Faith Tittle was a “completely normal child” until one month after she turned 4, notes her mother, Deborah Howe of Odenton, Md. The usually active child started suffering fevers, fatigue and frequent vomiting. Her pediatrician suspected a virus but after a few more days with no improvement in her symptoms, Howe brought her to the emergency department at a hospital in southern Pennsylvania, where she was visiting relatives. There she discovered her daughter had leukemia. If that diagnosis wasn’t bad enough, Howe then learned firsthand that the very treatments designed to curb the cancer’s growth—chemotherapy, radiation therapy and two bone marrow transplants—would take a toll as well.
“She was feeling very sick and extremely weak, she didn’t want to get out of bed,” says Howe. “It was hard to get her up and moving around.”
This is where pediatric physical and occupational therapists step in, with the goal of improving patients’ strength, balance and endurance, as well as fine motor and cognitive skills, to restore their previous level of independence. To facilitate independence and a smooth transition back to the community and school, occupational therapists help patients focus on daily living skills like caring for themselves, brushing their teeth, and getting dressed. But the therapists’ goals are challenging as patients like Faith may suffer severe deficits from weeks and even months of inpatient and outpatient cancer treatments, explains Hallie Lenker, a physical therapist at Johns Hopkins Children’s Center.
“Facing balance problems and body weakness that arise during cancer treatment, they experience a lack of energy and ability to participate in the things they would be doing in the community,” says Lenker.
Indeed, Deborah Howe notes that her daughter had to relearn how to walk after her second bone marrow transplant. And it was the three-times a week physical therapy that got her back on track.
“It took a while but she was really tough, and in a couple of months she was walking again on her own, and able to hop and run a little bit,” says Howe. “The physical therapists were extremely helpful in figuring out ways to motivate her.”
Not too long ago, the focus of pediatric physical therapists was mostly on helping kids survive rather than on getting them physically ready to resume their normal daily lives. But with treatment advances and improved outcomes, physical therapists at Hopkins Children’s Center are doing just that. Part of their work involves tracking deficits caused by cancers and cancer treatments to better predict the type of deficits patients will experience. That knowledge helps them tailor physical and occupational therapy to the patient’s individual needs.
“Of course, we’re thankful when these children are doing well medically, but we haven’t thought enough about the deficits these treatments cause in strength and endurance,” says physical therapist Julie Quinn. “Now we’re looking specifically at measures for balance and endurance, and collecting data to determine specific progress for patients who are in and out of the hospital. That will help us develop a more cohesive program for both inpatients and outpatients.”
“We’re really trying to find the best way of identifying the needs of these patients and how and when we can help them,” adds Lenker.
Having a comprehensive physical therapy (PT) and occupational therapy (OT) program for both pediatric inpatients and outpatients in the new Charlotte R. Bloomberg Children’s Center building helps, notes Quinn. Physical and occupational therapists are familiar with the patient’s in-hospital experience and their specific PT/OT needs, which helps ensure a seamless transition to outpatient care. Also, PT and OT appointments can be scheduled easily to coincide with follow-up medical appointments.
“When I worked in the community as a physical therapist, I wasn’t familiar with any of the treatments or what might be happening medically with the patients,” says Quinn. “So especially here at Hopkins, where we’re on the cutting edge working with a lot of these childhood cancers, it’s extremely helpful that we have good collaborations with our clinicians and access to the medical records. I feel we have an edge here because of our familiarity with complex medical issues.”
As challenging as physical therapy has been for Howe and her daughter—“A lot of times I wanted to pick her up and carry her away,” she says—the mother agrees that a comprehensive inpatient/outpatient program staffed by experienced physical therapists specializing in working with children with cancer is a big plus: “It’s nice for your child to have the same place for inpatient and outpatient care, to have that familiarity and not have a lot of change going on.”For more information call 443-287-9262, or visit the Pediatric Physical Medicine & Rehabilitation website.