The thermostat is set at 70, but the beige-colored rooms in the isolation ward at Children’s Hospital of Orange County feel cold. Stainless steel heart monitors and oxygen tanks sit near the beds. There is a constant drone from the hidden machinery that filters germs.
A mother in one room rocks her baby until he sleeps. In another room, clowns are drawn on construction paper taped to the walls. Shrieks from a toddler crying for his mother reverberate down the hall.
Holly Keuthan is watching television while her mother sits next to her on the bed. They are waiting for the doctor to come and drill a hole in the child’s pelvis.
Called a bone aspiration, it’s a painful procedure in which doctors take a sample of her bone marrow to see if it has been infected by cancer.
Holly is spending her first full day of what will be a six-week stay. There will be full-body radiation and a bone marrow transplant, procedures that doctors hope will save her life.
While Karen holds her child’s hand, the doctor starts to drill with a corkscrew instrument. He pushes down on Holly’s pelvis with the instrument and then tugs hard. Karen stays close to her daughter’s face, trying to keep her from seeing what the doctor is doing. Although the doctor and the nurse talk constantly, Karen doesn’t hear a word.
She flashes on her pregnancy, on the pain, and how the Lamaze breathing technique helped.
“Take deep breaths,” Karen whispers to Holly. “Take deep breaths.”
Holly squeezes her mother’s hand hard. The doctor removes a sample of the marrow. It’s over. Holly falls into a deep sleep from the sedation.
During the child’s long nap, Jan and Karen take their son, Scott, 7, for a simple meal out, a luxury they had not had for months.
As a family, the Keuthans have tried to be upbeat and proceed with their daily lives of work and Boy Scout meetings. But the bone marrow transplant procedure has meant long periods of time in the hospital. Their home life has been shattered.
Jan and Karen waver between apprehension and confidence. They find themselves talking about things they hadn’t done or wished about in years. They want to play tennis, take a weekend trip to Catalina Island, and go ballroom dancing again.
“We just wanted to be normal people again so we can do the fun things we used to do,” Karen said. “I guess we’re feeling overwhelmed. We realize our lives are never going to be the same.”
At dinner, Scott finally opens up about his sister’s illness, a moment that Karen later recaptures in a diary she has kept during this ordeal.
“Scott told us that sometimes he’s happy when Holly goes to the hospital and sometimes he’s sad. I encouraged him to talk some more about it and discovered that not only does he blame her tumor on himself (he hit her in the leg with a baseball once), but he said every time he wishes she would have to go back to the hospital she ends up going the next day. Jan and I tried to help him understand that he’s not responsible for any of this, but he didn’t seem too convinced. It breaks my heart to see the price he’s paying for Holly’s illness too.”
The illness jars Jan, bringing back painful childhood memories.
Jan talks about his mother, Florence, who died of cancer. A Christian Scientist, she did not seek medical treatment and instead relied on faith. She was bedridden by the time Jan was 9. He and his brother and sister took turns changing her bedpans.
“I remember seeing her in the bed, feeding her, washing her, and changing her clothes . . . all the hospital care thing,” Jan recalled. “We all took turns. I remember the confinement and the experience. To me, that was what cancer was. I remember my mother shrinking in size and becoming sicker and sicker.”
Jan abandoned his Christian Science beliefs soon after she died.
Karen writes in her diary:
“Today I feel angry. For some reason, I feel angry with everyone whose child does not have cancer, everyone who stops by for a brief visit and then returns to their normal lives where they agonize over trivial problems. I know everyone’s life has to go on. This has happened to us, not to them. But today I’m allowing myself the luxury of resenting each and every one of them.”
Karen and Jan gently wake Holly at 6 a.m. They help her brush her teeth and dress her in her play clothes. The nurse places Holly on a stretcher. Then the three of them pass through a maze of corridors to St. Joseph’s radiation room.
There, Holly lies on a gurney that is pushed along a wall. Her head and ankles are taped so she can’t move. Two red lights beam down from lasers above the stretcher. Technicians line up the lights to form a cross, then focus it on Holly’s torso.
As she lies still, a bolt of radiation 1,000 times more powerful than a chest X-ray shoots through her body. It will last for 20 minutes and will be repeated for two more days. The dosage would be lethal were it not for blood transfusions, medication and a bone marrow transplant she will get in six days.
As she lies perfectly still, a Latin beat fills the room; Holly’s favorite performer, Gloria Estefan, is singing about the conga.
“Come on shake your body, baby, do that conga,
I know you can’t control yourself any longer.
Feel the rhythm of the music getting stronger
Don’t you fight it till you’ve tried it.
Do that conga beat.”
Outside, Karen and Jan wait in the lounge. They talk about miscellany: who’s going to do the laundry and the dishes; is there enough rabbit and dog food for the family pets; are there enough overnight clothes for them at the Ronald McDonald House? Finally, the red lights go out. The technicians unstrap Holly and she sits up. She’s slightly pale but otherwise looks fine.
By afternoon, though, the radiation leaves its mark. Holly’s glands swell and tighten her throat so she can barely swallow. She vomits and is dizzy. And her skin is red. For the next three days, Holly fights a fever.
By the time transplant day arrives, the Keuthans are relieved. Although Holly is now in isolation with no visitors allowed except for Karen and Jan, the long wait is over. All the monitors at the nurse’s station zoom into Holly’s room. Her heart rate is good and her pulse is strong.
The sunlight barely filters through the window; the I.V. poles stationed by her bed paint angular shadows on the walls. While Karen and Jan wait for the medical team to arrive, a water heater at the foot of her bed is readied to thaw 2.5 ounces of Holly’s frozen bone marrow, which had been extracted earlier.
It is already crowded outside Holly’s room as interns and visitors peer into the room to watch the transplant. They see Holly, barely awake from the medication, holding her parents’ hands.
Frozen in two bags kept at minus 169 degrees Fahrenheit in liquid nitrogen, Holly’s burgundy-hued marrow is thawed. Dr. Mitchell Cairo injects the marrow into Holly and hangs the bags on the poles. Instantly, the room is filled with a pungent sour smell from the preservative that has kept the marrow fresh. Holly cringes and clutches her parents, crying from the taste. Jan rushes from the room to find candy for his daughter. Twenty minutes later, the transplant is done.
The Keuthans now have to wait for the transplanted bone marrow to graft itself onto Holly’s system. It will take weeks for the new marrow to begin producing its own cells to fight off infections. Until then, Holly is vulnerable.
Less than 24 hours later, Holly has a fever that shoots up to 105. She frequently vomits. Painful sores line her mouth and throat. She has a hard time even keeping pain relievers down so she is given morphine drops for her painful mouth sores.
There is fear that she has pneumonia. During one excruciatingly long weekend, Holly’s fever stays above 103 and she once again suffers from septic shock. Her condition is critical.
“Holly’s still spiking really high temperatures. 104+ and is very sick. I’ve lived the last three days with my eyes and heart attached to the blood pressure monitors. Her blood pressure has stayed up a little since last night. But they have put her on supplemental oxygen. Her heart rates slowing down a little too.”
Holly starts to hallucinate. “Hi, little boy,” she calls to her father.
Another time, she thinks there are Mexican dancers on the television set. But the TV is not on. The hallucination frightens Holly.
Karen surrenders to her own mood swings, which climb from high optimism and drop to quiet despair. Sometimes, she dreams about her daughter. In these dreams Holly always has cancer. And when Karen wakes up in the mornings, she struggles to accept that her daughter is sick.
“The painful part is waking up in the morning and thinking, ‘Oh, no, my child has cancer. I go through this acceptance over and over again like a wave,” Karen said.
There is loneliness, too, for Karen. While Jan is working and Scott is staying with his grandparents, Karen is most often alone with Holly, staying with her from 6 in the morning to nearly 10 at night. Jan stays with his daughter during the weekends and at nights.
Sometimes all Karen wants to do is go home.
“I have moments when I think maybe she is going to make it through this OK, and I think ‘Wouldn’t that be wonderful?’ ” Karen said. “But I can’t count on it. Her tumor is in a bad place. It’s so close to the skeleton of body, we have to be realistic. We can’t forget the words, ‘poor prognosis,’ ‘advanced stages of cancer.’ Those words pop into my mind like a tape.”
When Holly’s temperature does not immediately drop, one doctor believes she has pneumonia. He recommends that Holly undergo a painful procedure, which involves placing a tube down her throat to drain the fluid and identify the infection. Dr. Cairo rejects the treatment, saying it is too painful and traumatic.
Holly spends most of her days sleeping, and the Keuthans fall into an uneasy routine of waiting. But the wait is not long. Holly’s temperature begins to fall. Some days, she feels well enough to play Nintendo. Tests are showing that Holly’s cells are grafting quickly and her immune system is growing stronger.
But the usually exuberant 5-year-old is now depressed and temperamental--reactions to isolation and the medication. Even Scott is feeling lonely without his mother and sister.
“Everyone has pretty much lost control of Scott. He’s wiping out caretakers pretty fast, and I’m really starting to feel some pressure to spend some time with him. Since Jan runs a pretty loose ship, I’ve always been the one to supply most of the structure in Scott’s life. I just haven’t been around, particularly the last two months. He gets along OK with my mom, but right in the middle of Holly’s last crisis, we were getting hysterical phone calls from Scott.”
Karen tells her son to hang on tight and that they would be home soon.
Nineteen days after the transplant, Holly loses her first tooth on the eve of her sixth birthday. Her parents tell her about the tooth fairy, so she carefully tucks her tooth under the pillow. On her birthday, Holly finds two dollar bills slipped under the covers.
“I hope the tooth fairy was wearing a mask,” Holly tells her mother.
A group of singing nurses greets Holly’s sixth birthday with gifts and cake, and Scott is allowed to visit for 20 minutes. He gives her a homemade storybook. There is talk now that Holly is ready to go home. Her immune system is strong again. Even Dr. Cairo is amazed with her recovery.
“She’s really doing quite well,” Cairo said. “As difficult as the treatment was, she came back to her own. She’s jovial and back to her very precocious self. The young lady is very happy.”
Tuesday: Difficult decisions