Not all smiles

Coping with the sadness a challenge to doctors who treat children

It doesn't look like the office of a man who occasionally has to sit down with a family and tell them their child is dying.

On a bookcase sits a brightly colored jester's hat. On the floor lie juggling clubs.

Much of his job involves curing and putting smiles on the faces of children with cancer. But such successes are not always possible.

"I've had a couple of bad stories just these last couple of weeks -- actually several," he said on second thought.

Last February, Freiberg diagnosed 20-year-old Jason with a rare type of bone cancer. The type of tumor does not respond well to chemotherapy, so doctors amputated his leg above the right knee.

Because the cancer might have spread to other parts of his body, he went through eight months of chemotherapy. At the end of the treatment, there were no signs of more cancer.

"He came back to clinic last week looking great. He came in with his twin sister and his mom and his little nephew," Freiberg said. "He was starting to get more active and maybe looking for a job. We were talking about how he learned to drive with his left foot because it was his right foot they removed."

"This is a 20-year-old who feels perfectly well and was getting along very well with his prosthesis," he said. "But to be honest, this tumor is going to kill him. He's got a few months. We're trying a few things . . . but this is a rare tumor that doesn't respond to chemotherapy."

Coping with these situations depends on a person's viewpoint, Freiberg said.

"Most new patients are leukemias or are things that are probably curable. You have the ability to talk to a family that's really devastated at that point and tell them this is not adult cancer. This is childhood cancer . . . and chances are that we're going to be able to cure your child."

"We just expect that some of them are going to relapse and some of them are going to die. And my attitude partly is that's going to happen whether I'm here or not. If I can make it better on these families, so the family can be intact when it's all over, I feel better about it."

"One of the things we try to avoid is blaming ourselves. There's no blame we take for something unfortunate happening to a child," he said. "We need to deal with that, but it's not our fault that it happened . . . If I didn't do it, who would do it?"

Fortunately, the doctors win more battles than they lose. But a few weeks ago one of Neely's patients died and another is terminally ill.

"I have this young lady I've been taking care of now for a year that has what will be a fatal illness. We've all known that all along, and our goal has been to make her feel as good as we can for as long as we can," he said.

The young lady Neely talks about is 3-year-old Rachel, who has a tumor in her adrenal gland that can spread throughout the body and does not respond well to treatment.

"I've gotten to know her and her family really well. Now she's getting worse and it's my goal to help her get through and help her family get through that," he said.

But Neely has his share of success stories.

A few weeks ago, a 16-year-old boy came in who had Hodgkin's disease, a type of cancer that lives in the lymph nodes. The lymph nodes are small glands throughout the body that house the immune system cells, he said.

"We sat down and talked about marriage and him having kids. I think the odds are pretty good that he'll be able to father children, and normal children," Neely said. "I have a fair number of patients who come back with their fiancée or child."

One of those patients is a 28-year-old woman named Beth, who Neely diagnosed with a potentially fatal disease similar to cancer when she was 8 years old. Three years ago she invited him to her wedding where he played the hammer dulcimer, which has small wooden hammers that vibrate strings, much like a piano.

Beth wanted him to play in her wedding ever since she was 9 years old, Neely said. Talking to her on the phone a few days ago, Neely learned she just had her first child.

"She's a survivor," he said. "I feel very rewarded, even though this is a tough field to be in at times."

When things do get rough at the medical center, Neely said he will do some research on cancer or participate in running the medical center.

"I can go into the lab and do some work . . . or I'll go home and play with the dog or maybe go out to dinner with my wife," he said. "In some ways, it's a battle out there. We lose a child and we're very sad about it, but we have others we're going to help."