Katie receives life-saving bone marrow transplant

BY BETH WHITEHOUSE | beth.whitehouse@newsday.com

As soon as Katie Trebing checks into Room 935, Stacy hangs construction paper "Get Well" cards created by a school class in Brentwood. She puts up a string of decorative lights with tiny lampshades in pinks and purples and plaids she bought at Target. On the window ledge she sets a snow globe with an angel in it that Stacy's mom gave to Katie.

Katie's chemo regimen begins

The chemotherapy regimen starts right away: by evening doctors give Katie drugs intravenously. The first is busulfan, meant to kill Katie's bone marrow to make room for her brother's. The Trebings know busulfan is one of the chemo drugs that can cause sterility and can ignite the potentially deadly veno-occlusive disease that contributed to the death of 12-year-old Keir Zangrando.

This day, May 15, 2006, becomes known as Day Negative 10, meaning it's 10 days prior to bone marrow transplant day. Christopher will come into the hospital on Day Zero.

Every day after the transplant will be counted in positive numbers -- Day One, Day Two, for the six weeks Katie will likely spend in Memorial Sloan-Kettering Cancer Center in Manhattan. One of the most dangerous periods for Katie will be the first two weeks after transplant, but serious risks could linger for up to 100 days.

One night, after Katie is asleep, Stacy falls apart. She looks at Katie, swallowed up in the bed, and knows there's no turning back. Katie's had so many drugs that even if the Trebings wanted to call off the transplant, they couldn't. Her immune system is already so debilitated that without new marrow, she will die. But the transplant also could kill her, and that thought is overwhelming Stacy.

Steve is home in Nesconset with the boys; Stacy dials her home number. It's late and she doesn't want to wake up Calvin and Christopher, but she needs her husband. When Steve answers, Stacy's crying so hysterically she can hardly choke out words. Watching the drugs flow into Katie and not knowing what might happen is too much for Stacy to bear alone. The unknown is terrifying.

It's Steve's turn to be with Katie when, three days before transplant, she has a violent reaction to one medication. Her body shivers uncontrollably, and it seems to Steve as if Katie were outside in a snowstorm without a jacket.

Katie wants to throw up -- and Steve grabs a yellow bucket and aims it under her chin just in time. As Katie is dry heaving and phlegm is dripping off her lips, Steve is relieved to hear her yell, "Dad, moooove!" He was blocking her view of the television set.

Stacy and Steve alternate nights sleeping on a pull-out chair next to Katie's bed; the other sometimes spends the night at the nearby Ronald McDonald House. The intermittent beeping from Katie's IV pole -- which looks like a coat rack -- wakes them up six to eight times a night as bags run out of medication. The pole is hooked up to a port inserted in Katie's chest; at its peak it will hold a dozen bags filled with drugs and liquids. Stacy and Katie name it "Bubble Buddy," after a Sponge Bob character.

Keeping the germs away

Stacy works constantly to fight germs. If Katie's pillow falls on the floor, she changes the pillowcase. If a crayon falls on the floor, she wipes it with an antibacterial wipe before Katie touches it again. She reminds Katie not to put her hands in her mouth. She can't cut Katie's fingernails because a nick would open a site to infection. Soon, Katie won't be allowed to brush her teeth. Every time Katie sneezes, Stacy worries she's caught the cold that could kill her.

Katie asks for her brothers every day, and to help her keep in touch, the Trebings have set up a two-way video phone in the room that lets them call home and see her brothers on the screen. Steve's parents, Rich and Kathy Trebing, have moved into the younger Trebings' house to take care of Calvin and Christopher.

To break the tedium of long hospital days, Stacy reads magazines like Star, taking in stories about Brad Pitt and Angelina Jolie. On the serious side, she's also reading "The Purpose Driven Life," a spiritual book that promises to explain God's purpose in one's life.

On the day before the bone marrow transplant, the hospital staff bleaches the walls in Katie's room to kill any germs. They change the curtains in the room, change the bedding.

Preparing Chris for surgery

At home in Nesconset, Steve's parents have been going through their own ordeal keeping 1-year-old Christopher healthy. They've had to keep him away from all other children. Katie needs Christopher's marrow on schedule, and if he contracts a virus, he'll pass it to her and she may not be able to withstand it.

Steve and Stacy are worried about Christopher's surgery. Farid Boulad, whom the Trebings had chosen as Katie's bone marrow doctor, has flown to Lebanon for his mother's funeral. Another doctor, Nancy Kernan, attending physician of Sloan-Kettering's pediatric Bone Marrow Transplant Service, will perform Christopher's bone marrow retrieval instead, as well as Katie's transplant.

In addition, the last time Christopher came in for a pre-transplant blood test, it took so long to find a vein that the nurse practitioner started crying because Christopher was so upset. Steve had to urge her not to make eye contact with Christopher as Steve held him down. If the doctors can't get an IV into Christopher's arm tomorrow for the surgery, they will have to go through a vein in his leg, which is more dangerous.

But for the most part, Stacy is excited, feeling almost festive. Finally, transplant day is about to happen.