Cancer. It's a scary word for anyone, but when the patient is a child, it conjures up especially devastating feelings. Luckily, for children diagnosed with acute lymphoblastic leukemia (ALL), there is light at the end of this long, scary tunnel.
Acute lymphoblastic leukemia is the most common form of childhood cancer. Thanks to advances in medicine, the five-year survival rate is greater than 90 percent. A typical course of treatment can last two to three years, and can include blood transfusions, bone marrow and stem cell transplants, and of course, multiple stages of chemotherapy.1
The irony of cancer treatment is that the cure often makes people sicker than the disease. In many cases, young patients can be in a hospital for over a month at a time, causing deconditioning. Kids' overall immune systems can be affected due to the immunosuppressive effects of the medications they receive. During part of their treatment, they can't go to schools, playgrounds and other places where children gather, as they are at risk for getting infections.
Toddlers -- ALL most often is diagnosed between the ages of 2 and 10, though there can be patients of all ages -- are hospitalized during peak times of gross motor development, leading to setbacks. Commonly prescribed steroids can cause weakness and pain. Chemotherapy drugs can cause peripheral neuropathy, foot drop and other changes in gait, balance, and cognition.
All of this is why physical therapy is such a necessary part of the care plan for these patients. "The side effects of chemo are the biggest reason we are referred," said Kristin Brown, PT, DPT, PCS, senior physical therapist, Hasbro Children's Rehabilitation, Providence, R.I. There are better responses and fewer long-term deficits the earlier patients start physical therapy. As such, pediatric oncology physical therapy is "an area that's really blossoming and getting more attention," Brown said.
Isabella Harvey, age 5, of Staten Island, N.Y., began chemotherapy at Memorial Sloan Kettering Cancer Center in January 2013 and entered outpatient therapy later that month. After initially needing assistance for sit-to-stand and stair climbing, and being unable to run and jump, she has progressed rapidly, according to Lauren Ward, MSPT, PCS, and Regine Souverain, PT, DPT, PCS (opposite page). Currently in the maintenance phase of chemotherapy, Harvey attends therapy once per month. "She is doing extremely well in PT and is close to discharge," said Ward. Photos by Kyle Kielinski
Putting the Patient First
At Hasbro Children's, Brown and her colleagues like to begin physical therapy before the child begins chemo, to get to know them. With inpatients, it is hit or miss, as sometimes the patient is too ill for therapy. As outpatients, during the third or maintenance phase of chemo, physical therapy continues. Therapists continue to treat patients on and off after remission.
"We're really addressing the side effects from the treatment," explained Lauren Ward, MSPT, PCS, pediatric clinical specialist, Memorial Sloan Kettering Cancer Center, New York. Ward works in outpatient pediatrics. Physical therapists work closely with the family and medical team to determine frequency of treatment. They may see a child only once a month for monitoring, or three times per week if they exhibit significant weakness.
"All the kids tolerate the chemotherapy differently. During evaluation we assess their strength, endurance, balance, posture, and sensation," Ward said.
Research has shown chemotherapy can have long-term effects on flexibility, balance and coordination. "We continue to see some of the kids after they finish treatment," Ward said. "We try to get them as strong as possible." Other patients may return to physical therapy years after they are in remission, to address impairments.
Ward's colleague Regine Souverain, PT, DPT, PCS, pediatric clinical specialist, works with both inpatients and outpatients. "We have taken a very proactive approach to all our pediatric patients," said Souverain. Even if they're not hospitalized, PTs see them when they come in for their weekly chemotherapy treatments. Physical therapists also follow patients admitted for bone marrow transplants, which are sometimes needed along with chemo to eliminate leukemic cells. "These kids are with us for a long time," she explained.
Souverain came to Memorial Sloan Kettering as a new graduate in 2007, wanting to perform some form of pediatric therapy. She was mentored by a colleague and learned the ropes of oncology physical therapy. Since then, she noted, "My interest has grown."
Before physical therapy school, Ward had a previous career as a pediatric nurse. "I wanted to work with children, but wanted there to be a medical aspect to it," she said. "It's a really special and unique population. It's a little bit of ortho and a little bit of neuro. We get to use all our skills."
At Hasbro Children's, Brown completed lots of consultations with inpatient oncology patients. Since she hadn't learned much about ALL in school, she had to self-teach. "It drew me in, just seeing the impact you could make on these kids' lives," she said.
Just for Kids
With inpatients, Brown's focus is getting them out of bed and moving. In terms of equipment, she's limited by what she can bring into patient rooms.
Outpatient is a different story. At Hasbro Children's and Memorial Sloan Kettering, physical therapists incorporate video games, exercise balls, bolsters, floor mats, exercise bikes, treadmills, stair climbers and other fitness equipment into sessions.
"We turn it into fun and games for them," explained Ward. "It's a really emotional time so we try and make this the fun part of their day." One young patient said that coming to physical therapy was the best part of coming to the hospital. "It's a bright spot in their day. We are allowing them to be kids," said Souverain.
Kids may race against their therapists or even fellow patients, an activity that works on gait and endurance. Running, jumping and heel-walking helps with foot strength and walking. Sensory retraining to correct deficits from chemo-induced peripheral neuropathy is another part of the therapy plan.
"Balance and coordination are huge for these children," Ward continued. A machine with force plates assesses their balance. Memorial Sloan Kettering sometimes uses a LiteGait for training. "We have a lot of kid-friendly things," Souverain noted. Swings and parallel bars assist with balance and proprioception, as does a sensory room with a bubble tube. The rock wall in the outpatient therapy gym at Memorial Sloan Kettering is a fan favorite.
"A lot of our kids have orthotic needs due to weakness and neuropathy," Ward said. There is a weekly prosthetic and orthotic clinic at her hospital where those who need braces and other orthotics can be seen by a certified prosthetist and orthotist. Bracing can help with foot drop due to peripheral neuropathy.
These patients experience frequent pain, and controlling those levels is crucial. The PTs work with the medical team to be involved in care from the onset. "We take a holistic approach," said Souverain. They are in frequent contact with physicians and nurse practitioners to receive orders and to discuss patients' progress.
Sometimes the oncologist will reduce chemo dosage if there's a significant change in status -- something the physical therapist can notice and communicate. "We work very closely with OT. There's a lot of overlap," explained Ward, as children are seen by both disciplines concurrently.
Brown noted that there is constant interaction between disciplines. Physical therapists participate in oncology rounds at Hasbro Children's, and they must clear inpatient treatment with nurses. She works closely with child life specialists, who can help facilitate PT goals. One child life specialist at Hasbro is also a musician who has played during physical therapy sessions to distract kids.
Beyond the physical benefits of therapy are the cognitive and emotional benefits. "There's a huge benefit in terms of their mood," said Souverain. Therapists incorporate age-appropriate cognitive skill lessons, practicing number and color identification and taking turns as part of therapy.
While it may not seem that way during the worst parts of treatment, for the majority of these patients, the promise of life as a regular kid exists. Brown explained, "Physical therapy helps the kids do what they were doing before they were sick. We're really focusing on participation and function."
What Lies Ahead
Physical therapists, patients and families who undergo this rigorous treatment must plan for the future. "When we write goals, we think about the next phase in the child's life," noted Souverain. "Success for the patients is them being able to participate independently in day-to-day-life."
Those measures of success are often determined by the patient's age. The chance to simply be a kid and interact with peers is a big motivator.
A goal for a young child may be getting off the floor without assistance, or playing without falling down. A pre-teen may want to walk through the mall with friends without getting fatigued. Older kids may want to return to sports. One teenage patient of Brown's had the goal of being able to tour college campuses.
Overall, the key question for therapists is, according to Ward, "What would make them happy?" Physical therapy can then be designed to improve function in accordance with each child's individual aspirations.
Brown remarked, "Like anything with pediatrics, you're never just treating the child. We work so closely with the families." As outpatients, kids spend more time at home than at the hospital, so parental education and support is an integral part of the therapy experience.
Physical therapists will teach parents and caregivers home exercise programs so the kids can stay as active as possible and incorporate gross motor activities into play. They will address potential side effects from chemotherapy, so parents will know what to expect in terms of motor delays and recognize when additional physical therapy could be needed. "It's putting that bug in the ear about the culture of mobility," said Brown.
Whether it's practicing simple range-of-motion exercises from their hospital bed, racing scooters through the therapy room, or tackling a rock wall, physical therapy gives these young patients strength, independence, and most of all, a sense of normalcy. Said Souverain, "It's astonishing to see the joy they have when they improve."
Editor's Note: For PTs interested in learning more, MSKCC will host a cancer rehabilitation symposium on June 6-7, 2014. Details: www.mskcc.org/rehabilitation-symposium
1. Brown K, Seal D. An evidence-based approach to physical therapy interventions for children with leukemia. Presented at American Physical Therapy Association Combined Sections Meeting, Feb. 5, 2014, Las Vegas, NV.
Danielle Bullen is on staff at ADVANCE. Contact: firstname.lastname@example.org