Emma Greene sat at the table in her family's kitchen, a pre-calculus book spread out in front of her.
Her mother was making tea, her father was in the garage with his woodworking tools, and her brother, Joseph, was in his room doing homework.
Emma excels in pre-calculus, as well as English, Spanish, science and history.
A few nights earlier, she corrected her father's spelling of the word "persona."
She taught herself how to crochet using YouTube.
Emma Greene carries a grade-point average of 4.6. It is quite possible she could be the valedictorian of her class at Lodi High School.
Yet Emma, 16, is not a typical high school girl. Emma does not attend classes now. Her teachers must come to her.
She no longer plays soccer or practices taekwondo.
Her dark-brown hair frames a face of white porcelain. Her tiny hands appear slightly chapped.
She is frail, weighing 85 pounds, and she has glistening blue-green eyes.
As she sits studying pre-calculus, a tube arcs from under her nose across her face and down to the floor to an oxygen machine. Several times a minute, the machine rattles and then makes a whoosh sound.
The machine helps keep her alive.
Trouble breathing — and finally, a diagnosis
After months of frustration, Mick and Hayley Greene took their daughter to the Children's Hospital of Orange County.
The Greenes were growing desperate. Emma, then 3, was getting sicker, coughing constantly. Mick and Hayley went from doctor to doctor, each one saying it was only allergies. Maybe asthma.
Helping Emma and her familyThose wishing to help Emma Greene may donate to: The Emma Greene fund, Wells Fargo Bank, 311 S. Lower Sacramento Road, Lodi, CA 95242.
Anyone with carpentry or furniture-making work may contact Mick Greene directly at 369-6571.
Finally, one suggested Emma be seen by specialists at the children's hospital.
Now a so-called "sweat test" was ready to begin.
Mick and Hayley had met in a pub in Leeds, England. He is an Irishman, a fellow who loved reading the classics and quoting Shakespeare. And a fellow, by his own account, with "itchy feet."
Before meeting Hayley, he'd traveled and worked in many places, including Africa and France. Mick is a master raconteur whose stories include spending a month camping on a beach in St. Tropez owned by the movie star Brigette Bardot.
When he met Hayley, Mick drove a double-decker bus. Hayley worked for a marketing business in Leeds, an industrial city in the north of England. She was also a skilled seamstress, quiet but quick. They immigrated to California in 1989, settling first in Orange County, where Mick had family. They operated a dry cleaning business.
In 1993, they had their first child and named her Emma Sophie Greene. The baby seemed alert, responsive. Mick Greene would take his daughter for long walks near the Pacific Ocean, reciting the alphabet, counting out numbers.
By 3, Emma was reading.
Meanwhile, though, she had developed a persistent cough. Treated with antibiotics, the cough would subside for a few weeks or even months, then return, even more pronounced.
Over time, the Greenes became alarmed: Their baby had a harder and harder time breathing.
At the children's hospital where the couple had taken Emma, the cuff gathered sweat from her arm.
The sweat was analyzed for the amount of salt it contained.
It was then that Mick and Hayley learned it was not allergies or asthma.
It was, the doctors said, cystic fibrosis.
Often referred to as CF for short, cystic fibrosis is a genetic disorder. It causes the body to produce thick, sticky mucous in the lungs. It is chronic, insidious, progressive. It often affects the pancreas and liver.
Many of those with CF must cough regularly — even incessantly — to clear the constant accumulation in their lungs. Choked by the mucous, the lungs become weakened, vulnerable to infections. Scar tissue builds up.
The progression of CF varies widely from person to person. In some, the disease proves fatal by the teens. In others, it is not even diagnosed until the teens or even 20s.
Emma's CF has progressed steadily.
Her breathing is rapid, labored. She cannot speak for long without pausing for a breath.
The CF has created a huge need for caloric intake; in part because the disease blocks the body's ability to absorb nutrients, in part because CF causes unrelenting lung damage and scarring that the body constantly tries to repair. Emma drinks a nutritional supplement four times a day, as well as extra nutrition at night.
As a family, the Greenes are not particularly tall, but Emma's small size is likely, in some measure, a result of the CF, too.
The chapping on her hands is due to the saltiness of her sweat.
She and her family have endured brutal challenges because of the CF.
But they also have hope.
The 'little greene giant'
Her soccer coach called her "the little greene giant." Emma loved soccer, was speedy and feisty.
"She'd go up against a bigger player, so much taller," Mick Greene recounted. "And she had no fear. No fear at all."
Both Emma and her brother, Joseph, a student at Millswood Middle School, have advanced belts in the martial art of taekwondo.
Her parents are at a loss to explain it — the drive that propels their daughter. Since she was quite young, Emma has been questioning, exploring, learning.
She has grit.
A few months ago, Emma wanted to take driving lessons. To earn the money for them, she crocheted several small animals and put them out for sale on a patio table in the family's front yard on Lodi Avenue.
"She only sold one or two, but it was a nice try," Hayley said, with a smile. Eventually, Lodi Driving and Traffic School donated the lessons.
Until this year, Emma attended regular or gifted classes. She started at Reese, shifted to Elkhorn, Lodi Unified School District's school for gifted children, then enrolled at Lodi High School, where she is a junior.
She would come home and, without hesitation, go to the kitchen table, take out her calculator, open a book, start the homework. Emma absorbs concepts quickly. Her love of learning seems omnivorous; she loves math and science, but also enjoys writing poetry and reading the plays of Arthur Miller.
She also works very, very hard.
She is competitive, and relishes engaging with Mick during nightly sessions of "Jeopardy."
"A couple nights ago, one of the categories was 'Greek mythology,'" Mick recalled in his Irish-English brogue. "She just killed me."
She has taken assorted Advanced Placement exams, never failing to get less than an A.
This year, because of her worsening condition and the threat of H1N1, her doctors insisted she stay home.
Despite the oxygen, the pills, the use of the inhalation machine, and bouts of fatigue, Emma keeps a relatively full schedule.
A teacher comes to the home each afternoon. For at least two to three hours after the teacher's visit, Emma does her homework. She has remained active in a group called the Storm Drain Detectives, helping test waters flowing into the Mokelumne River.
Emma has a special love for nature and animals.
Two years ago, the Make-A-Wish foundation flew the family to Florida. Emma got to see penguins and walruses, and snorkel and swim with dolphins.
Recently, she volunteered at the Micke Grove Zoo during an exhibit featuring Australian birds known as Lorikeets. Emma gave cups of nectar to visitors, who would then feed the exotic birds. "It was great seeing people learning about the Lorikeets, because if they know about them, they will take better care of them," she said.
Emma reflects a familial affection for animals, especially cats. The Greenes have five, the most allowed under city law: Smokey, Pan, Bridget, Bagheera and Frizz.
Good questions about a transplant
Emma has endured many drugs, many treatments. She has been hospitalized five times because of infections.
Early on, when Emma was still a toddler, she would lie on the floor and Hayley would gently, repeatedly tap her on the back to clear her small lungs. Each session took about 30 minutes. This was done three times a day.
Later, Emma was fitted with a special vest that would mechanically vibrate and help clear her lungs.
Now, Emma uses a machine known as an IPV, or intrapulmonary percussive ventilator. She holds a mouthpiece and the machine pushes puffs of air into her lungs, helping to clear them. The ingenious machine also delivers medicine, including decongestants and antibiotics, into her body.
Emma uses oxygen 24 hours a day, and takes 15 different pills.
Still, her lungs are growing weak. They worked at 50 percent capacity 10 years ago.
Now, they are at 23 percent.
Now, to survive, Emma needs a double lung transplant. The CF has compromised her liver, too, so she needs a liver transplant as well.
In November, she was placed on the transplant recipient list at Lucile Packard Children's Hospital at Stanford.
The call could come at any time, though the typical wait is two to six months, said Dr. Carol Conrad, an assistant professor of pediatrics and the medical director of the heart-lung and lung transplant program at Stanford.
The median survival after transplant is about five years. That's largely because the transplanted lungs, over time, build up new scar tissue and can become reinfected.
Conrad, who is treating Emma, was impressed by her understanding of the transplant process.
"She is a smart girl. She is quiet, too. Yet when she started asking questions, she asked some very good ones. We find the patients who are knowledgeable and engaged tend to have better outcomes because they are active participants in their own treatment."
Following the transplant, Emma will be able to walk fast, even run, play soccer again.
She has started a post-transplant to-do list: hike in Yosemite, go to the Monterey Bay aquarium, visit the San Francisco Zoo.
She will continue her high school studies while recuperating at Stanford for three months. There are a handful of students, including Emma, with stratospheric GPAs who might prevail as valedictorians.
Emma doesn't intend to let down, despite the transplant.
"Wouldn't anyone with a chance want to be the valedictorian?" she asked.
After graduating from Lodi High, her dream is to attend college and become a zoologist.
The transplant and related medicines will be paid for by the state-supported California Childrens Fund. The Greenes, though, are not yet sure how they will pay for associated costs, such as transportation.
Living frugally, but with hope
The Greenes moved to Lodi six years ago. Mick joined a friend in an industrial cleaning company based in Stockton; much of the work involved scrubbing out the drums in cement trucks.
Later, Mick joined a cabinetmaking company. He is a skilled woodworker; the Greene home is full of the finely crafted tables and cabinets he has built with his own hands.
Demand for cabinetmaking has dwindled, though. Until recently, his company was doing some jobs installing cabinets in new or renovated schools.
Now that work, too, has fallen off.
Hayley works part-time at home in a creative if unusual endeavor: She sews costumes for mascots, whether for sports teams or businesses.
They live frugally. A few times, doctor appointments for Emma have been postponed because the family's Dodge Caravan was broken and there was scant money to fix it.
"I try to put a roof over our heads and food on the table, what a man has to do," Mick said. "But lately, it has not been easy."
Since her daughter was 3, Hayley has been a caregiver. Fetching and providing medicines. Taking Emma to the doctor, the hospital. Lovingly tapping her daughter's back when she was a young child, then attaching the vest, now helping with the inhalation machine, the oxygen.
Wondering what the future may hold.
Research into CF continues steadily, with advancements in drugs and treatments.
"We do not want to dwell on the doom and gloom," Hayley said. "We know what the odds are. And we know there are people who are beating the odds.
"There is reason for hope."
Nearby sat Emma at the kitchen table, her brilliant eyes scanning the text in front of her.
The metallic whoosh of the oxygen machine filled the room.
Hayley and Mick do not see a daughter diminished. They see a luminous child with unlimited potential. A girl with drive and smarts who loves "Jeopardy" and dolphins and writing poetry.
A girl who will continue her quest.