By Michelle Woo Photographs by Eric Sueyoshi
“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.
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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.
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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, battledstomach cancer.
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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.
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“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 billionleukemia 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.
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Juyeon says the constant process of love and care, the whole experience, has made her family’s relationship even stronger. “When your child is sick, you can’t overthink things. You’re not distracted by questions like, why is she talking on the phone to her friends so much? Why isn’t she doing her work? The only thing we care about is that she’s getting better. Nothing else matters.”
Toward the end of the interview, Julia turns away from the table to play with her antsy little brother.
Sitting on a swivel chair, Julia pushes her feet on Kevin, who is lying in fetal position on the wood floor, giggling and squirming.
When asked what she wants to be when she grows up, Julia responds nonchalantly, like she’s heard this question a hundred times before.
“Some kind of inventor or architect,” she says, staring down at her helpless prisoner, still struggling to break free.
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She adds with a smile, “Or a demolisher of Kevin.”
For Won and Juyeon, these are the little moments that keep moving them forward.
“We take everything day by day,” says Juyeon.
“It feels like a marathon,” Won says of the treatment process. “But as long as she’s staying healthy, every day is a blessing.”
For the session’s final shots, the photographer asks the family to gather on the living room couch. They huddle close. Julia hugs Kevin as he attempts to wiggle his way free. Won and Juyeon laugh.
The viewfinder frames a family who has stuck together through sorrow and hardship.
It’s a portrait of hope.
