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Young cancer patients don't need insensitive remarks

by Huey Freeman, H&R Staff Writer

Herald & Review • April 6, 2009

DECATUR - It is a small book with a powerful message.

On first glance, it is a children's book with colorful illustrations depicting young hospital patients, with suggestions on how to talk to them. But this is not an ordinary picture book, not something a parent might read to a child to pass the time or help improve his reading ability. "Oops! Did I Say That?," written by Sarah K. Johnson, packs a powerful emotional wallop. Johnson, 23, who survived a battle with a deadly form of leukemia as a high school freshman, has produced a passionate, heart-rending plea for readers to understand the importance of sensitivity to children who live at death's door.

"It completely angered and frustrated me when people said really insensitive comments without thinking them through," Johnson said. "It is my hope that other patients won't have to experience the same hurt and disappointment from hearing people's ignorant comments."

While Johnson, a Peoria area resident, was undergoing nine months of treatment for Philadelphia Positive Lymphoblastic Leukemia - which has a 30 percent survival rate - she was repeatedly disturbed by comments some well-meaning visitors and caregivers made to her. The phrase she hated the most was, "You look good."

"It made me feel like they were lying to my face," said Johnson, a cheerful, attractive Millikin University graduate, who visited Decatur recently for a book launching event. "I felt poor. I knew I was bald. I was chubby from steroids. I was an avid soccer player before I was diagnosed."

In the book, Hope, a 7-year-old cancer patient, explains that telling a patient that she looks good "hurts our feelings when you say this because we know we don't look our best¦ Please be aware that our self-esteem isn't at its highest." Johnson interviewed about 30 young cancer patients and survivors for her book, which reinforced her idea that hurtful communication is a widespread problem. The patients complained that doctors and nurses often spoke down to them, as if they were much younger, or over their heads, using medical jargon they did not understand.

Johnson's book began as an assignment for a children's literature class at Millikin. "My professor, Mary Dwiggins, was a big inspiration," Johnson said. "She said, 'You really should get this book published.' " Johnson later set up an independent study class with English professor Randy Brooks, to help reach her goal of publication. Brooks, along with art professor Ed Walker, had recently founded a student-owned publishing company, Bronze Man Books. The publisher later accepted Johnson's manuscript. "I was ecstatic to have Bronze Man take on my project, especially with students involved," she said. An artist she met in a Web design class, Stephanie Gagnon Pezzelle of Sullivan, volunteered to create the illustrations. They depict children in unfurnished hospital rooms, reacting sadly to hurtful messages, or smiling broadly in response to carefully chosen words of encouragement.

Johnson's ordeal began Nov. 5, 2000, two weeks before her 15th birthday. Within a few days of feeling ill, she was diagnosed with leukemia and told she should go to St. Jude's Research Hospital in Memphis for treatment. There, she was told she had a rare form of leukemia, caused by chromosomal abnormalities, which kills more than two-thirds of its victim within five years. At the time a physician informed Johnson of her diagnosis, she was already undergoing chemotherapy and feeling very ill and fatigued. Her mother, Patty Johnson, recalled that Sarah's response was, "Am I going to die?"

Sarah Johnson, who stayed mostly positive during her nine-month struggle, recalled that she had many valleys to overcome, especially the grief when other children died. "There were so many emotional disappointments, because you made friends and lost them," she said. A high point was when Sarah, a Korean native with adoptive parents, found a bone marrow transplant match - a California woman of Chinese descent. "It was a perfect match," Sarah Johnson said, adding all six of six blood markers matched up, increasing the chances of success. In some cases, no perfect match is found, so transplants are attempted in which as few as three markers match."

"I was afraid she would die before she got a match," Patty Johnson said.

While she credits the transplant with saving her life, Sarah believes encouraging words also can play a role in recovery. She fondly recalled that a friend, a professional hockey player, lifted her spirits when he told her to "stay tough as nails." "When he said that to me, he recognized I had that strength in me somewhere," Sarah Johnson said.

hfreeman@herald-review.com | 421-6985

http://www.herald-review.com/articles/2009/04/06/life/features/1040362.txt (April 6, 2009)

Citation

News Story. "Young cancer patients don't need insensitive remarks." Herald & Review, (Decatur, IL), April 6, 2009.

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