Nurse manages her pain and young cancer patients one song at a time

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.

“Is this headache serious?” Probably not. See what Tylenol does.

“What are the numbers?” The hemoglobin and platelets are up, but the white count is the same. No transfusion is necessary.

Britt’s days are often drawn out by consultations and paperwork: an absence slip for a school, a family leave request, a death certificate for the mortuary, a petition to an insurance company, an authorization for the pharmacy.

Her desk is in a windowless room shared with up to three other nurses. Above her on the wall are certificates, diplomas and photos of children surrounded by pine trees, snapshots from the camp in Idyllwild where they go to forget they have cancer.

Files compete for space with cans of diet Coke and vases of roses from home, a 100-year-old farmhouse in Camarillo that she rents with five others — her sister, a niece, a nephew, his girlfriend and their baby. Describing herself as a professional aunt, she has never been married and has no children. Her garden and her Scottish terrier, Max, are her distractions.

When she started — a 1971 graduate of Cal State L.A. whose first job was at L.A. County/USC Medical Center — nearly all her patients died, and as upsetting as it was, she learned that in order to do her job, she had to keep an emotional distance. Today the outcomes for children with brain tumors are better, but that’s little solace.

“The bad can be so bad that they count for more,” she said.

A Presbyterian, Britt believes in a God who is good but not omnipotent. Yet she knows that faith offers little comfort for parents who leave the hospital without their child. Often on her hourlong commute home, the songs that she sings to herself are requiems.

::

The clinic’s last appointment was at 3:30, and on a day of mostly good news — tumors shrunk, scans clean, chemo started — Britt braced herself for seeing Jesus Garcia, the funny, proud, polite and confident 19-year-old she first met three years ago. The song that came to her was the hymn, “Be Still, My Soul.”

Thy hope, thy confidence let nothing shake ….

Garcia sat alone in an exam room. He had taken the bus to the hospital, an hour-and-a-half ride from his home near Leimert Park.

All now mysterious shall be bright at last.

Last week Garcia complained of headaches and nausea, and Britt and his doctor, Girish Dhall, feared that his tumor was back. A new scan confirmed it.

“After so many surgeries, more surgery would not be helpful,” Dhall said. “There are other medications we can try.”

Britt knew that Dhall wanted to give Garcia a little hope, but she also had to make sure Garcia understood the serious nature of his disease at this stage. The odds of surviving were extremely long, and short of a miracle, there was little they could do for him.

“It sucks, Jesus,” she said, pulling closer, placing a hand on his knee. “Your tumor looks bigger than it ever did, and it doesn’t look like a very friendly mass.”

“You’re scaring me,” he said.

Dhall listened as Britt continued. “Yes, I know,” she said, “and there will be come a time when you will not be able to care for yourself. People die of these tumors before they grow old.”

“Who wants to be old?”

“This is scary stuff,” she said. “Damn it, Jesus, you’re one of my favorite kids.”

He didn’t say anything.

“What can we do for you?”

He asked if she would call his mother who had moved to Idaho with her boyfriend, leaving Garcia and his two older sisters on their own.

“She will cry,” Britt said.

“I could cry too, but I’m holding it in.”

“Will she come back to help you?”

“Hopefully.”

Experience has taught Britt how to help her families and patients set the priorities in their lives and to keep their expectations for the future realistic.

She said goodbye, leaving Garcia and Dhall alone. She was desperate for a Coke, an Excedrin and a place to cry, but just past the nurse’s station, she saw Parker Brockway and her mother, Kathy Kelley.

“I have to see Parker,” Britt said. “Perfectly perfect Parker.”

The song in her head was “Buddies and Pals.”

You and me are gonna be partners…

Nearly six years ago Parker was diagnosed with a tumor in her cerebellum. Since then, she has had 13 surgeries and is in her third round of chemotherapy. She had come into the hospital today for a blood test and for a treatment to help ward off pneumonia.

Standing beside the 7-year-old with a pageboy haircut and dimples, Britt lifted up her pant leg so they could compare their shoes. Parker’s pink sandals, it was decided, were far cuter than Britt’s black and gray flats.

Britt reached for Parker’s hand, and together they walked down the hall.

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