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A Body Frozen in Place
In April 2004, Emily said a tearful goodbye to Emma before flying to Chicago. Babies weren't allowed in the transplant unit, so the little girl would stay in Texas with Kevin for several weeks. Since Emily was in no shape to travel alone, her mom accompanied her. Emily was so stiff, her arms and legs didn't bend much, and it was very hard for her to sit down in the wheelchair or on the plane. She couldn't get up from a seat on her own; her mom had to lift her. Even getting into a cab was an ordeal. Emily's brother, who met them at the Chicago airport, says, "She was stiff as a board. We had to lay her sideways across the backseat. Mom and I sat up front with the driver."At the hospital, the two women met with Yu Oyama, MD, then director of the immunotherapy program. "Emily was suffering horribly. Not only was her skin hard, like a stone, but her body was almost totally frozen in place," says Dr. Oyama.
After two weeks of medical tests followed by removal of the stem cells, Emily received four doses of chemotherapy in as many days. That sparked hot flashes and severe vomiting. Her weight dropped from 110 to 87 pounds on her five-foot-five-inch frame. She also slipped while getting out of bed and suffered a broken jaw, further impairing her ability to eat. To lift Emily's spirits, Kevin sent videos of Emma. "There was one of her splashing in the pool and another of her sleeping in her crib. I watched them over and over, wishing I could be with her."
On May 18, 2004, she received her intravenous stem cell transplant, an occasion the nurses dubbed her birthday, because it was the birth of her new immune system. At first, she'd be highly vulnerable to infections but would then gradually gain resistance. If the transplant was successful, her immune system would normalize and no longer stimulate the production of excess collagen. After that, it was hoped, progression of the disease would be stopped, her skin would soften and her energy would improve.
By the third week of June, doctors thought it was working: Emily's blood counts were better, and she had enough white blood cells to fight infection. So they said she could leave the hospital. She was jubilant but soon learned she had to return, as her kidneys were functioning at only a fraction of their normal level. "It was a huge emotional and physical setback," Emily says. "I was hoping I'd be seeing signs of improvement, but I was even worse off."
In early July, doctors arranged for her to receive outpatient dialysis in Texas so she could go home to her daughter. Even in this bleak situation, she was elated to find Emma and Kevin waiting for her at the airport. Since Emily was too weak to get out of her wheelchair, Kevin put the toddler in her lap. Emily wasn't sure if her daughter would recognize her after three months apart, but Emma did. "Mommy!" she exclaimed, playfully pulling off Emily's hat. The little girl was surprised to see that her mother had no hair, then stroked Emily's head with a smile.
Over the next few months, Emily's blond hair grew back as she endured dialysis three times a week. Each session took four hours and left her so debilitated that she dreaded the next one. When someone asked what she wanted for Christmas, she replied, "I just want my kidneys back."
In January 2005, she got her wish. Her kidneys improved enough for her to stop dialysis. The transplant was finally kicking in. Her skin wasn't quite as hard and tight. Little by little, it softened and didn't look as shiny. "A really good sign was when I saw creases and lines on my skin," she says. "People with scleroderma like to get wrinkles because that means we're getting better." As her skin loosened, so did her joints. It was easier for her to sit down and stand up. Her knees and elbows became more flexible.
"I went from being pushed in a wheelchair to being able to walk for over an hour," she says. "And I could drive again. That was huge, because I could shop at the mall, visit friends and go on Emma's nursery school field trip, without relying on other people to take me everywhere. It was wonderful to have my freedom back."
Doctors agree that overall, Emily has had a tremendous turnaround, and three years after the transplant, there's still no sign of the disease returning.
Recovering has made her more reflective. "Now I don't take anything for granted. It's a gift to be able to go anywhere I want, play with my daughter, see her looking angelic as she sleeps. I'm so grateful to have her in my life, to love and live for."
Recently, Emily's parents offered to give Emma a riding lesson. The little girl, now four, eagerly accepted. When they reached the barn, Emily felt a familiar yearning. "Hey, do you think I could ride?" she asked. Her dad helped her mount, then she wrapped the reins tightly around her hands so they wouldn't slip from her awkward grasp. A little nudge was all it took to get the mare moving, first in a sedate walk, then a brisk trot. Gaining confidence, Emily urged the horse into a canter, her face glowing with pride.
"I only rode for five minutes, but it felt so great," Emily says. "I was literally back in the saddle again!"
Helping Others with Scleroderma
Emily wants to give back to others with her illness: She's launching a line of inspirational greeting cards at dreamonmedia.com and will donate part of the proceeds to the Scleroderma Foundation. Her designs are based on the message, "It's never too late to take a chance, or turn a dream into reality."
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