Hope delivered: Baby conceived to cure Katie is born
"It's a boy!" says obstetrician Brian McKenna.
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?" 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 2½, 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, like 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.
Making a decision
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.
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.
Trebings do their research
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.
Stacy's 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.
Visit with fertility specialist
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."
Time to check in
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.
Removing Katie's ovary
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.
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.
Decision to use bone marrow
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.
Trip to the hospital
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.