Messenger - Vol. 2, No. 1, Page 6 Fall 1992 Nurse of the Year Every family with a chronically ill child should have a nurse like Gail McIlvain-Simpson, Delaware '79. Delaware's 1992 Nurse of the Year is a compassionate encourager and educator who believes in empowering patients with information to make their diseases less frightening. She remembers patients by their first names and memorizes the little details of their lives, so that she can chat about their hobbies and interests. "It's nice for patients when you can remember things about their lives other than the medical areas," she says. McIlvain-Simpson is a clinical nurse specialist in pediatric rheumatology at the Alfred I. du Pont Institute in Wilmington, Del. She says she's humbled, proud and honored by the award from the Delaware Nurses Association. For now, it rests on the floor of her office, propped up next to a chair, because she just hasn't had time to get it hung up. What McIlvain-Simpson has had time to hang are numerous crayoned drawings, all gifts of friendship from young patients. She also hangs up photos-Little League shots, Christmas cards, even a graduation picture or two-all from the grateful kids and families she has helped over the years. "I would have to say Gail is one of the best people I have ever met," Connie Bloomer of Bealton, Va., says. The Bloomer's daughter Amanda, 12, was diagnosed with lupus when she was 6 years old. Amanda's relationship with McIlvain-Simpson is one of the reasons the family continues to travel back to Delaware for treatment, even though they have moved to the Richmond area. As her mother describes it, Amanda's disease is an auto-immune disorder. "If Amanda has a germ or bacteria, sometimes her system won't shut off. After the germ is gone, her system continues to attack her body tissue. It could attack her heart, her brain, her blood cells, her joints. It causes a variety of different problems. "Unlike a lot of handicaps, the disease is totally disguised. On a good day, you wouldn't know there is anything wrong. "Gail is the person who has encouraged Amanda to do what she can when she can. She gives her the confidence to get through things as they come. "Gail keeps in touch with Amanda constantly," Bloomer says. "She remembers her birthday, remembers her on holidays and sometimes calls right out of the blue." "Gail has always been there for me," Amanda adds. "I knew she was special from the beginning when my parents had to go into another room to talk with the doctor, and Gail stayed to talk with me. She's always been there when I needed to talk and she's more of a friend than a nurse. "Someday, I'd like to be a rheumatologist, and Gail's helped me decide that," Amanda says. As a child growing up in Bridgeville, Del., the daughter of Kenneth and Doris McIlvain, there was never any question in McIlvain-Simpson's mind about what she would be when she grew up. "I just always wanted to be a nurse. Anytime we would play dress up that's what I would be." She earned her bachelor's degree in nursing from Delaware and went on to get her master's in the nursing of children from the University of Pennsylvania in 1986. Her husband, David, is also a health-care provider-a physician-and the couple lives in Wallingford, Pa. She has worked at the A.I. du Pont Institute for 12 years-four in the post-op unit and two as nursing manager of the recovery room. She now works with chronic illness-diseases that can't be cured but can be controlled through proper treatment. Working with chronic illness appeals to her, she says, because "you can really get to know the patients, and you can become comfortable with the specific illness. We have very good follow-through with patients. There are some I've seen for as many as five years." McIlvain-Simpson is generally the first health professional a family sees when a child is brought in for evaluation. She takes down the medical history and later confers with one of three physicians in the unit. Her work with children with juvenile rheumatoid arthritis and lupus involves a lot of interaction with the patients and their parents and a lot of trouble-shooting. Sometimes, patients have been referred to as many as five different doctors before ending up at A.I. du Pont, she says. Symptoms of both these diseases vary from individual to individual and cannot be confirmed by any one diagnostic procedure, so the search for a diagnosis may have been a long and elusive one, she says. "Arthritis and lupus are not predictable," she explains. "We can do some X-rays and some lab work, but what confirms either disease is really clinical diagnosis. Once we have that, we can treat the symptoms but not the cause because the cause is still unknown." Despite the lack of permanent cures, McIlvain-Simpson says she works in a hopeful area of the hospital. "For the most part, our children do extremely well," she said. "They are not disabled or in wheelchairs. About 70-90 percent of children with arthritis don't have huge limitations. They go to school, play on sports teams and, because the disease is a hidden one, they seem especially motivated to overcome it and push themselves to excel." She cites as examples a committed ice skater, a championship diver, a soccer player, a baseball player and a member of a marching band- all of whom are her patients. When there are adjustments to be made because of the illness, McIlvain-Simpson is there. "I handle a lot of the telephone calls and answer questions about side effects of medication or how to give a 2-year-old medicine," she said. "For the first four months after the initial diagnosis, families need a lot of psychological support. "We teach families about medications and the day-to-day issues they are going to have to deal with. We also work with gym teachers and school nurses. Sometimes, children with arthritis will be stiff, and we suggest that teachers give them extra opportunities for movement during a class by, say, letting them help erase the blackboard and pass out papers. When they get older, they may need a few extra minutes to walk between classes. "We try to get our parents and children to cope by being advocates for themselves, and most of them are excellent at doing that. We have 7-year-olds who remind their parents to put their splints on at night, and one 4-year-old who will always tell us when her mother forgets to give her a pill. "We encourage teenagers to call by themselves and schedule their own appointments. Our goal is to make them health consumers." In clinics held four afternoons a week, McIlvain-Simpson may see as many as 150 patients a month, some returns and some new referrals. Ninety percent of the patients are seen on an out-patient basis. They range in age from birth to 21 and come from as far away as Maryland, Virginia and western Pennsylvania. Each year, there are patients who are going off to college and to new health-care providers. It is a bittersweet part of McIlvain-Simpson's job to assist with the transition. But until there is a cure, there will always be new patients coming in. Ryan Pennington, age 4, has arthritis, and lives with his mother in Aberdeen, Md. Gail and others at A.I. du Pont have been working with Ryan for about a year and, in that time, his progress has been phenomenal, his mother says. For two years prior, Ryan was treated at another health-care facility where his mother says he made no progress. "I was watching my son become a cripple right in front of my eyes," Pennington recalls. "Before, he would be stiff all day; now, he is only stiff in the mornings. At one point, he couldn't even turn himself over in bed or get out of bed to go to the bathroom. I always had to carry him. Now, he can get out of bed and do lots of other things for himself. I am so pleased. "Gail has been there for me, too. She's directed me to physical therapy and helped with the financial end. She's put me in touch with other parents whose children suffer with arthritis so we can talk and share. "Ryan can be in a bad mood and not even speak to me on our drive to the hospital but Gail can get him to open right up. She's helped him to the point where he doesn't even cry any more when he gets a shot. "The first time Ryan could stand on one leg and the day he could hang from the monkey bars were big deals for us. I'm just so grateful that we found A.I. and Gail. She's just the best person." -Beth Thomas