Dani's last hope

Dani Jones is wrapped in a crocheted blanket, cradled in the arms of her mother, Paula Wilson.

The 3-year-old's stomach is distended and her face, arms and legs are spotted with a rash. She has diarrhea mixed with blood clots. She can only suck on Popsicles or swallow spoonfuls of clear broth.

Doctors at Richland Memorial Hospital's Center for Cancer Treatment and Research ask Dani's parents for permission to try a dangerous medication as a last chance to save Dani's life.

Paula, who is usually laughing and joking, finally faces her fears. As she rocks Dani, tears flow down her cheeks and drip onto her dress.

Mark Jones, Dani's father, steps behind Paula. He puts his arms around her.

But for Paula, Dani is the only one in the room.

Weeks ago, Paula and Mark chanced a risky bone marrow transplant for Dani, hoping to save her from the rare and fatal disease myelofibrosis. The transplant took, but it caused a life-threatening side effect called graft-vs.-host disease.

Now, Dani has one last hope. Paula and Mark are counting on a strong drug called OKT3 to defeat the graft-vs.-host disease. But it is designed for adults and can cause respiratory failure in children.

"Only parents that have been through here and gone through what we are going through can say, 'I know how you feel,' " Paula said. "I know my faith is strong. That's how I can deal with it.

"I put her in the hands of the Lord."

The doctors had run out of options. If the new drug didn't work, Paula and Mark would likely watch their child die. Doctors would only be able to take away Dani's pain.

"People said, 'Why take the chance with the OKT3 drug?' " Mark said. "If we didn't, it would be like giving up."

MONDAY, MAY 12

The drug begins to work.

For the first time in days, Dani is dressed. Light glints off the tiny gold guardian angel earrings in her lobes. A matching pin is clipped to her dress.

She's still weak, lolling on the couch like a rag doll. But she's hungry, a good sign, and has had no side effects from the new medicine.

One of Dani's doctors, Sunil Abhyankar, kneels by the couch. He's pleased with her progress. The new drug is working. Abhyankar says she can begin eating regular food again.

Thirty minutes later Dani is feasting on baked chicken. It's the first time in nine days she has eaten solid food.

Dani still had diarrhea and sometimes a fever, but little by little she moved further from the edge of death. She gained weight. Her skin looked smoother, less inflamed. She even answered the telephone and talked shyly to the caller.

Days earlier, Dani hadn't wanted anyone to touch her. Now she cuddled up to her grandmothers, Hattie Wilson and Fannie Jones, climbing into their laps. Relief shone on the women's faces.

Mark and Paula's happiness was evident in the way they joked and laughed with each other and Dani.

But they didn't talk about Dani leaving the hospital. They were too frightened to plan her homecoming.

SUNDAY, MAY 18

Nurses and doctors enter Dani's room and look into the little white potty she uses as her toilet. Dani's stools are solid - a sign of recovery. Everyone is smiling.

"Most people would think it's hard to get excited about something like that," Mark says, grinning. "But when they open up that potty, they are really happy." Today, Dani gets her last dose of OKT3.

For a few hours each day, nurses unhooked Dani from the tubes that funneled medicine into a vein in her chest.

They allowed her to walk the hallways.

Dani returned again and again to the hall window, watching water splash into a fountain five stories below. When she felt especially energetic, Dani rode a red tricycle up and down the hospital's tile floors.

She always wore a paper mask to filter out germs. Her immune system would take more than a year to recover from chemotherapy and radiation treatments that were necessary before the transplant. Doctors at Richland Memorial's cancer center, where more of Dani's type of transplant have been performed than at any other facility in the world, said the biggest threats had passed. But she still faced dangers.

"We will go after problems when a lot of people would say; 'This is it. There's nothing more I can do,' " said Joseph McGuirk, one of Dani's doctors. "You just keep going at it full steam, like a bulldog."

THURSDAY, MAY 29

Dani's room is nearly empty. The pictures of her family are gone from the bulletin board. The shelves are empty of toys. The walls are bare.

Doctors expect Dani to leave the hospital in a few days.

Even without decorations, the room has the feel of a party. The radio is on; nurses come in and out, smiling at Dani.

"When the germs go away outside, I can go out, right, Mom?" Dani asks Paula.

Paula, with Dani in her lap, laughs.

"She thinks when she goes outside all the germs go away," Paula says. "I keep trying to explain that the germs don't go away. We just have to work extra hard to keep them off her."

Paula spent more time away from the hospital than she had during Dani's entire stay. She shopped for new furniture for Dani's bedroom on the second floor of Hattie's Byrneswood house near Eau Claire. Paula had the walls painted. Every inch of the floor, ceiling and closet were scrubbed. She bought an air purifier that would run 24 hours a day.

Each time Paula left the hospital, Dani asked where she was and when she'd come back. When Paula was there, Dani constantly wanted to sit on her lap or be held in her mother's arms. She didn't want Paula to leave the room even to get a soda from the kitchen or to grab a bag of potato chips from the vending machine. Their relationship had changed in the months they lived together at the hospital.

At first, Dani was happy to have others, including her grandmothers and aunts, hold her, cuddle her and comfort her. Now, she clung to Paula like a security blanket.

"I'm the one that was sitting with her 24 hours a day, seven days a week," Paula said. "We were never apart."

MONDAY, JUNE 2

Dani wanders the hallway in a pink princess robe with puffy sleeves and yellow Tweety Bird slippers.

She is full of energy, bestowing smiles and hellos to nurses as if greeting members of a fan club.In the afternoon, Paula and Mark meet with nurses, a pharmacist, a nutritionist, a home health-care nurse, a social worker and Kamar Godder, one of Dani's doctors.

Waves of information wash over Paula and Mark. There are lists of medications to remember, daily clinic visits, diet restrictions. Details trickle through their fingers.

Social worker Pat Cornwell urges them to be patient.

"We sit here, and we know Dani still has a lot of needs," Cornwell says. "It can be overwhelming, but give it time."

Mark knew his life would change when Dani left the hospital.

Mark and Paula were never married, and they're no longer a couple. But the two were able to gain strength from each other while fighting for Dani's life.

Mark wanted to build a relationship with Paula again. She said no.

But for the months Dani spent in the hospital, the three were a family.

Mark was overjoyed that Dani was healthy enough to leave the hospital. But when she moved back to Hattie's house with Paula, Mark believed that feeling of family would evaporate.

He'd no longer sleep in a room with Paula and Dani. He likely wouldn't see them as often, since he lives on the outskirts of West Columbia, across town.

"I guess we'll go back to our old life," Mark said. "I go back to my place. Paula goes back to hers."

TUESDAY, JUNE 3

Dani leaves the hospital after 79 days in the hospital.

Her mint green, linen dress hangs past her knees. Tiny pink roses are embroidered around her collar. She wears a pair of white sandals.

A paper mask covers her mouth and nose.

Dani pulls down the last drawings that decorate her door and walks toward the exit. Everyone is grinning.

The nurses line the hallway waiting for a chance to hug her. Dani walks to the double doors then turns and asks, "I can go out here?"

Paula and Mark nod, laughing. Dani walks through.

But before they leave the parking lot, Dani insists on a detour. They park next to the fountain that Dani has looked down at for months from a window in the hospital hallway.

Dani gets out and tosses a coin into the pool of water.

"She said she didn't want to throw a penny; she wanted a quarter," Paula says. "She has king-size wishes."

EPILOGUE

Dani spent six days at home before a seizure forced Paula to rush her back to the hospital in the early morning darkness.

Since then, Dani has been in and out of the hospital several times. Once, the graft-vs.-host disease that almost killed her came back, popping out in a rash on her skin.

Dani is now at home. She could still die - from an infection or the graft-vs.-host disease - but the longer she stays healthy, the better her chances are.

The fear remains. Mark no longer mulls what he will teach Dani as she gets older. He is too afraid to imagine her high school graduation or the day she gets married.

"I don't even think about the future anymore. I took that for granted because I had already planned a life for her," he says. "I'm taking Dani's life one day at a time."