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.
"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.
Part 1 of 4: Never Give Up