Katie's long road to recovery after transplant

BY BETH WHITEHOUSE | beth.whitehouse@newsday.com

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.