Impossible to imagine

When a child is terminally ill, Hospice can help families cope

When a child is terminally ill, Hospice can help families cope

May 10, 2002|BY KATE COLEMAN

"Are you sniffing?" Bill Miller asks his son, Tyler, as the 6-year-old puts his nose on his dad's hand, moves it up his arm and brings it to rest on his neck as he leans into an embrace.

Tyler doesn't answer. He didn't hear the question.

A rare genetic disorder has taken his hearing - and his sight. It will take his life.

In mid-September Tyler was diagnosed with adrenoleukodytstrophy, which is damaging the myelin sheath - the fatty covering of nerve fibers in his brain - and the functioning of his adrenal glands. His prognosis is poor. Doctors told Miller and Tyler's mom, Debbie Curry, that their son will live for one or two years.

Miller had first noticed a problem when he and Tyler were on an outing at Fort Shenandoah, Va., in August. Crossing a footbridge over a creek, Tyler smacked right into the railing - as if he didn't see it.


Tammy Mariner, Tyler's Hickory Elementary School first-grade teacher, almost didn't recognize Tyler on the first day of school last August.

He had been the top reader in her Head Start class a couple of years earlier - hand always up, always involved, she says. Now his eyes looked glazed. He was struggling with simple things like cutting with scissors. He was hardly able to write his name.

"It's the hardest thing I've ever had to face as an educator," Mariner says of being the one to call attention to the child's problem. The school tried to do some home instruction for Tyler, but it wasn't worth the frustration to him, Mariner says.

Tyler's classmates made him cards while he could still see. They made him audio tapes while he could still hear.

Bill Miller still takes him to school for visits every couple of weeks. Tyler's friends were a big part of his life, he says.

At the end of November, after four days of full-body radiation and four days of chemotherapy, Tyler had a bone marrow transplant at Johns Hopkins Hospital in Baltimore.

Still able to understand and speak well then, he asked his parents if it would make him better. He also asked questions of every doctor and nurse who treated him. "He just wanted to know," says Curry.

Tyler's body rejected the transplant. He ran a 106-degree fever for four days, his body broke out in a red rash, his blood count crashed and he swelled up like a toad, Miller says.

Tyler was sent home on Christmas eve, and although he was back for a few days because of infection, there was nothing more that could be done to help him in the Baltimore hospital.

Although his parents accept the diagnosis, they still have hope for their son, Curry says. They want to know what's going on, but she says she doesn't want an exact prognosis.

The family is taking each day as it comes, says Dawn Johns, community liaison with Hospice of Washington County Inc.

Bill Miller contacted the organization's Hagerstown office on January 31.

Hospice, which has been operating locally for 21 years, offers comfort and support to patients and their loved ones experiencing a "life-limiting" or terminal illness.

Vincent A. Cantone, M.D., has been Tyler's pediatrician since the blue-eyed boy was a toddler. It has been hard for him to see Tyler regress so quickly and to see his family suffer along with the boy.

"Every once in a while you walk out of a room, you have to breathe almost a sigh of pain. Tyler is one of those," Cantone says.

He has recommended hospice care for several of his patients. "Hospice has helped," Cantone says.

The hospice approach is interdisciplinary. Tyler and his family have a team caring for them.

The family's situation is unique. Curry and Miller have not been together as a couple since Tyler was 1 1/2 years old, but they are cooperating and sharing the care of their child. "He's our little boy," Curry explains.

The family's first meeting with hospice - talking about the "bottom line" - was very hard, Curry says. But hospice has helped.

"It got us closer," she says. She's glad Miller contacted the organization.

"Bill and Debbie are remarkable people," says Eloise Plank, social worker with Hospice of Washington County. Old family conflicts had to be acknowledged and resolved. "Tyler is our focus," Plank says.

Tension would rob him of the comfort and security he needs.

Curry had to return to work at the beginning of March, so Tyler now lives with his dad who is on disability leave from his job. Curry picks him up to take him to her home for a few hours in the evenings.

Melanie Clifford is the registered nurse managing Tyler's hospice care. She visits a couple of times a week and checks in with "comfort calls" by phone. Clifford has accompanied the family to the pediatrician's office, monitors Tyler's medications and is on call when the family needs her.

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