Power of unity : Mother and two daughters deal with hope, humor and hats
Posted on Monday, February 11, 2008
Now, as she thinks back on the news she received in early December, Julianne Lewis - her head shaved - recalls the early signs that something might have been wrong.
"She had pleurisy, which is like a lung infection, and then she never got better from that. And then she was having headaches and fever. Then she started to have some joint pain," she said of her daughter Sara Caroline.
The 11-year-old girl ended up at the emergency room on Thanksgiving because of the pain. And she had to go back three times.
"They thought she had juvenile arthritis," Julianne said, sitting on the couch across from Sara Caroline. Julianne's 16-year-old daughter, Savannah, sits nearby, helping with the story - her locks also gone.
"And then the doctors here couldn't get the pain to stop," the mother said.
At the behest of a pediatrician, mother and daughter went to the emergency room at Arkansas Children's Hospital in Little Rock. Tests were performed. At one point, Sara Caroline saw the hematology / oncology clinic sign and asked her mother if she had cancer.
No, she did not have cancer, her mom answered.
After all, Julianne had been looking up information about juvenile arthritis on the Internet, so that was the disease she was researching, not cancer.
But after the tests were done, the doctor told mother and daughter - in separate rooms - that Sara Caroline had acute lymphoblastic leukemia.
Julianne said she is thankful that the doctors did not give her a lot of choices about what to do for her daughter. The course of treatment for this form of leukemia is pretty set.
"It was such a shock to me that I couldn't have been able to make a lot of decisions," she said. "With leukemia, they've done all this research, and they have all this in place."
The first step was that Sara Caroline had to begin chemotherapy at the hospital. About 10 days later, they returned home to Savannah and the family dogs - a Pomeranian and a black Lab mix.
A doctor told them that the family could not have pets, but the girls and Julianne weren't having it. The dogs stay inside and have to stay clean because of Sara Caroline's immunity being compromised.
There are other limitations. The family cannot go to crowded restaurants. They went to a movie once where there were about three other people.
Sara Caroline could not go back to school. Her sister, too, cannot go back either because she has a temporary autoimmune disorder - something that came up before her sister's cancer.
Schedules create other challenges - once a week, a trip to Little Rock for chemotherapy. Sara Caroline has to take pills at home.
Julianne, who teaches English and drama at Woodland Junior High School, works her schedule to fit the changes in her family's life.
"My mom's been helping me a lot," she said. "It's just hard to take off work."
Sara Caroline tries to stay active, like any 11-year-old would want to be.
"I have a miniature bike that's small enough for me to ride in the house," she said.
Her friends from McNair Middle School visit her, and she has a tutor.
She is in her first phase of treatment, which lasts six months before she goes on to the next one. So far, she has responded rapidly to the chemotherapy.
Sara had her head shaved when she began losing her auburn locks, and mother and sister true to their promises - did the same thing. They couldn't take her with them when they went to the hat sale at Dillard's at the Northwest Arkansas Mall. There is now a collection of everything from ball caps to berets in the coat closet. Because of their shaved heads, they call themselves "The Baldie Beans."
Mom said Sara Caroline is a trouper.
"She doesn't complain. She's really good about it," Julianne said. "The nurses down there have said she's been really wonderful."
Julianne and her daughters try to have fun together, despite the serious health issues they are facing.
"We try to just try to keep a sense of humor about it," she said. "I think we've gotten really good at adjusting."
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