Buying time at a heavy price

Treatment gives R.J. Voigt an additional year of life -- and intense pain. Across the country, children and those who care for them struggle with hard choices as death nears.

December 20, 2004|By DIANA K. SUGG

The summer storm had been brewing for hours. From his hospital bed, R.J. Voigt looked out the tall window and watched the lightning streak across the gray sky.

"One Mississippi, two Mississippi," the 12-year-old counted, waiting for the thunder he knew would come. The loud, rattling storm would be there soon, but for now, it was four beats away.

In that corner room at the Johns Hopkins Children's Center, a junior microscope and comic books were kept near the oxygen equipment. In the closet, medical supplies and R.J.'s fudge stripe cookies were stacked side by side. The plastic line that fed R.J. pain medicine wound through the arms of a stuffed animal.

R.J. and his mother were in a seesaw world. But as much as their lives were different from before, in some ways they had managed to make them the same. The air conditioning was running cold, the way he and his mother liked it. R.J. was in his Spiderman sheets, fiddling with a video game. Michele Voigt was buzzing around the room and dusting, humming to Motown music.

Before R.J. got cancer, his mother couldn't even stand to see a splinter pulled from one of her children's fingers, and R.J. hated needles. But like so many other families, when confronted by an aggressive disease, they found themselves going down a road with few exits.

At crucial points, they had to choose between death or another treatment. R.J. didn't want anything that would hurt him, and his mother didn't want him to suffer. But when it came time to make the choices, they wound up saying the same thing so many others do: yes.

For three years, at three hospitals, doctors had given him more than a dozen cycles of chemotherapy, blasted his nasopharyngeal cancer with radiation, and cut out tumors from his head and neck. That push gave R.J. about one more year of life.

"He's had a lot of treatments. He's been through hell," Michele said. "But he's also had a lot of good times."

Tough trade-offs like this have become common at children's hospitals across the country. Roughly half a million kids have complex life-limiting conditions. In earlier years, many would have already died, but aggressive treatment has extended their lives.

Physicians, ethicists and researchers are starting to look at what this time means for the children and their parents. People are also acknowledging the emotional drain on the caregivers.


In that extra year, R.J. and his mother were far from their home on the Eastern Shore, living in the hospital or the Ronald McDonald House, where they stayed when he wasn't an inpatient. Over the months, R.J. was able to enjoy some of the things he loved. During the heavy snowstorm in February 2003, he clambered through the drifts to make a snow angel.

R.J. put on his first roller skates, and, at a festival at Camden Yards, he played darts and the bean bag toss. On that day, his aim was good. He collected a slew of prizes.

But he had been thinking about his death, and it became apparent the night his mother and doctor told him that the cancer had spread to his lungs. In late May, R.J.'s pediatric oncologist, Dr. Meghan A. Higman, looked at Michele and said flat out, "He deserves to know the truth."

Together, they walked to R.J.'s bed. His mother began. "They don't think the chemo is working."

R.J. cut her off. "It isn't," he said, matter-of-factly. "I don't want it anymore. I'm done."

"You know if we do nothing," his mother responded, "you're going to die."

The boy blurted out that he wasn't scared. He told them he was going to heaven. He asked to be buried next to his Great-uncle Wayne.

Then to the surprise of Michele and Dr. Higman, he began to write down other things he wanted. No more oral chemotherapy, nothing that would cause him bad stomach upset or diarrhea, and nothing that would hurt his heart, a side effect of some of his medicines. He cried a little.

Later that night, R.J. and his mother went to the hospital's playroom, where he challenged her to a game of Truth or Dare. R.J. dared her to pour Pepsi over her head.

Michele, 36, was a prankster herself, and she figured it would make him smile. So she dumped the 16-ounce bottle over her head. Then she dared him to wash his face in his orange Jell-O. As he did that, he was laughing.


For several months, Dr. Higman had been trying to help Michele come to see what R.J. had already grasped.

Dr. Higman, 39, earned her medical degree after getting a doctorate in molecular biochemistry. She was at ease in the lab and with the patients. She spoke as practically as she dressed, her T-shirts tucked into jeans, finished off with fresh white sneakers. When she had something tough to discuss with Michele, she'd come by R.J.'s room and say, "Come walk with me."

They'd push out the doors of the unit and thread their way into the sunlight, on the grass, under the trees. It reminded Michele of home in Pocomoke City.

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