My prayer today is, like that hawk, I might be simply what God created me to be. "May I catch the wind of His spirit and fly." 

Connor Nestler, 8, lay alone in his bed at St. Christopher's, surrounded by an armada of machines. When Woody asked whether he wanted a song, Connor refused. Woody doesn't mind if children send him away. They have so little control over their lives, he figures, that if he can give them even the power to say no - well, that's giving them something important. He left a tape. A week later, he visited again. Connor saw him coming and sat up in bed. Woody pulled a chair alongside and, in a voice as easy as an old shoe, started out with "You've Got a Friend in Me," from the movie Toy Story. Two weeks later, Connor had improved enough to move from intensive care to a regular pediatric floor. When a nurse told him Woody was around, Connor posted himself by his door and, at the first sight of him, screamed "Wooodddyyy!" The boy had a request: "Can you do 'The Booger Song?' " Always aiming to please, Woody began singing, to the tune of "She'll Be Comin' Round the Mountain": "There's a booger in the sugar. No there snot." Connor laughed so hard and loud that parents and children from other rooms gathered at the door. "That was pretty disgusting, huh?" Woody asked at the end. "Yeah," Connor re-plied. "Can you sing it again?" 

Slung over Woody's shoulder with his guitar is the magic bag. When he digs into it, just about anything could come out. For families who live more than an hour from the hospital, he reaches deep and fishes out phone cards with 30 minutes of free long-distance calling - a gift from a church that supports him. He might come up with tapes and batteries, candies and McDonald's coupons, even a picture of himself at age 19, longhaired, in front of a VW bus. "I know what it's like to lose your hair," he tells youngsters in oncology as he shows the photo. "I'm still waiting for mine to grow back." He also carries a legal pad with a rap song that he and a patient are writing (they call themselves "The Candy Wrappers"). Always with him is a Bible. Woody doesn't sing religious songs or talk about his faith, unless a patient or family asks. The Bible is for himself, to read after hard days. Also tucked in the magic bag is bereavement literature. Because many of the children Woody meets don't go home. 

At St. Christopher's recently, he spent an afternoon with Erica Willits, a 4-year-old with cancer. While he sang to Erica, said nurse Rhonda Gibson, "her heart rate and blood pressure got better. And I was, like, 'Woody can't leave!' " Ninety minutes after he did, the girl died. 

In the last year, Woody has sung at about 70 funerals and memorial services, and he sang at Erica's, in Fishtown. He performed one of his own compositions, "Because of You," and her family, having heard it so often before, joined in: 

"Because of you, I've learned to live, 
"Sharing the joy that your life gives." 

Which is why, the next day, Woody Wolfe was on the road again to a hospital, where sick children waited to hear him sing. 

Family Portraits
By The Cooper Family

On February 12, 2000, it will be one year since our son, Ian, underwent Heart Surgery at Hershey Medical Center for transposition of the great vessels.

Ian was one of a sextuplet pregnancy. Two of his little womb mates were miscarried early in the pregnancy. Early in the evening of February 6, 1999 we welcomed our four remaining babies. Ian Remington was born first, next came his brother, Christian Earl, then his sister, Taylor Saige, and last his other sister, Saige Leigh. Saige was still born. She had died in utero sometime around 23 weeks gestation, and Taylor died only one hour after her birth. She had little to no lung function resulting from a congenital diaphragmatic hernia.
Ian's congenital heart defect was found in utero. Two days after we learned of Saige's death as a matter of fact. The fear of Ian was not only his heart defect, but the almost certain early delivery…would he be big enough for the surgery he would need to save his life?

Ian came into this world pink and crying, but quickly began turning blue. It was determined that he would have to be flown by Life Lion to Hershey Medical Center from York Hospital ASAP. We were told that he would need heart cath that nigh. This would only be a temporary solution until they could get him stable enough and big enough to do the surgery to actually switch the vessels of his heart. We consented to the cath. At 3lbs, 3 oz, we were told that Ian will be the tiniest baby they have ever done either procedure on at Hershey. The flight crew brought Ian to me for a quick glance before the flight. I was so scared. He was so tiny. We had lost so much already. I could not bear the thought of losing Ian as well.

Around 2:00 am, Dr. Zangwill did Ian's heart cath. We will always be grateful to him for saving Ian's life that night. I can not even imagine the skill necessary to do this procedure on such a tiny baby. God was with Ian every step of the way.

On Friday, February 12, 1999, Dr. Myers performed Ian's open-heart surgery. The surgery went well, but around seven hours post op Ian began having severe complications. By early Saturday morning Ian was extremely critical. Ian quite possibly was not going to live. As I said before, God was with Ian. He gave us a wonderful team of doctors and nurses to care for Ian, and thanks to their diligence Ian turned the corner sometime around the end of February.

And so now one year later, we are writing to offer our heartfelt thanks to all of those who worked so hard for Ian. Dr. Myers and Dr. Zangwill, we will always be grateful to you for doing the surgeries that have allowed Ian to live. Dr. Thomas and Dr. Lucking, you both rose to every challenge that came Ian's way in those extremely critical weeks in the PICU…thank you both. Thank you Dr. Gilmore for seeing Ian through the critical night of his birth in the NICU. I was not there, but my husband told me that when Ian began having complications after the heart cath that you did not leave his side. Dr. Cyran, we thank you for continuing to monitor Ian's progress. Last but not least, thank you to the nurses of the PICU and NICU for handling Ian with great skill, but more importantly than that, handling him with great compassion. God used each of you in very special ways and now despite all the odds, we have Ian with us.

I've enclosed a picture of Ian taken last year during his most critical time along with what he looks like now. Ian has made wonderful progress. His pediatrician says, "He is growing like a moose!" He now weighs close to 18lbs. He is doing everything to either his chronological age or his adjusted age. He has a smile for everyone. People are always amazed when they hear about all he's endured, because you would never know it to look at him. Ian and Christian enjoy their big sisters and having two 8-year-old daughters to help with the boys has been wonderful for us.

Ian's name means God's gracious gift. I can not think of a more appropriate name for him. We thank God for him as well as all our children. They are our greatest gifts. It's nice to know that there is a place like the Hershey Medical Center where all of you work so hard to help save these precious lives.

Sincerely,
The Cooper Family

Redner's Save a Tape Program
By Lisa Hoffman

Hershey Hearts support group is accepting Redner's Warehouse Markets register receipts to be submitted for a 1% rebate offer. The save-a-tape program requires that people ask for a free save a tape card from the customer service area of the store. The save-a-tape card is used when you checkout, (tax, milk and tobacco products are not eligible). This special receipt keep the non-eligible items separate and just totals the items that are eligible. Once you have collected a significant number of receipts, mail them to:

Lisa Hoffman
C/o Hershey Hearts
P.O. Box 163
Hershey, PA 17033-0163

They will then be submitted periodically throughout the year to Redner's for our rebate on the total collected. Please ask your friends, neighbors, and family to sign up to help Hershey Hearts 

Directions to the Hershey Hearts Picnic
Saturday July 15, 2000
11:00 AM - 4:00 PM

New Location !!! Hoffer Park in Middletown PA

From Hershey Medical Center

Take 322 West toward Harrisburg to the "Middletown / Hummelstown" Exit
At the stop sign off the exit, turn left toward Middletown
At the first traffic light, turn right, following signs toward Middletown
At the next traffic light, turn left onto Middletown Road
Follow Middletown Road for about 5 miles into Middletown Boro

*****Inside Middletown Boro*****

Middletown Road becomes Vine Street inside Middletown Boro
Follow Vine Street until the traffic light (about 1.5 miles)
At the traffic light, turn right onto Main street (Route 230)
Turn left at the next street "NORTH RACE STREET" 
(J&J Pizza Family Restaurant is on the south / west corner) 
Follow North Race Street until the fifth stop sign.
Turn left at the fifth stop sign into Hoffer Park

From Harrisburg

Take 322 East toward Hershey to the "Hummelstown / Middletown" Exit
At the traffic light off the exit , turn right onto Middletown Road
Follow Middletown Road for about 5 miles into Middletown
Use the "*****Inside Middletown Boro*****" directions 

From York

Take 83 North to the PA Turnpike East (76) toward Philadelphia
Continue on the Turnpike to Exit 19 - Harrisburg east
Take 283 East - Exit 2E toward Lancaster
Get off at the "Middletown / Hummelstown" Exit
Bare right off the exit, follow signs toward Middletown
Follow Middletown Road for about 1 miles into Middletown Boro
Use the "*****Inside Middletown Boro*****" directions

From Lancaster

Take 283 West to the "Middletown / Hummelstown" Exit
At the stop sign off the exit, turn left toward Middletown
Follow Middletown Road for about 1 miles into Middletown Boro
Use the "*****Inside Middletown Boro*****" directions

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Coming Events and Reminders

Mark your calendars for the following events in 2000:

©	Hershey Hearts Annual Picnic July 15, 2000 at Hoffer Park in Middletown, PA. Please RSVP by July 7th.
©	Heart Beat Auction/Raffle will be held the week of July 10-14 and conclude at the annual Hershey Hearts Picnic on July 15, 2000. The Heart Beat Auction will be held in room H-1260 at the Hershey Medical Center.
©	Election of Officers will be held at the annual picnic.
©	Board Meetings are held the third Monday of every month
©	If you know of a family that would like to receive the newsletter or would like to be removed from the mailing list, please call 1-800-864-2349, mailbox #3388. If you are moving or have an address change, please also call the Hershey Hearts 800 number to give the correct address.
©	As always, if you have any questions, suggestions, or entries for our newsletter please email Kelly Andre at kandre@prolog.net.

 

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© Communication Committee © Fundraising Committee © Heart Beat Auction Committee © Longaberger Basket Bingo Committee © Nomination Committee © Picnic Committee © Visitation Committee 

© © ©