An integrative medicine program offers a new level of holistic care to St. Jude patients.
By Keith Crabtree, PhD; Photos by Seth Dixon and Justin Veneman
In 2017, oncologist Jennifer Cox, MD, of the the St. Jude Affiliate Clinic at Huntsville Hospital for Women and Children in Alabama made a potentially life-saving diagnosis: Fanconi anemia, a rare genetic disorder that affects the bone marrow.
Cox had treated patients with this disorder more than a decade ago as a fellow.
“Dr. Cox just looked at Maelin and at her labs, and she knew instantly,” recalls Megan Carlson, mother of Maelin- Kate “Mae” Carlson, age 4.
Adopted from China by Paul and Megan Carlson, Mae underwent a bone marrow transplant in March 2019. She has endured “a lot of poking and prodding,” Carlson says. But a non-traditional therapy, pediatric massage, has reduced Mae’s anxiety.
“We’re not taught a lot of these things in medical school,” says oncologist Holly Spraker-Perlman, MD, of the Quality of Life and Palliative Care program at St. Jude Children’s Research Hospital.
Spraker-Perlman specializes in integrative medicine. These therapies complement standard medical care by focusing holistically on the patient’s body, mind and spirit.
“Massage therapy is a perfect example of a low-risk, potentially high-benefit integrative intervention,” Spraker-Perlman says.
Although adult massage elicits images of massage oils and spa equipment, pediatric massage uses storytelling and bedside instruction.
Pediatric massage therapy not only feels good, but also leads to symptom relief, explains Jennifer Smith, a St. Jude child life specialist. Research has shown that massage therapy may increase oxytocin (thought to be a happiness-inducing hormone) and decrease anxiety.
Carlson says massage therapy calms Mae.
“She loves hand massages,” Carlson adds. “She’ll even put her hands out to express, ‘I need this now.’”
Can we talk?
Spraker-Perlman is busy laying the groundwork for a St. Jude Integrative Medicine Consultation Service. By 2020, this service will act as an information clearinghouse, answering families’ questions about herbals, supplements and other integrative medicine topics.
For now, Spraker-Perlman is the program’s unofficial on-call physician. “The goal isn’t to recommend X, Y or Z,” Spraker-Perlman says, “but to talk to patients and families about the things they read online and answer their questions.”
This is particularly important when a child has no further curative options and the family is trying to decide which path to take: a phase I clinical trial, an alternative therapy (which is not part of integrative medicine) or a combination of the two.
Holly Spraker-Perlman, MD, of St. Jude Quality of Life and Palliative Care, specializes in integrative medicine, which includes massage therapy, yoga and acupuncture. These therapies focus holistically on the patient’s body, mind and spirit.
A growth mindset
The massage therapy, yoga and acupuncture programs at St. Jude are growing.
Thirty St. Jude health care providers have already received training in pediatric massage. The annual St. Jude Pediatric Palliative Oncology Symposium in September will also offer an interdisciplinary workshop on that topic for doctors, nurses and other health care providers.
In a current St. Jude study, nurses massage the hands and feet of leukemia patients for brief intervals to see whether the intervention brings significant symptom relief.
St. Jude investigators are also conducting a systematic review of pediatric oncology yoga to see if a popular program adopted by many public schools benefits children with life-threatening diseases.
Acupuncture, a technique sometimes used to alleviate pain as well as chemo-induced nausea and vomiting, will soon be available to St. Jude patients. Acupressure, in which therapists use thumbs or fingers to achieve a therapeutic effect, is already used at St. Jude for young children.
“I think we’re on the cusp of what integrative oncology is going to be,” Spraker-Perlman says.
Not long ago, she started the St. Jude Integrative Medicine Working Group: doctors, nurses, child life specialists and other health care providers who meet monthly to discuss how to build a world-class program.
More recently, Spraker-Perlman spearheaded the application for a pediatric integrative oncology special-interest group through the American Society of Pediatric Hematology-Oncology.
“Our goal is to meet families where they are,” she says, “to let them know that they can talk to us about anything, to put them on the path to safe and helpful therapies.”
For Mae, massage therapy is both.
“Mae is the most joyful person,” Carlson says. “She loves to play princess and wear her princess costume.
“She had a couple of complications during transplant, but we had fabulous doctors, who took great care of her, and now she’s doing amazing.”
From Promise, Summer 2019