Two-year-old twin, Dance Marathon patient combats cancer

BY DORA GROTE | JANUARY 31, 2013 5:00 AM

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Bethanie Johnson and twin sister Marleigh make for a rambunctious set of “terrible twos.” They pitter-patter through puddles, bang household pots and pants, and color outside the lines — all while sporting an impish grin.

But even though Bethanie seems like a typical 2-year-old, sitting in her highchair, eating a hot dog with mouse bows pinned to her short brown hair, she’s matured faster than her sister — in more ways than one.

“She was the first one to pull herself up and the first one to crawl out of the two twins,” said father Jason Johnson. “But now, she’s matured faster emotionally, she talks more, she understands more things. Kids are resilient. They think, ‘This is life, OK. Boom. I’m going to take what I have and be happy with it.’ ”

When Bethanie’s developmental progress started to regress, and crying became constant, her parents knew something was wrong. They checked her arms and legs for signs of injury, but didn’t see any problems.

“She went from being this happy independent little baby to just crying,” said mother Melissa Johnson. “She would only stop crying when she was in my arms, and she’d start crying as soon as we’d put her down. She’d bawl and just sit there and act like something was hurting her.”

Bethanie’s abnormal behavior sparked a trip to the doctor’s office. Melissa and Jason Johnson took Bethanie to be examined twice, and unsatisfied with the answers they got, took her to the emergency room, where they were told Bethanie had an elevated count of white blood cells. She was transferred to the University of Iowa Children’s Hospital.

“I think my reaction, my coping mechanisms — how I dealt with it — was probably a little bit different from my husband and different from a lot of different families,” Melissa Johnson said, noting she had previously worked as a pediatric oncology social worker. “There was no learning curve for me per say. I was told her white count at the ER, and I knew what the doctor was telling me.”

Bethanie was diagnosed with acute lymphoblastic leukemia on July 4, 2011 — around 11 months after she was born, on Aug. 19, 2010.

Bethanie’s treatment was primarily in-patient for the whole first year. For a girl who’s lived merely 900 days, she’s spent 192 of those in the hospital — most of which came within the first five months after her diagnosis. While at the hospital, she received various forms of chemotherapy — both high and low dosages — including IV, oral, spinal, and steroids acting as a chemo agent.

But a group of college kids never let Bethanie’s or her family’s spirits down.

“I didn’t know what the full extent of Dance Marathon would mean to us,” Melissa Johnson said, noting that her family had just moved to Bettendorf from Tampa, Fla., almost immediately before Bethanie’s diagnosis. “Being new to the area and not knowing anyone when our daughter was diagnosed, then turning around and living in the hospital, they became our family.”

Bethanie’s family shared her battle with cancer in a story before Power Hour at Dance Marathon last year, and they said they wouldn’t miss the Big Event for anything this year.

The bows in Bethanie’s hair reflect the fundraiser Melissa started called “Bows 4 Bethanie Rose,” where she makes hair bows and donates 50 percent of the proceeds back to Dance Marathon.
With leukemia, the patient’s goal is to get into remission in the first 30 days, which Bethanie achieved. Remission means the doctors can’t find any evidence of the cancer in the bone marrow.

Bethanie, “B-Bug,” as her family calls her, is now in a maintenance phase — going to the hospital once a month and taking medications at home. If all goes well, she’ll be done with treatment in July 2013.

And that’s good news to the whole family. Bethanie’s five-year-old sister, Sydney, and 14-year-old sister, Aimee, known as “Mini-mom,” said they both missed their sister while she was in the hospital.
“It was different with my mom and sister being gone,” Aimee said, tears welling up in her eyes. “I can’t explain how I felt, but it just wasn’t right. Throwing in Dance Marathon was just kind of like the glue. They brought everything together.”

Even though the heavy chemotherapy treatments took a growth toll on Bethanie — she remained a size two shoe while in the hospital — Bethanie is a trooper, and her now size five shoe can prove it.

“She’s a typical 2-year-old now, with a little more fight, a little more badass in her,” Melissa Johnson said. “She’s a little more strong-willed. She’s a fighter. She always was, but now she is even more.”

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