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11-year-old shares her story battling cancer with classmates

May 5, 2019

WALWORTH, Wis. (AP) — Sophia Stewart can describe her journey from cancer to wellness through bead necklaces.

While the fifth-grade student at Walworth Elementary School was getting treatment for leukemia, she received beads of courage from health care professionals to mark every step of the way.

Black ones symbolized “pokes,” when Sophia had blood tests or shots. White ones symbolized chemotherapy.

Sophia has 24 beads that mark the number of spinal taps she had to endure, the Journal Times reported.

Blue beads represented clinic visits. Red meant blood transfusions. She has six of those beads.

She received a special bead for hair loss.

Yellow marked overnight stays at the hospital. Sophia has nearly 100 of those collected over three years.

An ambulance trip earned her a star on her necklace.

But there were pains that she suffered for which there were no beads. When Sophia was in first grade, she lost her hair to chemotherapy. At the school she was attending at the time, older students teased her about her baldness.

Her mother, Connie, said Sophia never disclosed the teasing until just recently. Sophia and her mom live in Walworth now, and the 11-year-old cancer survivor recently transferred to Walworth Elementary School.

On April 10, her teachers held a special half-hour meeting with 60 fellow fifth-graders where Sophia shared her story by explaining each of the beads on her necklace.

School counselor Jennifer Ott-Wilson said it is uncommon for her to call students together to meet with a new classmate. Ott-Wilson did it once before for a girl who was suffering from a condition that caused baldness.

This meeting was something Sophia wanted to do.

“It was Sophia’s decision to tell the class about her experience,” Ott-Wilson said.

The fifth-graders quietly filed into the school’s counselors’ office, which was the size of a classroom. They sat on small chairs, overstuffed sofas, bean bag chairs and cross legged on the floor, all facing Sophia.

Sophia is a quiet girl, and she was a bit nervous about this special assembly. But she got help from her mom and Ott-Wilson.

Connie Stewart said Sophia was 5 years old when her first symptoms occurred. Playing T-ball, she had a hard time running because her back hurt and her legs hurt.

Stewart said doctors had a hard time diagnosing what was wrong. Some thought it was growing pains; another thought it was appendicitis.

It was not until a doctor took a close look at Sophia’s blood work that he noticed something wrong. He sent Sophia to Children’s Hospital of Wisconsin in Wauwatosa.

There, doctors discovered the little girl had leukemia.

Stewart said her daughter was diagnosed with acute lymphoblastic leukemia, a blood cancer that attacks the body’s immune system.

The disease also attacks the body’s main blood-making area, which is near the hips.

Sophia said a doctor told her that her “blood factory was malfunctioning.”

While the disease can be fatal if it is untreated, compared to other kinds of cancer, it is easier to treat. But that does not mean it was easy for 5-year-old Sophia.

“Cancer involves a lot of treatments,” Stewart said.

At the assembly in the counselor’s office, Sophia’s new classmates did not ask questions.

“What do you want your fellow students to know?” Ott-Wilson asked Sophia.

“I don’t know,” Sophia said, still feeling shy.

Ott-Wilson asked the students what they thought Sophia felt when she was diagnosed with leukemia. Some students replied “scared;” others said “sad.”

Ott-Wilson said she saw courage.

“She’s inspired me about what courage is,” Ott-Wilson told the students.

Sophia showed photos from events that occurred during her treatment for leukemia.

One was a picture of her wearing a hat crocheted by a Walworth library group.

Another showed a trip she and her family took to Give Kids the World Village, a nonprofit resort in Florida that provides vacations for children with critical illnesses.

And, of course, there were the beads. Strings and strings of them.

The beads are manufactured and provided to clinics and hospitals by a nonprofit called the Beads of Courage Program to hand out to children undergoing treatment for life-threatening diseases and injuries.

Sophia displayed one special bead, in the shape of an anchor. It represented the support she received from her family and friends while she went through three years of treatments.

Stewart said her daughter ended treatments on March 11, 2016.

Now, Sophia goes back to a clinic once every three months for blood work, to make sure that the disease does not come back. In a year or so, those will become annual visits.

Although she is shy when talking about her illness, Sophia loves to talk about things she likes to do now that she is on her way to wellness.

She now plays soccer and competes in track, doing the hurdles, the shot put, throwing discus, and doing the high jump.

She feels no pain in her legs.

Sophia said she also loved her time at Camp One Step on Geneva Lake, a weeklong camp for children who have cancer.

“That’s the best camp ever,” Sophia said.

She said last year was her first year at the camp.

Sophia sees her future in the kitchen.

“I want to bake,” she said. She said she watches and enjoys baking shows on television.

She said she loves to bake cookies, cupcakes and brownies. Nobody else in her family is a baker, she added.

“I’ll be the first one,” she said.

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Information from: The Journal Times, http://www.journaltimes.com