Isolated in a tiny hospital room in Memphis for 54 days after a life-saving bone marrow transplant, sick and hurting in every way possible, 15-year-old Sarah Johnson had endless hours to parse the words spoken to her and their connotations. Drawing on her experience, Johnson has written a children's book that aims to explain how words intended to encourage children can help and harm.
Isolated in a tiny hospital room in Memphis for 54 days after a life-saving bone marrow transplant, sick and hurting in every way possible, 15-year-old Sarah Johnson had endless hours to parse the words spoken to her and their connotations.
Well-meaning doctors would listen to her litany of symptoms — constant fever and nausea, respiratory distress, kidney problems, even a burning feeling in her feet— and often leave her with a response meant to reassure but that truly grated on her: “It’s only temporary.”
The symptoms didn’t feel temporary to Sarah. They felt like a life sentence.
“We made a note and posted it in her room,” said her mom, Patty Johnson. “It said, ‘You may not say this in my room.’ One of the things was, ‘It’s only temporary.’ ”
Other messages Sarah found helpful. Among them were the words that closed each note from Blaine Fitzpatrick, a Rivermen hockey player Sarah had befriended when she was 12: “Stay tough as nails.”
“I felt like it was recognition of the courage it took to go through cancer treatment,” Sarah said.
Sarah, tough, wounded and courageous, made it through the brutal treatment. She lost two years of high school. She went to college and majored in communications and human services. And when she was given an assignment to write a children’s story, she chose to bring others into the world of the young cancer patient and examine how words can harm and heal.
Sarah is 23 now, and her assignment is a book that was released this summer. Some of the proceeds benefit St. Jude Children’s Research Hospital, where Sarah learned the power of words.
“Come walk with me in the hospital,” invites the little girl in “Oops! Did I say That?” “You’ll see what people say to children with cancer and how it makes us feel.”
‘A bad feeling’
Sarah was 14, less than three months into her freshman year at Peoria Notre Dame High School. And she was complaining about soccer — it kind of made her joints ache.
“Typical 14-year-old stuff,” she said. “Whining. Sleeping 24-7.”
She got sick and was running a fever at night. She decided she needed to go home in the middle of a school day, Wednesday, Nov. 8, 2000. “Are you sure you can’t stick it out?” the school nurse asked.
She was sure. The next day, Patty called her pediatrician, assuming Sarah had mono, just like her older daughter had in high school.
“I just had a bad feeling,” Patty Johnson said. “Amy’d had mono as a freshman. I insisted we go in to the doctor.”
Her own doctor was gone, but another saw her. She, too, had a bad feeling about the girl. She did the mono test, as Patty requested. And acting on her hunch, the doctor ordered a complete blood count.
“She saw other children that day, that week, who had the same symptoms,” Patty said. “She said Sarah just seemed a little sicker than the other kids.”
Sarah’s own pediatrician called Patty the next day.
“We strongly feel it’s leukemia,” the doctor told her gently. “You need to take her to St. Jude.”
Patty asked if she should call for an appointment.
“No,” the doctor said. “You need to take her there right now. They’re waiting for you. Go wake Sarah up and get her dressed.”
Patty called her husband, Chip, and told him. Then she went to wake Sarah and tell her two things, one of which moms tell their daughters every day: “Get dressed, we need to go.” The other was infinitely more difficult to say. “They think you have cancer.”
Sarah cried, and she had questions. Her mom had no answers.
“But I made a promise to her that day that I would not lie to her, and I would not keep things from her,” Patty said.
Over the next several months, there was much bad news to tell. The first was the rare kind of cancer Sarah had.
“Acute lymphoblastic leukemia is the most common kind of childhood cancer,” Sarah said. “Its survival rate is 94 percent. Because I had Philadelphia positive acute lymphoblastic leukemia, my survival rate was 30 percent.”
She had chemotherapy and full body radiation, but her only hope to beat it was finding a bone marrow donor. That was no simple matter.
Sarah’s parents adopted her from South Korea. The best match would be someone from South Korea, but that country’s donor registry operates differently, and there was no time to jump through hoops to get on it.
Doctors searched China, Taiwan and the United States. Three people were screened as possible matches. One made the cut — a 57-year-old woman from California.
“To think I had one match in three countries,” Sarah said. “And China is not a small country.”
In May 2001, Sarah had a bone marrow transplant.
“It was really anticlimactic,” Sarah said. “It was like 50 ccs of pink Gatorade.”
Sarah’s body handled it poorly, and she had many complications. She became even more sensitive to how people spoke to her.
She and her mom began a tradition that found its way into the book she’d later write. They made a conscious effort to find one thing positive about every day, and to write it down.
“It was really tough sometimes to come up with something good,” Sarah said. “ ‘They had Bagel Bites for lunch.’ ‘I stayed awake for my favorite show.’ ”
When Sarah was in eighth grade at St. Thomas School, an excited kindergartner came running up to her in the hall.
“Are you adopted?” Julie Hendricksen of Dunlap asked Sarah. “In my little kid naiveness, I went over and said that to her.”
Julie and Sarah are both Asian and were adopted into Western families. It was the first time Julie had met someone at school who looked like her.
Sarah made it a point to befriend the little girl.
“I just looked up to her so much,” said Julie, now a junior at Peoria Notre Dame. “She made me feel like we were good friends.”
That careful kindness is typical of Sarah. So she found it bewildering when people said things to her that seemed less than kind, or were kind but obviously untrue, such as “You look good.”
“As a 14-year-old, being bald and being puffy from steroids, and at the lowest weight I’d ever been — I did not look good,” she said. “I know that they had the best intentions at heart. I know that. But some of the things they said did hurt me.”
When one of her professors at Millikin University assigned the children’s book, Sarah knew immediately what hers would be about. She stunned the class when she read hers aloud. But her professor had an idea. She should get it published.
Sarah took independent study in publishing, and she refined her book. Originally, she’d illustrated the book with pictures of other patients at St. Jude. But many were dead, and Sarah didn’t want to publish anyone’s picture without their permission. Stephanie Gagnon, a fellow Millikin student, drew illustrations for her. Many people at Millikin helped.
Sarah interviewed other cancer patients and physicians.
“I wanted this to have credibility,” she said. “There is my own heart in this. But there’s also a lot of research.”
Her book is written from the perspective of a 7-year-old girl who has cancer. It’s a picture book, but it’s intended for all ages. It was important to Sarah that the book reach adults without turning them off or offending them.
“If I took it from a children’s perspective, it seemed to give it a softer touch,” she said.
No family can have a member so in peril and emerge the same.
“It totally changed our lives, to this day,” Amy said.
There was steep cost to everyone.
Chip had to stay behind in Peoria to work and look after Amy. Though he visited Memphis when he could, he was lonely for his wife and younger daughter. His life was waiting for phone calls from Memphis.
“Sometimes Patty couldn’t call for a while, and I’d just wonder,” he said.
“Dad would wait by the phone,” Amy said. “That was the sad part.”
The toll on Amy was pretty terrible, too, and not just because she missed her sister and mother. She was supposed to spend part of her senior year in a study abroad program in France. Her parents flat-out said they couldn’t take having to worry about her and Sarah both.
Even the day Sarah was diagnosed should have been Amy’s special day — it was the anniversary of the day the Johnsons adopted Amy.
“So the anniversary, France and her senior year I kinda wrecked,” Sarah said.
Amy mostly got herself through senior year, always doing the work, but often turning it in late.
“I missed 75 days of school my senior year,” she said.
Sarah missed two years of high school. Once she had the bone marrow transplant, once the doctors knew it had taken, and she would emerge cancer free, she had to stay home a year to build up her immune system. She wore a medical face mask the entire time.
Patty quit her job to take care of Sarah in Memphis, where the pair lived for 9 ½ months. She had to look at pictures another mother took of her oldest daughter going off to prom, in a dress she did not help choose.
But having been to hell and back, the four are unanimous in saying they are better for it.
“There’s been more good come out of it than bad,” Chip said. “It made us a closer family.”
It also influenced Sarah’s career in a tangible way. Not only is she a published author, but she works in blood services for the American Red Cross as a donor recruitment representative.
“I’d been a blood recipient, and I felt like I wanted to give back to an organization that gave me a second chance at life,” she said.
Sarah recruits donors and sponsors, a job that’s obviously personal to her as well as professional.
“It’s not just a blood drive,” she said. “If it were your mom, dad, son, daughter, sister, brother, wife or husband, would you donate? Because it is someone’s mom, dad, son, daughter, sister or brother. I’m the proof.”
Jennifer Towery can be reached at (309) 686-3119 or email@example.com.
‘Oops! Did I Say That?’
- What: A guide to positive support for cancer patients. The flip-format picture book is intended for all ages.
- Author: Sarah K. Johnson of Peoria Heights, a cancer survivor.
- Publisher: Bronze Man Books, a Millikin University Press.
- Cost: $12. The publisher is donating 10 percent of all proceeds to St. Jude Children’s Research Hospital.
- To order: www.bronzemanbooks.com/oops or e-mail Johnson at firstname.lastname@example.org.
- Book signing: After each Mass on Nov. 7 and 8 at St. Thomas Catholic Church, Peoria Heights.
- Book release party: 7:15 p.m. Nov. 5 at Perkinson Gallery, Millikin Univer