The Battle for Breana’s Life : For 23 months, the McDonalds of Irvine have juggled hope and despair. Even as their daughter’s leukemia surges, medical advances and a new sister make the toddler’s recovery a distant but possible reality.

The shudder lifted Frank McDonald’s head off the pillow. He rolled over but couldn’t drift back to sleep. Something’s wrong, he thought, as he sat up and looked around the dark room in Children’s Hospital of Orange County in Orange.

Frank and his wife, Jan, had learned much in the past year while shuttling their gravely ill daughter from one doctor’s office to the next. They could rattle off obscure medical terms or navigate through a morass of insurance forms and regulations. More than that, they could recognize that cold whisper of dread that signals trouble. When you have a child on the edge, no sleep is deep.

On that Friday after Thanksgiving, Frank stepped toward the bed of his 23-month-old daughter, Breana. In the dim light he saw his child atop the starched white sheet, surrounded by a shadow. He flicked on the light and saw she was lying in a pool of blood that had trickled out of a transfusion device feeding into her chest.

“I about lost it,” the 34-year-old U.S. Marine said. “I pushed the button for help and ran out into the hallway shouting for the nurses.”

Help arrived in time, and Breana, again, had dodged a bullet. “I was sure we had lost her, after all that’s happened, all we’ve been through,” Frank said.

Shadows have been around beautiful Breana Kay McDonald since the day she was born, so slight and weak, with Down’s syndrome and a hole in her heart. Her first year was rough, marked with harrowing seizures, but her prognosis after corrective heart surgery in April, 1993, was decent. Then the news came earlier this year, landing with a numbing thud in the hearts of her parents: Breana had the early stages of leukemia.

Since that day, the odyssey for the Irvine parents and child has been alternately inspiring and wrenching. The battle to save Breana, a battle not yet resolved, will only be won if she has her cancerous bone marrow replaced--an area of medicine that has seen some landmark advances and successes in recent months.

The McDonalds only have to look in the room next door to Breana’s room at CHOC to see the benefits of these cutting-edge techniques. Her neighbor is Aida Jacinto of Glendale, a 6-month-old who is recovering nicely from an experimental procedure performed by Breana’s doctor to halt her leukemia with a megadose of marrow cells.

Farther away but even closer in situation is 5-year-old Christy Schwartz, a Cleveland girl getting a second chance at life thanks to her newborn sister. Doctors plan to replace Christy’s tainted marrow with an infusion of rich, marrow-producing blood culled from the umbilical cord delivered during her sister’s Nov. 22 birth.

Breana was slated last month to receive that very same treatment, which has been performed fewer than 70 times worldwide. Frank and Jan had their second child, Mariana, on Nov. 1, and specialists were on hand to collect, test and freeze the cord blood that was a close genetic matched to Breana. But before the transfusion could be performed, Breana’s leukemia, which had been dormant, surged.

“I don’t know; I was kind of expecting it,” Jan, 25, said the day after the test results arrived with the worst news possible. “Something told me not to go buy a turkey at the commissary. Something told me we’d be spending Thanksgiving at the hospital.”

Breana will be at CHOC throughout the holidays. She is a couple of weeks into two months of chemotherapy, a treatment she may not survive because of her weak heart. If she does weather the barrage of chemicals and radiation, and her leukemia goes into remission, she will again be eligible for the extraordinary cord blood procedure.

The technique has the potential to change the way leukemia and other marrow disorders are treated, eliminating lengthy searches for donors and the painful process they undergo to surrender marrow. Evidence also suggests that cord blood, taken from afterbirth that is typically discarded, makes for a safer transplant, reducing the chance of rejection.

For the McDonalds, the dazzling promise of the cord-blood technique was a high-tech life preserver they clung to during the months before Mariana’s birth. They coped with Breana’s roller-coaster health by reassuring themselves that everything would be fine, just as long as the leukemia stayed dormant until they had the cord blood.

“All these things were going on, the pregnancy and keeping an eye on Breana,” Frank said. “The clock was ticking. Then we got the cord blood, but before they could use it, well, I guess we just ran out of time. Now we have to see if she can make it through the chemo. It’s all in God’s hands, again.”

“We Would Do Whatever We Had To.”

Jan McDonald knew even before she looked at her firstborn for the first time. She had known for three days, since the dream. She had seen a giggling girl, maybe 4 or 5 years old, standing beside a Christmas tree surrounded by brightly wrapped gifts. The child’s face was familiar, somehow, and it was different than most youngsters’.

“You could see she had Down’s syndrome,” Jan remembered, trailing a finger down her own cheek. “Her face. . .You could just tell. That’s when I knew.”

A few days later, the delivery room team was busy over the minutes-old child, who had swallowed a great deal of blood during the delivery. Jan looked past their gloves and pump and studied her daughter’s features. “I told Frank right then. He looked but wasn’t sure, but I was.”

The couple had been married for four years. His stint as a Marine helicopter mechanic had taken them from South Carolina to Hawaii and then, in 1992, to Orange County. They were scared when doctors confirmed Jan’s intuition. “We didn’t know anything about it all, what it meant really for us or Breana,” Jan recalled. “We knew we loved her, though, and we would do whatever we had to.”

Breana was a month old when her parents watched her stiffen and go wide-eyed for the first time. The seizures were part of the medical baggage that often accompanies Down’s, as were the coronary problems. The troubles worsened two months later when a wall separating chambers in Breana’s heart blew out.

The McDonalds were seeing their world change. Other matters were quickly eclipsed by the onslaught of medical problems. They were far from their families back East, so they managed on their own. Some good friends and Marines stepped forward to help. The couple found themselves edgy most of the time, tired and drained, living day to day, clinic to clinic.

While the Marine Corps was sympathetic and helpful--a program for parents of ill children allowed Frank to juggle his schedule and remain at home when his unit was shipped overseas--the government’s insurance programs were less cooperative. Jan spent long, tense hours on the phone trying to sort out the mess.

A toll was being taken on the couple. Their relationship was tested by short-fuse frustrations, and they found little time for themselves. On Jan. 28, though, they set aside some rare time for each other. They didn’t know it at the time, but they were creating their second child and, maybe, a second chance for Breana.

“The doctor called later that same night, and we had to rush off to the hospital because Breana’s blood work came back,” Frank said. “When they said ‘leukemia,’ the room started spinning for me. I had to grab a chair to keep from failing over.”

The clock was ticking. The cancer was in a latent stage but could surge at any time. Doctors hurried Breana into a second heart surgery they had hoped could wait until she was older and stronger. There was no time to wait. They needed her heart to be ready for the arduous months ahead, should chemotherapy be needed.

The National Bone Marrow Registry in Minnesota began screenings to find a potential match for Breana. The playful, tow-headed girl would need a transplant to quell the leukemia, doctors agreed. Jan and Frank and their relatives underwent DNA tests, but they didn’t offer the perfect match doctors were seeking. Then, when Jan discovered she was pregnant, a new, better option--the cord blood technique--became available.

Envisioning Two Healthy Daughters

The big day, Nov. 1, began badly. Jan was scheduled to undergo a Cesarean to deliver her second child at 2 p.m., but the McDonalds arrived at the hospital early in the morning. Breana, fidgety and cranky, needed her weekly blood work to chart the status of her nascent leukemia.

As soon as Breana saw one of the brightly decorated, closet-sized phlebotomy labs at CHOC, she began to squirm and wail. She recognized the room, and the familiar feel of the rubber strap wound around her arm, and she wanted no part of it.

“One of the hardest things is watching her get poked and prodded all the time,” Frank said, as he caressed Breana’s head and nuzzled her bright red cheek. “We can’t explain to her either why all this is going on, why Mommy and Daddy let her get hurt all the time. Some days are worse than others, but it’s never easy.”

Breana’s face was flushed as the lab technician, a woman with a gentle voice, tried to win over the little girl with offers of candy and a colorful sticker. Breana threw the candy back at her.

Jan held onto Breana’s legs as the technician probed the crook of the little girl’s elbow, searching for a vein. “She’s been irritable the past few days,” Jan explained. “I think she senses something big. She can tell we’re anxious, and it makes her anxious, I guess.”

After three tries, the needle found a vein. But after a few moments, the woman shook her head disapprovingly as she tapped the small vial. “I didn’t get enough. We’ll have to try the other side.”

As the edgy parents watched, the tech worked on the other arm. Finally, it was over. Frank and Jan were visibly drained as they made their way past the parents and children in the noisy hallway. Breana was withdrawn, sobbing and half asleep. “Not a good way to start the day,” Jan said.

The parents dropped a sleeping Breana off at the house of some friends and headed back to the hospital. They were worried, because the child had never been away from them before, and wondered how she’d take it when she woke up and they were not there.

The excitement and anxiety that surround any birth were doubled by the stakes riding on the cord blood collection and matching. In the end, though, everything went off without a hitch. Mariana, 9 pounds, 6 ounces, announced her arrival to the entire nursery with a set of very healthy lungs. The doctors were all smiles as they filed out of the delivery room with a hearty amount of cord blood, ample for their needs.

Frank beamed behind his surgical mask as he watched his new daughter grip one of his fingers. “She’s beautiful, isn’t she?” he asked of everyone in range.

Mariana met her sister the next morning. Jan held the tightly bundled baby next to her on the hospital bed as Breana pointed at the newest family member and giggled.

Tests began on the cord blood. Early indications were that the match was not perfect but was close enough to proceed. Dr. Mitchell Cairo, director of bone marrow transplantation at CHOC, said the infusion could take place after a few weeks of tests and preparation. The McDonalds envisioned a Christmas with two healthy daughters.

The Mood Was Gray

No one noticed the lump in Breana’s cheek until some family friends visited the McDonalds on Nov. 5, Frank’s birthday. The visitors had with them their little boy with a round face that drew coos from Frank. “Your daughter has chubby cheeks, too,” the boy’s mother cheerfully countered.

“That really surprised me,” Jan said, “because Breana’s always been so thin, we’re trying to fatten her up. We looked and, sure enough, from where they were sitting, it looked like she did. It was just one chubby cheek, though.”

Breana stuck her tongue out playfully the next day when a new specialist peered into her mouth and studied the growth. It could be a side-effect of tooth formation, he said, shining a light in the girl’s mouth. Or, the parents knew without hearing it, it could announce the arrival of full-blown leukemia.

The mood was gray when the worst news comes back. “We were just a little late,” Frank said aloud, but to himself. Any cord blood miracle would have to be put on hold. The couple tried to put on their best face when Jan’s mom, Kay, arrived from Georgia to help out and to, as she said before her voice trailed off, “see Breana, just in case. . . .”

Two days before Thanksgiving--and a day before Breana was readmitted to the hospital for her first bout of chemotherapy--the McDonalds and Kay took Breana to CHOC for a battery of tests and preparation procedures. They were joined by a friend, Michelle Vallens of Los Alamitos, who brought burgers and fries. The weary parents took turns eating at a concrete picnic bench outside the clinic.

Sitting at the table, Jan stared up at the afternoon blue skies and offered a halfhearted smile. “Frank and I both know that she might not make it,” she said. “But we just tell ourselves that if she goes, she goes to God, to heaven, where she won’t suffer anymore. It comforts me; it makes it easier. I don’t know that I could make it any other way.”

Vallens, a friend who met the McDonalds through church, was sitting across from Jan. Vallens lost her son, an 8-year-old with cerebral palsy, last year to chronic renal failure.

“The last time I was (at the hospital) was the night my son, Jonathan, died,” Vallens said. “This is like a nightmare revisited. I came down when I heard about Breana, but it’s not easy being here. Even if you have strong faith, it is so hard to understand how these things happen.”

Jan nodded. “I know.”

Heaven Was Guaranteed

The next day Breana was checked into a sterilized, “clean room” on the third floor oncology ward at CHOC. Before entering the ward’s glass-walled rooms, all visitors scrubbed thoroughly and donned a surgical mask, made less ominous by its pink and blue teddy bear design.

The McDonalds adopted a new schedule: Frank worked all day at the Tustin Marine Corps Helicopter Air Station while Jan stayed at the hospital with Breana and Mariana. In the evening, Frank arrived for his shift and spent the night while Jan and the infant headed home. The couple saw little of each other, and their fatigue and worry was visible.

The first round of chemotherapy had little visible impact on Breana. While her health was fragile, she retained an impish love of getting into things. She giggled wildly each time she tried to pull the surgical masks off nurses and visitors in her version of peek-a-boo. To someone who didn’t know her, only the medical gear and tubes suggested she was ill. That would change, the doctors said.

“They said her hair will start falling out after the next round of chemo,” Jan said while fetching the toys Breana had gleefully scattered across the floor. “So far, though, the only thing we’ve seen is her appetite go down. She won’t eat fruits or vegetables anymore. She still likes ice cream, though.”

The McDonalds have to don gloves to change Breana’s diapers or risk skin burns, a chilling fact that hammers home exactly how powerful are the chemicals coursing through her system.

“Oh, and there’s one other thing . . . she has these now,” Jan said, pointing to freckle-like dots that formed a triangle on Breana’s right cheek. The dots are tattoos that will help guide radiologists when they begin bombarding the lump with radiation. The radiation can damage healthy body tissue and lead to painful sores, so the doctors want to target it precisely.

While Jan and Breana played, several television camera crews filed past the door on their way to see the little girl in the next room, a 6-month-old Glendale girl named Aida, also in the care of Dr. Cairo, who had been in all the newspapers that morning because an experimental bone marrow technique had saved her from leukemia.

The technique used for Aida was different from the cord blood procedure Cairo and company plan to use on Breana, but Jan could only see similarities between the two sick girls.

“What a coincidence, huh? Right next door,” Jan said.

Jan joked that the media would be visiting both rooms if things had been different. Then, “I hope everything works out for that family.”

As the camera crews adjusted their bright lights and tried to coax a smile from the infant, Jan craned her neck to get a glimpse of the beautiful child, who was being held by a nurse. “I hate cameras, so I guess it’s just as well.”

Frank, ever gregarious and outgoing, had met another youngster on the ward, an 11-year-old named Brian who was at CHOC for his second bone marrow transplant. The first failed.

“I met him one day, and the next he was standing in our room when I woke up,” Frank said. “He said he was bored. I could tell he was lonely, so I played with him a while, and we talked. He’s a sweet little kid.”

The precocious youngster, a veteran of the hospital scene, had plenty of advice to share. “He told me about different painkillers, what to tell the nurses and what effect the medications would have on Breana, all kinds of stuff. Breana can’t tell us what’s going on with her, so he helped me understand it a little bit.”

Then the boy asked Frank for some advice. He said in a matter-of-fact way that he knew he would die if his second transplant failed. What he was wondering, he said, was if he would go to hell.

Frank was taken aback, then reassured his new friend that he was in no danger of going to hell. When it was Brian’s time to go, Frank continued, heaven would be his destination. Guaranteed.

“He seemed to feel better after that. I felt like it was a good thing for me to be there when he needed someone. I felt like I gave him something,” Frank said of the boy, who still awaits a transplant.

Frank paused and thought for a moment about that gift, and about the dozen youngsters on the ward where his daughter will spend her Christmas, maybe even her Jan. 4 birthday.

“The thing I pray for is that God would heal every kid in the hospital or at least not make them feel the pain, even if it’s just for a little while,” Frank said. “There’s a lot of pain there. Too much.”

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Transplant Alternative

When bone marrow becomes diseased, it must be replaced. Harvesting blood cells, called cord blood, from umbilical cords and placentas offers patients with cancer or genetic disorders an alternative to the traditional bone marrow transplant.

*

Removing Cord Blood

Cord blood extraction harms neither the newborn nor the mother. It is performed after birth and typically culls about 8 ounces.

1. Placenta and umbilical cord are moved to the lab; syringes are inserted and blood withdrawn.

2. Blood is processed to isolate stem cells, which contain the building blocks necessary for regenerating blood and marrow.

3. Stem cells are stored until needed and then intravenously infused into patient, normally in the chest area.

*

Cord Blood over Bone Marrow

Unlike bone marrow, stem cells culled from cord blood are not genetically encoded and therefore can be used with less closely matched recipients.

Other advantages:

* Cord blood is less likely to have graft-versus-host disease, when immune cells from transplant attack the patient.

* Patients with smaller donor pools, including minorities, have access to larger donor pools through cord blood banks.

* Siblings are more likely to be donors.

Deep in the Bone

Bone marrow, a soft, fatty tissue found in bone cavities, is the body’s blood factory. It is either red--consisting of red and white blood cells and platelets--or yellow, mostly connective tissue and fat.

Sources: Stedman’s Dictionary, Children’s Hospital of Orange County and American Medical Assn. Encyclopedia of Medicine.

Researched by APRIL JACKSON / Los Angeles Times