Home for the holidays

IOWA CITY - Photos from Christmas one year ago show a beaming Chastity Thomas, her long, blond hair topped with glittering garland for her role as an angel in a church play.

This Christmas, the 10-year-old Burlington girl will be lucky to make it out of the hospital.

Diagnosed in September with a form of cancer called rhabdomyosarcoma, the greatest gift for Chastity this year - and other children suffering from disease - will be a holiday spent at home.

“Everything was pretty normal,” said her mother, Jessica Thomas, 33, from Chastity's room at University of Iowa Children's Hospital. “She was a pretty healthy child until this.”

Chemotherapy has taken its toll - not only on Chastity's hair, but on her body as well - causing her to rest frequently, her mother said.

Down the hall of the third-floor pediatric unit, 5-year-old Onnah Dvorak takes the temperature of her toy bear with an ear thermometer.

The feisty kindergartner has been in and out of the hospital for edema - a noticeable swelling of the face and body - and other problems related to nephrotic syndrome, a kidney disease.

“We've gotten to know this floor quite well,” said her adoptive mother, Nancy Dvorak, 48, of Keystone. “She's been dealing with this since she's been 2. She's been through a lot for her age.”

Parents of children with chronic diseases sacrifice time spent at home, on the job and with their other children to give the child a sense of security and normalcy while hospitalized.

Tough time of the year

During the holidays, the stress can intensify.

“Sometimes it's just hard to get in that Christmas spirit because she's been sick,” Dvorak said. “We never know if we will be here or at home. We might stay here four days; we might stay 21 days.”

Still, Dvorak, who works at a child-care center in Vinton, said she has been fortunate.

“I couldn't ask for a better group of women to work with,” she said. “If I need to be gone, they cover for me.”

Her husband, Mark Dvorak, 47, has family health insurance through his job at an agricultural implement company in Keystone.

Their older sons, Dylan, 19, a college student, and Lance, 16, a sophomore at Benton Community High School, don't need the supervision that younger children would.

The situation is different for the Thomas family. Jessica Thomas and her husband divorced in August.

She lives with friends of her ex-husband, works nights at a warehouse job and has a younger son, Michael, 8, who stays at home with the family friends while she's at the hospital.

Chastity, a fifth-grader at Black Hawk Elementary in Burlington, has missed most of the school year.

Beyond the age of dolls and toys, she asked for a guitar, iPod and laptop for Christmas, things her mother cannot afford.

“I've been trying to make it a more positive thing,” her mother said. “It's been a hard road. It's not easy, but I do what I have to do for them.”

She let Chastity choose her own wigs, but she often wears hats to cover her head.

“She's cried about it a few times, but she's taken it quite well,” her mother said of Chastity's hair loss.

Jessica Thomas has her own concerns when they are not in the hospital.

“There's times I worry if she's going to wake up,” she said. “I do worry about that every day.”

Besides wanting her daughter to recover - she has chemotherapy scheduled through June - Thomas most would like the family to have their own home for Christmas.

“I want my own place, so I can take care of them on my own,” she said.

Last year, UI Children's Hospital was home, temporarily, for 6,213 children who were inpatients. Another 198,486 outpatient visits were performed. Both numbers have been rising.

The 194-bed hospital, which is currently in different wings of UI Hospitals and Clinics, plans to build a new, separate facility, set to be completed in 2015. Groundbreaking is scheduled for next summer.

Until then, families of patients like Onnah and Chastity do what they can to make the rooms feel like home, with artwork posted on the walls, alongside well-wishes from friends.

The children become accustomed to needle pokes, IV tubes, surgery and hospital beds.

“She's been a little trooper,” Dvorak said of her daughter. “She's a tough little cookie.”

Onnah, who attends Van Horne Elementary School, has already missed more than 14 days of school this year.

“Her immune system is so low that she can't fight (illnesses,)” her mother said. “We play a lot of catch up with that.”

Someday, Onnah might need dialysis or a kidney transplant.

“We just take it a day at a time,” Dvorak said. “She can be good one day, and the next day she's sick.”

Getting in the spirit

Emily Baxter, a child life specialist at the hospital, said special events, such as a visit from Santa and Mrs. Claus organized by the Clinton Lions Club and other organizations, bring the holiday spirit to the hospitalized children and their parents.

“When kids get admitted close to Christmas, they ask, ‘Does Santa come to the hospital?' ” Baxter said.

The Clinton group showed that, indeed, he does, with extra-large gift bags full of books, dolls and other presents.

“It takes their mind off their problems,” Baxter said.

Onnah Dvorak was able to visit with Santa at the hospital and at an event in her hometown, but was mum about their conversation.

“It's a secret,” she said, not wanting to reveal her wish list.

This morning, if all goes well, she should wake up - at home - to a new bicycle from Santa.

Her mother's wish is for a cure.

“We pray every day,” said Dvorak, who attends Immaculate Conception Catholic Church in Van Horne. “I think the whole family prays every day for some miracle of getting her better and keeping her better for a long time.”

Jessica Thomas echoed Dvorak's sentiments.

“I'd rather it be me,” she said of her daughter's cancer. “The biggest thing I learned is just do what you've got to do to keep going, because I'm not accepting anything else at this moment.”

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