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With pomp and circumstance, Angie Koeneker presents the colorful sticker. “Captain Cooperation, for holding still during your blood draw, you have earned this medal!” Ceremoniously, she places the “medal” on the super hero’s small cape. Grinning, 5-year-old Landon Brereton twists his cape around to admire his latest medal of honor. Everyone cheers; his parents and nurses smile with pride and relief.
Before Koeneker presented the young patient with his cape—transforming the small boy into a powerful super hero—Landon had barely been able to pass through the front door of St. Jude Children’s Research Hospital without crying.
“He was having a really tough time coming here. Even the parking lot upset him. He was scared and anxious, plus he felt awful. The nurses had difficulty assessing him,” says Koeneker, a Child Life specialist.
After discovering that the little guy liked super heroes, Koeneker bought him a cape and, across the back, wrote “Captain Cooperation” in big, emphatic letters.
“His nurses and I gave it to him and explained that he didn’t have to be happy when he came to the hospital but, being a superhero, he’d have to use his powers to help the doctors and nurses try to help his body get better. Every time Landon cooperated, he would earn a new sticker—a new medal of honor,” she says. “Our ‘captain’ was able to use his cape as a way to cope with what he was going through at St. Jude until he didn’t need it anymore.”
The super hero cape is just one of the tools Child Life specialists might use to help St. Jude patients and their siblings overcome anxiety and understand medical procedures. Child Life experts assess the needs of each child and teen and then provide services that help nurture the child by focusing on strengths, encouraging normal life experiences and increasing coping skills.
“Sometimes the kids are angry or frustrated. They get tired of their treatment; they miss home, their normal lives,” explains Child Life Specialist Shawn Brasher, who works with patients undergoing stem cell transplants and their siblings, whose lives are also disrupted.
Therapeutic art activities can work wonders to help children express their feelings on their own terms. “One art project we did was to decorate plastic urinals with pictures and words showing stuff we were sick and tired of. Then we set them up like bowling pins and knocked them over,” he says.
Brasher and the other Child Life specialists also use stuffed dolls for medical play to teach patients and siblings about procedures and treatments. Letting children practice putting in central lines or inserting IVs helps them understand what happens and also allows for the release of feelings.
Inpatient Child Life Specialist Amy Kennedy attends medical rounds each morning to share medical and psychosocial information about “her” patients and families. “The more I can learn and know about my kids and their families, the more I can support their adjustment,” she says.
“If I can make an impact—make life a little less scary, a little more fun and normal for my patients, their siblings and their families—then it’s all worth it,” Kennedy says. “Even by doing little things.”
Those small details seem to make all the difference: simple actions such as helping a boy in the ICU make a birthday bag for his sister, arranging for a patient to spend a week at summer camp or racing silly, mechanical wind-up brains to elicit laughs. These “little” things can help buoy a child’s spirits and sense of self.
The big things are, of course, crucial, too. “We had one boy who thought he gave his brother cancer by pushing him down,” explains Crystal Rust of Child Life. “No matter what you’re explaining, you have to use concrete language: ‘There is a lump of sick cells in your brother’s body that shouldn’t be there. It’s called a tumor, and it’s no one’s fault. There is nothing that you or your brother said or did that made this happen.’”
Child Life specialists might read a book or do a workbook with such a child to help him express his internalized feelings. Or they might arrange to tour the lab to show him the “sick cells” on the X-rays or scans.
For teen patients and their siblings, the Teen Room is a refuge away from parents, doctors and other grown-ups.
“We have ‘Coffee Talk’ just for teens to talk and share their feelings,” says Clare Gardner of Child Life. “One meeting sparked a conversation between a patient and another patient’s sibling. The sibling explained how hard it can be as the sister of a cancer patient: how she felt left out, pushed to the side, while at the same time she was worried and was unable to concentrate in school. The patient said she hated that her sisters were jealous of her because she gets so much attention. She didn’t want all this attention, she said, she just wanted to be normal like them. This exchange happened naturally; I think they both left with a new understanding.”
Child Life employees keep in touch even when patients go home. “If a child is at home with hospice, for example, we want them to know that they are not forgotten—that they are still in our hearts. Therefore, we keep in contact with them along with staff from their primary clinic. Every couple of days, we send them special cards that everyone on their team signs,” Koeneker says.
“We’ve heard that these have meant a lot to the kids and their families. Some kids can’t wait to check the mail each day, or they’ll keep the cards by their bed to remember how many people here love and miss them.”
Child Life specialists also send letters and resources to siblings at home so they understand what’s going on with their brother or sister at St. Jude, and so they don’t feel left out or unimportant.
Whether they’re helping a child or teen develop coping strategies or create “legacy” art work, Child Life specialists work in collaboration with the rest of a patient’s St. Jude team.
“Often, parents ask to see Child Life when we are trying to resolve a stressful situation for the child,” explains Carlos Rodriguez-Galindo, MD, Hematology-Oncology. “For example, my little kids with retinoblastoma have to undergo multiple eye exams under anesthesia. Most of them panic with the thought of eye drops or the anesthetic gas. This is a very stressful situation for the children and their parents, which recurs every few weeks. Raye [Pietruzska] and Crystal [Rust] know these children very well; they are always with them in clinic or upstairs before they undergo these procedures.
“At first, I remember that it almost hurt my feelings that the parents and kids kept asking for Child Life; you know, I—the doctor—was right there, trying to be supportive and take care of the problem ….” He smiles and adds, “but you get used to it. Actually, I rely so much on them that I am now the one who calls for help.”
Reprinted from summer 2005 Promise magazine
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