Katie receives life-saving bone marrow transplant
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.
The next day is really about Christopher, as Stacy sees it. It's his big day, his big performance. Born to be a member of the family, Christopher also was expected to cure his sister. And Stacy asks herself how she'll feel toward him if the transplant fails.
"If anything ever happened to Katie, would I be resentful toward him?" she asks. She quickly answers her own question. "How could I be? Out of all this I got Christopher."
Stacy opens her eyes at 7:10 a.m. on May 25, Day Zero.
Christopher is supposed to be at the hospital by 7:15. Katie's still asleep. Stacy can't use the bathroom in Katie's room because it needs to be kept sterile. She pulls off her gloves, mask and gown, and walks down the hall to the common bathroom where she brushes her teeth and washes her face.
Downstairs in the waiting room, Steve holds Christopher. At mid-morning he carries his son to the operating room. Christopher is flailing and grabbing onto Steve's hair. Steve can see what looks like 10 people waiting in scrubs.
He smells the chemicals as a doctor puts a mask over Christopher's nose and mouth to administer anesthesia. Steve holds his breath because the smell is so bad. Looking at Christopher makes him think of someone suffocating.
After Christopher falls asleep, Steve lays him on the operating table, kisses him and leaves the room. He fights the eerie feeling of leaving his son on a table, unconscious.
Stacy has dressed Katie in a pink T-shirt that says, "I love Bubba." Steve and Stacy bought it on a trip to Manhattan, at the Bubba Gump Shrimp Co. restaurant in Times Square. They thought it would be a perfect shirt for the day on which Christopher -- whom the family refers to as Bubba -- gives his sister a chance to be cured.
Katie receives new marrow
At noon, Kernan walks into Katie's room with a blood-bag filled with Christopher's bone marrow. Stacy is amazed it has arrived so quickly. The doctor hooks it to the "Bubble Buddy" attached to Katie's central line. As the marrow drips, Katie watches "The Little Mermaid" on TV. It takes about four hours to complete the transplant.
When Christopher is brought to recovery, his eyes are closed, but he is restlessly kicking his arms and legs. Steve whispers into Christopher's ear and he immediately settles down and sleeps for two hours in his father's arms.
When he wakes up at about 1 p.m., Christopher groggily sucks down a bottle of milk. Then he smiles. By 3 p.m., he is running around in the Sloan-Kettering playroom, pushing a toy car.
Stacy visits him in the play area, and while she is there, Kernan comes in. It seems to Stacy as though the doctor, who usually has a poker face, is almost skipping. She sits down on a tiny chair meant for a toddler, and tells Steve and Stacy that she's received the lab results back on the marrow they withdrew from Christopher, and that the counts they received were far better than they had anticipated. "He did a great job," she says. The doctors send Christopher home.
For months, Stacy has been wearing a red rubber "live strong"-style Diamond Blackfan anemia bracelet. She never takes it off. For the few days before the bone marrow transplant, it kept getting pulled off as she changed in and out of latex gloves, and she had to keep sliding it back on.
The morning after Day Zero, she notices that it is gone.
"I lost it on transplant day," Stacy thinks. It seems an omen -- Diamond Blackfan anemia, gone. Just like that.
Back at the Trebing household in Nesconset, Christopher is crawling around in his diaper, a bandage across his back to protect the incision sites.
The earliest doctors think Katie's blood counts can show a response to the transplant is two weeks after transplant day. So on the morning of June 8, Stacy wakes up fully expecting Katie's marrow to be kicking in. After all, Christopher gave such a good marrow sample, and Katie has been eating on her own, making it through whole days without napping. So she's stunned when the nurses tell her there is no evidence yet that Christopher's bone marrow has begun to kick in.
For a moment, she feels like a fearful flier on an airplane. Katie still having no response at Day 14 is turbulence -- the thought leaps into Stacy's mind that Katie won't make it.
Stacy gets more disappointing news this morning -- Steve, who was out pitching tents in the rain yesterday -- woke up with a runny nose. He is supposed to come to the hospital today for his shift, to let Stacy go home and see her boys for the weekend. But now he'll be banished from Katie's world until all his symptoms disappear, and that means at least another five days of 24/7 at the hospital for Stacy. That would make a total of 10 days in a row for Stacy.
"The light at the end of my tunnel just went out," she thinks.
Caring for Katie is getting more tedious. Katie's confined to the room, and she doesn't want Stacy to leave, either. On top of that, Katie's hair is falling out. What bothers Katie the most is when hair falls on her food or her toys.
"Get it out of my Lucky Charms!" Katie shouts when she's eating breakfast.
Katie does crafts all day, sitting in her bed. She makes Popsicle stick puppets with feathers and googly eyes. She makes a princess crown. She makes sparkle pictures.
Some hours she's herself -- calm and sweet, even in such a confined room. Then suddenly she yells at her mother, because the drugs cause mood swings. Once in a while, Stacy cracks. Her eyes tear and she steps outside the room for a moment. There's only so much "I hate you, Mommy!" she can take. Fortunately, she knows that in a few minutes, Katie will be hugging her and telling her how much she loves her.
One of Stacy's favorite parts of the day is when Katie has to go the bathroom. Because Stacy has to wear gloves and a mask all the time, she never gets to touch her daughter skin to skin. Except when she picks her up to carry her into the bathroom. Then, if Katie puts her head on Stacy's shoulder, a sliver of skin on Stacy's neck touches the skin on Katie's face.
At last, her immune levels are up
Finally, after two more days that seem like an eternity, tests show that Katie's immune levels are improving.
Stacy's counting the days -- they've already been in the hospital for nearly a month. She's hoping now that they can go home soon, maybe 10 more days. On June 12 Katie's hemoglobin count is 10.9, which is closing in on a child's normal range of 12 to 16; her retic count, a measure of new red blood cell production, is 1.2, higher than she's ever had in her life. For the first time, she's making her own red blood cells.
In Nesconset, Stacy's sister Alesia Holewinski enlists her mom, her niece, and several friends of the family to clean the Trebing house. They put up an octagonal red sign on the front door that reads "STOP" -- and directs people to the garage entrance. Even though a cleaning service is coming, Holewinski's sure the service won't wipe down everything with disinfectant like she plans to do.
Holewinski is nervous about Katie's transition to home -- she will have to stay in the house for months because her immune system will still be weak and she'll be extremely susceptible to illness. Holewinski worries about Katie coming home to two active brothers who will be out playing and bringing in germs.
There's a knock at the garage door. It's Kelsey Gilmartin, a 16-year-old neighbor. She's come to make a "Welcome Home" banner for Katie.
On June 21, 2006 -- 37 days after Katie checked into Memorial Sloan-Kettering for her bone marrow transplant -- Stacy wakes up and pulls down the string of tiki lights she put up that first day. At noon, Katie's grandmother, cousin and aunt arrive to pick Katie and Stacy up and bring them home. It takes hours for the hospital staff to finish all the testing and paperwork. When one of the nurses, Jennifer Brustein, comes in, Katie finally yells, "I want to go home!" Everyone laughs.
Brustein has paperwork for Stacy to sign and medications for her to take home.
The nurse puts Katie in a wheelchair to leave the hospital. On the way to the elevator, Katie passes by a priest who has visited her several times during her transplant stay.
"Katie, you're going home," the priest says. "God bless you."
Katie heads home
Nearly the whole ride home, Katie's asleep in the van. She wakes to see the pinwheels on the front yard of the house. Stacy carries Katie inside because she's not allowed on the grass.
"Where's Cal? Where's Christopher?" Katie demands. "Where's all the people?"
The boys are in Fire Island with Steve's parents because they both have colds; Steve will be home soon from work.
Within a few days, the boys are well enough to come home. Stacy puts a mask with tiny Mickey Mouse characters onto Katie -- she'll have to continue wearing one around people for weeks.
It isn't exactly the reunion Stacy was expecting.
As soon as Christopher sees Katie -- bald and wearing a mask -- he starts to scream. Stacy thinks that Christopher doesn't realize he's looking at his sister.
Calvin, on the other hand, is unfazed. "She's not that bald," he says, alluding to the fuzz on Katie's head.
"I love you," Katie says to Calvin and Christopher. "I love my brothers."
Calvin and Katie climb on the couch with Stacy and Christopher, and Stacy starts to cry. It feels so good, after a month and a half, to hold all three of her children together.