Dani Jones ' brown skin is covered in what looks like dark bee stings. The bottoms of her feet itch, her back itches, her ears itch.
She is awake all night, crying, scratching in her bed at Richland Memorial Hospital's Center for Cancer Treatment and Research. Dani's mother, Paula Wilson, spends those hours rubbing Dani's back. Paula keeps falling asleep, but Dani's cries wake her.
In the morning, Paula turns the heat up to 80 degrees and strips Dani to her underwear. She smears oatmeal paste all over the little girl's body to soothe the rash. Dani, who likes everything neat and in its place, cries and tries to wipe the goo off.
The life-saving gift Mark Jones gave his daughter had turned on her.
He donated his bone marrow to Dani, hoping it could cure a rare and fatal disease called myelofibrosis, which scarred Dani's bone marrow and blocked her ability to produce new blood cells.
But some cells in Mark's donated bone marrow saw Dani as the enemy and attacked.
The illness, called graft-vs.-host disease, is a side effect of bone marrow transplants. Twenty percent of patients who have transplants like Dani's get the sometimes fatal disease.
It began with a rash. If doctors couldn't stop the disease, it would veer internally to her colon and other organs. If it reached Dani's liver, it would shut down her body and end her life.
Dani was slowly losing ground. It had been less than a month since she had the bone marrow transplant at Richland Memorial's cancer center.
When doctors tested whether the new bone marrow had produced life-giving blood cells in Dani's body, they found that it was a success. Tests showed the transplant was working.
But graft-versus-host disease caused doctors to worry as it drained Dani's strength.
To make matters worse, as chemotherapy and radiation prepared Dani's body for the transplant, the treatments also wiped out her ability to fight off germs. It's infections that kill many of the bone marrow transplant patients who die, said Jean Henslee-Downey, the head of Richland Memorial's bone marrow transplant team.
Air filters hummed constantly in Dani's room, and she rarely left the protection of those four walls. When she did go out - for tests and treatments - she wore a mask.
To enter the transplant ward, everyone had to punch a special code into an electronic keypad to unlock the doors.
In an anteroom to the closed ward, all visitors, including Paula and Mark, put paper covers over their shoes, washed their hands in antibacterial solution and donned sterile gowns over their clothes. Anything they brought in - a book, a stuffed rabbit, a puzzle or a purse - was coated in antibacterial spray.
No plants or fresh flowers were allowed in Dani's room. She couldn't eat raw vegetables or fruits because they can carry bacteria.
Her immune system would need at least a year to recover.
If patients dodge all the disasters, they "can live quite normal lives after a bone marrow transplant," Henslee-Downey said.
THURSDAY, APRIL 24
Dani is sprawled on the green couch in her room, ignoring Paula and Kris Colluro, a child life specialist, who brought beads and colored Play-Doh to cheer her.
Dani is still itchy and has become lethargic. In short bursts throughout the day, she focuses on the activity around her.
Paula leafs through the newspaper, looking to treat Mark to a movie. It was his birthday a week ago. Paula asks Dani what movie she thinks her daddy would like to see.
"You should take him to Chuck E Cheese's," Dani says. "And I want to go with you."
For Dani and her family, death wove itself into daily conversation. During Dani's first week in the hospital, Paula went to a group counseling session for relatives of bone marrow transplant patients.i
By the time Dani's rash broke out, four of those patients had died.i
Paula developed a friendship with Gwen Goodman, whose teen-age daughter was in the room next door.
Kanika, a 19-year-old from Michigan, had a bone marrow transplant about the same time as Dani. The friendship helped the two mothers pass the difficult and seemingly endless days in their daughters' rooms.
The constant comings and goings of nurses, aides, visitors and doctors ran together from day to night. The door opened every few minutes, bringing someone to take Dani's temperature, check her blood pressure or administer one of the 15 to 20 medications she took each day.
Even at night, when Dani and her parents were asleep, the prodding continued.
But the tedium was a welcome relief from the frightening interruptions of crisis.
Dani stopped eating, her stomach twisted in pain. She shivered despite being bundled in a thick Mickey Mouse quilt.
The doctors did a biopsy by inserting a small scope into her colon. Like a tiny video camera, the scope sent back clear pictures onto a television screen. The images were red, glistening, pulsing as Dani breathed.
Doctors cut six pieces of tissue from the lining of Dani's colon to test for graft-vs.-host disease. But everyone already knew that the sickness had spread inside her body.
TUESDAY, APRIL 29
Dani is curled on the couch, piled on pillows and under quilts. Because she won't eat, nurses hang bags of yellow solution on a metal stand and feed her through the intravenous line in her chest.
A nurse uses a plastic syringe to draw blood out of Dani's line for testing. She shoots the blood into a test tube.
Dani eyes are open, but veiled. She barely moves.
Kris, the child life specialist, tries to entice Dani to eat. How about a peanut butter and jelly sandwich? A ham and cheese sandwich? A graham cracker? Ice cream? Popsicle? Juice?
No response.
Dani cups her belly.
"My stomach hurts."
Dani's weight dropped from 34 pounds to 24 pounds as the disease marched through her. She resembled stark news photographs of starving children in far away places, with limbs like twigs, a bloated belly, a vacant stare.
Paula bustled about the hospital room, constantly moving, straightening possessions, cleaning up. She said she wasn't worried.
But Dani began vomiting, some of it blood. Doctors decided to give Dani a new medicine for 10 days. If that didn't slow the disease, there was only one medication left to try. It had highly dangerous side effects.
Mark worried the doctors weren't being honest about the seriousness of Dani's condition.
Paula looked tired and anxious, but dismissed his concerns.
"I'm quite sure they've had cases like this before," she said.
THURSDAY, MAY 1
Paula and Mark spend the morning crying.
Dani whimpers.
"It's real serious," Mark says.
Diarrhea, sometimes mixed with blood, pours out of Dani every three or four minutes.
Mark's uncle and aunt, Richard and Maxine Johnson, visit. Before they leave, everyone stands in a circle, clasps hands and prays over Dani.
"We trust in you, Lord. We put her in your hands because ours are too small," Richard Johnson says.
Tears stream down the face of Dani's grandmother, Hattie Wilson.
"I was thinking, 'Lord heal her,' " Hattie says. "She hasn't seen none of her life yet."
Paula bustles into the room. She's cheerful, talking a mile a minute. But her eyes are puffy.
Paula and Mark struggled to understand what had happened.
"Last week they were talking about wanting her to go home," Mark said. "This week, it's a complete turnaround."
Dani stopped talking. She didn't want anyone to touch her.
"The doctors said people have had this medicine work, but it's a rough road ahead," Mark said. "Some people make it, some don't."
A few days later, Paula found Gwen sitting in the waiting room crying. Her daughter, Kanika, was in intensive care.
The two mothers hugged. Gwen rushed to intensive care. Minutes later, Kanika died.
Paula returned to Dani's room to fight even harder for her own daughter.
But Dani's diarrhea got worse.
Against her wishes, she wore a diaper, but she refused to make a mess. All night, Paula and Mark took turns carrying Dani to the bathroom every few minutes.
Dani hadn't slept in days. All she could manage was a few minutes of napping.
"It's so hard sitting here, watching her suffer," Mark said. "I'm still optimistic, but deep down inside, I just don't know."
The medicine hadn't worked, and doctors gave Dani a low dose of morphine to ease the pain in her belly.
Joseph McGuirk, one of Dani's doctors, told Paula and Mark the situation was serious. He knew they wanted the truth.
Dani was dying.
A few days later, Dani was rushed to pediatric intensive care in another part of the hospital.
Nurses there asked everyone to leave Dani's room so they could do their work.
For the first time since Dani checked into the hospital, she was alone.
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