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TODAY news for Thursday, November 26, 2007

Loma Linda University Children's Hospital news

Love motivates Savannah Edwards to raise funds in memory of cousin

Stephen Neil Dysinger is pictured with his cousin Savannah Edwards.
Stephen Neil Dysinger is pictured with his cousin Savannah Edwards. The 11-year-old Ms. Edwards was so moved by her cousin’s heroic struggle with cancer that she launched a fund-raising ministry that has raised more than $3,000 to date for children with cancer at Loma Linda University Children’s Hospital.
Consider yourself warned—the story of an 11-year-old Columbia, Tennessee, girl who raises money to help children with cancer at Loma Linda University Children’s Hospital has been known to move people to tears.

The story begins the week before Christmas 2005, when Savannah Edwards learned that her cousin, Stephen Neil Dysinger, had been diagnosed with a rare form of cancer that attacks muscle cells and connective tissues. Rhabdomyosarcoma most commonly strikes children aged 2 to 6 and less frequently attacks teens from 15 to 19. Although 13-year-old Stephen didn’t belong to either group, he still managed to come down with the disease.

The condition is deadly. Only 50 percent of children diagnosed in the early stages of the disease survive for five years. Unfortunately for Stephen—whose father, Wayne S. Dysinger, MD, chairs the department of preventive medicine at Loma Linda University School of Medicine, and whose mother, June N. Dysinger, CNM, is a certified nurse midwife at Kaiser Permanente Fontana Medical Center—no one survives when the illness is diagnosed in the late stages, as his was.

“I remember sitting in my room feeling so sad that he was sick,” Savannah recalls, “and wishing I could do something. I wanted to help in a big way.”

After praying for Stephen’s recovery, individual members of Savannah’s large and loving family—mom Janelle, dad Craig, brothers Nick and Zack, and sister Maryssa&mdash
Savannah Edwards squeezes the handle of her caulking gun as she prepares to help finish the cabin named in honor of her late cousin Stephen Neil Dysinger at Camp Lawroweld in rural Maine. The cabin was completed last year.
Savannah Edwards squeezes the handle of her caulking gun as she prepares to help finish the cabin named in honor of her late cousin Stephen Neil Dysinger at Camp Lawroweld in rural Maine. The cabin was completed last year.
;began making plans to encourage Stephen. “I decided I would use my creativity to make handmade cards, dishcloths, and baby blankets to sell and raise money for him,” Savannah explains. Ms. Edwards’ four cousins joined Nick in shaving their heads in solidarity with the newly bald Stephen, who was losing his locks to chemotherapy.

To no one’s surprise except her own, Savannah’s ministry of selling handcrafted gifts at church and community functions paid off in a big way. In a matter of days, she had reached her goal of making enough money to outfit Stephen with some comfortable new clothes to replace the ones he outgrew after losing so much weight to the disease. Now she wondered what to do with the money she kept earning.

Stephen suggested she come to California and keep him company. That sounded fine to Savannah; after persuading brother Nick and Grandpa and Grandma Dysinger to let her join them on an upcoming road trip to see Stephen, she started packing.

When they arrived, Savannah was shocked by the change in Stephen’s appearance. Although she had known he was receiving chemotherapy at Loma Linda University Children’s Hospital, she still wasn’t prepared for the sight. “He had lost all his beautiful hair,” she notes. “Seeing him like that made me realize how sick he really was. I wished I could take his place, or that he wouldn’t have to be so sick.”

The other thing she noticed was that Stephe
Pictured from left are Maryssa Edwards, Zack Edwards, Savannah Edwards, Zachary Kiffmeyer, and Chloe Kiffmeyer.
Savannah Edwards and her band of Kool-Aid crusaders, officially known as Children Helping Children in Their Fight Against Cancer, seek to raise funds and awareness. Pictured from left are Maryssa Edwards, Zack Edwards, Savannah Edwards, Zachary Kiffmeyer, and Chloe Kiffmeyer.
n remained steadfastly positive in spite of his illness. “I was amazed at how strong he seemed to be,” she offers. “He could be in the bathroom vomiting one minute, then come out and say, ‘Let’s go to the movies!!’ in an excited way. We had a great time while I was there. We played Monopoly and lots of games, read books, went to the movies and out to eat.”

When the time came for her to return home, Grandpa, Grandma, Mr. and Mrs. Edwards—who had flown out to join the group a few days earlier—remained with Stephen. Savannah bought a ticket and flew home by herself. “It was great!” she grins, recalling her first airline flight. Then she set her sights on raising more money.

She mobilized Zack and Maryssa and two of the neighbor kids, Zachary and Chloe Kiffmeyer, into helping her open a lemonade and Kool-Aid stand. Chloe and Zachary had lost their grandma to cancer and were eager to join the cause. “We set the stand up in front of our house,” she explains, “and made lots of signs. I made a board with pictures of Stephen and me explaining why I was doing my ministry.”

Word soon spread that Savannah was serious about raising money to help Stephen and other children with cancer. Not only did the neighbors buy her lemonade and Kool-Aid, but her fellow worshippers at Grace Point Seventh-day Adventist Church in the nearby town of Franklin, Tennessee (where she attends services on Saturday), and the First Cumberland Presbyterian Church in Columbia (where she attends the Wednesday Night Kids Church) became repeat customers of her cards and handmade crafts.

“My church families support me a lot,” she insists. “My good friend Ms. Ruby has been my biggest supporter. She’s always feeding me ideas, helping to print my ministry labels (Children Helping Children in Their Fight Against Cancer) and giving me extra card stock. Mr. and Mrs. Marshall got me a nice paper cutter. Mrs. Marshall is in charge of sending out birthday and other cards to our church members, so she kind of has an outstanding account with me and buys any extra cards I have. Ms. Doyle gives money on a regular basis to support my ministry. Also, my Aunt Carolyn and Mrs. Vollmer are frequent supporters. People definitely believe in what I’m doing and want to help out.”

One of the cards Mrs. Marshall purchased from Savannah unexpectedly made its way into the Edwards family mailbox one day. “My Dad loved getting a card she had purchased from me on his birthday!” Savannah recalls.

Savannah catches her breath, then discusses her friends at First Presbyterian Church. “First of all,” she says, “I can’t say enough good things about Merideth and Terrance Bybee. They’re the ones responsible for the children’s ministry. They’ve encouraged me so much. In fact, this year, they gave me one of the leading roles in this year’s Christmas play, ‘The Mystery of the Manger—It’s the Gospel Truth!’ I can’t wait! My sister Maryssa is going to sing a solo, too. There are so many nice people that I couldn’t begin to thank them all. They go out of their way to make me feel like what I’m doing is really important!”

Prior to Stephen’s cancer diagnosis, he had been a remarkable boy with intense energy and boundless creativity. As a student in the fifth grade, he had written a book titled William about growing up with his younger brother of that name with Down syndrome. The book was subsequently published and is available online from <authorsto

believein.com/inspirational.htm>. Stephen had always loved the outdoors. Whether it was camping in the San Bernardino Mountains, swimming and biking at Huntington Beach, or climbing rocks at Joshua Tree National Monument, Stephen was accustomed to living his life at full speed ahead. But cancer significantly depleted his reserves.

“My cousin Stephen is one of my heroes,” Savannah remembers. “He was 13 years old and in the seventh grade at Loma Linda Middle School when he died. He was full of life—ALWAYS—even when he was so sick.”

 Nick stayed in California while Stephen underwent three months of aggressive chemotherapy, radiation treatments, and surgery. “They did lots of stuff together,” Savannah notes. “Stephen loved to read and play games on his computer. He also loved playing air soft guns with Nick. They had a grand time.”

As the disease progressed, Stephen increasingly drew inspiration and courage from his relationship with God. He had been baptized at the Azure Hills Seventh-day Adventist Church almost a year before anyone knew he had cancer, but as Pastor John Brunt would point out in his eulogy of Stephen, the young man’s heart had always belonged to God. “His nightly prayer was, ‘Dear Jesus, please live in my heart. Help me be Your boy.’”

Pastor Brunt attributes Stephen’s incredible optimism in the face of death to his deep faith. “He managed to thoroughly live each day and each moment with no significant worries about the past or the future. He showed an awesome strength and desire to live, but was also at peace with death because he knew that heaven was next.”

Despite Stephen’s resolute assurance, his impending death proved challenging to the family he left behind. “It was just crushing is all I can say,” Janelle remembers.

“My parents were out in California and they called to tell me that today would probably be ‘the day.’ We were all in shock and just numb.”

“When I found out he wasn’t going to live,” Savannah shares, “I cried! He was so young. But I also saw the journey that God put Stephen on during his time of being sick.” She remembers something he said as being particularly important. “‘I don’t want to die,’ he told our grandparents one day, ‘but what’s the big deal? The next thing when I wake up, I’ll get to see Jesus.’ That’s pretty cool for him to think of it that way. He didn’t even act scared about dying.”

When the family got the news that Stephen had passed away in his sleep at 1:11 p.m. on Thursday, July 20, 2006, it was time to finalize travel arrangements. “My son Nick and I made plans to go to the funeral,” Ms. Edwards recalls. “We felt the little children were too young to attend, so Craig offered to stay home with them. Nick was scheduled to give a talk at the memorial service about his memories of Stephen and I needed to be with Wayne and his family. We couldn’t afford airfare for anyone else to go. Unfortunately, Savannah would have to stay home.”

Or not. “Savannah said she wanted to go even if she had to raise her own money,” Janelle recalls. “So she sold cards at the church social that Saturday night and just did manage to raise enough cash to buy a round-trip ticket for herself. It was just by the Lord’s grace that I could even find a ticket for her at that late hour.”

“I was sad at the service,” Savannah says. “The hardest part was when my brother Nick talked. I had never seen him that sad. It was all he could do not to break down and cry. He kept wiping his eyes. Hearing him talk about all the times he and Stephen enjoyed together was good, but I felt kind of sad realizing that Stephen wouldn’t be there anymore. It’s still hard going back and knowing he’s not there.”

Another highlight of the memorial service for Savannah was meeting Cyndee Pelton. “She was one of Stephen’s nurses on unit 4800 at Children’s Hospital. She gave him his first chemo treatment and took care of him during his many stays there. She’s the best! I think God has given her a special gift to work with sick children. She has the biggest heart. I always try to see her when I’m out there, and we communicate by letters and e-mail.”

The day after the service, Uncle Wayne took Nick and Savannah out to the Angelus Urn Garden at Montecito Memorial Park in Loma Linda. They brought a bouquet of yellow sunflowers, white roses and other assorted blossoms to the site where Stephen’s cremated remains are interred. The downcast expressions on their faces speak volumes about the sad reality of death this side of the resurrection.

A couple days later, representatives of the Dysinger and Edwards families returned to the 4800 unit where Stephen had stayed during his hospitalization at Children’s Hospital. They were surprised that not only the nurses, but also several senior members of the staff, were there to greet them, including Ruthita Fike, MA, administrator and CEO of Loma Linda University Medical Center, and Zareh Sarrafian, MBA, administrator of Children’s Hospital.

“It was a very emotional experience,” Janelle remembers. “It was the first time Wayne and June had been back since Stephen’s death. There was so much love in that room. The staff made us feel like they could really empathize with what we were going through.”

During the visit, Savannah presented the staff with $135 she had raised at the lemonade stand. She asked that it go to the playroom where Stephen had spent so much time enjoying games and toys. “It was really hard to hold back the tears,” Janelle shares.

Once the three Edwards returned home to Tennessee, Savannah sent a box of dishcloths for the nurses on the 4800 floor. Then she reflected on the future of her fundraising activities. Stephen might be gone, but other brave children were still battling cancer and she thought it would be a fitting memorial to his legacy if she raised money to help them in his honor.

“My desire to raise money to help children started before Stephen’s cancer was diagnosed,” she offers. “I started by raising money for a family that was adopting children from Liberia. I wanted to help in their mission. I raised around $500 to help them.”

In addition to raising money for children with cancer at Loma Linda University Children’s Hospital, Savannah turned her attention to the three projects named as beneficiaries of The Stephen Neil Dysinger Memorial Fund. First of all, Stephen had willed that a new cabin should be erected at Camp Lawroweld, a rustic Adventist youth camp in northwestern Maine. Stephen had spent several summers there enjoying the camaraderie of his peers amid the beauty of New England wilderness, and he wanted to give something back. Second, he wanted people to support the Stephen N. Dysinger Ministry at the Azure Hills Seventh-day Adventist Church—a ministry the church had named in recognition of his great love for drama. Third, he had requested that money be raised to equip the Chan Auditorium at Loma Linda Academy with a new podium and microphone.

Since there was no time to waste, Savannah rolled up her sleeves and set to work. Along with other members of the Edwards, Dysinger and Neil families, she helped build Stephen’s new cabin in Maine. She sawed, caulked, and nailed like a pro. Then she made more cards and gifts to help defray the $40,000 cost of the project. The supervisor of the cabin construction project was none other than Stephen’s grandpa Jay Neil, a Loma Linda University graduate orthopaedist from New Hampshire.

Because she likes to work towards a goal, Savannah pledged to donate $100 every three months during a recent Loma Linda University Children’s Hospital fund drive. Then she retreated to her room, jumped on the bed and began to crochet with a will. “I plan to exceed that agreement as much as I can,” she states. “As long as I am alive, I want to help other families whose children are dealing with this awful disease.”

What does this remarkable child philanthropist do in her off-duty time? “Besides raising money, I’m a normal girl for my age,” she says. “My favorite things to do are my dance/ballet classes, playing with my American Girl dolls with my friends or sisters, doing crafts, and writing letters. I do a lot of crafts with my godmother Maria, and like to sew with my Grandma. Also, I do crafts with my Aunt June when I visit out there.” She pauses for a moment then adds, “I love roller coasters!”

She also likes to play with Bailey, the family’s boxer dog, and loves hanging out with R.J. (4) and Isabella (6), the two Puerto Rican children her family is adopting from the Massachusetts state foster care system. Ironically, the Edwards family learned that the children were coming to live with them the day after Stephen was buried.

“R.J. is kind of my sidekick,” she notes. “He is pretty much attached to me at the hip. I do a lot of his care, like bathing, dressing and feeding him, just ‘cause I like to. He loves me to tuck him in bed at night. I guess I’m kind of like his second mom. I tell him he can live with me when I grow up and get married. He likes that idea. God gave each of my adopted siblings to our family as a special gift. They are great!”

One of her personal dreams is to “come to California and spend some time sewing and doing crafts with my Aunt June, playing with my cousin William, and going to Disneyland or California Adventure to ride roller coasters with my Uncle Wayne. That would be my ultimate vacation!” she declares. When she grows up, Savannah would like to live on a farm with horses and work as a midwife like her Aunt June.

But whatever she does, one thing is certain: Savannah will keep on giving to help others. To date, she’s raised more than $3,000 and is not about to quit. She makes time each week to create lots of cards and crafts to help children with cancer.

“There are many children’s hospitals across the country,” she acknowledges, “but it is important to me that the money I raise go to where my cousin spent his time, at Loma Linda University Children’s Hospital. That makes my heart feel good.”

In practicing philanthropy, Savannah exemplifies a philosophy that has been handed down across three generations of her family. “When Mom was a teenager,” she shares, “my Grandpa told her that true happiness comes from what you can do for others, not from how much money you make. I really believe that.”

Apparently, she’s not the only one. Savannah’s sister Maryssa “raises change”—a process of asking parents, grandparents, relatives, friends, neighbors, and church members to give you their pocket change—for Nashville-based Hope Clinic for Women which, according to their website at <hopeclinicfor

women.org>, is a safe and confidential faith-based service that provides counseling on pregnancy choices and abortion alternatives. She may be only 9 years old, but she’s already contributed more than $85 to the cause.

The spiritual basis of Savannah’s habitual giving shines through everything she does to help others. “Mom always tells me that Jesus gives each of us our own special gifts,” she observes. “Mine seem to be acts of love and service for others. I want to keep on doing that when I’m grown. My Grandpa and Grandma Dysinger served others their whole lives. They worked at Loma Linda University and overseas for a long, long time, and everywhere they go, people know them. I want to be known like that,” she remarks, “for what I can do for others.”

Savannah thinks for a moment, before offering one final insight that undergirds her generosity and drives her will to give.

“I can’t wait to see Stephen in heaven,” she says, “and tell him all the cool things I got to do because of my love for him.”

* * *

Readers who would like to join Savannah Edwards in contributing to the care of children with cancer are invited to send their donations to Savannah’s Fund, Loma Linda University Children’s Hospital Foundation, P.O. Box 2000, Loma Linda, California 92354. Those who wish to donate to the Stephen Dysinger Memorial Fund may send their checks in care of the Azure Hills Seventh-day Adventist Church, 22633 Barton Road, Grand Terrace, California 92313.

By Jim Ponder

TODAY news for Thursday, November 26, 2007