Maranda’s big dark eyes behind her red-rimmed glasses are peaceful, but that belies the pain the 5-year-old feels.
Her mom and dad, Myiesha and Randy Wilborn, talk around the word “rhabdomyosarcoma” that haunts them. Their daughter’s hair fell out because of the “treatment” she needs. She misses kindergarten because she’s tired, or sick, or needs to spend more time at the hospital to treat the knots in her arm.
“I don’t like to stay there,” Maranda, called “Randa” by her family, says softly of Cardinal Glennon Children’s Hospital, although she likes the toys in the playroom and she enjoyed coloring a teddy bear purple.
Maranda’s cancer journey started with a knot in her arm this past spring. It grew, but it wasn’t too bothersome. Her parents, Myiesha, 28, and Randy, 30, of Belleville, were told by the family doctor that it was a fluid buildup. No big deal.
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Then another knot grew in the same arm, and it hurt a little. It’s just fluid, Myiesha says she was told. We’ll watch it.
“I think tests should be run; I want to know what is it,” she told the doctors. Tests for cancer came back negative, but the knots and pain remained.
Maranda lives with her parents, her brother, Randy Jr., 7, and sister, Myriah, 3, near Jefferson School, where she is enrolled in kindergarten but rarely attends.
Randy played with the children in a back room one cold day in early December while Myiesha talked about their daughter. She loves playing with her dollies, and she and her sister adore the movie “Frozen.”
Maranda will turn 6 on Dec. 20. But instead of being at home to celebrate, she will be in the hospital, receiving the last of a five-day chemotherapy treatment.
At home, two crosses, one with a verse from First Corinthians, the other with the Lord’s Prayer, hang on a living room wall. The family’s Christmas tree stands in the corner of the tidy black-and-white room. The children’s gifts this year came from the school and the hospital. Money is very tight.
The Wilborns will visit with family and friends on Christmas day, and attend the House of Prayer in Alorton for the special children’s program. The family’s faith is woven through their day-to-day lives as they fight Maranda’s illness.
“Our faith is so strong. We know all is well,” Myiesha said.
It wasn’t until October that the family got the diagnosis. A new round of tests included a biopsy. As Maranda slept that day in the recovery room, her doctor talked to Myiesha and Randy.
It was late-stage cancer, specifically rhabdomyosarcoma, which strikes less than 10 percent of all child cancer patients, said Dr. William Ferguson, her oncologist at Cardinal Glennon. It usually begins in muscles that are attached to bones and that help the body move. The Wilborn family agreed to allow the doctor to speak about Maranda’s health and care.
Maranda knows she has cancer.
“I broke down. I broke down crying; my husband didn’t want to hear those words,” Myiesha said. “I’ve been in pain. ... That pain was nothing to what the doctor told us.”
The prognosis for rhabdomyosarcoma patients, an “uncommon, but not rare” cancer, the oncologist said, varies based on where the tumors start. For reasons not known, patients with tumors on their arms, legs and back do less well than patients whose tumors attach elsewhere.
“Many kids with this will respond to treatment. For some of them, the tumors will recur, but for some of them the treatment seems to eradicate the tumor,” Ferguson said.
Doctors provided the couple with information about the tumors before chemotherapy began, from how they act to where they grow, and what those factors mean for treatment. Maranda’s Stage 4 rhabdomyosarcoma means the cancer has spread, in her case, into her lymph system and bone marrow.
Ferguson admits that most parents are overwhelmed at the medical information.
“When Maranda first came in, it was like they were hit with a ton of bricks,” he said.
‘That’s just the healing’
“She’s responding well,” Ferguson said, even given that the primary spot where the cancer was first located was “not so good.”
“These are tumor that are sensitive to chemotherapy, and in the last 10 to 15 years we’ve developed new combinations of drugs for kids ... and some of those kids are cured,” he said. “Even if you have all the bad things going on, it doesn’t mean the outcome can’t be good.”
Ferguson said the original tumors in Maranda’s arm are nearly gone. Cancer that had spread to the bone marrow also is gone.
“It’s a good first step,” he said. “Does that mean she’s cured? No.”
After her diagnosis, Maranda had a port placed in her chest, “close to her heart,” her mom said. She’s endured weekly rounds of chemotherapy, and missed much of kindergarten.
Myiesha said the family had intended, prior to the news, to attend a church revival in October. That didn’t deter Maranda, who still wanted to go after her first chemotherapy treatment.
“I felt something go through my body,” Maranda told her mother after the revival.
She worried that the drugs were hurting her daughter too much.
But instead, Maranda said: “No, Momma. I felt something go through my body and hit my stomach. I grabbed it, and I thought, ‘Oh, that’s just the healing going to my body.’”
There’s a new routine at home now: Every Friday, Randy takes off work and drives his wife and daughter to Cardinal Glennon for chemotherapy. Every third Friday, he makes the drive, but returns home alone. That’s when Maranda must stay for five days of chemotherapy.
Randy’s hours as a crew member at Taco Bell in O’Fallon had to be reduced to accommodate the driving and the five-day stays. Myiesha has been off work for two years. She can drive to the hospital if she has to, but is afraid of the big trucks on the highway.
The family has one vehicle, and the heater in it isn’t working, adding to parents worrying about keeping Maranda healthy. The reality is that they aren’t able to pay all the bills; recently, Myiesha worried that a tow truck would be coming to repossess the SUV.
“We have family (who can help with transportation) if it comes down to it, we just have to let them know a few days ahead of time. They work, too,” Myiesha said.
The Wilborns have a GoFundMe page, titled Family of Maranda Wilborn. Fellow church members at the House of Prayer suggested the page, which Randy created. It raised $720 in a month, but came to a standstill just before Thanksgiving. Their church family also took up an offering for them. The money is already spent.
“We got behind on the light bill; it was $400 something,” and the utility was threatening to disconnect, Myiesha said. They are also half a payment behind on the SUV.
‘Don’t keep her in a bubble’
“If Maranda gets a cold or a fever, we have to take her to Cardinal Glennon,” Myiesha said. She had a cough one day recently and it was back to the hospital to check her blood counts and provide any necessary medication.
Even with that concern, doctors have told the family to let Maranda be herself and play.
“She runs around here,” Myiesha said. “They just said, ‘Don’t keep her in a bubble.’ But me being a parent, and where the port is — I try to be careful.”
Maranda’s school is just a short walk from her home. Teacher Bethany Binder said her fellow kindergarteners talk of her every day.
“She’s only been back four times since this all happened,” Bethany said. “Two days she wore a scarf (around her head), the last two days a winter hat.”
A classmate asked Maranda why she was wearing a hat, Bethany said.
“I wanted to wear it today,” Maranda sweetly told the boy, Bethany said. “She’s kind of quiet and to herself, super sweet, and such a good student.”
Maranda’s tests aren’t showing any tumors now, although she will continue chemotherapy because doctors are concerned about microscopic tumors that might have spread.
“Sometimes it’s better to just focus on one child, and hope for the best, because sometimes the best happens,” Ferguson said.