"Take a picture of me!" commands a zippy little boy, sticking his smiling face in front of
the photographer's camera before scurrying off to play with toys.
At a table, Julia Byon sits, quietly amused. A little skittish about her face being in a
magazine, the 13-year-old looks down through her glasses at a miniature Etch-A-Sketch,
gently twisting the knobs as the photographer turns the camera back onto her.
If she could, Julia would likely trade the spotlight with someone who wants it - namely,
her 10-year-old brother Kevin. Maybe she'd rather be reading science fiction books or
playing Nintendo Wii than answering the questions of a stranger with a notebook inside her
Chino Hills, Calif., home.
But with her parents seated beside her, Julia accepts that she is the subject of the day's
interview, the focus of the bulky camera lens. She knows why.
Two years ago, Julia was diagnosed with acute lymphoblastic leukemia (ALL), a fast-
growing cancer of the white blood cells, the cells that normally fight infection.
According to the National Marrow Donor Program, there are about 4,000 new cases of
ALL in the United States each year. It is the most common form of leukemia among
children, though it can appear in people of any age.
For patients with ALL, there is a 60- to 80-percent survival rate. Left untreated, the disease
can be deadly.
While treatment options have improved dramatically over the last two decades, the process
requires aggressive bouts of chemotherapy. And the disease often comes with long-term
side effects.
As the photographer snaps some candid shots, Julia's father, Won Byon, a 38-year-old
finance executive, notes that there aren't many recent pictures of the family together. Much
of their days have been spent inside hospitals and doctors' offices, as Kevin was diagnosed
in his younger years with high-functioning autism, and just a few years ago, Juyeon Byon,
Julia's mother, also 38, battled stomach cancer.

***

Through much of grade school, Julia seemed to be living a normal, healthy life. Her
favorite subjects were math and science. She also enjoyed tennis and playing the piano. On
weekends, she loved going to the park and running around with her little brother.
Then, in the summer of 2005, just before the start of sixth grade, Julia didn't feel like
herself. After returning from tennis camp, she complained that she could only run a short
distance before feeling exhausted and out of breath. As days went on, she began feeling
tired all the time. Even in the warmest weather, her body felt cold.
During the school year, Julia suffered a pain in her ankle that wouldn't go away. Her
parents took her to see a pediatrician several times, but X-rays showed nothing out of the
ordinary. She took antibiotics, but the pain lingered. Unable to walk without limping,
eventually she needed a crutch.
"It all seemed very strange," Won recalls.
"People couldn't figure it out," adds Julia, speaking softly and looking at her parents. "It
was like they were trying to fix it with a Band-Aid."
On New Year's Eve, Julia's ankle pain worsened and her face grew pale. Won decided to
take her to a nearby hospital to have it checked. There, doctors ran a blood test and noticed
her white blood cell count was abnormally high. They immediately transferred her to the
ER at the Children's Hospital of Orange County, where she was given two blood
transfusions and a bone marrow aspirate, a medical test that removed a small amount of
bone marrow fluid. 
As they waited in the hospital room, Won sat in fear, while Julia remained calm. She
remembers taking pictures with her dad's cell phone and trying out the hospital food. "I
think it was beef," she says. "It was good." At one point, they heard some staff members
out in the halls counting down the seconds to midnight.
Finally, the doctor came in with the news. After discussing the severity of ALL, he
explained to Won that treatment must begin right away as the disease can quickly worsen.
"I was in pretty bad shock," Won says. "It was difficult to hear. Juyeon just had stomach
cancer. How could this happen twice?"
Meanwhile, Juyeon was at home with Kevin, waiting. When her husband called, he tried to
ease her into the diagnosis.
"The first thing Won told me was that there is a good chance that Julia will be completely
cured," Juyeon says. "And then he said the word leukemia. It was very overwhelming. But
you don't have time to be overwhelmed. You just have to go through it."
Dr. Ivan Kirov, a pediatric oncologist and the director of the recurrent cancer program at
Children's Hospital of Orange County, says some of the common symptoms of ALL such
as fever, fatigue, paleness, swollen lymph nodes and decreased appetite can mimic less
threatening pediatric conditions, sometimes leading to delayed diagnosis. Other symptoms
of ALL include frequent infections, easy bleeding or bruising, bone and joint pain.
Leukemia starts in the bone marrow, then spreads to the blood. With ALL, the bone
marrow produces abnormal cells which crowd out normal red blood cells, white blood cells
and platelets the body needs. The disease is slightly more common among white children
than Asian American children, and is more common in boys than in girls. With the
exception of prenatal exposure to X-rays and certain genetic syndromes, little is known
about its causes.
After researching treatment options, Won and Juyeon decided on a two-and-a-half-year
plan that includes a combination of chemotherapy, steroids and antibiotics. Part of a clinical
trial, the plan has high rates of success.
"The disease is highly treatable now," says Kirov. "Children generally tolerate stronger
treatment better than adults. Though it is a long treatment, most of the time the patients are
at home."
It was a traumatic start to a new year. Just two days after the diagnosis, doctors inserted a
catheter into a vein in Julia's chest. Made of two IV lines, it was used to give her medicine
and draw blood. The foreign apparatus, which stuck out from Julia's body, took some
getting used to. Each day, Won and Juyeon flushed it clean with heparin, a medicine to stop
blood from clotting. And each time Julia took a shower, they needed to seal it with tape and
plastic wrap.
Julia spent the first year of treatment receiving intense chemotherapy. She went into the
hospital clinic for therapy up to five times a week while taking chemo orally every night.
Any time she had a fever, about five times in the first year, she stayed in the hospital for a
week to 10 days at a time to monitor her blood cell counts.
"Things were upside-down," says Won, who was able to do much of his finance work from
home while Julia was sick. Juyeon is a stay-at-home mom.
During those nights in the hospital, Won and Juyeon took turns lying beside their
daughter's bed. His parents flew in from Virginia; Juyeon's came from Korea. Neighbors
pitched in, offering food and to look after Kevin. As word spread, the family experienced
an outpouring of support. "It's impossible to remove all the pain and anguish a parent goes
through," Juyeon says. "But it makes it much more bearable to leave yourself open to those
around you who wish to help."
The first glimmer of hope for Julia came a month into treatment, when doctors found the
chemotherapy was working as they hoped. At least 99 percent of the leukemia cells had
already been destroyed, meaning Julia was in remission.
"Oh, that was the best feeling," Won says.
There was still a long road ahead. When a patient is diagnosed with ALL, he or she may
have 100 billion leukemia cells. Once the patient is in remission, he or she could still leave
100 million leukemia cells in the body. If those cells are not destroyed, they can multiply,
grow and cause a relapse.
For Julia, the side effects of chemotherapy were harsh. Her cheeks were puffy from the
medication and she was weak and nauseous. Though Won says she never once complained.
"Kids are resilient," he says. "Adults are the whiners."
One thing the family dreaded was watching Julia lose her hair. It happened quickly. In just
a few months after the start of the treatment, her shiny black hair had turned to thin,
scattered wisps.
"Emotionally, that was tough," recalls Won, who followed his daughter's path around the
house with a lint brush. For her, Julia says, it wasn't so bad. Friends and neighbors brought
over a variety of hats to choose from - girlie hats, sun hats, bucket hats - but she usually
stuck with her signature turquoise baseball cap. It just seemed to suit her.
While receiving treatment, Julia wasn't supposed to eat raw foods, as they could carry
infection-causing bacteria. She says she missed naengmyeon (cold noodles) the most.
As months went on, life for Julia became more routine. During downtime, she and her dad
would watch TV, play Uno or go to the $1 theater to catch a movie. When she was too tired
for activities, Won would sometimes read aloud. He also set up a webcam on their home
computer so Julia could watch school activities she might have missed out on, such as the
sixth-grade play. Her classmates sent her 'get well' cards and letters.
"I remember I didn't have to do the big project everyone else had to do," says Julia, who
was homeschooled for five hours a week during the treatment process.
After a year and a half of intense chemotherapy, Julia was able to move to the next stage of
treatment, maintenance chemotherapy, which requires her to visit the hospital clinic about
once a month. She will continue the maintenance phase for another six months to a year,
depending on her progress.
Now in eighth grade, Julia takes three classes at school and three at home. "I was nervous
going back," says the teenager, who sports a full head of short, wavy hair. "I didn't know if
people would remember me." To her relief, she says everyone was nice and welcoming.
Julia says she feels well, but isn't as active as she was before. The disease has left her with
a condition called avascular necrosis, which destroys some of her bone tissue. Managing
the condition will be a lifelong process and she might need hip replacement surgery later
on.