Katie's long road to recovery after transplant

Within days of arriving home in June 2006, Stacy Trebing is alarmed when she notices a rash traveling up Katie's belly and back.

Trips to Memorial Sloan-Kettering Cancer Center in Manhattan provide a diagnosis: mild graft versus host disease. This means that Christopher's marrow is rattling Katie's body, causing angry red bumps.

Katie will need oral steroids for four to six months to battle it. The hope is that the steroids will calm Christopher's transplanted immune system so that it will stop fighting Katie's body. But because steroids suppress the immune system, they will make Katie more susceptible to infections and delay her return to everyday life.

The Trebings already knew they were in for a long haul at home -- doctors had warned that even under the best circumstances, the post-transplant recovery lasts up to a year. Patients initially return to Sloan-Kettering for monitoring three times a week; this gets reduced to once a week and then several times a month as patients improve. While Day 100 after transplant usually is a milestone in the process, it is far from the end.

Which means the Trebings still live connected to the hospital. Stacy rises at 5:30 a.m. on the summer days she has to drive Katie into the city for checkups.

Coping after transplant

Even inside the house, the Trebings continue to fear germs. Stacy's placed Purell hand sanitizer in every room; the bottles can be seen on every windowsill, like holiday candles. She can't order take-out, which can bring with it the threat of germs, so when she gets home from the hospital, she still has to cook dinner.

Just preparing Katie's food is tedious -- Stacy avoids cutting through a piece of fruit when peeling it, for instance, so the knife doesn't contaminate the fruit. If Katie wants something normally served from a communal container, such as ketchup, she eats it instead from individual packets.

On top of this, Katie takes eight medicines, some multiple times daily. Tacrolimus to fight graft versus host disease. Prednisone -- the steroid -- to do the same. Acyclovir to prevent viruses. And so on.

She takes some medications at 9 a.m., some at 10, others at noon and still others at 5 p.m. Stacy has to keep all that straight. Steve takes the night shift, getting up to give Katie a dose at 1 a.m.

Katie can't leave the house. She has to use paper towels, not hand towels that can harbor germs. She has her own bathroom no one else uses.

Any time a family member comes inside, shoes must be removed in the mud room and hands sanitized.

The Trebings call cleaning their hands "bling-blinging" because they bought an automated unit that makes chiming sounds as it dispenses sanitizer. That way, as Calvin comes in from playing, Stacy can hear whether he's cleaned his hands.

"Back up and bling bling," she'll yell from the kitchen.

Family deals with changes

Stacy's in a perpetual state of fatigue. Taking care of three children, two under age 5, would be exhausting enough. But between keeping Katie entertained indoors, waking up at night to give Christopher a bottle and rising at 5:30 to drive Katie into Manhattan, rest is little more than a fantasy.

Steve is working many days from sunup to sundown supervising the pitching of tents for weddings and parties. He's trying to make up some of the money the business lost when he was unable to work during Katie's hospitalization.

On the way home from Sloan-Kettering after one hospital visit, Stacy thinks about a time when she was pregnant with Christopher and Katie was in preschool. After Katie's class, the moms would take all the kids to a nearby playground. One day, a mother with four kids was teasing Stacy, warning her that when she had her third child, and she tried to bring all three to the playground at once, it would be hell.

"Each one will be running in a different direction, and you'll have to chase them all," she said.

That's just what Stacy fantasizes about on her drive home -- to bring her three healthy children to the playground and not worry if they are dirty or sweaty or teeming with germs. Then, they could all pile in the car and get ice cream, not worrying about Katie being served outside the cocoon of their house.

Progressing along

It's the third week of August 2006, 88 days after Katie received Christopher's bone marrow. A blood test at Sloan-Kettering shows her body still making new red blood cells. But her T-cells, the soldiers for fighting infection, are still far too low for Katie to return to normal activity, just as doctors had expected they would be at this point.

When they are ready to leave the hospital, Katie makes a request.

"I want to go say good-bye to Dr. Boulad," she says to Stacy. "I want to hug him and I want to kiss him and tell him I love him."

They find Farid Boulad, Katie's bone marrow doctor, in his office. "Thank you for making me better," Katie says, as Boulad, with Katie on his lap, spins around in his desk chair.

Stacy watches with a lump in her throat. Boulad has a lump in his throat as well.

Katie gets into swim of things

By early September, Katie is stronger, doing more outdoor things -- she's been cleared to swim in her grandparents' pool, for instance, or ride a bike on the street -- but she wears a mask and gloves.

"When I get all better, I'm going to the beach and I'm going to bring everyone," Katie says one night.

On Halloween, Katie is allowed back into the children's playroom at Sloan-Kettering for the first time as the hospital throws a costume party. She wears a fairy princess costume with wings. She must also wear her surgical mask.

"You look great!" "You look wonderful!" Staff members dressed as cowgirls and Indian princesses gloat over Katie.

Nancy Kernan, the doctor who did Christopher's marrow withdrawal and Katie's transplant, is a witch. She hugs Katie, then phones her secretary. "I just ran into a princess who could benefit from one of my wands that light up," she says. One is delivered to Katie.

A magician named Magic Juan entertains. "Say 'Poof,'" he instructs. "Poof!" Katie and the other children yell. "Don't say Poop! Who said Poop?" Magic Juan cries, indignant. Katie's eyes crinkle, evidence of her smile behind the mask.

In December, Katie takes over questioning Boulad at a routine appointment.

"When can my dog come home?" she demands.

Boulad looks at Katie's latest blood test results in an exaggerated way, then smiles.

"She can come now."

Katie jumps out of the chair and hugs him.

"What else do you want?" Boulad asks her.

"Can I go back to school?"

"Yes," he says.

Katie hugs him again.

"What else?"

It's like Boulad has morphed into Santa, and Katie's requests come tripping out.

"Can I eat grapes? Can I have strawberries?" Both had been previously banned because they carry the risk of bacteria.

"As long as Mommy washes them well," Boulad says.

That afternoon, Stacy picks Hobbes up from her in-laws' house, where the Saint Bernard has been for more than six months. Hobbes comes home just in time for Katie's fourth birthday on Dec. 12. And the Trebings throw caution to the wind and take Katie to her pre-schools holiday party.

The Trebings have their traditional Christmas Eve family party at their house. Stacy's dad sneaks out and comes back dressed as Santa, dropping off a sack of gifts for Calvin, Katie and Christopher.

"It's hard to transition from, 'You can't do anything' to 'The dog can come home, you can go back to school, and you can eat whatever you want,'" says Steve as he stands by the fireplace.

On New Year's Eve, Stacy gets an answer to the prayer she made the previous New Year's Eve, when Katie looks at her and says, "Happy New Year, Mommy."

But the transition Steve mentioned doesn't go smoothly.

Rough road ahead

When pre-school starts in January, Stacy brings Katie to class for the first time since her transplant, wearing a pink "Team Strawberry" backpack with a cheerleader on it.

"Step on in, my darling," says her teacher Miss Stephanie when Katie gets to the classroom door. "Every day I've been waiting for you." Stephanie Shlachtman shows Katie the attendance sheet with Katie's name on it. "I can put a check now. That's so exciting to me."

Stacy reminds the teacher that any fruit Katie eats has to be washed well. "Katie, I put your Purell in your backpack," Stacy says to Katie as she joins the circle of children.

Two days later, Katie tells her mother she doesn't want to go to school. At circle time, she explains, all the other kids already know the alphabet. They already have their friends and don't want to play with her; they stare at her still patchy hair. "I want to stay home with you," she says.

Katie battles infections

Then, Katie gets strep throat. A few days later, an ear infection. Stacy thinks Katie seems extremely susceptible to illnesses, even though her immune system is fighting back. But the sicknesses mean added medication, and Stacy wants to be done with all of that.

"Is she ever going to be normal?" Stacy wonders. She had been naive, thinking the bone marrow transplant would turn off all Katie's problems as neatly as a light-switch. Steve and Stacy decide to pull Katie out of school until next fall.

But if it's not school that's getting Katie sick, it's her brothers. Just as the Trebings are ready to leave for their long-awaited Make-A-Wish Foundation trip to Disney World in early February, Christopher gets a rash. The Make-A-Wish Foundation provides wishes to children with life-threatening diseases; most of them, including Katie, want to go to Disney World.

Stacy takes Christopher to the pediatrician -- it's Fifth Disease. And the doctor believes Katie also has it. The viral illness is common in young children and produces a signature red rash on the face, which can spread.

Fifth Disease is an ordinary childhood illness for a healthy child. But for an immuno-suppressed child such as Katie, the virus can attack her new bone marrow.

Stacy calls Boulad; he's busy with patients so she explains what's going on to his secretary.

Stacy's at a Taco Bell drive-thu when her cell phone rings. As soon as Stacy hears Boulad's voice, she knows it's going to be bad news.

"I would love to talk to you every day if we don't have to talk about Katie," Stacy says.

"What do you want to talk about?" Boulad asks.

"How about the Super Bowl?" Stacy suggests.

"Well, I don't know much about football," Boulad says.

"That's okay," Stacy says.

"We have to talk about the Fifth Disease," Boulad says. It can attack Katie's bone marrow up to three weeks after exposure, and it can be life-threatening. He warns Stacy to bring Katie to Sloan-Kettering if anything at all seems amiss.

"So you know what that means?" Boulad asks.

"That I have to be walking on eggshells for two weeks?" Stacy says.

"Yes. Do you know what else that means?"

"That we can't go to Disney?"

"Yes," Boulad says.

Disney: Long-awaited trip

Stacy calls the Make-A-Wish people, and they reschedule the family trip to April, the week after Easter. Everyone is disappointed.

The days pass without Katie getting worse. So on Monday, April 9, Katie packs her American Girl suitcase for Florida, the same one she rolled into Sloan-Kettering nearly a year ago. Her red blood cell counts are strong; the Fifth Disease threat is over; her immune system is stronger than it's been since the transplant. Her hair has grown in; it's short, but it's full. The doctors are weaning Katie off of her drugs, though it will still take a few months until she is completely free of them.

"I need sunscreen," Katie says to Stacy as she packs.

"I've got that covered," Stacy says.

"We need diapers for Bubba," Katie says.

"I've got that covered, too," Stacy says.

Going full steam

Just days after they get home from Disney, Stacy gets the good news that it's time to schedule Katie for a battery of testing that will enable her to move on to a different doctor at Sloan-Kettering, one who will see Katie just every six months through puberty to make sure she continues to thrive.

At Katie's ballet class the third week of April, one of the other mothers asks Stacy about Katie's medical issues. Stacy is characteristically open about it, explaining to a group of moms everything she and Steve went through as they watch their daughters twirl and plié in the studio, dressed in pink tutus and bodysuits. Christopher munches a bagel as Stacy speaks. Calvin is at school.

"She was diagnosed at birth. She had Diamond Blackfan anemia," Stacy says. "She didn't make any red blood cells."

"Wow," says mom Tara Dickson, whose daughter, Gianna, 4, is dancing near Katie.

She explains how Katie had a bone marrow transplant last May, and how Christopher was selected to be her donor.

"We went through IVF, two cycles, and we had him on the second cycle," Stacy explains.

"Part of the reason you had him was to help her, in a sense?" asks Dickson.

"Yes," Stacy says. "We were going to have a third child anyway."

"That's great," Dickson says.

"We froze her ovary," Stacy continues.

"Holy cow," Dickson says.