No one knew why the boy started shimmying, going for the corners of his hospital bed. R.J. Voigt was suddenly restless, agitated. The 12-year-old kept calling out for his mom. But he didn't seem to know what he wanted. She kept asking the doctors, "Is this a sign?"
His mother, Michele Voigt, grew afraid to leave his room or fall asleep for just a minute, for fear she would miss the moment. She knew there were many ways R.J.'s life could end: stroke, cardiac arrest, even the tumors eating away at the arteries in his neck. Already, there had been a few false alarms.
After three years of high-tech medicine, R.J. was spiraling into his last days. It was a time when the scariest questions had no answers, when every emotional detail would echo for a family's lifetime.
But as countless families have experienced, there are no guidelines for this final, often frantic stage.
In Room 817 at the Johns Hopkins Children's Center in mid-July 2003, the questions were no longer about how to treat the boy's aggressive cancer. Instead, oncologists, nurses, a priest and a bereavement coordinator were doing their best to help R.J. and his family prepare for death.
Michele Voigt was taking no chances. Tumors and treatment had made it hard for him to talk, so she'd already set up two ways for him to get her attention in the hospital. One was a rattle they called the "Mommy Clicker." The other was a baby monitor for when she was down the hall. Now, she decided they needed another signal. She asked him to wave goodbye.
People want to believe that youth protects dying children, that they don't grow anxious or have thoughts related to the end. But those who work closely with children say those ideas are misconceptions.
Even as the adults around R.J. were trying to catch up, he had been quietly working out specifics of his death, and beyond. In the spring, he asked for his own autopsy, befuddling his mother, who couldn't believe that it would come to that. When he described the funeral he wanted, the level of detail surprised even his oncologist. He asked to be buried on Deal Island, next to his Great-uncle Wayne. For his funeral, he preferred stuffed animals. Flowers, he said, were for girls.
He wondered what heaven was like, and whether his dogs, Greedy and Muffin, who had both died, would be with him. When the time had been right, in May, during his last short stay at home in Pocomoke City, he asked the one person he knew would tell him.
"Grandmom," he said, cuddling against her while watching The Flintstones in Viva Rock Vegas, "what do you think?"
Carol Wisnom had sweated out a hard 61 years, but she'd never seen anything like the cancer that had attacked her grandson. She told him what she thought, that animals and people have different heavens, but that if he asked real nice, God might let him bring the dogs.
"OK, then," R.J. said, leaning his head on her. "I think that's what I'll do. I'm tired." That afternoon, he developed a high fever and was taken back by ambulance to Baltimore, never to go home again.
A PROTOCOL FOR DYING
In a broader effort to change the culture around critically ill children, the Johns Hopkins Children's Center and other children's hospitals have ventured into this difficult territory to craft a better ending for the children and everyone around them.
The Hopkins project, Harriet Lane Compassionate Care, is working to make the death of children less frightening and mysterious. Led by a physician and a nurse, the palliative care group aims to help doctors and families to acknowledge earlier on in a child's illness that he might die - to try to make the family's time together, and the child's death, reflect their values and wishes.
R.J. Voigt was among the few dying children to get attention in this little-explored arena.
In medicine, for all the scientific protocols that have been mapped - plans of treatment that doctors follow for heart attacks, even for strep throat - there is no plan for handling the death of a child. Almost all the research and attention is poured into saving lives.
Later, after their child dies, many parents say they didn't realize how close it was. For months, often years, they'd pushed for treatments. They'd seen their children live longer than anyone once thought they could. Now, they were shocked that no one could tell them what would happen next.
"Has no child died before?" one mother asked.
The children are uncertain, too, but it is often worse for them. Because of their age, they often have incomplete or inaccurate ideas about death. Doctors say many believe they did something to deserve it. Many want to know if it will hurt. And just as anyone would, these children often feel anxious, angry and lonely. But, sensing these questions would upset their parents and others, kids often won't say anything.
Barbara M. Sourkes, a psychologist at Lucile Packard Children's Hospital at Stanford University in Palo Alto, Calif., who specializes in children at the end of life, reported on an 8-year-old boy, who, a few months before his death, finally called out from his bedroom to his parents, "Am I dying?"
Just as their parents worry about them, the children are concerned about their parents. To protect them, the children often do not talk to their parents directly about their fears and doubts, said Myra Bluebond-Langner, a Rutgers University anthropologist who has studied chronically and terminally ill children and their families for more than 30 years. Hopkins staff members tell of a 9-year-old girl who, near death, called her younger siblings into her hospital room to tell them to take care of their mother.
WORRIES AND WISHES
In R.J.'s last weeks, nurse Laurie Rome noticed one day that he had been listening to his mother's phone conversation as she was saying she didn't know if she could go on if he died. After she left, Rome said, she gently asked him how he felt.
R.J. answered in his hoarse voice, tears streaming down his swollen face. He said he was scared for his mother.
"You know, we're not just taking care of you; we're going to take care of her, too," Rome told him. It was one of the few times he reached out to a nurse. He pulled her arm toward him and held onto it. He cried. The nurse cried, too.
They never knew which day would be his last. And even as R.J. was fading, the team and family around him were in a race. All along, the child life specialists, who provide psychological and emotional support to the children, had been trying to give R.J. the chance to do what he wanted.
For one 14-year-old boy, that meant driving his grandmother's red Mercedes-Benz. In another case, when it became known that all that a teenage boy wanted was to graduate from high school, they called his teachers, who rushed to the hospital. Then, just before withdrawing life-sustaining treatment, they held an impromptu ceremony, with cap and gown and "Pomp and Circumstance."
On R.J.'s list were things as simple as going to and bowling. Neither was possible, because he could barely walk or move around. Another, seeing a movie that was only in theaters, first seemed out of the question. But that he wouldn't be alive by the time Daddy Day Care came out on video helped Hopkins staff persuade the studio to send a courier with a copy of the comedy.
They would have the movie for one night. But by the time the film arrived, R.J. was too sleepy. A nurse, not knowing the plans, had given him an anti-nausea drug that sedated him. They tried Pepsi, Ritalin, a cold cloth, moving him to a chair. R.J. even slid his fingers under his glasses, trying to hold his eyelids open.
They rewound Daddy Day Care seven times. Seven times, they restarted. Michele tried again the next morning. But he never really got to see it. R.J., who rarely cried, let out a few tears. "Just forget it, Mom," he said, frustrated. "I can't watch it."
Because they knew that one of the biggest fears of children is being forgotten, Hopkins staff made sure R.J. got visits from people important to him, like his second-grade teacher, Jamey Landon, who inspired him to be a physician, and a family friend, Wayne Brisco.
Other visitors seemed intrusive, but turned out not to be. Among them were a former Mrs. Maryland and a troop of seventh- and eighth-grade girls.
That day, R.J. was too ill and hurting to even watch his cartoons. His head was covered in heat packs and cold packs, and all that could be seen of his face was one blue eye. The girls took turns getting close to him and giving him presents, but they weren't sure how to talk with him.
Later, he wrote a secret note to his mother, one she would cherish as a glimpse of him as a teenager. "When are the girls coming back?"
In addition to making those memories, the staff helped the children to create mementos.
During the last week of her life, one Howard County teenager, Kelly Petrlik, created a photo album of herself to leave behind for her family. She worked on it from her hospital bed at Hopkins after getting her sisters to sneak in pictures from home. The 16-year-old also left behind a journal for each of her parents, instructions for her gift for a sister's far-off wedding, and a request that at every family celebration they buy a special candle for her.
Nurses have long made white plaster molds of the children's hands as a keepsake for parents, but that used to be done after the child had died. During R.J.'s time in the hospital, with impetus from the palliative care staff, molds were made earlier. R.J. was able to help mix up the plaster from the kit and press his hand into it. He made one for his mother and signed the back. Later, Michele could put her hand in those cool spaces, and feel him.
In his own way, R.J. was getting ready. He designated certain belongings for his sister and cousins. Some children even write wills. Later, R.J. asked his mother for a pen and paper and laboriously scrawled out a thank-you note to his doctors, nurses, his mother and family. It was the morning after he'd first called out to his mother, "The angels are coming."
CHRISTMAS IN JULY
He told her there were six of them. One angel stayed with him all the time, sitting or lying in his bed. The other five came and went. They were big, and fit in the room like a puzzle. Neither male nor female, he told his mother, they were "beyond beautiful."
Not until he started talking often about the angels could Michele bring herself to do the hardest thing. For awhile, those working with the palliative care project had been encouraging her to celebrate R.J.'s favorite holiday right away.
So one night, before bed, Michele told R.J. if he wanted, he could have a Christmas in July, just in case he didn't make it to December. If he did make it, he'd get two Christmases. "Are we going to have a tree and everything?" he asked.
Over the next few days, an assistant at the nursing station brought in a string of colored lights and a small artificial tree for the corner. Michele made snowmen for the door and cut snowflakes and taped them on the room's one big window. The big, blue, inflatable alien, which R.J. had won at a festival his last time out of the hospital, got a Santa cap.
But Michele just couldn't bear to sit down with R.J. to make his wish list. Sitting out in the hallway one night, she told R.J.'s pediatric oncologist, Dr. Meghan A. Higman, "I just don't feel like I'm a good mom anymore. I couldn't change anything for R.J."
Sometimes, she couldn't stand being in his room. So that night, after he had eaten, she left the baby monitor at the nurses' station, went downstairs, bought a fried fish sandwich and charged out of the hospital.
Michele popped into a cab. As it pulled away, she rolled the window down. It seemed like the first time she'd breathed all day. She ate some of her sandwich and stared bleary-eyed out at the muggy, gray Baltimore night. She let the wind blow through her hair. It was a short trip over to the Ronald McDonald House to check for mail, but enough time for her to gather her courage.
Back in R.J.'s room, she set up the laptop on his bed. Usually, she tapped out e-mails, sharing grief and advice with the makeshift sorority of mothers around the country who were sitting by the bedsides of their own dying children.
But this night, July 10, was about presents.
"OK, R.J.," she said, firing up the Toys "R" Us Web site. He'd been dozing, but he pepped up. He pulled his legs up to his chest, tapped his skinny finger on his forehead. His mother started making a neat list on a clipboard.
"Oooh, what about this?" she said, her voice brightening, but sounding as if it might break. "Finding Nemo for X Box?"
He seemed skeptical. He wasn't feeling good. Every few minutes, his eyelids drooped closed, or she needed to suction his mouth or tracheotomy tube, and they had to stop. But he got into it, picking out an alien-mission video game, hockey games and action figures. Eventually, he took over the computer mouse.
Michele planned to celebrate Christmas on July 28, the day Dr. Higman returned from a trip. But in the next few days, R.J.'s condition would worsen.
That hot night, sitting side by side at the computer, would be their Christmas.
It ended with a dispute typical of any mother and her nearly adolescent son. He kept trying to click on one button on the Web site, while she called him off. "That's for 14-year-olds."
He persisted, and a moment later, she sighed. "OK," she said, "we'll go where you want to go."
THE BOTTOM BUNK
In their final days, young patients like R.J. often know what they want. Disproving a common misconception, the children are aware they will soon die and have specific concerns about how and where.
Dr. Nancy Hutton, a Hopkins pediatrician and co-director of the compassionate care program, was surprised when she interviewed children about what was important to them at the end of life. Delving into issues like resuscitation and treatment preferences, she discovered feelings that had been bottled up.
One adolescent patient specified that she wanted every aggressive treatment, including a ventilator, as long as there was even a 1 percent chance she might recover. Others decide they're done.
Kelly Petrlik wrote her parents a letter, saying she wanted to stop antibiotic treatments for her cystic fibrosis. The Woodbine teenager revealed that, for some time, she had only been going through them for her family. Her mother had noticed how she pepped up for her father and grandparents, how she put on a good front. But she was tired. Her parents agreed with her. Kelly died a few weeks later, in the summer of 2002, her family gathered around her bed at Hopkins.
R.J. had already helped set up limits on his care, paring back to antibiotics, fluids and pain medicine. He had also said he wanted to die in Pocomoke City, at home, in his bottom bunk. That was something Michele wished she could have done for her son. She discussed it with Dr. Higman and Elizabeth Reder, the Hopkins bereavement coordinator. But emotionally, like many other parents, Michele didn't feel she could handle her son dying at home.
There were practical reasons, too. To take R.J. home, Michele and her family would have to leave the place that had cared for her son for so long. It meant she would have to do much of the medical care herself, in a house that wasn't well-equipped.
Many parents don't accept hospice care because they equate it with giving up. Insurance policies require a prognosis of only six months to live. They also stipulate that the patient must stop any curative treatment for the illness. Yet for some of these kids that kind of treatment, like a blood transfusion, can be palliative, bringing them a better quality of life.
Another problem is the difficulty of finding hospice care for children. With the number of children's deaths relatively low and many families opposed to the concept, there isn't much of a market for it. Citing a lack of expertise, most adult hospices won't take children as patients. Health care workers who are willing to deal with dying adults also say that, emotionally, they are reluctant to care for dying children.
All told, only about 1 percent of dying children get hospice care. Usually, it is very late. One local hospice nurse described going to a home to start a new case. She talked with the parents in the kitchen, and then they took her upstairs to meet the child. By the time they entered her bedroom, their daughter had died.
ANGELS WITH NO WINGS
R.J. had been motioning and talking, as if conversing with someone at the end of his bed. When his mother asked what he was doing, sometimes he didn't seem to hear her, or wouldn't answer. But eventually he told her he was talking to the angels. It is something nurses and doctors say children often tell them.
In R.J.'s case, he said the angels had told him the cancer was all through him, something that would later be proved accurate on autopsy. And he said the angels were picking at the tumors, trying to heal him.
Five days before R.J.'s death, when the family's favorite hospital chaplain, the Rev. Salvatore Livigni, arrived, he hugged Michele and put his hand on R.J.'s head. Then he took out a box, carefully unwrapping a porcelain statue. It was an angel, one of hundreds the priest has given to sick children at Hopkins in his five years there.
Holding it up, Father Sal, 69, turned the statue side to side, so R.J. could get a good look. Then the priest leaned closer to him, inquiring earnestly. "Do the angels look like this?" he asked R.J.
R.J. shook his head no.
"Do they have wings?" Again, R.J. shook his head no.
"What do the angels look like?" R.J. didn't answer. A few moments later, the boy said something, but his speech was so garbled that even after four tries, Father Sal couldn't understand him.
Sighing, Father Sal said, "He's an angel himself."
In those last days, doctors were balancing R.J.'s medical problems with his looming death. Solving one problem would create another. The cancer had grown so much in his mouth and throat that he could barely open his mouth to chew, and when he got even a little food in, it fed the tumors. Doctors couldn't give him nutrition in fluid form because that would mean more swelling in his face. Sometimes that swelling got so bad around his cheeks and eyes that he couldn't see.
His pain was getting worse. He kept calling his mother, motioning to his abdomen, then his arm. When the resident sketched a quick picture of the body, asking him which part hurt, he circled his whole body. They gave him more morphine. His mother was growing frantic.
"Is it hurting really bad, Baby Bear?" she asked.
That night, July 20, his blood pressure was plunging, and he cried out in his hoarse voice, "Mom, help!"
He was trembling. His eyes rolled back in his head. "Help me. Help me."
"Help what, honey?" Michele said, panicking. "I don't know what to do." She fiddled with his "trache," the breathing tube in his throat, with his suction tube. She put a hot pack on his face. He shook his head no. He kept moving around in the bed, reaching out his long arm to her. "Mom! Mom!"
The red numbers on the monitor hanging near the door started to flash. His oxygen level, tracked from the monitor he wore on his finger, had fallen too low that night. She was afraid to hold him, just like when he was a newborn with a collarbone broken during delivery.
Michele was confused, her voice breaking. "I thought they were quiet and peaceful."
SLEEP, SLEEP AWAY
Somehow, when death comes, many parents think it will be calm. But like so much around a child's dying, little has been said about what the final moments would look or sound like. Some doctors call this stage the final crescendo. It is the pace of death.
Dr. Joanne Hilden, a pediatric oncologist at The Children's Hospital at The Cleveland Clinic, wrote a book to give parents the basics, after she'd talked to several families about what they wished they'd known. For example, one couple didn't realize that putting their child on a ventilator meant he would not be able to talk with them.
Hilden explains that near death, children may be restless, agitated or have seizures. Others get the hiccups. Although some colleagues chastised Hilden for being too blunt in the 2003 book, Shelter from the Storm, she said many parents reported that it helped them.
Many parents either don't or can't grasp how close their child is to death. In a 2000 study, Dr. Joanne Wolfe of the Dana-Farber Cancer Institute found that parents' awareness that the child probably wouldn't be cured lagged behind the physicians' by three months. And often even the doctors don't know, for as difficult as it is to forecast survival in adults, experts say it's tougher in children, because there are fewer studies about their often-rare illnesses, and their resilience makes for unpredictable courses.
When her critically ill daughter was in the hospital, Diane Irwin always had the sense that death was a week away. Irwin, who lives in Parkville, said because of that false idea, she wasted some of the last hours of her 4-year-old girl's life washing her baby blanket and searching hospital vending machines for Casey's favorite cereal. Now she wishes someone had alerted her to keep vigil.
Casey, who had cancer, died at Hopkins in 1998. Irwin said she is still haunted by her daughter's moaning in her last days. "I wanted her to sleep, sleep away," she said.
Now, she yearns for the chance she missed, to hold her daughter one last time. She dreamt once about how it might have been, that instead of being afraid to pick her up, she had cradled Casey and whispered in her ear, "I love you."
"The parents are crying out," Irwin said. "This could be so beautiful. This could be a gift."
Some of the children seem to sense when the end is near. Ryan King had been sick with leukemia for two years, and in late 2000, he was expected to live several more months. But one night, just before bed in their Glen Arm home, he called to his mother as she was about to leave his room. He thanked her for taking care of him. Ryan died the next morning.
She said she now believes he must have known he was about to die.
LET IT BE
By Thursday, July, 24, when Hopkins' pediatric oncologists presented R.J. with an honorary medical degree and a white coat, he couldn't stand the square of summer sunlight coming from the window. Some children at this point can't even bear to be touched, said Reder, the hospital's bereavement coordinator. They're cocooning, pulling inward.
"I am ti-red," he sputtered.
After the days of agitation and restlessness, R.J. had become quiet and still. His skin looked duskier. His jaw and face, so swollen and hard before, had shrunk down. It made his eyes look bigger, bluer.
For R.J., through the palliative care team and his physician, there was a plan. Nurses had a list of people to call when the end got near. Counselors were available for Michele and her family.
It seemed that everything was falling into place. His mother was playing country gospel music, and some of his favorites, like the Beatles' "Let It Be." The Catholic chaplain, Father Sal, showed up to tease and pray with him, and that night, his grandmother came bustling in the door.
"Grandmom's here, love!" Carol Wisnom called out. She brought a container of homemade mashed potatoes and snapshots of his dog, Muffin, and the family's other dog, Ladybug. R.J.'s swollen lips moved in and out. It was his way, Michele said, to blow his grandmother kisses.
If his grandmother and sister had known it was the last night, they wouldn't have gone back to the Ronald McDonald House. If his mother had known it was his last night, she would have stayed up and talked to him until morning. But she didn't, and he became restless again. He kept talking about his white coat and honorary medical degree. He wanted to make sure his mother had told some of his favorite physicians and nurses.
"I'm the youngest doctor in history. I'm younger than Doogie Howser," he told his mother, referring to the television character.
The nurse gave him Benadryl to help him settle down, and he and his mother slept. When Michele awoke on her fold-out chair at 5:15 a.m., a resident was checking R.J. His body was twitching.
"Ronald Joseph Frank Voigt," his mother remembers saying, her voice rising, "answer me. You're scaring me." But that familiar call couldn't reach him this time. He kept staring straight ahead.
Michele had already assembled CDs she wanted him to hear, and she put on "Amazing Grace." She held him and sang to him. A young physician, on her first night supervising several floors of children, found herself chiming in. R.J., she said, was calm, comfortable. The room had a sense of serenity.
"It seemed like everything was all right in the world, like it was the way it was supposed to be, and maybe it was, for that brief moment in time, because a mother was loving her son," said Dr. Lola Stavroudis. "When you see something that pure and beautiful, it gives you hope for the rest of us."
His grandmother, his sister, Kimberly, and two close friends arrived, and one by one, they told him how much they loved him, that he could go.
"I told him I could not stand to see him suffer no more," his grandmother said shortly afterward. Then it was up to his mother. She'd heard the tales of other dying children at Hopkins, the ones who managed to stay alive for their parents. Dr. Higman had told her that R.J. was probably hanging on for her. Now, as Michele lay at her son's side, crying, holding him, she looked into his face.
She said she could see he was holding on. "I knew it was for me," she said. And this last hour of R.J.'s last day, July 25, 2003, she summoned the words. She told him to go with the angels.
A few minutes later, as his breathing became shallow, Dr. Stavroudis walked up to his bed. Part of her hoped she'd hear a heartbeat; part of her didn't. She listened. She bowed her head. For the first time in her career as a physician, she uttered the words. "I'm sorry, he's gone."
It was 7:37 a.m.
Within an hour, the blinds were pulled up, the lights unplugged on the little tree. A nurse stood on either side of R.J. One warmed his hand between her palms, so she could make one last hand mold. The other, Brigid Gilmore, his favorite, dipped a washcloth in warm water and rubbed it with Ivory soap. She gently wiped his cheeks and cleaned his arms, his legs, every last finger.
The machines had been turned off. It was quiet, so quiet, except for the splashing of the water and Gilmore's voice, as she worked with the other nurse to carefully pull out the needle in his chest, the one he hated.
"Last one, R.J."
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