Sarah's Story

Nothing Scares Her Anymore

Twelve-year-old Sarah Larson is a kid you can't help hugging, she's that sweet. Sarah speaks with enthusiasm about her pet cats, Posh and Ralph, her best friend Kelly, and the great lunches her middle school serves: "They have real pizza! And curly fries! I love curly fries!"

Sarah appears the picture of health with her chubby cheeks, peachy skin and joyful smile. And she keeps her poise when the conversation shifts from pets and friends to the grueling year of treatment for acute myelocytic leukemia (AML) that began when she was 8.

Sarah hits the high points of that traumatic year:

• The day she was allowed to leave the hospital for the first time in four months, on a six-hour pass to see the Seattle premier of the new "Star Wars" movie.
• The friends she made, including 13-year-old Kelly, who also had leukemia.
• The Make-a-Wish Foundation-sponsored trip to the San Diego Zoo to be a zookeeper for a day. "I got to hand-feed a giraffe and an anteater," Sarah recalls. "And I got my own zookeeper uniform."

Vague signs, aches and pains

It's left to Sarah's mom, Julianna, to fill in the blanks about Sarah's year-long battle with AML, with the occasional comment from Sarah, who sits snuggled against her mom as they tell Sarah's story.

Sarah was only 8 when she got sick. The family, which also includes three brothers--Brandon, Kalen and Justin--was living in Gig Harbor. Sarah's parents were recently divorced, and her dad Scott had moved to Tacoma.

The first signs were vague, Julianna recalls. Sarah was tired; she lost weight. She had an ear infection and pain in her leg. Then a sinus infection. She was treated with antibiotics, but Julianna still worried.

Back at the doctor on Feb. 8, 1998, Julianna insisted on a blood test, thinking her daughter was anemic. The family doctor did the blood test, but Julianna says he knew without seeing the results. "He pulled me out into the hall and said, 'It's something leukemic.'"

Julianna left her youngest son behind at the clinic in Gig Harbor to be picked up later by his father, while she drove Sarah straight to Children's Hospital and Regional Medical Center, where she was admitted. "Not knowing that once we got there that we weren't going to leave for a year," Julianna says with a laugh.

Sarah was put on chemotherapy right away, while the search for a bone marrow donor began. Sarah's middle brother, Kalen, then 14, wanted to be the donor, Julianna says. "So we were all tested, and before the results were back, he asked me to 'pray for me that I'll be the one,'" she continues. "So each night over the phone we'd say prayers together, and he was the one."

Kalen was a perfect match, Julianna says.

Balloons for "Transplant Day"

Sarah had continuous chemotherapy as an inpatient at Children's until two weeks before her transplant, when she was moved to the Fred Hutchinson Cancer Research Center, where the transplant was done on June 18.

"It didn't hurt or anything, it was just like a regular transfusion," says Sarah casually of the procedure that saved her life.

The staff at the hospital celebrated Sarah's transplant day like a birthday. "They called it her birthday," Julianna says. "She got presents and balloons, and there were clowns. They made a big deal of it."

After the transplant, Sarah continued as an inpatient for the next four months, getting daily infusions, dealing with infections and pneumonia--all common problems for transplant patients.

During the long hours together in the hospital, Sarah and Julianna read together and did lots of jigsaw puzzles. "That was fun," Sarah says. "The nurses liked to do them, we'd get five people doing them." Julianna stayed at the hospital full-time, "I slept in the bed with her," she says.

Sarah's dad Scott stayed at the Ronald McDonald House with little Justin, and brought him to be with Sarah and his mom during the day. Other relatives took care of the older boys.

Julianna says Sarah and her youngest brother, now 10, were especially close, and she wanted Justin to be there with Sarah. "If we lost her," she says, "I wanted him to have every moment he could with her. "

Once Sarah was released from the hospital, she and her mom stayed in an apartment nearby as Sarah continued treatment on an outpatient basis. And finally, in January 1999, she went home.

Julianna says of the care her daughter received at the SCCA partner organizations: "They really involve the parents. We weren't left like outsiders. They are very family oriented, They understood the family dynamics of treating a child. You are treating the whole family when it's a child.

"The Hutch and Children's doctors worked together to take care of Sarah, and there were never any mishaps or miscommunications. Everything went very smoothly. They communicated very well."

One thing Julianna especially appreciated was that Sarah's doctors always allowed her to hold Sarah whenever the child had to be put under anesthesia. "They always let me hold Sarah when they put her to sleep," Julianna says. "That made it less scary."

Recovery

Sarah spent about a year recovering at home, with frequent doctors' visits, before she was ready to return to school. Julianna says that one of Sarah's doctors told her, "She's going to be tired for a number of years. Don't be surprised, she'll be tired for a long time."

The chemotherapy affected Sarah's memory, and she had to relearn numbers and letters. She also had a form of dyslexia, where she would reverse letters.

Now a sixth grader at Kopachuck Middle School in Gig Harbor, where she plays flute in the band, Sarah is a year behind her age-mates, but neither she nor her mom cares much about that.

Sarah comes to SCCA every three months for follow-up appointments. And because the heavy chemotherapy she received destroyed her pituitary gland and ovaries, Sarah is scheduled to begin a course of growth hormones to help her develop normally.

Looking back at how this experience has changed their lives, Sarah says she used to be shy, but not anymore. Julianna adds, with tears in her eyes, "Nothing scares her. She's not afraid of anything anymore."