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.
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.
TO THE END
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."
About the series
In preparing these articles, The Sun relied on medical records, R.J.'s personal journals and interviews with family, friends, physicians, teachers and others.
The Sun received permission from R.J., his mother, Michele Voigt, and the Johns Hopkins Children's Center to be present during the last four weeks of R.J.'s life, except, at his mother's request, his death.
Most of the events described in this series were witnessed by the reporter and photographer. In addition, 15 families who have lost children, as well as more than 70 health care professionals, were interviewed.
> Part 1: Never Give Up
> Part 2: The Angels are Coming
> Part 3: Final Choices
> Part 4: Aftershocks
> More photos and videos from the series
Part 1 of 4: Never Give Up