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.
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.
Part 3 of 4: Final Choices
Learning how to say goodbye
As R.J. Voigt confronts his impending death, so must his mother. For the families of terminally ill children, there are no guidelines for letting go.
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