The most difficult journey

That night after everyone had gone, when it was late and the hospital was quiet, the boy savored his triumph.

He eyed the long white coat that hung nearby. An honorary medical degree that his doctors had presented him that afternoon was propped against his comic books. He was 12, and he felt like the precocious television doctor Doogie Howser.

He imagined himself walking into a lab, sitting in his own doctor's office. He told his mom that when he grew up, he would hang the honorary diploma on the wall, next to his real medical degree. Ronald Joseph Frank Voigt, M.D.

"But if I die," he said, "I want to be buried in the white coat."

His mother listened, ready to tuck him in and cuddle up. Those nights in July 2003 at the Johns Hopkins Children's Center, they always had the same good-night ritual. The boy from the Eastern Shore would put his hands together and close his swollen eyes tight. In a voice that could barely be heard, he would pray for the other kids with cancer, for his family and for his own eyesight, which he thought he would need to be a doctor someday.

But R.J. Voigt and his family were three years into one of the most wrenching journeys in modern medicine. He was among the thousands of critically ill children across the country whose path to death has become long and tortured. The quest to save them, born of love and good intentions, can make them suffer.

Every breakthrough, every child saved, creates a burden of expectation that the next child can also be saved. Barreling forward to the next therapy is the norm. Children endure painful procedures that may be futile. Aggressive care buys time, and some cures. But it places the children on a tightrope that gets higher and higher.

Many, like R.J., will come to hate the very things that keep them alive. They're often too weak to go to school, too tied to medical equipment to take a bath, too sick to eat regular food. Some spend more time in hospitals than at home. They often need the expertise of big-city institutions, far from relatives and friends.

And in the frantic push for life, few parents or caregivers can bring themselves to think or talk about death until it's too late for a child to say he is afraid, or that he wants to die at home, in his bottom bunk.

Afterward, the families and the caregivers must try to live on. They carry not only the loss of the child, but also the trauma of the decision-making, the illness and the death. Those aftershocks warp lives.

The plight of everyone involved has started to draw the attention of researchers, ethicists and policy-makers. They are looking at small but disturbing studies, highlighted in a 2002 Institute of Medicine report. But the most compelling findings come from the clinicians, the families, and the children themselves.

Recognizing the consequences, Hopkins and other hospitals have undertaken steps to ease the physical and emotional burdens of sick and dying children. They're borrowing concepts from compassionate care that have become accepted for the oldest patients - and tailoring them for the youngest.

Changing how these children are handled is daunting, because the health care system values aggressive treatment and trains its professionals to save, not to talk about letting go. And when a child's life is at stake, many believe there is no such thing as going too far.

"Because everyone wants to do everything possible to save children from dying, there isn't a whole lot of scrutiny or standing back and saying, 'Are we looking at the problematic situations we're creating?'" said David Browning, who heads the Initiative for Pediatric Palliative Care, a nonprofit project of the Education Development Center. "We have a system that has created these ethical conflicts for families. ... They're horrible positions for them."

Four or five generations ago, nearly every family, every doctor, every minister had to bury a child. Today, relatively few people know this anguish, and the dilemma of the dying child is a taboo.

But even in the 21st century, the unthinkable still happens. Thousands and thousands of children are living with life-threatening illnesses. And every year, roughly 35,000 children die from complicated conditions like cancer, cystic fibrosis and heart problems.

R.J. Voigt was one of those kids.


He had been raised three hours away from Baltimore, far down the Eastern Shore in the little town of Pocomoke City. He'd been the quirky kid who poked at insects and trees during recess. Like other boys, he loved video games and Harry Potter and Yu-Gi-Oh. But R.J. had a slight stutter and never completely fit in. He was the bookworm who read the dictionary and the Bible and did his homework as soon as he got home from school, sprawled out on the living room floor. He loved science and math, and when his second-grade teacher got cancer, he decided he would one day become a doctor and cure her.

At home, he was more outgoing. For all his fights with his sister, Kimberly, who was a year older, they were close enough to read each other's journals. He taught himself chess, the drums and organ. Balancing on a bike with his mother, Michele Voigt, while riding into town, they'd sing back and forth, "Baby Hold On."

His father had stopped being a part of their lives when R.J. and his sister were toddlers. Michele shared a house with her mother and, as she always had, worked double shifts as a waitress at places like The Country Skillet. Her mother, Carol Wisnom, took care of the kids, including her youngest grandchildren, Taylor and Allen, a pair of rambunctious pre-schoolers.

R.J. and his grandmother were soul mates. They used to walk up and down Route 13, hunting for soda cans to trade for change. R.J. helped her lug containers of water back from the store because their drinking water tasted bad. Trips to the laundromat were a treat, a time to play Connect Four and gin rummy and to fold the warm socks and underwear.

And every morning, R.J. and his grandmom would get up early to have coffee. They'd wander the town at first light, looking at squirrels and butterflies. Or they'd curl up together in the living room rocker and watch the birds outside the window.

In their small, rented white house, they all had their struggles, but they had a life that made sense.

"We raised them right. They drank their milk. They got their shots. They went to church. They had manners," said R.J.'s mother, Michele. "I believed if you did that, that nothing really bad would happen."


The morning of May 24, 2000, they were driving to the elementary school when R.J. shouted from the back seat: "My nose is bleeding!"

Michele turned to see the blood and screamed to her mother, who was driving, to pull over. She recalled how she passed back tissues, pinched his nose, cradled his head. Still, his nose bled. They took him to first one, then a second hospital emergency room. Doctors there packed R.J.'s nose with gauze and promised it wasn't serious.

But from that time on, he slowed down. He stopped pouncing on people from behind, playing tricks on them. He used to devour everything, from his favorite Trix cereal to his grandmother's mashed potatoes. Now he was losing weight. He got terrible headaches.

He'd hold his aching head between his knees, trying to push away the pain. His grandmother loaded him up with Tylenol and draped cold cloths over his nose and eyes. For four months, they took him to different doctors for different tests. Physicians treated R.J. with antibiotics for sinus infections and ear infections. He developed a nodule on his neck, and at one point, doctors diagnosed mononucleosis. But the lump on his neck kept growing. His mother and grandmother had a bad feeling.

"I was scared stiff, trying to act like Grandmom's got it all under control," said Wisnom. "He used to say, 'I'll be so glad when they find out, Grandmom.'"

In late August, Michele got the phone call at the beginning of one her shifts, informing her that her son had cancer. It was rare, and it was advanced. Nasopharyngeal cancer, stage four. The tumor was already filling his sinuses, extending to the back of his throat and encircling one of his carotid arteries.

Hearing this, his mother passed out.

At home, Michele and her mother decided not to tell R.J. right away. He was 9 years old, and he had seven days before the appointment at the University of Maryland Medical Center, seven days to be a kid.

When it was time, they drove to the Baltimore hospital. As they walked into the doctor's office, his grandmother watched R.J. read a sign that said "pediatric oncology." Ushered into a back room, to a small child's table, they crammed into the undersized chairs.

It wasn't a long conversation. The doctor tried to prepare R.J. by saying he had bad news. Then he told him he had cancer. His grandmother remembers R.J. bending his head down, his elbows on his knobby knees. He cried hard. He didn't even take off his gold-rimmed glasses.

After a few minutes, the doctor asked R.J. if he had any questions. The boy looked up at him.

"School starts in two or three weeks," R.J. said. "Do you think you can please get rid of the cancer so I can start fourth grade?"


In times past, the clock would have run quickly. There were few treatments, little pain control and no time to think about quality of life. The doctor would make the decisions, not the parent. And the family would have cared for the dying child themselves.

In the early 1900s, it was a heartbreak Americans had grown used to. So many children used to die of tuberculosis, influenza and other infectious diseases that about 40 percent of all the deaths in the country were among those 19 and younger. For every five babies born, one would die before age 1, and another by age 5.

"If you didn't have somebody in your family who died, your next-door neighbor did," said Dr. Howard Markel, a pediatrician and historian at the University of Michigan.

But over time, infant formula, vaccines and antibiotics arrived. Medical and public health advances saved more and more children.

Over the past few generations, doctors built on that success. New medicines saved the lungs of premature babies. Research breakthroughs beat back some of the cancers that used to kill almost every child who got them. Pediatric wards adopted ventilators and other aggressive techniques from adult intensive-care units.

Today, less than 2 percent of all deaths are among children. But physicians and others have begun to realize that the many lives spared come at a price.

Thousands of children who used to die from previously fatal injuries or cerebral palsy, for instance, are routinely saved by medical interventions. They have average life spans. Yet they must contend with physical, cognitive and behavioral disabilities far worse than those of previous generations.

"We've traded in death, but we have traded it for brain injury, for other kinds of developmental defects," said Dr. Murray Goldstein, a leading neurologist with the United Cerebral Palsy Research and Educational Foundation.

In other categories of illness, the children can't be saved. But physicians are able to give them more time. Cystic fibrosis patients, for instance, live a decade longer, on average, than they did 20 years ago. Premature infants and those with chronic conditions like heart defects, muscular dystrophy, and sickle cell disease all have longer life spans. Children with cancer survive much longer.

All told, experts say, there are roughly 500,000 children living with life-threatening conditions. They are prone to falls, pneumonia, swallowing difficulties, and other health dangers. Many of these kids are a fever away from death. They live in a strange zone where they could die tomorrow or rebound and live for years.


At first, R.J.'s mom thought she had everything in hand. Doctors at the University of Maryland Hospital for Children had a protocol; Michele had a schedule. R.J. was getting seven days of intravenous chemotherapy, then 21 days off when they could get back to Pocomoke City and she could work.

But for the family, things quickly unraveled. R.J. soaked up rounds and rounds of treatment. He also got two courses of radiation to shrink the tumors, delivered while he was lying down, his face locked in a mesh mask, so the radiation would hit the precise spot. He was so shaken that he asked his mother to dig out his favorite stuffed animal, the rabbit Mr. Browney, tucked away when he was 6.

R.J. seemed to get every possible complication. He had fevers, nausea, swelling and vomiting. In one episode, a medicine caused a severe allergic reaction. He could barely breathe and landed in the intensive-care unit.

He couldn't go to school anymore, because he was too sick. Instead, he was mostly in Baltimore with his mom, staying at the Ronald McDonald House, a temporary home for children undergoing treatment. At first, other family members tried to stay with him in the dorm-like setting, but that became too difficult. Michele kept up activities for R.J., taking him to attractions like the Maryland Science Center.

Michele had curly hair and a big laugh. Her knack for getting in funny situations made some compare her to Lucille Ball; others thought she had the straight-talking, real-mom personality of Roseanne Barr. She learned to use the computer and became savvy about the health care system. She fought for everything her son needed, like the red wheelchair with the reclining seat.

All the while, R.J.'s blond hair was falling out and growing back brown. He lost much of his hearing, a side effect of the powerful drug Cisplatin. Over the months, surgeons removed a salivary gland, performed biopsies, did more radiation. Several times, it looked as if he wouldn't make it. A year into treatment, doctors discovered lymph nodes swollen with cancer and proposed major surgery on his neck to remove many of them, as well as his left jugular vein.

With such a dangerous operation looming, Michele tried to be honest with R.J. that it was risky, but she stayed upbeat. She had always explained to him the side effects of each treatment, as she did this time. To help him through it, she created a pillowcase signed by well-wishers and promised R.J. a present. He missed the birds in the yard at home. So he asked for a cockatiel.

He made it through the surgery in July 2001. And like other times before that, R.J. bounced back. He got his bird and named it T. Rex. It lived at the house in Pocomoke, which they got to on some weekends. At the Ronald McDonald House, he was able to run around, pulling pranks or playing with his younger buddy, another cancer patient, J.R. Curtis. At night he knocked on the manager's door, asking "Miss Lisa" to play checkers.

"He was invincible," said Marianne Rowan-Braun, director of the house. His ability to rebound inspired them. And R.J.'s older sensibility helped him bond with adults as well as children.

"He was an exceptionally mature person for a little child," said Dr. William Gray, the associate professor in the department of surgery at the University of Maryland School of Medicine who did the neck surgery on R.J. and remained involved with his care. "He tolerated all this discomfort very well, and he had this real philosophical attitude. If it was making him better, he would put up with it."

For a long time, R.J. kept going without complaint. Yet a pattern had taken hold. After R.J. recovered from the surgery, he started another cycle of chemotherapy. The gray, cancerous lesions on both sides of his neck kept growing back. His face was red and swollen. The tissues in his neck were infected.

In late January 2002, doctors confirmed that the cancer had spread to another spot on his neck. After meeting about his case, they concluded that further treatment couldn't cure R.J. They called the family.

His mother and grandmother remember sitting at the big conference table, seeing the blur of white coats, hearing the words that they had no more treatment for R.J. The physicians recommended hospice care.

"We felt that the chance that he'd benefit from more chemotherapy was so low, and the side effects for him were so bad," Dr. Gray said. "We thought that it might be better for him to spend his remaining time over on the Eastern Shore, with his family."


If the latest doctor couldn't cure R.J., Michele decided, she would find one who could. In modern medicine, the options are tantalizing, and everywhere: on the Internet, in a snippet a friend heard on a news program. Parents feel it is their duty to shop for treatments, and academic medical centers encourage children to come for second opinions or to enter clinical trials.

Michele got on the computer and found a clinical trial in Texas that might have a spot for R.J. But in the meantime, she needed an oncologist who would take his case. Searching online, she sent his medical records to research hospitals across the country.

She also tried alternative medicine, paying a homeopathic physician hundreds of dollars for supplements, cod liver oil, and a customized diet.

On the morning after R.J. was discharged from the University of Maryland Hospital for Children, in April 2002, she had her son in the waiting room at Hopkins' oncology clinic, one of only two institutions that had responded to her query. The other was Memorial Sloan-Kettering Cancer Center in New York City.

Dr. Meghan A. Higman, a Hopkins physician who had treated rare tumors similar to R.J.'s, doubted that she could get rid of it. But she thought she could stabilize R.J. so that he could try an experimental therapy in Texas that Michele had found. Dr. Higman also thought that she could use chemotherapy combinations that hadn't been tried on him before. And she told Michele and R.J. that she could do some of it through his permanent intravenous line, not the repeated needle sticks he hated.

She had one goal, to give him some good time, and one rule, not to do anything that would hurt R.J.

Dr. Higman, who was in her late 30s, had cared for many dying children. But she was humble enough to believe her prognosis for R.J. could be wrong. Like other pediatric oncologists, she had witnessed how research and new therapies had turned once-fatal diagnoses into treatable diseases. Dr. Higman knew that every once in a long while, one of these children who seemed hopeless would surprise everyone and make it.

"For most people, there would have been a stopping point earlier for R.J. People will weigh and balance and say, 'This is enough.' Others go for everything," Dr. Higman reflected later. "In the adult model, people tend to stop. If you've lived 60 years, that's OK. If you've lived six years, is that OK?"

It was a call that she thought the child and his family should make. She took his case.


Many families and doctors have a high threshold for what they're willing to do to save a child's life. That's partly based on science. Many of the fatal illnesses that afflict children, unlike those in adults, are so rare that data on how to best treat them is scanty. The course of the diseases is often unpredictable. One reason is that kids are still growing - a biological process doctors describe as similar to healing - making them more resilient than adults.

Parents often feel they have no choice. They are in a system geared to go, in a culture where expectations keep getting higher. Children's hospitals build their marketing campaigns around the promise of new technology and treatments; they raise money through a nonprofit group called the Children's Miracle Network. In the news media and movies, story lines and plots often dangle the idea of an 11th-hour recovery. Families tend to hear the message that if they fight hard enough, they can beat any illness.

One of the few anthropologists who studies the families' decision-making has found that parents' reasoning is based on a number of complex factors. "What they understood intellectually, that the disease was incurable, was not necessarily what motivated their choices,'" said Myra Bluebond-Langner, of Rutgers University.

In a study presented this year, she tracked 40 families in one British and one American hospital from the point when standard therapy had failed and the chance of cure was less than 30 percent for the child. Not one family turned down a treatment possibility. Even if their child was in the earliest phase of a clinical trial, most considered the yet-unproven remedy to be doing something that might extend the child's life.

Doctors and scientists say that to parents, heroic rescue efforts such as lung transplants for cystic fibrosis patients, look like the promise of a new life. Often parents hope for a discovery that might save their child if only he or she can hold on a bit longer.

Some worry about how that push affects the children. Art Caplan, a bioethicist at the University of Pennsylvania, described cases he has been consulted on, where a 14-year-old boy was about to get his third liver transplant, where infants with genetic defects were going in for their eighth, ninth and 10th neurosurgical procedures.

"Our culture values children, and chasing any odds is what is morally expected," Caplan said. "Anything less is just seen as somehow amoral."

For Michele, the twin emotions were expressed in what a Philadelphia pediatrician calls the Persephone syndrome. Like the maiden in Greek mythology who must die each winter before being allowed to return to life each spring, ailing children nearly perish and inexplicably rebound. Afterward, their parents are full of hope.

The same feeling can be called denial. Either way, parents say they can't carry on without it.

"To say it's false hope is too cut and dried. These families have watched their child go down, seem to be heading away forever, and then come back," said Dr. Chris Feudtner, a pediatrician at the Children's Hospital of Philadelphia.

No wonder they are skeptical when yet another doctor tells them their child isn't going to make it. "Can you imagine what that would do to you?" he asked.


In the summer of 2002, Texas Children's Hospital was ready to try its experimental therapy on R.J. Scientists had engineered the boy's own immune system cells to try to fight his cancer. And with money from a nonprofit group that helps parents pursue second opinions and other treatments, the family flew to Houston.

Medically, it was a long shot, but not to Michele, who believed there was a miracle out there, if only she could find it. Friends and family in Pocomoke City felt the same way. And R.J. wanted to try.

Once in Texas, R.J. was well enough to get just one dose. Doctors discovered that a tumor was starting to block his airway. Other tumors were already obstructing his nose and mouth, so little air could get through. Surgeons said they needed to operate immediately to insert a breathing tube.

Michele said she hadn't wanted one in R.J.'s throat. He would have a painful wound to be tended to and would not be able to swim, something he loved. But when she conferred with R.J.'s doctors at Hopkins and Maryland, they explained that otherwise, he would likely suffocate within hours or days.

Before she gave her consent, Michele talked with R.J. He told her he was scared, but he said he didn't want to die. She was determined not to let that happen, not yet. Certainly not far from home, in Texas, where they had come seeking a cure.

"This was my child. I was willing to fight to the bitter end," she said. "If there was a 1 percent chance, I was willing to take it."