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ny-trebing-sg

The Trebing children - Calvin, Katie and Christopher - sat on the porch of their Nesconset home, looking like any other children slurping Coke floats and ice pops under an <a href="/topics/Easter">Easter</a> Sunday sun. 
But two of these siblings share a bond more special than most - a lifesaving bond forged three years ago in a hospital room. 
Seven-year-old Katie was born with Diamond Blackfan anemia, a rare blood disorder that kept her body from making red blood cells. Her only hope for a cure was a risky bone marrow transplant, using marrow from a compatible sibling donor. Calvin, now 10, wasn't a match. 
So in a move some saw as fraught with ethical concerns, Katie's parents, Steve and Stacy Trebing, created a third child using embryonic testing to ensure the baby would be a perfect match for Katie. 
The Trebing's story is being retold now in a book being published this month, and in television and radio appearances the family is making. 
"It was definitely surreal," Steve Trebing said. "I didn't think it was possible. You watch all these movies, and you're like oh, yeah, it's science fiction. But when it was presented to us, I was almost shocked. Was it real? Could it really happen?" 
If all went well, Christopher would suffer no ill effects and Katie would be completely cured. There would be no more blood transfusions that Katie relied on to survive, and, more crucially, she would have a better long-term prognosis. 
But the transplant process carried its own risks. To ready her body to accept the marrow, Katie would have to endure chemotherapy that would destroy her immune system. 
"The risk is that she would die, really," Stacy Trebing said. "That's a big risk." 
But the Trebings decided to go ahead with the transplant. In May 2006, using marrow removed from Christopher's hip bones, doctors at Memorial Sloan-Kettering dripped the fluid into Katie's system. The transplant took. Katie was free of the disease. 
Because the Trebings don't believe that embryos at such an early stage can be considered as children, they didn't have a concern about choosing the best ones as a match for Katie, Stacy Trebing said. And once Christopher was born, the couple didn't believe he would "feel negatively because of what has happened, but we never really thought he would because we were just so happy to have him," she said. 
Katie's transplant doctor, Dr. Farid Boulad, medical director at Memorial Sloan-Kettering's Pediatric Day Hospital, said in an e-mail that Katie is "doing very well" and is "cured." 
The Trebings say the cloud has finally lifted. "I used to think about it all the time," Steve Trebing said. "Daily." 
Now Katie's days are taken up with school, gymnastics, soccer and cheerleading, not doctors and hospitals. 
She still must undergo twice-yearly testing for the rest of her life, in case the chemotherapy had harmed her organs. The result of a recent heart test has been slightly abnormal, Stacy Trebing said, but doctors have opted to wait and watch. 
Meanwhile Katie, an energetic first-grader at Tackan Elementary School in Nesconset, is happy to talk about her story. 
"I didn't have enough blood. Then Christopher gave me blood and I got better," she said. 
Now, Katie said, "I feel super," jumping up and spreading her arms in a cheer. 
The Trebings have been sharing their story publicly, saying they hope that it will help others. 
Stacy Trebing sometimes speaks at bioethics classes about the Trebings' decision, and Steve Trebing plans to compete in a half-Ironman triathlon this year to raise money for research on the disease. 
"We've already had an e-mail from a family that wanted to remain anonymous, and they just started the same journey," Steve Trebing said. "They said, 'Thank you, thank you, thank you.' And already it's worth it." 
The Trebing family will be at The Book Revue, 313 New York Avenue, Huntington, at 7 p.m. tonight to discuss their successful effort to save their daughter, Katie, from the rare disorder, Diamond Black Fan Anemia, by conceiving a child who would be a match to donate bone marrow. The case is the subject of a new book, The Match: "Savior Siblings" and One Family's Battle to Heal Their Daughter, by Newsday staffer Beth Whitehouse, who also will speak tonight.

Long Island

LITRE08

Catching up with Katie Trebing and family

Katie Trebing

Stacy opens a number "2" candle and Katie sticks it on the sheet cake. 
"Bring Bubba!" Katie demands. Christopher, whom the family still calls by his nickname, is in the Trebing backyard, jumping on the trampoline. "Bubba!" 
A streak of boy runs through the screen door. He bounds onto the same chair with Katie. Older brother Calvin hovers behind them. Christopher blows out the candle, Katie kisses Christopher on the cheek and Christopher promptly sticks his finger into the green icing and into his mouth. 
It's May 5, 2007, Christopher's second birthday party. This is the shindig the Trebings couldn't have last year when Bubba turned 1, because they were just two weeks from Katie checking into <a href="/topics/Memorial_Sloan-Kettering_Cancer_Center">Memorial Sloan-Kettering Cancer Center</a> in <a href="/topics/Manhattan">Manhattan</a> for her bone marrow transplant. 
"I can't believe it. It goes so fast," Steve says, taking a break from grilling hamburgers and hot dogs to join dozens of family and friends in the singing. "It seems like yesterday he was born, and now he's 2. We kind of lost that first year. We couldn't have people over. This is his first birthday party." 
"Bubba gets the first slice," bosses Katie. "He's the birthday boy." 
Stacy hands Christopher a plate. 
"Happy Birthday to you!" Katie yells. 
The Trebing celebrations continue all summer. 
A few days later, Katie is a guest of honor at the annual black-tie Bone Marrow Foundation fundraising dinner in Manhattan, which raises $800,000 to help families with medical costs. Cameras flash in a cacophony of light as paparazzi shoot Katie posing with the evening's co-host <a href="/topics/Meredith_Vieira">Meredith Vieira</a>, the evening's entertainment <a href="/topics/Rihanna">Rihanna</a>, and finally <a href="/topics/Sarah_Jessica_Parker">Sarah Jessica Parker</a>. 
A waitress passes by serving caviar hors d'oeuvres. "Got any chicken nuggets?" Stacy quips. At dinner, Calvin, in a tuxedo, pulls a funny shaped mushroom from his salad plate and holds it up like a smelly sock. "Ew," he says, and Steve, also in a tux, shoots him a warning look. At 10 p.m., Katie is asleep on Dad's lap. 
In July, doctors take Katie off all medications. Boulad delivers the news: Katie's Diamond Blackfan anemia has been cured. Katie has her first appointment with Charles Sklar, the physician at Memorial Sloan-Kettering who monitors bone marrow transplant recipients long term and will examine Katie periodically through puberty. Katie will have an increased risk of some cancerous tumors and will need to have follow-up bloodwork done to remove previously accumlated iron from her liver. 
During August, the Trebings vacation at Steve's parents' Fire Island house. All five Trebings head to the ocean, on the same stretch of sand where three years ago, Stacy told Steve that although she was pregnant with Christopher, a blood test showed her hormone levels were low and it was possible she was miscarrying. 
Where he'd kissed her belly and urged Bubba to hang on. 
<a href="/topics/Today_%28NBC_Program%29">Today</a>, Steve swings Christopher through the waves, as Katie darts through the surf shadowed by Hobbes, the family's St. Bernard, and Calvin skimboards along the shoreline. 
In early September, in what seems to Stacy like the final sign life might be normal, Katie heads back to pre-school. Katie's almost 5 now. Stacy has made a construction paper chart that hangs on the refrigerator with pictures of chores Katie has to do before she leaves -- brush her teeth, get dressed, pack her snack. Katie is up at 7 the first morning of school three weeks ago, so excited she doesn't go back to sleep even though her program doesn't start until 10:30. 
"It's my special day," Katie proclaims, all ready in a brown dress with pink polka dots, a lavender heart barrette holding back her now grown-in hair. "We're going to do painting, and play with Play-Doh." 
"Let's check your backpack to make sure you have everything," Stacy says. 
Katie sits on the kitchen floor. She sticks her head completely inside her backpack, pulling out first her lunch box and then her school folder. 
She pokes her head in again, but sees she's already taken out everything. 
She looks up. 
"That's the end of the story, folks," she announces.

ny-enepi04

Cured by her brother's bone marrow, Katie forges ahead

Katie Trebing, 6, bounced around the playroom at Schneider Children's Hospital in New Hyde Park yesterday practicing her "Surprise!" for the imminent arrival of the Bell family -- and the crew of ABC-TV's " Extreme Makeover: Home Edition." 
The Trebings of Nesconset had met the Bells of <a href="/topics/Tucson">Tucson</a>, Ariz., only twice before. But theirs is something of a blood bond. 
Lizzie Bell, 14, is among only about 1,000 people in the United States and <a href="/topics/Canada">Canada</a> with the rare blood disorder Diamond Blackfan anemia. People with the condition can't make red blood cells that carry oxygen to the body's organs. Monthly blood transfusions keep them alive. 
Katie was born with the condition but was cured after the Trebings had another child, Christopher, who was able to donate the bone marrow that cured Katie. 
The Trebings and Bells were among about 40 families affected by DBA to attend Camp Sunshine in <a href="/topics/Maine">Maine</a> in 2004. For Stacy Trebing, Katie's mother, the meeting provided a glimpse of what could have been. "I was able to look at Lizzie and understand what life would be like for my daughter," she said. 
Lizzie Bell's condition -- and her efforts advocating for blood donations -- were among the reasons the family was chosen for "Extreme Makeover." While the show's crew rebuilds the family's home, the Bells were sent on a New York City vacation. 
They visited New York before but slept at the Ronald McDonald House and spent most of the time at Schneider, where Dr. Jeffrey Lipton, chief of pediatric hematology/oncology and <a href="/topics/Stem_Cells">stem cell</a> transplantation, keeps a DBA registry. In contrast, the "Extreme Makeover" trip included Broadway shows and a trip to the top of the Empire State Building. Nights were spent at the Waldorf- Astoria. 
And unknown to Lizzie, ABC set up 10 simultaneous blood drives across the country in her honor and arranged yesterday's reunion at Schneider of about 10 families with children affected by the disorder. "We weren't expecting that!" she said. 
Among the visiting families were Patrick Ottati, 40, of Hampton Bays, and his daughter, Elizabeth, 10, whose DBA is in remission. He said he hoped the excitement of the show provided the Bells a respite from the sometimes "depressing" condition. "For them to forget about everything," Ottati said, "it's awesome." 
Lizzie's mother, Kathleen Bell, called the group of about 30 people "our other family." She said the Trebings, with whom she kept in touch in the years between camp, were "pioneers." 
"They had to tackle a very specific aspect of the disease," she said. 
The Trebings were the subject in 2007 of a five-day Newsday series chronicling their quest to cure Katie, who no longer needs monthly blood transfusions. 
Yesterday, Katie said she was happy for Lizzie. "We have lots of fun," Katie said. "I was excited that she was going to get a new house."

ny-likatie0201

Katie Trebing helps surprise ill teen at LI reunion

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 <a href="/topics/Memorial_Sloan-Kettering_Cancer_Center">Memorial Sloan-Kettering Cancer Center</a> in <a href="/topics/Manhattan">Manhattan</a> 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 <a href="/topics/Halloween">Halloween</a>, 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 <a href="/topics/Make-A-Wish_Foundation">Make</a>-A-<a href="/topics/Make-A-Wish_Foundation">Wish</a> Foundation trip to Disney World in early February, Christopher gets a rash. The <a href="/topics/Make-A-Wish_Foundation">Make-A-Wish Foundation</a> 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 <a href="/topics/Taco_Bell">Taco Bell</a> 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 <a href="/topics/Super_Bowl">Super Bowl</a>?" 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 <a href="/topics/Easter">Easter</a>. Everyone is disappointed. 
The days pass without Katie getting worse. So on Monday, April 9, Katie packs her American Girl suitcase for <a href="/topics/Florida">Florida</a>, 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.

ny-enfive04

Katie's long road to recovery after transplant

On Saturday evening, March 4, 2006, every spot in the parking lot of the Moose Lodge in Mount Sinai is filled. 
"Welcome to an Evening of Hope and Inspiration for Katie Trebing," read programs on round tables inside the lodge. Lavender balloons -- Katie's favorite color -- float in the room. More than 75 baskets with donated items are ready for raffle. 
Friends and family of Stacy and Steve Trebing, wearing "Show Me the Money" buttons, sell chances for a contest to win one vacation to <a href="/topics/Ireland">Ireland</a> and another to the <a href="/topics/Caribbean">Caribbean</a>. 
Flower pots with "Katie" painted on them sit on tables, with a picture of Katie sticking out of each one instead of a flower. 
The Trebings have let their friends and family put together a fundraiser to help with the expenses in their quest to cure their daughter. With Steve Trebing owning his own business, the couple is better off financially than many families facing a health crisis. Still, the costs are daunting. 
Tallying up the cost 
To save one of their daughter's ovaries required a payment of $5,000 because the experimental ovarian freezing and storage wasn't covered by insurance. And, with the final tally months away, they have already spent $35,000 for the in vitro fertilization and preimplantation genetic diagnosis (PGD) to have Christopher. 
"This is really, really, really awkward for us," Stacy Trebing had said to her friends and family at their first fundraiser organizational meeting at the end of January, held at Stacy Trebing's sister Alesia Holewinski's home. Stacy's two sisters, Holewinski and Leslie Giordanella, spearheaded the meeting. 
"We want to let everyone know Steve and I were first against this because we have a lovely home and a wonderful family. But as things are going by, the money is going. The whole thing is very strange for our family to be asking for outside help." 
"People get ruined even with good insurance," Pete <a href="/topics/Martina_McBride">McBride</a> told the Trebings that night. McBride was one of Steve's two best men at the Trebings' wedding. He has a good sense of what they are going through, because his son, Jack, has leukemia that required a bone marrow transplant. The McBrides held their own fundraiser a year earlier. 
People come because a child needs help, McBride assured the Trebings. If people don't think you should be raising money, they won't come. 
One of the first people to arrive at the Moose Lodge is James Stelling, the fertility doctor who extracted Stacy's eggs and implanted Christopher's embryo into Stacy more than 18 months before. Two nurses from Stelling's office come as well. So do friends from Stacy's mother's motor home club, along with college buddies Steve hasn't seen in years, and teachers from Katie's pre-school. 
Nearly 400 ticket stubs -- at $50 each -- sell quickly, raising nearly $20,000. 
Rob Damers, a teacher living in Holbrook, went to college at the <a href="/topics/State_University_of_New_York">State University of New York</a> at Oswego with Steve and hasn't seen him in four years. He got an invitation from Stacy's sister, who had taken the Trebings' address books and alerted everyone in them. 
"I really didn't know you guys were going through all this or I would've been quicker to call," Damers says to Steve Trebing. 
Throughout the night, formal programming is interspersed with DJ music. "As you can imagine, my wife and I have a unique perspective on what Steve and Stacy are about to endure," says McBride to the crowd. "To Steve and Stacy, thank you for allowing us to help in Katie's fight. Please know that everyone in this room is praying for you and for our hero, Katie." 
Later, after the donated subs, bagels, salad, penne a la vodka and eggplant Parmesan are gone and dessert is set out, members of the Trebing family speak. 
Outpouring of love, support 
"Thank you very much for your support of our granddaughter," says Rich Trebing, Steve's dad, with tears streaming down his face. His wife, Kathy, stands next to him on stage with a <a href="/topics/Home_Depot%2C_Inc.">Home Depot</a> apron on to collect money and raffle tickets hanging like garland around her neck. 
Stacy's friend Michelle Weinkauf of Lynbrook speaks next: "We have received hundreds of letters. Strangers have gone out of their way to send their donations and their prayers to Katie. We have truly felt the human spirit as it shines big." 
Then the Trebings take the stage, Stacy Trebing at the microphone. "Seeing all of you here tonight to support Katie gives us an overwhelming sense of love and security. I can't even begin to express the gratitude we feel." 
A slide show of Katie begins, to the music of Butterfly Kisses. "In my daughter's eyes, I am a hero. I am strong and wise, I know no fear . . .," sings <a href="/topics/Martina_McBride">Martina McBride</a>, as pictures of Katie playing in the snow with Calvin are interspersed with Katie getting blood transfusions. The Trebing children are tonight home with a babysitter. 
Stacy's mom, Pam Olsen, has her arm around Steve's mom. Stacy's dad, Calvin Olsen, hovers nearby. Steve's sister, Nancy, is crying. Even Steve, who has vowed not to break down tonight, is wiping his eyes. 
The evening a financial success, the money will help pay for repeated transportation to <a href="/topics/Memorial_Sloan-Kettering_Cancer_Center">Memorial Sloan-Kettering Cancer Center</a> in <a href="/topics/Manhattan">Manhattan</a>, co-pays for drugs and hospitalization, an advanced filter system for the house for the time after Katie comes home and has to be germ-free, and maybe even enough so Katie years from now can have PGD herself when she has her ovary replaced to ensure none of her children is born with Diamond Blackfan anemia. 
But it also was a beautiful sendoff as Steve and Stacy enter the most perilous part of their journey to cure Katie.

ny-encost03

Family, friends host event to raise funds for Katie

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 <a href="/topics/Memorial_Sloan-Kettering_Cancer_Center">Memorial Sloan-Kettering Cancer Center</a> in <a href="/topics/Manhattan">Manhattan</a>. 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 <a href="/topics/Brad_Pitt">Brad Pitt</a> and <a href="/topics/Angelina_Jolie">Angelina Jolie</a>. 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 <a href="/topics/Lebanon">Lebanon</a> 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." 
Transplant day 
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 "<a href="/topics/The_Little_Mermaid">The Little Mermaid</a>" 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. 
Facing setbacks 
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.

ny-enfour03

Katie receives life-saving bone marrow transplant

Katie Trebing is believed to be the youngest girl to have an ovary removed and frozen for future use. 
Ovarian cryopreservation has been done for about a decade. The first -- and so far only -- birth in the United States after ovarian tissue was removed, frozen and later reimplanted, occurred in September 2005, to Ann Dauer, then 33. She had a baby girl she named Sienna. Dauer surprised doctors by getting pregnant naturally after the reimplantation. 
Keeping her 'dreams alive' 
"Being a mom is the coolest gift you can ever get," said Dauer, who lives near <a href="/topics/Syracuse">Syracuse</a>. Being able to freeze her ovary gave Ann hope during her stem-cell transplant to fight non-Hodgkins lymphoma in 2002. After her ovary was removed and frozen, she said she would lie in the hospital bed thinking, "I've done every step I can to keep all my dreams alive." 
Dr. Kutluk Oktay, the fertility specialist at New York-Presbyterian/Weill Cornell Medical Center in <a href="/topics/Manhattan">Manhattan</a> who froze Katie's ovary, also was the doctor who froze Dauer's. To date, Oktay has frozen ovaries from about 90 women, he said. He called ovary cryopreservation a "burgeoning technology." 
Dauer's daughter was the second such birth in the world -- the first was in <a href="/topics/Belgium">Belgium</a> a year earlier. There's been one more documented, in <a href="/topics/Israel">Israel</a> in 2005. About nine other women have had their ovaries re-implanted. Half of them have tried to have children but haven't yet been successful, Oktay said. 
A promising option 
The perfection of ovarian cryopreservation and subsequent reimplantation is important to women diagnosed with cancer, blood diseases or other disorders that require radiation and chemotherapy, which can cause infertility. If they can have an ovary removed before the eggs are damaged, they might later have biological children. 
Oktay found it disturbing that, while doctors could cure a woman of cancer, they would leave her infertile. 
"It didn't make sense to me that while we were treating a woman for one thing, we would leave her severely disabled -- and infertility is a disability," Oktay said. Oktay also is working on ways to protect women's ovaries during chemotherapy to eliminate the need for ovary removal. 
Though ovarian cryopreservation was meant for cancer patients, it could in the future open up opportunities for all women -- healthy women who want to delay childbirth could have an ovary frozen while still young and fertile, suspending the aging of the eggs. 
Beating the biological clock 
"If our method works, a young woman, age 21 and entering law school or journalism school or medical school, could cryopreserve her ovary for later use," said Teresa Woodruff, the Thomas J. Watkins Professor of Obstetrics and Gynecology at the Feinberg School of Medicine at <a href="/topics/Northwestern_University">Northwestern University</a> in <a href="/topics/Chicago">Chicago</a>. "Rather than take a chance with the biological clock, you could cryopreserve your ovary and use it when you are ready. You would be your own egg donor." 
While doctors have advanced the freezing technique, which originated in England, they are still working on the best way to reimplant the ovary so it might produce a pregnancy years down the road. 
Woodruff and her team are working on maturing eggs in the laboratory. The matured eggs would be fertilized in a petri dish and the embryo implanted into the woman's womb. In this case, the benefit -- in addition to eliminating the need for women to take certain fertility medications and have implantation surgery -- would be that cancer patients wouldn't risk reintroducing cancerous cells into their systems along with the reimplanted ovary. 
Woodruff was recently awarded a $21 million grant from the <a href="/topics/National_Institutes_of_Health">National Institutes of Health</a> to continue her work on preserving fertility in cancer patients. 
As with all innovative medical technologies, there is an element of the unknown in ovarian cryopreservation that concerns some bioethicists. 
When individuals try most new treatments, they are risking only their own health. But when they try new reproductive technologies, they impose that risk on their offspring, said Alta Charo, professor of law and bioethics at the <a href="/topics/University_of_Wisconsin">University of Wisconsin</a>. No data yet exists on implications for a child born of a frozen ovary. 
"When you, the adult, accept there is risk, it's really your child who will share the burden of those risks," Charo said. 
In Dauer's case, Oktay reimplanted her ovary in her groin. He had planned to extract eggs with a needle and do in vitro fertilization. But Dauer surprised Oktay by conceiving naturally. The transplanted tissue "jump started" the ovary left inside Dauer, Oktay theorized, taking her out of premature menopause and restoring fertility.

ny-enovary02

Freezing ovaries for later use is 'burgeoning technology'

The moral and ethical issues surrounding the selection of a donor sibling don't end with the baby's birth. 
That donor sibling assumes a unique role in the life of the sick child and the entire family. After all, the donor child began as an embryo specifically chosen to help a sibling. 
"That's an inevitable fact about the child's creation that the child is going to know," said Adrienne Asch, who teaches bioethics at <a href="/topics/Yeshiva_University">Yeshiva University</a> in New York City. 
A perfect match for life, this child could be called upon should the sick sibling have additional medical needs. Parents, who would normally make a medical decision in the best interests of the baby, now are advocating for two children whose interests may diverge. 
Advocating for the donor child 
While some ethicists say they are okay with the umbilical cord blood and even actual bone marrow being used to provide a sick sibling with a transplant, they fear that may not be where the demands end for the donor sibling. 
They ask: what if the parents need the donor child again, only this time it's for, say, a kidney for the sibling? 
Some ethicists also worry about the mental health of the donor child down the road, once he or she learns the history of the conception. 
"I'm concerned with the real, live children," said George Annas, head of the <a href="/topics/Department_of_Health">Department of Health</a> Law, Bioethics and Human Rights at <a href="/topics/Boston_University">Boston University</a>. "That's what you have to be concerned with -- the embryos that go on to become children. 
"The first issue is whether you're having a baby just to be a donor. All parents deny that. They've learned the right answer to that question." 
Beyond that, there's the issue of how the donor child is used, Annas said. For example, if the cord blood from the donor child isn't enough to save the sibling, doctors then go to that child for bone marrow, extracting it from the back of the child's hip in an operating room. This can be a painful procedure and has its own risks to the donor, such as infection. 
To Annas, going beyond the cord blood crosses the line. 
If bone marrow is taken, "Then the question is, 'How often do you have to do this?'" he said. "Hopefully it's just once." 
Jeffrey Kahn, director of the Center for Bioethics at the <a href="/topics/University_of_Minnesota">University of Minnesota</a>, shares Annas' concerns. 
"When you take a 1-year-old to the O.R., presumably under general anesthesia, and you stick a big old needle in his hip, you have to think about how much risk you are willing to take," Kahn said. "How far up the level of risk would you expose the healthy child for therapeutic treatment for the sick child?" 
Looking out for their rights 
Beyond the parents, there is nobody looking at the rights of the donor child. 
"There is nobody equipped to say, 'Hold your horses. Wait a second. Let's look at what's going on with the donor child,'" said Kahn's colleague Susan Wolf, a professor of law, medicine and public policy at the University of Minnesota. 
"This is a living, feeling human being with his or her own interests," Wolf said. "How many times would you have gone to the hospital for your brother or sister, been anesthetized, and submitted to a bone marrow harvest? The answer to that would vary depending on each child and each family. A kid many not really want to play that role. 
"If you were dealing with a 10-year-old, you might see something very disturbing. You might see a 10-year-old freaking out. A baby isn't capable of mounting protest." 
While a parent -- in theory, at least -- would do anything to save his or her child, a sibling might not. 
In the United States medical decision making is largely the parents' call, in consultation with doctors, even in those cases when children are coincidentally genetic matches to their siblings. 
<a href="/topics/Jodi_Picoult">Jodi Picoult</a>, a best-selling author who grew up in Nesconset -- the same community in Smithtown the Trebings live in -- wrote a 2004 novel called "My Sister's Keeper." In it she created a fictional scenario in which a 13-year-old "savior" sister, created through in vitro fertilization and preimplantation genetic diagnosis, sued her family so she wouldn't have to continue propping up her older sister's health, this time with a kidney transplant. At the end of the novel it's revealed she acted in part at the request of her sick sister, who wanted to be allowed to die. Because the oldest donor child worldwide is only 7, such a scenario couldn't yet happen. 
Stacy Trebing said she started the book but couldn't finish it, especially since the sick child was named Kate. 
Family dynamics a concern 
Some psychologists worry about the new child's mental health, even if the donor child isn't called upon again after the initial bone marrow transplant. 
"The parents are going to have to communicate to the child that the child is valued for his or her own characteristics and life, in addition to being created to save his sibling," Asch said. "In the same way that children can resent one another for all kinds of things, or can be jealous of each other or feel that they are not as valued by a parent, you obviously have plenty of potential sibling problems here. There's no way out of that. That doesn't mean the parents shouldn't do this, but they better be aware of what they are doing." 
What the child may later feel is a matter of speculation, said Elizabeth Grill, psychologist at The Center for Reproductive Medicine and Infertility at New York-Presbyterian/Weill Cornell Medical Center in <a href="/topics/Manhattan">Manhattan</a>. She counsels couples undergoing PGD. 
"There's no black-and-white answer, because it really depends on the family dynamics and the evaluation of each family," she said. 
If the transplant succeeds, and the donor child is elevated to hero status, she said, this could lead to a special role in the family that could be easy or difficult to handle. 
"On the one hand, the children could feel an incredible closeness to each other," Grill said. "On the other hand, there could be these conflicted feelings of 'I feel used,' or 'I don't have a choice.'" 
Beyond the donor child, the recipient also could feel guilty or grateful. 
"We see this with sister donations of eggs," Grill said. "The recipient feels like they can never possibly repay this. What can you possibly give to repay the gift of life?" 
And what if the transplant from the donor child fails? 
"If a child is born and the older sibling dies, what will that do to the donor child?" asked Thomas Murray, president of The Hastings Center in Garrison, N.Y., a research institute devoted to ethical issues in medicine and the life sciences. Will the child feel he failed in the role he was born to play? 
"I think that would be a challenge to parent," Murray said. "I'm not a person who believes that life is neat and tidy and runs smoothly. I can imagine strong families surviving that challenge very well. I could imagine others not so well."

ny-enafter02

Ethicists ponder potential uses of donor child

Standing in a <a href="/topics/Wantagh%2C_NY">Wantagh</a> High School classroom, Jennifer Kolar had been holding back tears for an hour. But then she approached Stacy Trebing and, as she began to talk, they rolled down her face. 
Several years ago, she explained, Kolar and her husband had tried to get pregnant with a baby who could provide a bone marrow transplant for their now 7-year-old son, Dylan, who has a disease called Shwachman Diamond Syndrome. They tried twice, and gave up. 
Then Kolar, who lives in <a href="/topics/Sayville%2C_NY">Sayville</a>, read the Newsday series in October about how Steve and Stacy Trebing had a third child whose bone marrow could be used to cure their daughter Katie's Diamond Blackfan anemia disease. 
"This just inspired us to try again," she told Trebing. 
Stacy Trebing spoke Thursday to a bioethics class about the decisions she and her husband made in their quest to cure their daughter of her deadly disease. The couple's 2-year-old son Christopher, whose bone marrow was used to cure Katie, slept next to her in his stroller. Kolar attended at the invitation of one of the teachers who knew about Kolar's struggle and thought she would want to hear Trebing in person. 
Katie Trebing, now 5, was declared cured of Diamond Blackfan anemia this year after receiving the transplant. The family's story was first told in the five-part Newsday series. 
"That's the whole purpose of why we went public with it," Trebing said. She said she was thrilled to meet Kolar. "What an amazing opportunity for us to actually meet someone who it may make a difference in their decisions, their lives and their children's lives." 
Since the Newsday series ran, Stacy Trebing has become an ambassador for educating about so-called donor siblings -- children conceived to help cure a sibling. She has spoken to an ethics class at <a href="/topics/Stony_Brook_University">Stony Brook University</a>, and the family has been contacted by media worldwide. 
And tonight at 10, the Trebings' story will be broadcast on ABC News' "20/20" program. The Trebing segment is part of an hourlong special hosted by anchor Elizabeth <a href="/topics/Elizabeth_Vargas">Vargas</a>. 
"It's an incredibly dramatic story," Vargas said. "It's about parents' love and what they will do to save their child." 
Katie Trebing was born in 2002 with the disease, which robbed her body of the ability to make red blood cells that circulate oxygen to the organs. To keep her healthy, she needed regular blood transfusions to give her someone else's red blood cells. The disease likely would have killed her by the time she reached her 40s. Steve and Stacy Trebing enlisted fertility experts and a geneticist to help them have another child who would share the same inherited section of DNA with Katie. 
Katie turned 5 on Dec. 12; an ABC News "20/20" crew filmed the gaggle of little girls who helped her to celebrate and that birthday party will be part of tonight's broadcast. 
Stacy Trebing recently learned of a 3-year-old girl with Diamond Blackfan who, like Katie, underwent a bone marrow transplant from an exact-match sibling. Stacy Trebing said the 3-year-old is now fighting for her life after contracting a potentially fatal complication called venal occlusive disease, complicated by a second condition called graft-versus-host disease. 
"This could easily have been Katie," she said. "We really are very grateful for what we have."

ny-likatie1220

Trebing family provides inspiration

ny-enthree02

Hope delivered: Baby conceived to cure Katie is born

The first child in the world born after PGD confirmed he would be a bone marrow match for his older sister is today 7 years old and in first grade. 
Lisa and Jack Nash of Englewood, Colo., said they tested their son Adam's embryo to ensure he didn't have the bone marrow disorder Fanconi anemia his sister Molly had and to ensure he would be a tissue match for her. 
Finding cure for their daughter 
The Nashes speak publicly to people all over the world about what they did to cure their daughter. 
"By us being public, other people learn about it," Lisa Nash said. 
Fanconi anemia is similar to Diamond Blackfan anemia, the bone marrow disorder Katie Trebing has, in that the patient needs regular blood transfusions to stay alive. However, it is more dangerous. Molly was a few months from death when she had her bone marrow transplant in 2000 using blood from Adam's umbilical cord, Lisa Nash said. 
Saving Molly's life was not the sole reason the Nashes had Adam, Lisa Nash said in a telephone interview. 
"We had Adam first and foremost because we wanted a bigger family," she said. The Nashes said they would have had Adam through PGD to ensure he didn't have Fanconia anemia, even if it wasn't an option to also check for sibling matching. 
"The fact that he was able to help her really was icing on the cake," she added. 
Brother's cord blood used 
Molly had a bone marrow transplant using Adam's umbilical cord blood the month after he was born. Her bone marrow is now free of Fanconi anemia. 
However, there are still concerns about her health. "These kids are still very prone to certain types of cancer. We watch her very closely for head and neck cancers," said Lisa Nash, 41. 
Molly has other physical ailments related to her disease. She is deaf in one ear, was born without thumbs, and is fed with a feeding tube, her mother said. Her thyroid failed -- a late-term effect of the chemotherapy that preceded the cord blood transplant -- and she recently had surgery to correct cataracts. 
Molly is now 13 years old and is in seventh grade. "The spirit in her and the fire in her -- she is just an amazing, amazing kiddo," her mother said. 
The Nashes have since had another child using PGD to avoid Fanconi anemia. Delaine Nash is 4. 
The Nashes said they don't talk to the children about the role Adam played in Molly's survival. 
"If you ask Adam what happened, he'd say, 'I gave Molly my blood so she would feel better.' Someday when they're old enough, we'll explain it to them," Lisa Nash said. "We want our kids to have normal lives and be just like everybody else." 
She scoffs at critics who fret donor children such as Adam might one day feel they weren't really wanted. 
"Adam, being the sole male in the family, he is the be all and end all," she said. He is "idolized" and "adored," she said. 
Call for oversight 
To anyone who worries taking a cell from an embryo -- as is done in PGD testing -- might prove harmful later, Lisa Nash said of her son, "He walks and he talks and he reads. The only thing we see is he can't play basketball, but neither can his father. If you want to attribute something to pulling off the single cell, he can't play basketball." 
As for how much they would use Adam in the future to help Molly, Lisa Nash said she and her husband decided before Adam was born they would only use his cord blood and not his bone marrow to cure Molly. 
"Adam was brought here because we loved Adam and not for spare parts," she said. The cord blood, she said, was "his garbage. He didn't need it any more. When it came to taking bone marrow from Adam, that wasn't okay in our eyes. That's where we drew the line." 
So far, they haven't had to test their resolve. 
Lisa Nash said she is a proponent of government oversight of the use of PGD technology. "The government should look at it and put some kind of boundaries and barriers," she said. 
Perhaps, she said, insurance companies might also pay for the procedures if they were regulated. She said they spent $250,000 to have Adam, because they had to go through in vitro fertilization five times before it worked. They took out a loan to pay for it.

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World's first donor child born using genetic testing

When Katie Trebing's parents considered creating a sibling to try to cure their daughter, they had few other families to seek out for advice -- the two geneticists who perform most of the tissue matching in the United States estimate only between 100 and 200 such donor children exist worldwide. 
The first time preimplantation genetic diagnosis (PGD) successfully yielded a donor child was in 2000. Because the scientists who perform PGD are fertility and genetic specialists, a different team of experts performs the subsequent bone marrow transplant. So nobody knows how many siblings actually provided a transplant or whether they were successful. 
Transplants can be done using either the new child's umbilical cord blood or bone marrow extracted from the donor child's body. No person or organization in the United States is known to be collecting data on which choice doctors are making. 
Most of the information on what are called "savior" or "donor" siblings in the United States is anecdotal, gleaned from doctors or geneticists who follow up with families and who say they have not seen any abnormalities. Studies of children who had PGD as embryos are being conducted in <a href="/topics/Belgium">Belgium</a> and in England. 
Sibling matching accounts for only about 1 percent of all PGD cycles, according to data voluntarily collected from U.S. fertility doctors for the first time in 2006 by the Genetics and Public Policy Center at <a href="/topics/Johns_Hopkins_University">Johns Hopkins University</a> in <a href="/topics/Maryland">Maryland</a>. The rest of the time PGD is used to test embryos for inherited diseases or for chromosomal abnormalities. 
A PGD cycle is counted each time a woman uses PGD to try to get pregnant during one menstrual cycle. If she fails to get pregnant and has to try again the following month, that is counted as a separate PGD cycle. 
Of 3,000 PGD cycles reported in 2005, 43 were for donor matching, said Susannah Baruch, director of reproductive genetics at the center. The questionnaire didn't ask whether any babies were actually born after those cycles, Baruch said. 
Conceived to save her sister 
The concept of creating a donor sibling didn't start with PGD -- in 1990, the Ayala family in Southern <a href="/topics/California">California</a> publicly declared that they were conceiving a child in the hopes it would be a match for their then-16-year-old daughter, Anissa, who had leukemia and needed a bone marrow transplant. 
But the Ayalas were taking a chance -- hoping the new baby would be a match for their daughter. And she was. At 14 months of age Marissa Ayala donated marrow to her sister, Anissa. 
"What they did was really, completely just a blessing," Anissa Ayala, now 35, said of her parents. She works for the National Bone Marrow Registry in Southern California. "My sister is the one who will tell you that without me she wouldn't be here, and without her, I wouldn't be here." Marissa Ayala did not want to be interviewed for this story, Anissa Ayala said. 
"She doesn't really want to focus on that as far as who she is," Anissa Ayala said. 
With the evolution of PGD, parents wanting an exact match sibling could virtually guarantee it before a pregnancy began. As the PGD process becomes less expensive and less invasive, many more children with bone marrow diseases such as leukemia could benefit from donor siblings, reproductive experts said. 
PGD used to test for diseases 
Historically, PGD was developed to determine whether embryos had inherited certain diseases their parents carried, such as sickle cell anemia, according to Mark Hughes of Genesis Genetics Institute in <a href="/topics/Detroit">Detroit</a>, one of the nation's foremost experts on the testing. 
Before 1990, doctors told parents of children with inherited diseases that any future child would have a 25 percent chance of having the same disease, and that they would have to roll "the genetic dice" if they wanted another child, Hughes said. 
If they went ahead, the couple would go through 15 weeks of anxiety before a test of the amniotic fluid, called amniocentesis, could show whether a fetus had the disease, Hughes said. If yes, the parents would decide whether to abort the fetus. 
Hughes and other doctors wanted to push the diagnosis back to before a pregnancy began. The result was PGD, which allows for a test done on an embryo before it's implanted into the mother's womb. 
An estimated 10,000 children worldwide are thought to have been born using PGD, but no American organization tracks these births. The oldest of these children is now 17. 
PGD also used to select donor 
What evolved from routine testing was using PGD for the benefit of a sick sibling who needs a bone marrow transplant. Hughes said he has performed PGD for tissue matching that has resulted in 114 births. Yury Verlinsky, director of <a href="/topics/Chicago">Chicago</a>'s Reproductive Genetics Institute, said his work has resulted in the births of 40 donor siblings and estimates an additional 40 have been born in <a href="/topics/Europe">Europe</a>. 
A committee of American scientists has been meeting through academic and professional organizations for the past two years to try to implement a U.S. registry to track PGD in all its uses, said David Adamson, director of Fertility Physicians of Northern California and president-elect of the American Society for Reproductive Medicine. 
The Genetics and Public Policy Center at Johns Hopkins University is working with the <a href="/topics/American_Society_for_Reproductive_Medicine">American Society for Reproductive Medicine</a> and the Society for Assisted Reproductive Technology to set up a registry in the next year or two. Adamson is on that PGD committee, which has been meeting about three times a year for the past two years. 
Scientists involved with PGD for sibling matching say they'd like to know the success rate of producing donor children, how many subsequent transplants are done with cord blood vs. bone marrow, how many times in the future a donor child is called upon to aid the sibling, and future health or psychological problems for the PGD child. 
"I can absolutely guarantee that the scientists and the clinicians who are involved with this want this," Adamson said. 
Database of donors urged 
A registry of PGD offspring is the least that should be done, and it should be sure to isolate children conceived as donors into their own category, said George Annas, a professor of health law, bioethics and human rights at <a href="/topics/Boston_University">Boston University</a>. 
"So we can say in 10 years, 'Is this good for kids, or is this bad for kids?' I'm not saying I'm against it, but I'm in favor of keeping statistics on it and protecting the child -- the donor -- from exploitation."

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Genetic testing to yield 'donor child' relatively new

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Despite setbacks, mom continues treatment, gets pregnant

"We want to make sure it's not her heart," the doctor explained when Steve returned to the hospital. Katie needed to be moved to the neonatal intensive care unit at Stony Brook immediately. 
Stacy broke down and cried. 
"You have to discharge me, because I'm going with her," Stacy insisted. 
Stacy and Katie left in separate ambulances; Steve drove in his car. The intensive care unit was frightening. Beeping machines. Tubes and wires everywhere. Nurses and doctors bustling through. 
The Trebings sat elbow to elbow with other parents holding vigil beside bassinets in the NICU. Parents who spend a lot of time in the unit call it the "Nick U" for short. 
Doctors quickly ruled out a heart problem. Hemoglobin, the pigment in red blood cells that carries oxygen, continued to plunge. When hemoglobin drops, the heart pumps harder to circulate enough oxygen through the body. That causes stress on a healthy heart. 
Katie's doctors wondered if the obstetrician might have lifted Katie from Stacy's body too quickly, which could have sent Katie's blood back into the umbilical cord. Maybe that explained her problem. 
To fight the dropping count, Katie needed more blood. So on her first day on Earth, she had her first blood transfusion. 
Steve pushed away thoughts his daughter was in mortal danger. For her part, Stacy saw something good in that Katie was bigger than all the other babies in the unit. They seemed tiny, while Katie weighed 8 pounds, 11 ounces, the biggest baby there. 
As she tamped down fear, Stacy made a promise to her newborn. Over the next four and a half years, through all the hospital and doctor's visits, this promise would become Stacy's mantra, Stacy's prayer: 
"Everything will be fine." 
Cause for concern 
Almost two weeks after her birth, Katie came home to Nesconset, just in time for Christmas. Everything seemed fine. In early January of 2003, a home health-care nurse made a routine follow-up visit to the house. 
"Did you take Katie for a follow-up blood test?" the nurse casually asked Stacy. 
"No," Stacy said, puzzled. "Why?" 
The nurse pointed to Katie's discharge papers from <a href="/topics/Stony_Brook_University">Stony Brook University</a> Medical Center. A scribbled note from the doctor read: "Suggest follow up <a href="/topics/CBC">CBC</a>." The acronym referred to "complete blood count." 
The next day, Stacy took Katie to her pediatrician, Keith Ancona in <a href="/topics/Smithtown%2C_NY">Smithtown</a>, who sent Katie to a lab for the first of what would become weekly blood tests. 
After one of those tests, Ancona called Stacy. "You have to take Katie to Stony Brook immediately," he said. 
A normal hemoglobin count for a child measures between 12 and 16; Katie's had dropped to five. She needed a second blood transfusion right away. Stacy's hope that the transfusion after Katie's birth had fixed whatever was wrong crumpled. 
"Do I really have to?" Stacy asked, crying. 
"She could go into cardiac arrest," Ancona warned. 
Now that her hemoglobin count was a recurring problem, Katie began regular visits to the hospital as doctors tried to figure out what was wrong. 
Diagnosis: Rare disorder 
In the back of his mind, Richard Ancona, the father and medical partner of Keith Ancona, suspected a rare disorder. But until he was sure, he didn't want to alarm the Trebings. When Stacy asked, "What do you think it is?" he would reply, "I'm not telling you because I don't want you to go on the Internet and become a lunatic." 
The answer came in March, after doctors removed a piece of bone from Katie's hip. That biopsy confirmed Richard Ancona's fear: Diamond Blackfan anemia. 
Two doctors at <a href="/topics/Children%27s_Hospital_Boston">Children's Hospital Boston</a>, Louis Diamond and Kenneth Blackfan, documented the disease in 1938. The Trebings learned how rare it is -- probably fewer than 1,000 people in <a href="/topics/North_America">North America</a> had it the month it was confirmed in Katie. It affects boys and girls equally and is commonly diagnosed during a child's first year. In some cases it is genetic, in others it's a new mutation. 
The disease robs a body's ability to make red blood cells. Red blood cells are created in bone marrow, so the disease is considered a bone-marrow failure syndrome. Red blood cells carry oxygen from the lungs through the body. Not having enough red blood cells is anemia -- hence the name, Diamond Blackfan anemia. 
In a stroke of good fortune, the doctor who manages the Diamond Blackfan Anemia Registry of North America is based at Schneider Children's Hospital in <a href="/topics/New_Hyde_Park%2C_NY">New Hyde Park</a>. The Trebings signed up Katie as one of Jeffrey Lipton's patients. 
The Trebings boiled down their questions to one: How do we beat this? 
Considering the options 
Two options treat the disease -- monthly blood transfusions or oral steroids, Lipton told the Trebings at their first appointment, which lasted for hours. Only one treatment could cure it. Katie needed a bone marrow transplant from a sibling who had inherited a specific portion of DNA that exactly matched hers -- the portion that tells the immune system that other cells belong and are not foreign invaders. 
Katie already had started blood transfusions. Lipton told the Trebings these transfusions would cause iron buildup in Katie's organs. That's because more iron is deposited in Katie's body with each transfusion and it accumulates. 
To combat iron buildup, within 24 months Katie would have to be hooked up five nights a week to a pump that would release a drug called Desferal into her system as she slept. The pump would be connected to the body by a needle inserted into Katie's thigh or abdomen. The drug would pick up iron and discharge it each time Katie urinated, a process called chelation. She would have to use it for the rest of her life, or until scientists came up with a better alternative. 
Current studies showed more than 40 percent of Diamond Blackfan patients undergoing transfusions died by their 40s, Lipton said, their internal organs worn down and eventually wiped out by the toll of the excess iron. 
Lipton wouldn't try the second option, oral steroids, which could trigger the body's ability to produce red blood cells, until Katie was at least a year old, because they also inhibit growth. Only 20 percent of Diamond Blackfan patients go into extended remission without needing any further treatment. Moreover, how long such a remission could last was anyone's guess. 
Even if Katie were one of those lucky ones, taking steroids would have long-term side effects that could include weight gain, <a href="/topics/High_Blood_Pressure">high blood pressure</a>, increased susceptibility to infection, glaucoma, cataracts, severe mood swings and premature osteoporosis, or weakening of her bones. Some patients on steroids have needed joint replacement surgery while only in their 20s. 
An option that could be a cure 
The final option was a bone marrow transplant from a sibling with exactly the same human leukocyte antigens as Katie. These antigens are, in effect, the secret password that tells the body's immune system not to attack. 
Every cell in a human body has a DNA code on it identifying it as a member of the club, so to speak. If another cell appears in the body that does not bear that identical pattern, the immune system treats it as a foreign invader. That's why bone marrow transplants using exact antigen matches are the most successful. 
Lipton then broached the idea that the Trebings consider having another child -- a specially selected child. 
But a bone marrow transplant from that new child would be a perilous procedure for Katie, Lipton cautioned. She would be isolated in a hospital room for at least a month while her body worked to accept the new bone marrow. She would be susceptible to disease for months; even a common cold could kill her. She'd be isolated even after returning home from the hospital; she'd have to take immune-suppressing drugs for almost a year. In the long run, she'd likely go through premature menopause and never have biological children. But she would have a greater than 90 percent chance of being cured. 
And what about their new child? 
Transplant from donor child 
After the birth of the donor sibling, the umbilical cord is saved. At the appropriate time, the cord blood is transplanted intravenously into the sick child to produce new, healthy bone marrow. In the best case scenario, the donor child isn't called upon again. But in cases where the cord blood isn't sufficient, the new baby's bone marrow would have to be removed from the hips and transplanted, a potentially painful procedure performed in an operating room under general anesthesia. 
Steve and Stacy worried most about whether removing a cell from an embryo would be harmful to the child that grew from it, causing unforeseen health problems in the future. The Trebings learned there was no way to definitively answer the question: preimplantation genetic diagnosis was only a little more than 14 years old, so the oldest people born from the process were younger than 18. On top of that, there was no official database they could consult to address their concerns. 
First donor child in 2000 
The stacking of the three procedures -- fertilization, diagnosis and then a bone marrow transplant -- was first done successfully in 2000, when a <a href="/topics/Denver">Denver</a> boy named Adam Nash was conceived as a match for his then 6-year-old sister, Molly. Molly had a more dangerous bone marrow failure syndrome than Katie -- Fanconi anemia -- and was close to death at the time of her transplant. 
The whole concept was mind blowing to Steve. All along, the Trebings, both 33, had wanted to have three children. But after Katie was diagnosed, they put that dream on hold. Now that third child could -- if everything came together perfectly, if one piece of the puzzle clicked into another -- cure their daughter. It felt to Steve like a gift. 
Having a 3rd child 
Steve and Stacy thought about it for months. Then they made their decision. 
"Every child is a miracle," was the way Stacy saw it. "This child would be a miracle just like my other two children are. The fact that this child would be a match for my daughter is just another miracle. So we would be doubly blessed." 
On each day leading up to Stacy's first attempt to get pregnant through in vitro fertilization, Stacy injects herself in the stomach with a hormone to stimulate her ovaries to mature far more than the normal one egg per menstrual cycle. 
At the end of the month, Steve and Stacy drive to the offices of Reproductive Specialists of <a href="/topics/New_York%2C_NY">New York</a> in <a href="/topics/Mineola%2C_NY">Mineola</a>. There, reproductive endocrinologist James Stelling sedates Stacy and surgically withdraws eggs from her ovary. The eggs are fertilized with Steve's sperm. 
But a glitch occurs. 
Stacy's ovaries, Stelling determines, have become hyper-stimulated by the hormones and need time to settle down before she can be impregnated. 
So Stelling freezes the embryos in his laboratory and the process stalls for a month. 
Katie's hospital ordeals 
While the embryos lie frozen, Katie has her 20th blood transfusion at Stony Brook. Her lips are trembling so much her binky is in danger of tumbling from her mouth. Her brown pigtails bob up and down as she squirms in Stacy's lap, first struggling to escape, then melting backward into her mother's chest. 
At 18 months old, Katie is too young for bravery. She's afraid of what's coming. She has a name for it: her "boo-boo." 
"Let's sing 'Barbara Ann,'" Stacy suggests to the two nurses who surround Katie in the pediatric hematology unit. They begin to warble the Beach Boys' classic. 
As the singing distracts Katie, nurse Pattie Losquadro -- whom Stacy has gratefully nicknamed "one-shot Pattie" -- inserts a needle into the crook of Katie's right elbow. 
"All done, all done," Stacy whispers to Katie. 
On each drive to the hospital, Stacy and Katie pass a playground. On this day, as Stacy saw all the children playing on the swings, she had the same thought she had on her earlier trips: "That's where we should be, instead of heading to the hospital." 
On this muggy June day, when thunderstorms are threatening, Katie settles down to spend most of the day in the hospital. After so many visits, Katie has mastered the secrets of a unit designed for sick children. She wriggles off Stacy's lap and walks to a gray metal file cabinet. She pulls open the second drawer from the bottom, where she knows there's a cache of Cheetos, Three Musketeers bars and Reese's Peanut Butter Cups. 
Katie's intravenous line is hooked to a rolling stand with a suspended bag of blood that is pumped over several hours into her body. Stacy's challenge is to keep her daughter -- who gets more and more energetic as the new blood revitalizes her -- entertained for hours. 
They play hide and seek with the nurses, Katie too young to realize that her rolling IV stand is a giveaway. Sometimes Stacy sits Katie on the box in the middle of the IV pole that measures the rate of blood flow, one leg on each side of the pole, and pushes her around the hematology unit as if the IV stand is a go-cart. They meander the hallways, counting the fish in the colorful pictures on the walls. 
In between transfusions, Katie seems like a healthy child. One sunny June evening she's playing in the backyard with Calvin and the Trebing's lumbering Saint Bernard, Hobbes. The yard is adjacent to where Stacy grew up. 
Stacy's grandparents bought all the land on her block in the 1950s, so now Stacy, her parents, her two sisters and her brother all own houses next to each other. It turned out to be a blessing to have family so close by to help baby-sit Calvin when Stacy has to take Katie to the hospital. 
Steve grew up on the South Shore, in North Babylon. His dad worked for NYNEX. Seven years ago, his parents bought a house on <a href="/topics/Fire_Island%2C_NY">Fire Island</a>, in Ocean Bay Park, and now Steve's dad is retired and Steve's parents split their time between North Babylon and the beach house. 
"Dad fishes, mom walks the beach," Steve says. 
Both sides of the family will need to pitch in as the next few years unfold. Steve owns a business that he started in 1994 putting up party tents for weddings at <a href="/topics/North_Fork%2C_NY">North Fork</a> wineries and political fundraisers in the Hamptons. During the peak summer season, he all but works around the clock. Stacy worked as a physical therapist until Calvin was born. 
Steve stands in the kitchen watching Katie play with Hobbes in the yard. He cups his hands on either side of his eyes as though wearing blinders. "We're doing it for her," he says, looking at his daughter. 
Stacy feels the same way. At the core of it all is their child. This plan might give her a normal life. 
"Although I'm not a very religious person," Stacy says, "I thought, 'Should I be doing this? It's new. It's controversial. There are people who think it's not the right thing to do.' Then I look at Katie."

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Newborn has rare blood disorder

Everything about the delivery at St. Catherine of Siena Medical Center in Smithtown had been normal. Steve Trebing was convinced he was about to have another son and was surprised when the obstetrician said the baby was a girl. The doctor immediately handed Katie to her mom, Stacy Trebing, and Katie eagerly breast-fed. 
After the 7:30 a.m. delivery, an ecstatic Steve went home to Nesconset to tell the couple's then 2-year-old son Calvin he had a sister. Stacy settled into her hospital room to rest before family and friends arrived to see the newest Trebing. 
Then worry arrived with a nurse. 
"Katie's blood tests are abnormal," she said. Specifically, the baby's hemoglobin count was low. This meant she was not getting enough oxygen into her bloodstream. 
In the nursery, Katie lay under an oxygen hood, her stomach heaving as she labored to breathe. 
Stacy called Steve and told him to please rush back. Rattled, Steve arrived in the hospital room just as the doctor said, "There's a problem." 
Three months and many medical tests later, Katie's parents learned their daughter had been born with a rare bone marrow disease called Diamond Blackfan anemia. Approximately 30 children are born with this disease each year in the United States and <a href="/topics/Canada">Canada</a>. 
Katie's bone marrow would never make the red blood cells that carry oxygen to the body's organs, keeping them alive. Every month, Katie would need a blood transfusion to supply her with someone else's red blood cells -- or she would die. 
Such transfusions carry a high cost. Month after month, year after year, iron builds up in the liver and heart, causing the organs to deteriorate. The toll could kill Katie by her 40s. 
A second treatment option, oral steroids, also poses serious side effects, including an increased risk of infections.

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A family's quest to cure their sick child

As the school year began last month, so did the debut of a new class at Wantagh High School: Bioethics. Biology teacher Ody Svolos wanted students to be able to explore developments in medical technology and question their uses. 
A five-day Newsday series last week on Katie Trebing of Nesconset provided a textbook look at cutting-edge technology and its intersection with ethics that played out in the students' own backyard, Svolos said. 
Each weekday at 12:30 p.m., 30 students from two of Svolos' classes, Advanced Placement Biology and Bioethics, logged on to Newsday.com to ask questions during live video chats. The series "The Match" detailed how Katie's parents, Steve and Stacy Trebing, had a third child, Christopher, who, through a bone marrow transplant, cured Katie's deadly bone marrow disease. 
"Just hearing about the concept of producing another life purposely was really cool," said Alana Jacobs, a 17-year-old senior in the bioethics class. "It's really cool to hear .people's opinions morally, religiously and ethically." 
 A slew of responses 
The chats drew hundreds of viewers overall during the week; chat guests included Steve and Stacy Trebing and Peter C. Williams, a bioethicist from the Stony Brook University School of Medicine. 
Along with responding to the live chats, approximately 200 e-mails were sent to the newspaper or the reporter. Many writers offered the Trebing family good luck. Some writers questioned whether what the Trebings did was wrong because, in the process of creating a third child who could cure Katie, the couple rejected excess embryos. Others expressed concern about Christopher, who was born with the task of helping his sister. 
A Rockville Centre father of three who is fighting brain cancer said the series buoyed his spirits and a Flushing mother of three offered Katie her own daughters' stored umbilical cord blood if the Trebings needed it. 
Among a number of phone calls to the Trebings' home was one from a <a href="/topics/Long_Island">Long Island</a> mother whose child died after a bone marrow transplant intended to cure Diamond Blackfan anemia, the same disease Katie was born with. 
 A family's saga 
Katie was diagnosed with the disease soon after her birth in 2002. The Trebings were given only one option to cure her: create the perfect donor matchup for Katie. 
The Trebings, who said they had always wanted another child, enlisted medical experts to help them have a baby who shared a certain portion of Katie's inherited DNA and could, once born, offer her a bone marrow transplant that would cure the disease. 
In 2004, Stacy Trebing underwent in vitro fertilization, with an extra step. When the embryos were three days old, an embryologist pulled one cell off each embryo. A geneticist tested each cell in a process called preimplantation genetic diagnosis to determine which embryos could provide Katie the match she needed. 
Christopher Trebing was born in May of 2005, and, one year later, in May of 2006, he gave bone marrow for his sister's transplant at Memorial Sloan-Kettering Cancer Center in <a href="/topics/Manhattan">Manhattan</a>. 
Last month, cured, Katie returned to preschool. 
 An inspiration to others 
One reader, Joseph Buckheit of Rockville Centre, said the series made him re.consider the way he thought about his cancer. Buckheit, 52, has had lung cancer and in June was diagnosed with brain cancer. He said he's awaiting word on whether he will have to undergo brain surgery. 
His goal, he said in an interview, is to help his three children, ages 17, 14, and 10, live normal lives as he deals with his cancer. That, he added, has been difficult. 
"I didn't handle it as well as I wanted to," he said in a telephone interview Friday. "I guess I was feeling sorry for myself." 
Then he read "The Match." "For me the article was a wake-up call," he said, meaning seeing someone else's medical troubles made him feel he could overcome his own. 
Buckheit also wrote to the Trebings: "If it is any comfort to you, please remember that your story has already helped one person -- me."

ny-entreb1007

Katie Trebing's story offers life lesson, inspiration

The Match: The Katie Trebing Story

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