Even though Kaiden Seals weighs only 9 pounds, he is—let’s face it—a chick magnet. When the 4-month-old turns his radiant smile onto women in his proximity, they melt like butter in an oven.
This morning, Kaiden works his charms on his mom and Tricia Mamer, RN, as they discuss the best way to care for a tube that protrudes from his tiny chest. Called a central line or central venous catheter, the tube is actually a lifeline through which Kaiden receives the blood products, medications and fluids he needs to battle hepatoblastoma, a rare type of liver cancer. Nearly every child undergoing cancer therapy receives a central line, which is surgically inserted into one of the large veins leading to the heart.
Mamer, a line nurse at St. Jude Children’s Research Hospital, meets regularly with Kaiden’s mom to help her master the nuances of caring for the line. Gently, they peel away the tape covering the tube. Mamer tempers her instructions with humor, as Kaiden wriggles and coos, first kicking his feet and then flailing his arms.
“I need to grow another hand,” jokes Kaiden’s mom, as she attempts to restrain her squirming son. “Once I figure this out, the goal is to have me do it by myself.”
Mamer and other St. Jude line nurses give one-on-one instruction to caregivers, offering advice and encouragement, building self-confidence and answering thousands of questions. With each appointment, the parent learns a little more, until finally the caregiver becomes the expert.
“As line nurses, we get to see almost every patient who comes through the hospital,” Mamer says. “We get to empower parents who may feel scared. It’s a wonderful feeling to be able to show them how to take care of their child’s line; to give them the knowledge and the resources to be able to be proficient. It gives them a way to take control during a time when their world seems to be spinning out of control.
“I love to see them six months later and hear a mom say, ‘I can’t believe I was ever nervous about doing this.’”
What’s my line?
When it comes to central lines, parents are not the only ones who need education and encouragement. The hospital’s Child Life specialists handle that duty for patients.
“Have you heard the word ‘line’ today?” Child Life Specialist Jessica Goddard asks a young patient. Goddard uses a doll to show the child what a central line looks like, inviting the child to touch the tube extending from the doll’s chest.
“I want them to understand that it’s not going to hurt the doll to manipulate the line, and I want the child to feel as comfortable as possible before they go in for surgery,” Goddard explains.
Medical play unfolds differently, depending on the patient’s developmental level. One little boy asked Goddard if his stuffed dinosaur could have a line, too. After checking with the child’s parents, Goddard performed an operation on the toy.
“The little boy pretended that he was the parent, and I pretended I was the surgeon,” Goddard recalls. “I cut a hole in the dinosaur, poked a line in there and sewed it up.”
Her colleague Jaime Moran uses vastly different techniques to broach the subject with older children and young adults. Today, Moran meets with a 16-year-old boy who is about to receive his central line. To ensure that he understands the upcoming operation, Moran quizzes him on the concepts they discussed during a previous conversation.
“What’s the goal of having the line in your body?” she asks.
“It’s so I won’t have to be stuck or have an IV all the time,” responds the young man, who is eager to demonstrate his knowledge.
“Exactly! You’ll have fewer pokes,” she replies. “The medicine they put into your line travels directly to your heart, where it is pumped throughout your body.”
Moran explains that in addition to giving chemotherapy, fluids, blood and platelets through the line, medical staff can also collect blood samples. At the end of their relaxed banter, the teenager waves goodbye, proud that he has mastered the information and comfortable with the upcoming procedure.
Central lines on trial
Nearly 3 million central lines are used in the U.S. each year. A critical part of cancer treatment, they allow for easy administration of fluids and medications. But these lines also increase the risk of bloodstream infections. Worldwide, about one in four patients with cancer will have at least one such infection.
If a child has a central line-associated infection, the possibility of having a second such infection is significantly higher than it was for their first infection. What can be done to reduce that risk?
Josh Wolf, MD, of St. Jude Infectious Diseases, is trying to answer that question. He is heading a randomized clinical trial to use a new way of treating and preventing central line infections called ethanol lock therapy. “We don’t just want to help kids at St. Jude; we also want to identify a treatment that will help kids everywhere,” Wolf says.
He has developed a clinical trial called ETHEL that involves injecting a small dose of highly concentrated alcohol into the central line, allowing it to remain there for a while, and then drawing the alcohol out of the line.
“The idea is that it’s able to penetrate into the bacteria that stick on the inside of the line and hopefully eliminate them in a way that antibiotics just don’t do,” Wolf says.
As part of standard line care, clinicians and caregivers regularly flush the central line with a sterile solution. This is done to prevent bacteria from accumulating inside the catheter. Once bacteria colonize inside the line, they are able to adapt so that antibiotics are not effective. The standard treatment for an infection is to administer antibiotics through the line for 10 to 14 days. But that treatment has a 50 percent failure rate over six months.
“It takes about 1,000 times the concentration of antibiotics to kill one of those bacterial cells as it does to kill a normal cell in the test tube,” Wolf observes.
ETHEL is open to St. Jude patients who have already had a central line-associated blood stream infection. In studies at other institutions, scientists noted side effects such as dizziness or nausea when they used ethanol in central lines. The researchers at St. Jude have not encountered those problems.
“We measure the dose much more carefully than they did in other studies, so rather than giving a standard dose to everyone, we give a dose that’s determined by the actual volume of the patient’s line,” Wolf explains. “Also, instead of flushing it, we draw it back out.”
Wolf plans to expand the clinical trial to other institutions, so that he can recruit 138 children to the study.
Study within a study
Twelve-year-old Angiel Maosa is an imaginative girl whose conversation flits like a butterfly—touching briefly on one topic and then fluttering away to another subject. So it’s no surprise that she takes the same lighthearted and creative approach to her treatment. When Angiel participated in the ETHEL study, she conducted her own “clinical trial,” keeping close track of her data.“You know how kids taste saline when their line is flushed? I tried to determine whether you wouldn’t taste it if you had something in your mouth,” she explains.
“Angiel did multiple trials of each candy,” Wolf explains. “She tried each one twice and gave it a rating out of 10 in terms of the impact it had on reducing the taste. She created a poster of her findings. I was very impressed.”
And what did the data show?
“The best were mints and Jolly Ranchers,” Angiel reports, adding that bubble gum and jelly beans lacked the robust flavor necessary to mask the saline taste.
When Angiel enrolled in the ETHEL clinical trial, she had already endured two line infections during treatment for the bone cancer osteosarcoma. Her mom, Damaris, recalls that the procedure added only a few minutes to their usual line-care routine.
“An infection compromises a kid whose health is already compromised,” Damaris says. “If there is something that will help other kids in the future avoid line infections, then it was worth it to me.”
Abridged from Promise, Summer 2014