Barbara Britt, 62, a nurse care manager at Children's Hospital Los… (Francine Orr / Los Angeles…)
Barbara Britt has a song in her head, a campfire tune that she learned years ago.
I'm a little piece of tin.
Its silliness, she knew, would keep her upbeat for the appointment she had with James Lee, the 12-year-old with a tumor in his brain stem.
Nobody knows where I have been.
James was one of nearly a dozen patients scheduled for today's clinic, and Britt, a nurse care manager at Children's Hospital Los Angeles, has found that songs keep her from becoming overwhelmed by the lives of her patients and their families. It's a strategy she's learned from 40 years in the company of children with brain and blood cancers.
Five months ago, James, a shy sixth-grader with a book always in hand, had come to the hospital complaining of headaches, and today, after six weeks of radiation, he was about to begin chemotherapy.
They sat in a narrow exam room with James' stepmother, Suk Young Kim, who understands a little English, and as they waited for the Korean interpreter, Britt began to explain the dosages and the side effects of three medications. Kim spoke to her son.
"She wants to know why you're telling me this," James said, relaying the question.
"Because you get to be a help to her," Britt said. "You're old enough that you need to know what's going on with you. Right?"
James put down the novel he was reading, "So Totally Emily Ebers," and Britt explained the side effects of the drugs.
"But what else do they do?" he asked.
"Well, all together these three medicines help your tumor no longer grow."
"Isn't it also to make it disappear?"
Britt had to be honest. "We aren't sure if we can make it go away."
"That would be really good if you could."
Yes, Britt thought, but the tumor is incurable and he needed to know that. For many children, treating a brain tumor means arresting its growth and teaching them how to live with it for the rest of their lives.
"You know how well you feel now?" she asked.
"I feel pretty good," James said, sounding tentative.
"So it wouldn't matter if that tumor stayed the same size forever," she said. "That would be good, wouldn't it? Because you feel good now."
A knock on the door interrupted them. The interpreter stepped in, and James went back to his book.
Britt repeated the instructions for the boy's medications — three to be taken at night, one in the morning and one an hour before all the others — to Kim, who was eventually overwhelmed.
"Why is she crying?" James asked, looking over the top of his pages.
"Because this is a lot to take in," Britt said, "and this is what adults do when they love someone."
The clinic on Wednesdays is Britt's chance to escape the onslaught of daily emails and spend time with her patients.
Dropping into one exam room after the next, she got a hug from Maddison Franks, a high school senior in for a new round of chemotherapy. She saw how 12-year-old Jordan Johnson, sporting a black fedora, was tolerating his radiation, and she caught up with Tom Plunkett and 5-year-old Luna, whose recent scans showed no recurrence of her tumor.
As a member of the hospital's neural oncology team — comprised of doctors, nurses, social workers, psychologists and researchers — Britt, 62, coordinates various facets of care, overseeing the medical, social and psychological effects of both the illness and treatment.
Jonathan Finlay, director of the neural oncology program, has worked with Britt for nine years. "Her skill at reading families — reading their emotions, where they need support and knowing when it is time just to listen — those are facets of her character that make her unique in this effort," he said.
In meetings between patients and doctors, Britt often asks questions, simplifies medical terms and interprets recommendations. She understands how frightened most parents are when they first encounter diseases with names as intimidating as medulablastoma, astrocytoma, oligodendrogliomas.
"They are immobilized as if the floor had been ripped out from under them," she said. "My job is to help them realize that the floor is still there."
The challenge is to strike a balance between the discomfort of treatment and the preservation of daily routines. For Britt, the names of the tumors, even the symptoms, matter less than the fact that the disease changes a child's life forever. In her mind, what best defines a brain tumor is whether it leaves room for hope or not.
"A doctor treats disease, and a nurse treats patients. Barbara treats families," said Mark Maxwell-Smith, a 65-year-old television producer who for almost 15 years has joined Britt at a summer camp for children with cancer.
She keeps files on 180 patients; some are infants, some are in their 20s, most are in between. Most are also in remission. It's the new diagnoses and recurrences that keep her on the phone and answering emails until late at night.
"Why does my daughter have these stretch marks?" It's a side effect of the steroid she's taking.