MASSAGE THERAPY JOURNAL - SUMMER 2004   www.amtamassage.org By Deborah Weisberg  -   Photographs by John Clines

At the Ronald McDonald House in Pittsburgh, several local therapists donate their time to improve the quality of life for critically ill children, and their families.

The first time Eliot Kennedy Massaged a sick child, she was taken aback.  But apprehension turned to awe when she realized how well her 9-year-old client was responding.  "He knew his body so well, he guided me," Kennedy says.  "He has such a  happy spirit.  He was so appreciative."

Her colleague, Marsha Morris, had a similar experience.  "I was a little nervous at first, but he talked to me about everyday things," she says, referring to the 19-year-old with lymphoma on whom she performed craniosacral work.  "He told me I was making him feel good.  When it was over, we hugged and we cried. He was a very loving boy.

Massage therapist Eliot Kennedy, right, and Ipek Tetikoglu share a warm moment before Tetikoglu's chair massage in the Ronald McDonald House parlor.  Tetikoglu welcomes a break from helping care for her sister, who lives with her and their mother at the Ronald McDonald House while recovering from a kidney transplant.

                                                                                                                    Kennedy says volunteering at Ronald McDonald House takes her work to the very foundation of what it means to nurture and heal.  Here, she finds pressure points along Tetikoglu's spine to relieve tension.

Morris and Kennedy are part of a corps of American Massage therapy Association (AMTA) members who volunteer their services at the Ronald McDonald House in PIttsburgh, where families can stay while their children await organ transplants or are hospitalized with life-threatening illnesses.  The massage program was started 11 years ago for frazzled parents by Cheryl L. Siniakin, Ph.D., as the newly elected first vice president of the Pennsylvania chapter of the AMTA.  Since then, hundreds of parents and some children living at Ronald McDonald House during outpatient treatment have received table or chair massage.

In this article, both therapist and clients share their thoughts about the extraordinary comfort of compassionate touch.  "It was a tough sell at first," muses Joanne Kehris, manager of Ronald McDonald House, a restored Victorian mansion near children's Hospital of Pittsburgh, where most of the kids are patients.  "But word of mouth has made it popular.

"Families" are dealing with constant worry, and massage is the break they look forward to.  It's great therapy," Kehris adds.

Dennis Lee, a clinical social worker in the oncology/hermatology division of the Children's Hospital, who works closely with those families, is a big advocate of the soothing effect of massage.  "I wish we could offer it in the hospital," he says.

Ronald Glick, M.D., a child and adolescent psychiatrist who worked at Children's Hospital, and now directs the Center for Complimentary Medicine at nearby University of Pittsburgh Medical Center (UPMC) Shadyside Hospital, commends the program as "a terrific area for massage therapy, given the stress these parents are experiencing."

They may resist taking time for themselves, he adds, until they realize the benefits firsthand.

"We talk with them about how massage can help them manage incredible stress and come back even stronger," says massage therapist Jack Smith, who has been with the program for two years.  "People in an edge-of-death mentality like this forget about their bodily needs because they're so focused on their loved one."

He worked on one mother who drove all night from Florida with her son, and another who refused to sleep for fear her daughter would stop breathing.

"You don;t even know how traumatized you are until you're on that table," says Julie Whiteman of Kane, Pennsylvania, who spent two months at the Ronald McDonald House before her infant daughter, Nicole, died of a rare disorder at Children's Hospital.  "When your reality is anxiety, stress and pain, massage is not a luxury.  It's not like getting a pedicure.  It's something you can do besides Ativan and Xanax (two types of tranquilizers) to relax when there's no other way.

More mothers than fathers stay at Ronald McDonald House, including some from far away who don't speak English, Kehris adds.  they can be separates from spouces and close friends for months or even years.

"You get lonely and depressed," says Whiteman, "You crave a healing touch."

Whiteman's first massage was in Smith's chair, which he sets up in the parlor as "an ice breaker."  It convinced her to try full body massage with Kennedy.  "My reality kept creeping in, but eventually I relaxed," she says.  "Elliot massaged me where I needed it.  I felt comforted, cared for.  I felt the compassion in her hands."

Such support helps close the gap between parents' over whelming needs and what hospitals provide.  Better yet, this is done on a nonclinical environment.  Lee says.  Since 1974, Ronald McDonald House Charities have served more than 10 million families at 235 facilities worldwide, providing low cost lodging for weeks, months or years.

Ipek Tetikoglu, 25, has lived at Ronald McDonald House in PIttsburgh for three years with her mother and her sister, Dilek Tetikoglu, now 18 and recovering from a   kidney transplant and other health problems.   Home is Istanbul, Turkey.  "I left my life back there," says Ipek Tetikoglu, as she awaited chair massage one Sunday night.  "I'm exhausted, overloaded."

Lisa Stewart hasn't been home to Madison, Georgia in a year since her son, Justin, 9, underwent a small bowel transplant in Pittsburgh.  Stewart finds massage helps her to sleep.  "I always have an ear open for him," she says of her son who stays with her in a Ronald McDonald House apartment and is shuttled to Children's Hospital daily.  "The pump's always going, and all the I-Vs..."

Another mother, Paula Harris, of Waterford, Pennsylvania, says she has averaged three hours of sleep a night since her son, Jacob Stull, 7, developed complications from a strep infection that began affecting his organs a year ago.  "You're always thinking. "What if , What if..." And your so sad and lonely, even just a hug would feel good," she says.

Ten minutes into a full-body massage with Smith - her first ever - she declared, "Wooonnnderful!"

Kathy Forsyth of Enon Valley, Pennsylvania, whose 4-year-old son had a bone marrow transplant, found relief from headaches and shoulder pain when Morris massaged her.  "Massage is one of those things you think.  "Wouldn't that be nice?" she says.  "I was getting dagger pains from an old shoulder injury I havn't had time to do anything about.  This helped me feel better."

With fewer kids than adults staying at Ronald McDonald House, the number who received massage is small, and, because they are ill, the massage therapist has to be comfortable providing treatment.

Smith performed reflexology on Dilek Tetikoglu's feet months before her transplant. "With her on dialysis, I wanted to avoid big long strokes.  What she needed was an accepting touch, some calm, nurturing communication," he says.

Morris massaged the boy with lymphoma because his mother's experience with craniosacral work had been so positive. "She said, "I think this would help my son,"" recalls Morris.  "He was the first young person I had ever worked on; it was very spiritual."

Siniakin, now the AMTA National Bylaws chair, and director of massage therapy programs at the Community College of Allegheny County, Allegheny campus, in Pittsburgh, advises therapists to check with a child's physician if there is any doubt about whether to perform massage.  Better yet, seek written authorization.

But when massage is an option, ventures Lee, kids would welcome it as "fun, novel, a different kind of touching experience than they are used to in hospitals."

according to psychologist Tiffany Field, director of the Touch Research Institutes at the University of Miami School of Medicine, data suggests that burned children awaiting painful skin scrapings, and even babies about to be inoculated, tolerate procedures better if they have been massaged because their stress hormones, blood pressure and anxiety are reduced.  People giving massage enjoy the same benefits, she suggests.  "The ideal would be parents getting massaged by massage therapists and then massaging their own sick kids," she says.

Glick concurs. "Family members could treat each other.  And massage therapists could teach them," he says.

The therapists who volunteer at the Ronald McDonald House in Pittsburgh wanted their story told so that colleagues in other cities might be inspired to start massage therapy programs, too.  "The fact that the program has endured for 11 years says a lot about the need, as well as the dedication of massage therapist," observers Siniakin.

"The fact that this is volunteer work, it's a different kind of give and take because no money changes hands," says Kennedy, she interned at a hospice in New York City.  "This takes my work to the very foundation of what it is to nurture and heal."

"Once you come in here you're in touch with a different world," she says.  "People tell me that what I'm doing is so grand and I tell them, "No.  It's not."

The work of Smith and his AMTA colleagues has been lauded by medical professionals who would like to see massage  offered in hospitals, where so many family members spend their time.  Psychiatrist Ronald Glick, who directs the Center for Complementary Medicine at UPMC Shadyside Hospital, says the program at Ronald McDonald House is "a terrific area for massage therapy, given the stress these parents are experiencing.  "In the hands of massage therapist Jack Smith, Ruveyde Tetikoglu is able to unwind.  She has been back home to Istanbul, Turkey just once in the past three years, while her daughter Dilek Tetikoglu recovers from a kidney transplant at the Ronald McDonald House in Pittsburgh.  Ruveyde's stress was compounded by the sudden death of her husband this past winter.

Ruveyde, like many Ronald McDonald House guests, has had to bridge cultural and language differences while living in Pittsburgh with her ailing daughter.  Says Smith:  "Massage is a wordless way to communicate compassion.  She's in so much emotional pain and so worried, I'm fortunate to be able to speak to her through touch."

The AMTA Pittsburgh volunteers say they hope massage therapists in other cities will reach out to similar charities in their areas.  "The fact that it's volunteer work, it's a different kind of give and take because no money is changing hands, " says Kennedy.  "It's  spiritual," says massage therapist fellow volunteer Marsha Morris.

In the past 13 years, AMTA volunteers at the Ronald McDonald House in Pittsburgh have included, from left, Eliot Kennedy: Jack Smith: Lois Hurt, chair of the AMTA's western Pennsylvania unit: Marsha Morris; and David Carroll, vice chair of the AMTA's western Pennsylvania unit.  All are practicing massage therapists who have donated their skills to sick children and their families.