Summer 2013 English 10H assignment

English 10 Honors

Summer Assignment

Summer 2013

Welcome to English 10 Honors,

In this class you will read many works of literature, both contemporary and classic, that will challenge you to contemplate human nature, right and wrong, and the way society influences behavior. Additionally, you will also read non-fiction pieces that further explicate these issues. In preparation for the year ahead, you will be reading and analyzing My Sister’s Keeper and a series of articles entitled The Match.

My Sister’s Keeper and The Match deal with the ethical issue raised by genetically engineered babies. Both deal with parents who choose to conceive a child to be a genetic match for an ill child. Both explore the idea of whether or not it is morally and/or ethically right to have a child with the intention that the child become a medical donor to a sibling.

Before you begin reading, answer the pre-reading questions. Then, read the novel. (You must read the novel first as many of the questions you will answer as you read the article require you to make connections to the novel.) After reading the novel, answer the literary analysis questions. Your responses should be thorough; they should be specific and include details and quotes from the novel to prove you have read the literature. In addition, they should be fully developed to demonstrate your ability to analyze literature. Once you are done with this part of the assignment, read the article. As you read, answer the questions in the margins. At the conclusion of each section, answer the analysis question thoroughly. After reading both the novel and the article, answer the final question.

You are expected to work independently; no part of this assignment is a group assignment, nor should you be consulting online resources. This assignment is due on the first day of school. Any student who does not come to class with this assignment on the first day of class is subject to removal from the class.

During the first week of school you will be using both the novel and the article to complete a writing assignment

Name _______________________________________________

English 10H

Summer Assignment

Pre-Reading Questions

1. Should a child be genetically engineered for a specific purpose, such as donating bone marrow to another?

2. How might being conceived for a specific reason or objective affect a child’s future and relationship with his or her family?

My Sister’s Keeper

After you read the novel, complete the literary analysis.

1. Characterization: For each character below, determine the character’s most significant trait, and support this trait with one quote and two details.

Sarah’s Trait: _______________________

Brian’s Trait: __________________________

Quote:

Quote:

Detail:

Detail:

Detail:

Detail:

Jesse’s Trait: _______________________

Kate’s Trait: __________________________

Quote:

Quote:

Detail:

Detail:

Detail:

Detail:

Anna’s Trait: _______________________

Quote:

Detail:

Detail:

2. The characters in the novel experience many conflicts that impact their lives and their relationships with each other. For each member of the Fitzgerald family, determine each character’s most significant conflict, and fully discuss the conflict by explaining the conflict, discussing how it affects the character, and providing a quote that reflects the conflict.

Sarah

Brian

Jesse

Kate

Anna

3. Theme: All works of literature contain themes. Think about the novel, and determine the most important theme in the novel. Explain this theme and support it with at least one quote and two details.

Theme:

Quote:

Detail:

Detail:

4. Setting: Sometimes the setting of a work of literature is very important, but sometimes the setting has very little effect on the plot. Think about the setting of the novel and answer the questions below.

What is the setting of the novel?

HIs the setting of the novel an important aspect of the storyline? Fully discuss your answer.

5. Narration: When an author writes, he or she must choose a narrator, and decide upon a first or third person narrator. Jodi Picoult uses alternating first person narrators, which is an unusual narrative technique. She uses several first person narrators—Anna, Campbell, Sara, Brian, Jesse, and Julia—to tell the story. Through this method the reader is able to hear the thoughts of many characters. Explore this narrative technique by answering the questions below.

How does the reader know from whose perspective each chapter is told?

Think about each character below and explain what each character’s perspective adds to the plot. In other words, what does the reader learn through this character’s voice that he or she would not know had the novel been told through one first person narrator, or a third person narrator?

Sara:

Campbell:

Anna:

Jesse:

Who is your favorite narrator? Why?

The Match

Beth Whitehouse

WITHIN HOURS of Kathleen Patricia Trebing's birth on Dec. 12, 2002, her parents' joy turned to worry.

Note: Quotes: "Going through this, I realized you cannot judge people until you walk in their shoes" - Stacy Trebing

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 Canada.

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.

There was a third option, one that could cure Katie's disease and offer her normal life: a bone marrow transplant from a sibling who had inherited a specific portion of DNA that exactly matched Katie's. Brother Calvin was immediately tested but was not a match.

So doctors offered the Trebings a final suggestion. On the cutting edge of genetics and medicine, where science raises hopes for frightened parents of ill children, was a possible way to provide Katie with a perfect sibling match: Have another baby.

The conception of this new baby could not be left to chance, though, because the natural odds are that only one in four of the Trebings' offspring would be an exact match for Katie.

Stacy would have to undergo in vitro fertilization (IVF) to produce numerous embryos to choose from, increasing the odds of a match. Then there would be another step. Scientists would pull one cell off of each embryo and use a test called preimplantation genetic diagnosis (PGD) to find that perfect match. Only those embryos would be implanted in Stacy's uterus.

This baby would be a "donor sibling," or, to some, a "savior sibling."

Joining the three procedures - fertilization, diagnosis and a bone-marrow transplant - was first done successfully in 2000. Only 100 to 200 PGD donor children exist in the world.

A bone-marrow transplant from this child would give Katie a greater than 90 percent chance of being cured.

But if the process failed, Katie could die.

As with many new reproductive technologies, moral, ethical and medical questions abound – for families and society.

"It's easy to say someone donated bone marrow or a kidney to a sibling and generally feels pretty good about themselves. But some people think it gets a little presumptuous to say, 'You should be born for this purpose,'" said Dr. Jeffrey Lipton, chief of pediatric hematology/oncology and stem cell transplantation at Schneider Children's Hospital in New Hyde Park. "This is an enormously complex ethical issue in our field. This is the topic of the next decade, and it needs to be looked at critically."

British medical authorities approve the process on a case-by-case basis. In the United States, there is no government oversight of such births. And no one in this country monitors what happens to the donor sibling after the child is born.

What becomes of healthy embryos that don't match the sick sibling?

What if the sick sibling again needs help from an exact match donor in the future?

And, with parents now able to select an embryo based on DNA traits, will doctors one day select for the tallest or smartest child?

The Trebings weighed the ethical issues.

"Going through this I realized you cannot judge people unless you walk in their shoes," Stacy said. "Never in a million years would I have thought that I would have IVF and pick an embryo out as a match for my daughter."

Who are the members of the Trebing family?

Underline the name of Katie’s medical condition.

Why does the third option hold the most promise?

(Analysis QuestionWhat similarities do you see between the Trebing’s situation and the Fitzgerald’s? )

"There's a problem." Stacy makes a promise to her newborn

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 University Medical Center 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 whether 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."

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 Stony Brook University Medical Center.

A scribbled note from the doctor read: "Suggest follow up CBC." The acronym referred to "complete blood count."

The next day, Stacy took Katie to her pediatrician, Keith Ancona in Smithtown, 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.

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 Children's Hospital Boston, Louis Diamond and Kenneth Blackfan, documented the disease in 1938. The Trebings learned how rare it is - probably fewer than 1,000 people in North America 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 New Hyde Park.

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, high blood pressure, 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.

Another possibility

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 Denver 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.

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 New York in Mineola. 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 back yard with Calvin and the Trebing's lumbering St. 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.

Helping with family

Steve grew up on the South Shore, in North Babylon. His dad worked for NYNEX. Seven years ago, his parents bought a house on Fire Island, 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 North Fork 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."

THE DISEASE

Diamond Blackfan anemia was documented in 1938.

THE NUMBERS

There are only 100 to 200 PGD donor children in the world.

THE FIRST TIME

The stacking of the three procedures - in vitro fertilization, PGD and then a bone

marrow transplant - was first done successfully in 2000.

(Analysis Question What differences do you see in the Trebing’s thoughts as they contemplate and decide to have a donor baby as compared to the Fitzgerald’s’? )

How did Katie differ from the others babies in NICU?

What hadn’t Stacy been informed she needed to do?

Underline the sentence that reveals how Stacy felt after the second blood test.

Do you think Dr. Ancona was right not to tell Stacy what he suspected?

What facts do we learn about this disease?

Underline the long-term side effects.

Why is this option potentially the best option?

Why would this be a “perilous procedure” for Katie?

What was the Trebings’ greatest fear?

Explain what is mean by, “It felt to Steve like a gift.”

What two miracles does Stacy see in the new baby?

Searching for a perfect match

At 6:15 a.m. on June 21, 2004, embryologist Wayne Caswell is riding west on the Long Island Expressway on his Kawasaki motorcycle. At the office of Reproductive Specialists of New York in Mineola, nine embryos are waiting for him in a petri dish the size of the top of a soda can. These embryos were created from eggs removed from Stacy Trebing's ovaries and fertilized with husband Steve's sperm.

At the laboratory, Caswell trades his leather jacket for blue scrubs. The hands that this morning tossed laundry into the dryer at home will now operate on embryos so small they can't be seen by the human eye.

Appropriately, Caswell's lab is stenciled with a playful ceiling border of sperm chasing an egg. The nine Trebing embryos are in an incubator that resembles a hotel room mini refrigerator. Caswell uses a tool that works like a miniature turkey baster to pick up embryo No. 1.

He transfers it to an individual dish and places it under a microscope. Through the lens, the eight-cell embryo looks like a soccer ball. It has a membrane, as if wrapped in plastic wrap. Caswell shoots a low intensity laser to burn a hole in the lining. Only then can he steal what he's after.

One cell.

Scientists know an embryo can survive the loss of one cell. During routine in vitro fertilization, embryos are often frozen for future use. One or two cells may die in the thawing process, but a fully formed human being can still grow. Nature also causes some embryos to divide in two, forming identical twins.

Caswell can't talk while working - because he literally uses his breath to blow and suck the cell off the embryo. He now uses two pipettes - one to steady the embryo and the other to manipulate it. With his left hand holding the pipette to the embryo, the second pipette goes in his mouth like a straw.

Extracting cell from embryo

In a laboratory filled with sophisticated equipment, Caswell uses a low-tech process that's much like sipping a cocktail through a straw. He blows or sucks, easing the cell off the embryo. As he does, the cell stretches like a water balloon - first round, then oval, until it breaks free from the others and returns to a circle.

When he gets to embryo No. 4, Caswell notes its beauty: evenly sized, good symmetry. On the other hand, embryo No. 8 is severely abnormal - it has advanced to only two cells. Such embryos would be unlikely to survive on their own.

"I can't biopsy this embryo," Caswell says. "We didn't cause that. It's just inherent in the egg. Many patients think you've retrieved this amount of eggs, I should have this number of babies available. We're doing things to screen. We're doing things to select. But we're not doing things to fix."

Of the nine embryos, Caswell is able to remove a single cell off of seven for testing.

"Seven's not a bad number," he says.

Finding a match for Katie

The cells are deep frozen in tubes and put into a cooler to be loaded onto a routine flight at Kennedy Airport and flown to geneticist Mark Hughes at the Genesis Genetics Institute in Detroit. Hughes has been preparing for the cells' arrival for weeks, examining Steve's, Stacy's and Katie's DNA to make sure he can match the embryos correctly. Once the cells get to him, Hughes and his team will spend the next 19 hours performing preimplantation genetic diagnosis (PGD) to determine which of the seven cells are an exact human leukocyte antigen match for Katie. Those antigens are a code in the DNA that tells the body's immune system that other cells belong and are not foreign invaders. Having matching antigens would allow Katie's body to accept a sibling's bone marrow.

Two days after the embryos arrive in Detroit, Stacy is anxious, but excited. At noon, she is scheduled to have embryos that match Katie implanted into her uterus. Stacy had a dream last night that, of the seven embryos tested, one was viable. It was implanted and she got pregnant with a girl.

Steve won't be going with Stacy for the implantation. It's the height of the season for his party tent business and he's already scheduled to take a week off in July to go with the family to Camp Sunshine on the coast of Maine. The camp is for families with children who have life-threatening diseases, devoting a week, for instance, to leukemia and another to Diamond Blackfan anemia.

With the emotional boost of her dream, Stacy feels the day holds promise. On Father's Day the previous weekend, Steve's Aunt Kathy gave Stacy a candle with an angel on it. Hoping for the best, she and Steve lit it last night. As Stacy heads to Mineola, she knows only seven embryos were tested and the odds are one in four will be an exact match for Katie. That's disappointing to the Trebings, because 19 eggs had been harvested and 14 had fertilized into embryos immediately. The Trebings were surprised to learn that in the end they only had seven from which to choose. Dr. James Stelling, who heads the PGD division of Reproductive Specialists of New York, explained to them that this kind of attrition is normal and it's one reason doctors stimulate women's ovaries to mature multiple eggs in a cycle.

When Stacy arrives, she learns that the results aren't complete yet. They will wait another day.

In medical school at Stony Brook University, Stelling was one of the few people in his class who knew he wanted to become a fertility doctor.

Before he had his own three children, he might have balked at what the Trebings are doing. But the worry over an ill child hit home when one of his children was born with glaucoma that threatened her vision and required 16 operations. He knows the agony of wanting to heal your child.

"If you asked me 10 years ago if I thought it was a good idea to genetically test embryos to see if one was a bone marrow match for a current child, I would have considered it an ethical debate," he says. "Because you're creating life to serve a purpose outside of just being a baby. Now that I have kids, I wouldn't debate it at all. I would do it in a second. I would do whatever I could."

Embryos tested for disease

Hughes tested the embryos for Diamond Blackfan anemia in his Detroit laboratory, and none of them has the disease.

One of a geneticist's worst fears is to tell parents an embryo is disease free and later find out it's not.

These results confirm Katie's disease is a spontaneous mutation, a random occurrence that didn't come from either parent.

This meant any future children they had wouldn't have an inherited risk of Diamond Blackfan anemia.

Hughes wanted to ensure the Trebings weren't so-called gonadal carriers, who have the mutation in their reproductive organs instead of their DNA.

As far as the delay in getting the results of the antigen match from Detroit, Stelling's attitude is no news is good news. But Stacy's worried.

"Will waiting another day affect the viability of the embryos?" she asks.

"Only if they start to hatch," Stelling says. This is when the embryo lining breaks open completely so the cells can multiply more rapidly. "I'd rather it hatch in you, where it's used to hatching."

If the embryo hatches outside the body, doctors worry about it forming twins.

The more days that pass before the embryos are implanted, the more they weaken.

After too many days, the embryos will try to attach to the petri dish, sensing it is a uterus. Eventually, they will perish. Also, Stacy's uterus is expecting an embryo. If one doesn't arrive, she will menstruate.

Just one is a match

The next morning, Stacy's back. Only one embryo of the seven is a match for Katie, but it isn't one of the thriving ones.

"We're going to implant that embryo and give it a chance," Stelling says.

Caswell joins Stelling at Stacy's bedside. "It hasn't really grown," he says of the matching embryo. "That's not great, but it has a chance."

Stacy tries to pin a number on it. "Ten percent chance?"

"Yeah," Caswell says. "It may do better in the uterus than it does in the lab. It's worth a transfer."

Stacy's disappointed and she calls Steve, who's in the Hamptons putting up a tent for a graduation party.

"There's only one match and it's not a good one, but they're putting it in anyway," Stacy says, her eyes tearing.

"All we need is one," Steve says.

When Stacy is back in bed, Stelling sits down beside her. "Three embryos are growing well today," he says. "But they're not the match. Do you want me to freeze them?"

"No," Stacy says. "Dr. Hughes talked about donating them to research."

Later, the embryos were found to have deteriorated too much to be donated to research and had to be discarded.

In the procedure room, Stelling inserts a catheter into Stacy's uterus. Embryologist Michael Perretti slides the embryo down it like a ball down a tube. They wait 30 seconds for it to settle.

"See that whiter spot right about there?" Stelling tells Stacy, directing her attention to the ultrasound screen. "That's the fluid that has the embryo."

"I think I can, I think I can," Stacy chants.

It's 9 p.m. a few days later, and after Steve and Stacy put Calvin and Katie to bed,

Stacy lays out a hypodermic needle on the kitchen counter and retrieves an ice cube from the freezer.

Steve ices her lower back below the waist to help numb the coming pain.

Stacy must now endure 10 weeks of shots to her buttocks. Steve jabs Stacy with a long, thick needle filled with hormones to help the body nourish a pregnancy. Stacy feels reassured that Steve plays on a dart team in East Islip. Transferrable skills, she jokes.

In early July, the Trebings learn Stacy isn't pregnant. The weak embryo didn't take.

They would have to start all over again.

Message from a parent

Undeterred, they head to Camp Sunshine.

Because Diamond Blackfan is so rare, this will be the first time the Trebings will speak in person to other parents who have been through the same medical and emotional roller coaster.

Approximately 40 Diamond Blackfan anemia families from across the country attend the camp.

While the children spend the day at supervised activities such as swimming, baseball and arts and crafts, parents attend lectures on the latest treatment and research.

It's at one of those sessions that Stacy and Steve are handed a five-page letter written by the mother of a 12-year-old Diamond Blackfan patient who had attended camp two years earlier.

On the top, in capital letters, is typed: "THINK TWICE BEFORE HAVING A BONE MARROW TRANSPLANT."

Just reading the first paragraph sickens Stacy. By the end of the letter, she's sobbing.

"Our son, Keir Zangrando, had been transfusion dependent with Diamond Blackfan anemia since he was 5 1/2 weeks old," began Wendy Zangrando of Ohio. "He died on Wednesday, November 19th, 2003, of complications stemming from a bone-marrow transplant that was supposed to have cured him. He was 12 years old."

Boy's sister was a match

The letter explained Keir had been lucky enough to have an exact-match sibling - his sister, Emma. Emma wasn't an IVF/PGD baby - the Zangrando's second and only other child turned out to be a match for her brother.

When Keir was 10, in the summer of 2002, the Zangrandos attended Camp Sunshine. There, doctors encouraged them to do a bone marrow transplant on Keir before he got much older, because the younger the child, the better the odds of survival.

Keir entered Cincinnati Children's Hospital Medical Center in August, 2003, for the transplant.

While there, he developed veno-occlusive disease, which can be caused by the chemotherapy drug busulfan, a drug Katie also would get if she had a bone marrow transplant.

Veno-occlusive disease causes clotting in the veins of the liver, all but shutting it down.

Another drug, defibrotide, which had yet to be approved by the federal Food and Drug Administration, might have been able to treat the disease, but it was only available at a small number of hospitals participating in a study of its safety and efficacy. Children's Hospital wasn't one of them, Wendy Zangrando wrote.

While he seemed to recover, Keir quickly got an infection followed by pneumonia. He soon became so sick that only medications were keeping him alive.

"Finally, on November 19th, we had them stop giving him epinephrine and dopamine, the two drugs that were helping keep him alive by keeping his blood pressure normal," Keir's mother wrote. "We spend a lot of time second-guessing ourselves. Before all this, Keir was very healthy and hardly ever got sick, not even a cold, so we feel what happened to him was really radical.

"I think because DBA is so rare, and there aren't many sibling donors, there just aren't enough DBA patients having bone-marrow transplants for there to be reliable statistics . . . If the bone-marrow transplant had worked, we'd be telling everyone to do it. But this is our story."

Before leaving camp, every word of the letter on their minds, Stacy and Steve make a decision: they will continue to try for a third child who could be Katie's donor. They could decide later whether to go through with the bone marrow transplant.

In mid-August, back to square one, Stacy and Steve head to Stelling's office for another egg retrieval.

Steve is exhausted. Days before, his company pitched tents for a $25,000-a-plate fundraiser for presidential candidate John Kerry in the Hamptons at the home of Darren Star, the producer of "Sex and the City." He is asleep when Stelling tells Stacy he was able to retrieve 28 eggs. When Steve's sperm is mixed with the eggs, 23 fertilize.

The day of the biopsy of this group of embryos falls on Aug. 21. But Caswell, who was to remove the cells for shipment to Detroit, is in the hospital with gastrointestinal problems. And embryologist Perretti has his son's birthday party.

The embryos can't wait.

So Stelling brings in an embryologist from Maryland, who retrieves 22 cells from the 23 embryos and sends them to Hughes for testing - three times more than the first round. Of the 22, 15 are found to be good enough to be tested as matches for Katie. Of those 15, eight are growing well enough in the lab to be implanted, if the testing in Detroit shows they are matches.

But only two match, numbers 19 and 21. Stelling implants both.

"Black jack," Steve says.

Amid all this activity, there is still Katie's health to worry about.

By now, Katie is 18 months old and she's had 23 blood transfusions.

Each one is only a temporary fix to counter the Diamond Blackfan anemia - each transfusion depletes itself in three to four weeks.

Doctors decide to try the second Diamond Blackfan treatment option on Katie - liquid steroids taken orally - to see whether that could spur her body to generate red blood cells and eliminate the need for transfusions.

Very soon, side effects of the steroids cause Katie to be cranky and hungry. Dr. Jeffrey Lipton, Katie's Diamond Blackfan doctor at Schneider Children's Hospital in New Hyde Park, had predicted Katie would demand hot dogs at seven in the morning and Cheerios at eight at night, and that her weight would quickly increase by 20 percent.

On top of these changes, follow-up blood tests at Stony Brook University Medical Center show Katie's hemoglobin has changed only slightly, meaning the steroids aren't

doing much.

The doctors had hoped for what is called a reticulocyte count - or retic count - increase of up to 4 percent. Katie's didn't even approach .05. A retic count is a way of measuring increased production of young red blood cells.

Rapid iron buildup

That news was bad enough. But another setback comes out of nowhere: iron appears to be building up very rapidly in Katie's liver.

On earlier monitoring tests, Katie's ferritin level, a measure of the body's total iron content, had been approximately 1,000, still not alarmingly high. Normal for someone Katie's age is under 400. This time Katie's ferritin is 4,471. Lipton had been talking about starting Katie on the drug Desferal, which would pull some iron out of her system and allow her to get rid of it when she urinated, the process called chelation. He starts Katie on the drug immediately.

On Aug. 30, a nurse comes to the Trebings' house to show them how to use the Desferal pump, which is about the size of an eyeglass case. Katie will need to be on the pump 10 hours a night, five days a week.

It's evening, so Steve and Stacy wake Katie. The pump's needle is inserted into her thigh and she screams.

Looking for some measure of hope the future might be different from the present, Stacy takes a home pregnancy test.

It responds with a very faint line.

Stacy takes Katie and older brother Calvin with her to Stelling's office for her official pregnancy blood test.

"Did you cheat?" the nurse asks.

"Yes! Two nights ago. It was pretty faint."

"I really think it's going to be positive," the nurse says as she draws Stacy's blood.

By 11:30 a.m., Stacy can't bear the waiting anymore. She calls Stelling's office for the results.

"We did it!" the nurse says

"Woo-hoo!" Stacy yelps. She calls Steve at his office.

"You're going to be a daddy again," she says.

But Stacy has to take a follow-up blood test in two days, to make sure the pregnancy is progressing normally. After that test, she meets Steve and their kids at Steve's parents' beach house on Fire Island. Steve is nervous about the test results.

Stacy tells him she doesn't know them yet. Steve heads to the beach to swim, but an uneasy Stacy calls Stelling's office, only to be told her pregnancy hormone levels haven't doubled as they should have.

Stacy goes out to the beach and breaks the news to Steve. This is the nightmare he's been worrying about - that Stacy might miscarry.

"It better stay," he says. He leans down and kisses Stacy's stomach. "Come on, baby," he urges.

The next week, Stacy's hormones have rebounded. In fact, doctors briefly think both embryos might have taken and produced twins. But follow-up ultrasounds show Stacy is pregnant with one baby.

By late September, Stacy has come to hate steroids, which Katie has been taking for six weeks. She feels she's poisoning her daughter. Calvin doesn't understand why his sister is hitting and biting him. Stacy knows strangers see Katie's chubby face as she's giving her daughter another ice pop, and she's certain they're thinking, "You shouldn't be feeding this kid."

While Katie waits to see Dr. Lisa Mueller, her hematologist at Stony Brook, she's eating chicken nuggets from McDonald's. She weighs 28 pounds, six pounds more than she weighed five weeks ago when she began taking steroids. Normally, she would have gained half a pound in that period. She is now in the 50th percentile in height for her age and in the 75th percentile for weight.

"She's going to blow up," Stacy jokes, and indeed Katie looks like her skin is a dress that's two sizes too small.

"Hey Katie bug," Mueller says as she enters the exam room. Right away, Stacy wants to know the plan for taking Katie off steroids.

But Mueller doesn't want to wean her yet. There is still time for it to kick in, she says."I know you don't have hope," she says. "But I still hope she'll respond." Mueller orders Katie's blood tested again. Katie is already crying in anticipation.

Instead of her usual rendition of "Barbara Ann," Stacy sings, "Who Let the Dogs Out?" to distract Katie from the prick of the needle.

Stacy again steers the conversation toward weaning Katie.

"I know you don't like my plan," Mueller insists. "But I think that we should try. It's only two more weeks of suffering."

Stacy has to wait for the retic count before she and Katie can go home. When she hears it - just .1, still practically non-existent - it's the final straw.

"What's this doing? Really? Really?" Stacy says. She is uncustomarily agitated and belligerent. "I hate this drug. It's a terrible drug. I don't want to be six months down the road saying we didn't really give it a shot, but I really don't think it's doing anything. I don't care what she looks like. It's how she feels. It's all right that she looks like a balloon. I'm sorry, I don't mean to give you a hard time. But they're not doing anything.

She's miserable."

Mueller sticks to her guns; she'd rather see Katie respond to steroids than put her life at risk during a bone marrow transplant. She doesn't say what's in her mind: "When Katie's lying in the hospital having a bone-marrow transplant and is potentially fighting a life-threatening infection, I want to know I did everything I could."

Katie is taken off steroids

That night, Stacy and Steve decide to wean Katie off steroids. Feeling guilty, Stacy e-mails Katie's Diamond Blackfan doctor, Jeffrey Lipton, for his opinion. He e-mails her back that in all likelihood, if Katie hasn't responded yet, she probably won't.

But now, with steroids off the table, it's either back to monthly blood transfusions - or moving ahead to a future bone marrow transplant from the new baby.

After her next appointment at Reproductive Specialists of New York, Stacy learns from one of Stelling's partners, Dr. Kristen Cain, that the baby is growing normally and she can go on to her regular obstetrician for the remainder of her pregnancy. Stacy pulls the doctor into a hug. Tears drip down her face.

"How do you thank someone for giving you a child to save your other child?" she says.

From how many embryos is Dr. Caswell able to remove a cell?

Underline how many hours it will take to test the cells.

Underline the sentence that reveals Stacy’s hopeful spirit.

What caused Dr. Stelling to change his mind about genetically engineering a baby?

What do the test results mean for the Trebings?

What concerns do doctors have when an embryo starts to hatch outside of the uterus?

What is your opinion about the Trebings decision to donate the embryos to research?

Underline the Trebing’s decision.

In the end, how many matching embryos are implanted?

How well do the steroids work?

What do Stacy and Dr. Mueller debate?

What is the Trebing’s final decision?

(Analysis QuestionHow does reading about the Trebing’s experience trying to conceive a child give new perspective to what the Fitzgeralds went through? )

"It's a boy!'

At 5 p.m. on May 4, 2005, Christopher Thomas Trebing - at nine pounds, one ounce, the biggest of the three Trebing children - enters the world at St. Catherine of Siena Medical Center in Smithtown.

"Do you want to cut the umbilical cord?" obstetrician Brian McKenna asks Steve.

"No," Steve answers, too afraid to do anything that might diminish the collection of the cord blood.

McKenna snips it. He holds the severed cord and extracts its blood - the life force they all hope will conquer Katie's Diamond Blackfan anemia. It fills a heavy plastic collection bag.

"This is great!" McKenna says. "You're going to have a big bag. One of the biggest collections I've ever seen."

The bag goes into a box lined with bubble wrap to be picked up by a medical courier and shipped to Viacord, a storage facility in Kentucky, until the Trebings decide whether Katie will have a bone marrow transplant.

Steve is leery about the health of his newborn son. After what he and Stacy went through at Katie's birth, an easy delivery seems too good to be true. He wants proof Christopher doesn't have Diamond Blackfan anemia, like his older sister. He wants doctors to draw Christopher's blood and check it. Stacy talks him out of it.

Family time with new baby

"Prince Christopher," an elated Stacy says later of her new son. "Cal moves up to King."

Katie, now 2 1/2, and Calvin, now 5, meet their new brother in his hospital layette.

Other members of Stacy's and Steve's extended families arrive; nurses come in and say, "We want to see the miracle baby."

For the first few months after Christopher's birth, the Trebings focus on being a happy family of five. Stacy feels the instant bond she'd felt with Calvin and Katie; she melts when Christopher looks at her. Everything that came before to orchestrate Christopher's birth, all the effort, all the medicine, all the science, all seems moot.

Christopher gets so big so fast that Steve and Stacy nickname him "Bubba." He seems to cry only when hungry and even that is more whimper than demand. There are no nights spent pacing the hallways holding an inconsolable, wailing infant, as there were with Calvin and Katie. Stacy fantasizes about having a fourth child.

Doctor urges transplant

Four months after Christopher's birth, Stacy and Steve take Katie to her regular appointment with Jeffrey Lipton, her Diamond Blackfan anemia doctor at Schneider Children's Hospital in New Hyde Park. By now, Katie's had more than 30 blood transfusions and can't go more than a month without one; she sees Lipton every six months to monitor her overall progress. At this visit, Lipton nudges the parents to again focus on her treatment options. They need to make a decision about a bone marrow transplant.

He reminds them Katie's continuing blood transfusions are only a stop-gap. A transplant is the best choice to give her the most normal life, he says.

It's time to act.

"If you ask me who is going to be alive in six months, the child with a transplant or a child with a transfusion, the answer would be the child with transfusions," Lipton tells them.

"But," he adds ominously, "if you ask me who will be alive in 30 years, the likelihood would be the child with the transplant."

He mentions a study that sobers the Trebings: only 57 percent of transfusion-dependent Diamond Blackfan patients are alive at 40.

"If she were my granddaughter, I would encourage my son and his wife to do the transplant," Lipton tells them.

Confronting their fears

Still, the Trebings are leaning against it. They are terrified Katie could die from transplant complications. Of every 10 children receiving a bone marrow transplant from a matched sibling, one child probably won't survive. On top of that, Katie's pediatrician, Richard Ancona, is more conservative about a transplant.

"I would just leave her alone," Ancona tells Stacy at one of Katie's checkups.

"Why?" Stacy asks.

"Because I think there is going to be something else that can help her in the future," Ancona says.

Then there is Jack, the young son of the Trebings' friends Pete and Jen McBride of Lake Grove.

He has leukemia and is undergoing a bone marrow transplant from a donor matched from the general population. Stacy and Steve are learning how sick chemotherapy makes a child. Chemo is the first round of a transplant and, in Katie's case, would obliterate her Diamond Blackfan-tainted marrow. In the process, it also would wipe out her immune system, making her so weak the sniffles could kill her.

Parent's letter on their mind

Steve and Stacy have been using the Camp Sunshine letter from Wendy Zangrando as a guide in their research.

The letter could not be more blunt: Wendy Zangrando, whose son Keir died while still in the hospital after a bone marrow transplant, warns other parents about possible pitfalls in the transplant process. Steve has scrutinized every word in the letter, and his penciled notes mark up the margins. He brings it with him to Katie's doctor appointments.

His notations remind him to ask the doctors about getting Katie a liver biopsy to make sure her liver can withstand the transplant protocol, something the Zangrandos regret they didn't do with their son.

Steve makes a note to research whether the transplant hospital would have access to the drug that fights veno-occlusive disease, which contributed to Keir Zangrando's death. The Trebings want to be sure that whatever hospital they choose has access to it. Schneider Children's Hospital, where Lipton practices, for instance, doesn't.

Considering the 'what-ifs'

The Trebings must decide whether to jeopardize their daughter's life to save it. They go back and forth, back and forth. One day, they are sure they will do it. The next day, they waiver.

Lying awake at night, Stacy wonders, "How can I put Katie through this?" But, in her gut, it feels like the right thing.

She knows she and Steve shouldn't drag out a decision - the more time passes, the more transfusions Katie will need and the more damaged her liver will be.

If they don't do the bone marrow transplant, what if Katie winds up needing a liver transplant? As Stacy reasons, Katie is largely healthy now, her body strong and thus better able to tolerate the whole ordeal.

Steve wants more information, something he can hang onto that would force him to decide this is transplant time. Even though it would be bad, he hopes Katie's iron counts climb higher, because that threat would make him feel he has no choice but to proceed.

The temptation to avoid the transplant is enormous. But Steve knows that the best success rate, Katie's best odds, are now to do the transplant.

"Do it today to save tomorrow," he urges himself.

On a blustery Veteran's Day, Stacy and Steve drive into Manhattan to meet with Farid Boulad, associate attending pediatrician of the Bone Marrow Transplant Service at Memorial Sloan-Kettering Cancer Center. Katie's disease is not cancer - but Sloan-Kettering also handles non-malignant blood disorders.

The Trebings' insurance provider has given them permission to explore four locations for Katie's possible transplant and they've already been to Schneider Children's Hospital and Children's Hospital Boston.

They'll decide whether to visit Cincinnati Children's Hospital Medical Center, where Keir Zangrando had his transplant, after today's meeting.

The pediatric waiting area at Sloan-Kettering mimics a theme park.

Multi-colored chairs are filled with children, many with surgical masks dotted with pictures of Donald Duck, many of them missing their hair.

A tank is filled with tropical fish, a figure of SpongeBob on the bottom. A waist-high wooden apple sits near the check-in counter, painted in primary colors. A playroom is filled with toy trucks, games such as Chutes and Ladders, and tables for arts and crafts.

Apprised of transplant risks

The Trebings are called in for their consultation with Boulad, a bear of a man, more Teddy than Grizzly.

He launches into an overview of treatment options, which the Trebings have heard from Lipton and know word for word.

Boulad is blunt about what Katie would face during the six-week, in-hospital portion of the regimen:

For the first 10 days, Katie would have chemotherapy drugs to prepare her for transplant day, which the hospital calls "Day Zero." The chemo would cause disconcerting but short-term side effects such as Katie's hair falling out. It also could cause more permanent problems such as infertility. The chemo could destroy her ovaries. It also would temporarily obliterate her immune system.

On Day Zero, Christopher's cord blood would be run through an intravenous line in Katie's chest. The transplant itself would be anticlimactic for Katie; she'd be awake and wouldn't feel anything. But if Christopher's collected cord blood wasn't sufficient doctors would have to use Christopher's bone marrow instead. He would come into the hospital on Day Zero. He would be put under general anesthesia and bone marrow would be extracted from both his hips with needles. Later the same day, his marrow itself, which looks like blood, would be dripped into Katie.

For 15 days after the transplant day, Katie would be confined to her hospital room. Stacy and Steve could spend the day, and one parent could stay overnight. Katie couldn't have visitors, and anyone who did enter her room, including Stacy, Steve and hospital staff members, would have to don gowns, masks and gloves. The parent staying overnight would sleep in them. At this stage, an infection could kill Katie.

Katie would get painful mouth sores and most likely have to be fed intravenously because she would be too uncomfortable to eat. She could get fevers and need antibiotics. She could have diarrhea and nausea.

A host of threats could plague Katie up until she left the hospital:

Graft rejection. Katie's body rejects her brother's marrow, even though it is an exact match to hers.

Fatal infection.

Organ poisoning. The chemo drugs could be toxic to Katie's lungs, heart, liver or kidneys, causing any or all to shut down.

Veno-occlusive disease, which shuts down the liver and contributed to the death of Keir Zangrando, the Ohio boy who also had Diamond Blackfan and a transplant.

Sloan-Kettering, however, does have access to the experimental drug to help fight veno-occlusive disease, called defibrotide, which was not available to Keir.

Katie also could develop complications such as acute graft versus host disease, in which Christopher's bone marrow attacks Katie's body, potentially setting off a number of health problems. These can include skin rashes, stomach problems and liver issues.

If severe, it can be fatal.

Hearing all this, Steve remains on the fence.

"He wants someone to say, 'You have to do it,'" Stacy says to Boulad.

"Nobody's going to say that," Boulad says. "I can tell you one other thing: If you go later, the transplant is more difficult than it is now."

A catch-22. If parents wait for developments that convince them a transplant is mandatory, those very developments make transplant more dangerous.

Keeping Katie transfusion dependent isn't a perfect option, either, Boulad reminds them. "Transfusion is far from being 100 percent safe," he says. "We as physicians cannot make a decision for you. We can make a recommendation, and the recommendation is to go to transplant."

"When is the best time to do this?" Stacy asks.

"Between March and October," Boulad replies, adding that the hospital doesn't do elective transplants in the winter because of respiratory viruses.

"What age would you recommend for her?" Stacy asks.

"The answer is, there is no right answer. Or there are several right answers. Definitely less than 5 years of age. If you look at all the patients transplanted, regardless of disease, in patients less than 5 years old, the incidence of graft versus host disease is significantly less."

But he cautions about a child being too young, because metabolism hasn't matured, which can make drugs more toxic.

"She's 3," Stacy says. "So it could be this year or next year."

Boulad focuses on the issue of Christopher's cord blood.

In leukemia patients, cord blood has worked more effectively than in children with diseases such as Diamond Blackfan, Boulad says.

Katie's T-cells, which fight foreign invaders, need to be wiped out by chemo before a transplant, Boulad explains. With umbilical cord blood, T-cells are less mature. In theory, Katie's T-cells, though severely eroded by chemo, might still be strong enough to overpower Christopher's cord T-cells. So Boulad might want to use Christopher's bone marrow instead.

"How old does Christopher have to be?" Stacy asks. "He's six months."

"The youngest donor I've collected marrow from was four months," Boulad says.

"Hopefully you wouldn't have to poke him so many times?" Stacy asks.

"The kids bounce back within 12 hours," Boulad says. "They're playing tag and running around. Adults walk around like this for two weeks." Boulad puts his hands on the back of his hips as though they ache.

Boulad brings up one more point to consider. Like so many things before, it's jaw dropping: Have a doctor remove one of Katie's ovaries now to freeze it for possible future use.

The room goes silent. They are talking about life - first Katie's, then preserving a part of her that could allow her to have a biological child. Cure one generation, save the next one.

Boulad explains doctors would remove one laparoscopically, through the belly button, at the same surgery when they do her pre-transplant liver biopsy.

Trebings weigh options

After the meeting, Steve and Stacy walk to the elevator, lost in thought. "We have to ultimately both end up at 100 percent in favor of a transplant," Steve says.

"I don't know if I can get to 100 percent," Stacy says. She's at 85 now.

"Me, too," Steve says.

"I like this place a lot. I can sleep with her," Stacy says. Some other transplant units won't allow a parent to stay overnight and that would be awful for Katie, who still frequently climbs into bed with Stacy and Steve in the middle of the night. "Part of me wants to just do it this March and get it done. Part of me wants to wait."

"What are you really waiting for?" Steve asks. "You're waiting for something else bad to happen?"

"If we do it now, she won't remember it as much," Stacy says. "The longer we wait, the

more she'll remember it. Do you still want to go to Cincinnati? I don't think it's necessary."

"I don't either," Steve says. Over the next few weeks there will be no lightning bolt moment when the Trebings decide, "We have to do this." The pendulum merely swings in the direction of going ahead with the transplant and stays there.

On Dec. 12, 2005, Katie and her family and friends celebrate her third birthday at The Palace in Smithtown. The children dress as princesses and pirates and break a piñata. Everyone sings "Happy Birthday," and Katie makes a wish in front of a candle on a cupcake decorated with pink fluffy frosting.

New Year's e-mail

Christmas comes and goes. On New Year's Eve, while Steve and the three children sleep and the clock nears midnight, Stacy sits at her computer to send out a New Year's e-mail to family and friends. Her mind is made up, same for Steve, and now she has to prepare for what lies ahead.

"Happy New Year to all," she writes, tears streaming down her face. "As you know, I tend to downplay most things and have really not been focusing on the upcoming months, as I wanted to enjoy the holidays. Well, the holidays are over and now it's crunch time.

"I am anxious to speak to a psychologist. I do not know how to explain to Cal what Katie will be going through and why Mom and Dad will be gone. I am tormented with how to explain to Katie that she cannot go home and see her brothers, or why she will be going through this process.

"So if you talk to us and ask us, 'How's Katie? How's everything?' we will probably say good. And the day to day is, but internally it's really not, but we may not want to talk about it and sometimes maybe we do.

"As it is almost midnight and 2006, I can honestly say, as much as I don't want my kids to get older, I can't wait for 2007 and to look behind and say 'Thank you God for watching over my family and helping us get through this difficult time.'

"And most of all for Katie to say, 'Happy New Year Mommy.' "Wishes to all for a healthy New Year. Love, Stacy."

A few nights later, as Stacy is putting Katie to sleep, she breaks the news about the transplant.

'No more boo-boo'

"Do you want to not have to do your boo-boo anymore?" Stacy asks Katie, referring to the blood transfusions.

"Yes," Katie says. "No more boo-boo."

It breaks Steve's heart that Katie is so eager to get rid of the "boo-boos." It's not even the monthly transfusions - she's up to a total of 40 now - that are the worst. It's the nightly Desferal injections. Stacy and Steve do everything they can to make them less painful - 30 minutes before the injection, for instance, they smear EMLA cream, a topical anesthetic, in a big circle on Katie's thigh to numb the skin. Then, they wait until Katie is asleep to inject her, to avoid her high anxiety.

About 50 percent of the nights, things go well. But half the time, Katie is screaming and crying. And the process causes her painful leg cramps.

"We have to go to the hospital for a couple of days then," Stacy says.

Katie rolls over and starts crying. "Mommy, I don't want to go to the hospital," Katie says. Stacy drops the subject.

The Trebings next meet with Dr. Kutluk Oktay at New York-Presbyterian Hospital/Weill Cornell Medical Center about removing Katie's ovary; Oktay is a fertility specialist who would do the freezing after a Sloan-Kettering surgeon removes the ovary. Oktay listens as Steve and Stacy explain Katie's upcoming bone marrow transplant.

"You conceived your son for this?" Oktay asks bluntly.

"Well, we wanted . . ." Stacy begins.

"You wanted another baby, so why not?" Oktay finishes.

Explaining the procedure

He goes on to explain how the ovary would be removed, cut into strips with the eggs still embedded inside and frozen. Females are born with all the eggs they will ever have and they lose them with age. In a 3-year-old, one ovary probably has 500,000 eggs, Oktay explains. Even if in the freezing process Katie loses half of those, that still leaves 250,000 eggs, which is equivalent to the fertility level of a normal 25-year-old, Oktay says.

In the future, when Katie is ready to have children, doctors would either replace the ovary in its normal location, or they would surgically implant it under the skin in her forearm or abdomen and then extract eggs and fertilize them in the laboratory.

The procedure is experimental. Doctors haven't yet had a person who had her ovary taken out at age 3 return to have it re-implanted. In fact, they've only reimplanted ovaries in 12 women so far worldwide; three have given birth.

"This gives you hope," Oktay says.

Stacy and Steve decide to do it.

"It seems like a win-win situation," Steve says.

"It seems like you're using every piece of recent technology to your benefit," Oktay says.

"Poor kid," Stacy says about Katie.

"Poor kid, but lucky kid," Oktay amends. "Ten years ago you could do none of this.

Cord blood. PGD. Ovarian preservation."

At 6:40 a.m. on March 8, 2006, Memorial Sloan-Kettering is quiet. The indoor pediatric playroom isn't open yet, appointments haven't started for the day. Stacy and Steve arrive with Katie for Katie's liver biopsy and ovary removal.

An orderly in a blue shower cap and scrubs pushes Katie's bed to the operating room as Steve and Stacy walk alongside it. Katie is lying with the blanket up to her neck and a stuffed animal she brought from home - Piggy - next to her.

Stacy holds Katie as the doctors administer anesthesia through an IV. Katie screams for 15 seconds and is out.

By 10:20 a.m., while Katie lies in recovery, Oktay breezes through the door of nearby Weill Cornell carrying her left ovary in a plastic container.

Saving an ovary

He takes it to Room 405, marked "Laboratory" in red letters.

He uses a tweezer to remove the ovary from the container. It looks like a pink lima bean. "You cannot just freeze the tissue like you put food in your freezer or the eggs will not survive," Oktay explains as he works.

He cuts the ovary with a scalpel into tiny slivers like grains of rice.

What's important is the thinness of the slices, because a medical anti-freeze substance must penetrate the tissue before it is frozen or ice crystals will form that damage the eggs.

The soaked ovary pieces are placed in vials and frozen slowly over three hours. Then they will be stored until Katie - decades from now - is ready to have children.

At the end of the month, the Trebings learn that Boulad definitely wants to use Christopher's actual bone marrow for Katie's transplant instead of his cord blood. He believes that will better Katie's chances.

That means Christopher will have to come into the hospital for pre-transplant blood workups as well.

He'd already been to Sloan-Kettering once to have his blood drawn to make sure his marrow would indeed be an exact match for Katie - and it had taken three nurses more than an hour to get blood from him.

Because Christopher is so chubby, poking him in the arm didn't work and the nurses had to hold him down and draw blood from his ankle as he screamed and squirmed.

But then things stall. Katie gets a common parasite doctors think she contracted while playing in dirt in the yard. This delays the transplant for four weeks.

The delays only continue.

On April 1, Katie has strep throat. A new appointment date is set - May 1 - but on that day Katie wakes up with a runny nose. While they wait for that to clear up, Christopher turns 1, on May 4, 2006.

Time to go

The Trebings try again on the morning of May 15. On the drive to the Upper East Side, Katie watches "Cinderella." She wears a light blue hat with "Katie" written on it in purple script, decorated with butterfly and ladybug pins. Steve's Aunt Kathy gave it to her to wear when her hair falls out.

Stacy feels it's a good sign when she notices the church on East 68th Street, across from the hospital, is St. Catherine of Siena, the same name as the Smithtown hospital where her children were born.

Katie pulls her American Girl suitcase into the hospital, rolling it behind her like the hospital pro she is. The Trebings report to the ninth floor and are assigned what will be Katie's room for the next six weeks, the room where her future will be decided.

Room 935.

THE BIRTHS

An estimated 10,000 children worldwide are thought to have been born using PGD,

but no American organization tracks these births.

What difference do you see between Stacy and Sarah?

What does Dr. Lipton advise the Trebings to do?

Underline the odds of Katie dying from the bone marrow transplant.

What is “Day Zero”?

Why would Steve and Stacy need to wear masks, gowns, and gloves?

Why does Dr. Boulad suggest freezing one of Katie’s ovaries?

What’s your opinion about Dr. Oktay’s statement?

What causes delays in the transplant?

(Analysis QuestionCompare Sarah and Stacy. What similarities do you see between the two women? What differences do you see? )

FUNDRAISING: LOVE, SUPPORT POUR IN

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 Ireland and another to the Caribbean.

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 expenses

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 McBride 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 preschool.

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 State University of New York 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 Home Depot 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 Martina McBride, 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 Memorial Sloan-Kettering Cancer Center in Manhattan, 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.

THE FEE - Saving one of Katie's ovaries cost the Trebings $5,000.

Underline how much money they raise though ticket sales.

(Analysis QuestionKatie’s illness brought together family, friends, and the community who rallied to help cover the great expense of curing Katie. How does this compare to the Fitzgerald’s situation? Is it similar?)

Recovery's long road

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

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

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

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

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

Coping after the 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 takeout, 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.

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 goodbye 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.

Getting into swim of things

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

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

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

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

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

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

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

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

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

"She can come now."

Katie jumps out of the chair and hugs him.

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

"Can I go back to school?"

"Yes," he says.

Katie hugs him again.

"What else?"

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

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

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

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

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

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

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

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

Katie battles infections

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

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

But if it's not school that's getting Katie sick, it's her brothers. Just as the Trebings are ready to leave for their long-awaited Make-A-Wish Fou