A FAMILY IN PAIN

Holly Keuthan was 5 years old when she was found to have Ewing’s sarcoma, a virulent cancer that spread from her leg to her lungs. Times Staff Writer Lily Eng and Staff Photographer Lucy Atkins were with Holly and her Dana Point family through much of the ordeal: the treatments, the emergencies, the life-or-death decisions. Their report, over the next three days in View, shows cancer’s profound impact on a family

Jan Keuthan maneuvers the family van through the sparse Sunday evening traffic, barreling through red lights and past slower cars. In the back seat, his 5-year-old daughter, Holly, a blood infection raging through her body, lies on her mother’s lap. Her temperature is 103 and climbing.

In the 30 minutes it takes to get from Dana Point to Children’s Hospital of Orange County in Orange, Karen Keuthan can do little more than cradle the shivering, vomiting child in her arms. In the darkness, she sees only the blur of the traffic, hears the hum of the engine and her daughter’s soft moans.

A medical team awaits them at the clinic entrance. In seconds, nurses remove Holly’s pajamas and attach tubes to her arms, legs and chest.

Holly’s temperature hits 105; her blood pressure slips to 30. Her tiny body is flushed against the white sheets that cover the gurney. Doctors rush her to pediatric intensive care.

“Jan and I sat in the waiting room and cried,” Karen writes in her diary. “It was the most excruciating pain I’ve ever felt. We couldn’t believe we were going to lose her.”

This is Holly’s first battle against septic shock, a side effect of her treatment for Ewing’s sarcoma, a malignant bone cancer.

It’s a particularly virulent cancer, spreading fast and often reappearing even after intense chemotherapy. It occurs most often in those between the ages of 10 and 15, rarely in children under 5 or adults over 30. It usually attacks large bones in the leg or the pelvis.

Holly’s tumor has embedded itself in her right femur; by the time the cancer was diagnosed last January, it had spread to her lungs.

Although radiation and chemotherapy are still the most effective ways to rid the body of cancer, the routine is brutal. In the six months since Holly started treatment, she has lost all of her hair; painful sores covered her lips and crept down her throat. She is often nauseated. Each day begins and ends with medication.

Too sick to attend school and be with children her own age, Holly has only her family for company. In fact, the disease has in many ways also struck at the soul of the family.

Karen and Jan have driven to Children’s Hospital so often they have practically memorized every road marker and street light on the way. They know the nurses and other families in the cancer ward on a first-name basis.

Mounting medical bills have already eaten away the Keuthans’ savings. Restaurant dinners and all-day beach picnics are history. And Holly’s 7-year-old brother, Scott, is feeling lonely and left out.

“In the beginning, there were times I felt like I couldn’t breathe because the news was so bad,” Karen said. “It seems like yesterday we were a normal family and now . . . I don’t know. We handle it in different ways. We have to. We force ourselves.”

Karen and Jan spend hours in the intensive-care waiting room that Sunday night. The nurse tells them to sleep, but they can’t. The lights are too bright and the chairs are uncomfortable. And sound is magnified; each time someone walks by, they leap up hoping for news.

When doctors stop by, it’s to ask permission to try various treatments, including placing Holly on life-support machines to take the strain off her heart.

Jan and Karen look out the window, stare at the floor and pace. They barely talk, and when they do, it’s about Holly and what to do if she dies.

“We knew it would be so easy to start blaming each other for what happened,” Karen says. “We were there crying and trying not to blame each other.”

Karen watches her husband cry and it scares her.

“He has always been the stronger of the two of us,” Karen says. “When he kind of crumbled, it was very different because I had to be the strong one. We really did a role reversal at that point. I had to be the strong one because we couldn’t both be in that condition at the same time.

“When two people are in that much pain, you can’t help each other very much. We tried and we couldn’t.”

Jan Keuthan was raised in Middletown, Ohio, migrating out west after college. A youthful 43-year-old with a boyish grin and compact muscular build, he often uses sports analogies to explain his feelings. More often, he doesn’t explain them at all.

A salesman who relies on commissions, Jan has dealt with the cancer by keeping a busy schedule. He handles all the insurance questions, calls all the doctors, and reaches as many medical experts as possible to make sure Holly is getting the right treatment.

Karen is the wisecracker.

She grew up in a military family, jumping from one town to another every two years until her parents settled in California. A former Continental flight attendant, Karen, 42, is outgoing and friendly.

A mutual friend introduced them in 1978. He liked her humor and beauty. She liked his integrity and old-fashioned values. They married two years later.

When she was pregnant with their first child, Scott, Karen began keeping a diary to record her thoughts about her children. Scott was born July 4, 1983; Holly on Aug. 7, 1985.

At first, they couldn’t decide on a name for their daughter. Karen wanted to call her Emily, but Jan wouldn’t go for it. He wanted to name her Holly. It went along well with Keuthan.

“Everyone keeps thinking she must have been born during Christmas season,” Karen said. “We keep saying no, we just like the name.”

She was a strong and active child. Jan thought she could be an athlete. She loved jumping, often skipping and singing to herself outside the family’s Cape Cod-style home. She learned to ride a bicycle at 4.

Holly nearly reached 5 with only a couple of ear infections, some colds, and a case of the chicken pox. Then in June, 1990, she got sick.

JUNE, 1990:

“Holly began complaining of leg pain and at times refused to walk. When she begged me to take her to a doctor, I knew it really hurt. On a Thursday in the middle of the month, I took her to our pediatrician. She sent us for X-rays. The radiologist called us into a room and showed me a cloudy-looking spot on her upper right femur. She had been been experiencing pain above her right knee. He sent us back upstairs to the doctor, who seemed pretty concerned and scheduled a bone scan for the next day. I went to a pay phone to call a friend and burst into tears. Holly immediately started crying too. I realized I had to make a concerted effort to never let her see my fear.”

Another doctor diagnosed the spot as a bone infection. Six months later, doctors at CHOC conducted a biopsy and found cancer cells.

To Jan, it seemed impossible for Holly to have cancer because she looked too healthy. During her biopsy, Holly stayed at CHOC for several days. Her father could not help but compare her to other children on her floor. By all appearances, Holly was healthy and fit, Jan thought.

“She didn’t look bad,” Jan said. “I got this feeling that I wasn’t as bad off as other parents on the same floor because my child was looking good. I looked around the room and there’s one child who was completely listless and hadn’t been awake for the whole day. I looked at that child and said to myself, ‘Boy, I’m lucky that’s not our child.’ And then they called us into the parents’ lounge with the results.”

JANUARY, 1991:

“The doctor grabbed a cup of hot water, a tea bag and started dunking. She never did drink that tea. She just kept dunking the hell out of the bag and mostly staring at the floor. ‘You have a big problem,’ she started. After that, I remember mostly phrases. ‘Lesions on the lungs. Advanced stages of cancer. Poor prognosis.’

“After a while I stopped listening and concentrated on the lint on my skirt. I couldn’t breath. I felt I was suffocating and no one noticed. I wanted to walk out but was afraid I would faint. She told us about another CHOC patient with Ewing’s sarcoma. But his prognosis was better. I hated him and I detested the doctor.”

The doctor gave the Keuthans three courses of action: no treatment, conventional chemotherapy and radiation, or six months of intensive chemotherapy combined with total body irradiation and a bone marrow transplant.

The odds of survival for each treatment jumbled together.

If the Keuthans sought no treatment, their daughter probably would be dead in two months. With conventional chemotherapy, Holly would have a 20% chance of survival. And if they chose the transplant route, Holly’s odds would triple, to 60%.

Jan and Karen slumped out of the room.

“We leaned against each other and held each other up,” Jan said. “My reaction was that I can’t accept this. This can’t be true. It puts you in a dreamy state of mind. This stranger was telling me all the details about my daughter’s problem and she was giving statistics. She said, ‘Well, the one really good thing is that you have a strong family unit.’ I read between the lines. She meant that this was going to be awful.”

That night, Jan and Karen had their first talk about treatment. Unable to sleep, Karen woke her husband and told him she couldn’t deal with the cancer.

“ ‘I’m not going to make it,’ ” Karen recounted. “I cannot go through with this. It was just too hard. They picked the wrong person.”

Her husband tried to reassure her.

“Jan said we needed to educate ourselves about her disease and do whatever we can to save our little girl,” Karen said. “He gave me a lot of strength and he was positive all along. He kept on saying, ‘I know she is going to make it.’ ”

The Keuthans chose the most aggressive treatment, which started immediately.

The transplant was set for July 18. But six weeks before, Holly suffered the septic shock.

At 4 a.m., a nurse tells the Keuthans that Holly is not doing well. Like an uncontrollable fire, the infection is flaring through her body, slowing her blood pressure and starting to shut down her organs.

The doctors are going to paralyze her with a drug, hoping that her body will reserve its strength in fighting the infection.

“I’ve been through quite a few family deaths. You build up a defense so you control the grief,” Jan says. “You more or less prepare yourself for the worst. But I still wasn’t ready. Not then or now. I didn’t want to lose her.”

Two hours later, the couple is finally led into the intensive-care room.

Holly’s blue eyes stare vacantly into the ceiling, a result of the paralysis. There are so many tubes snaking from her body that the only place Jan and Karen can touch are Holly’s feet. Jan takes one foot and Karen clutches the other.

“I kept thinking, ‘Why did they have to do that to my little girl?’ ” Jan says. “I walk in and see this body lying there with these eyes open. It was as if they had taken her away and left her body behind.”

The sight of Holly lying completely vulnerable frightens her mother.

“I was scared, so scared for her,” Karen says. “She looked so tiny.”

Though paralyzed, Holly can hear, the nurses tell Jan and Karen. So they talk to her and whisper encouragement. Karen picks up a book from the floor and reads it to her daughter. Jan rushes home and gets Holly’s Walkman. They place the headset on her pillow and tune into her favorite station.

It takes hours for the infection to subside. Though the Keuthans are exhausted, they stay with Holly as the sun rises and moves across the sky.

“I was telling her that I knew she was strong and that she could beat this thing,” Karen says. “I think Jan was less hopeful than I was. He was telling her that he was proud of her and he loved her and what a strong special girl she was. I knew exactly what he was feeling.”

By late afternoon, doctors finally confirm that Holly is improving. It takes another 24 hours for the fever to ebb. Finally, she stabilizes and her doctors take her off the paralyzing drug.

As the septic shock slowly fades, the nurses gradually remove the tubes and other instruments. Jan thinks Holly is starting to look like his daughter again. Karen even takes a break and goes to sleep at the Ronald McDonald House near the hospital. They now know that Holly is going to make it.

When Holly awakens two days later, Jan is with her. She doesn’t remember much about her experience. She just knows she was very sick. Her parents tell her the good guys won again.

A few days later, Holly and Jan pass notes back and forth. Karen staples one of the notes to her diary.

“I love you, Daddy,” Holly writes.

“To Holly, I love you very much--you are special. Love, Daddy.”