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Comfort for the Fight
Providing Relief for Children with Cancer
By Janice Valverde
Pediatric oncology massage is still something new in the vocabulary of massage and bodywork. Over the past decade, it has evolved into a recognized, if not widely available, therapy for children with cancer, and its efficacy for reducing pain, anxiety, and depression is supported by research. As the need for it is recognized, research supporting it continues to grow, and opportunities expand for training and working in this specialized—and special—work.
To anyone who has not experienced cancer firsthand or through the illness of a family member, it is difficult to fathom how severely life with cancer can displace normal, healthy life. Childhood cancer might be the most disruptive and stressful kind of all, since it is not only a daunting experience for the patient, but also for every member of the patient's family who must witness the pain and share the constant anxiety of not knowing the answer to the child’s question, “Will I get better?”
Cancers of the blood cells (leukemias), brain, and central nervous system account for more than half of childhood cancer diagnoses, according to the National Cancer Institute.1 These cancers require some of the most invasive and painful diagnostic tests and treatments, such as spinal taps, bone-marrow biopsies, brain-tumor surgeries, and bone-marrow transplants, typically followed by radiation and/or chemotherapy. One of the toughest challenges for any cancer patient, adult or child, is managing the side effects of chemotherapy. These may include chronic chills, depression, diarrhea, dry mouth, extreme nausea, fatigue, hair loss, lack of appetite, pain, and more. It’s difficult to imagine a child having to cope with all of this, but it is a reality for thousands of children in the United States today.
According to the American Cancer Society (ACS), nearly 11,600 American children under the age of 15 will be diagnosed with cancer in 2013; more than 1,300 will die from cancer this year.2 Cancer cure rates vary greatly according to the cancer diagnosis, and, although childhood cancer survival rates are 20 percent higher than they were in the 1970s, the ACS says about 20 percent of children with cancer still die from the disease. Cancer is the second leading cause of death in children younger than 15 (accidental death is number one).3 If there is any good news about pediatric cancer, it is that it represents less than 1 percent of all diagnosed cancers in the United States.4
What Massage Therapists Can Do
Neither bodywork nor massage therapy will change these statistics, but the relief and comfort that pediatric oncology massage provides is of enormous benefit to the children and families who comprise these statistics.
“Our children love their massages,” says Beecher Grogan, director of Lucy’s Love Bus, a charitable trust based 35 miles north of Boston that underwrites the cost of massage therapy and other holistic therapies for children with cancer. “It offers them a wonderful and necessary break from their pain, anxiety, and suffering. Massage helps children connect with their own bodies in a way that nothing else can.”
Lucy’s Love Bus is the legacy of Grogan’s daughter Lucy, who died in 2006 at age 12 after four years of treatment for acute myeloid leukemia. Grogan says that after a bone-marrow transplant, the only things that helped Lucy feel better were high doses of pain medication and massage therapy. During Lucy’s time at home (more than half of her four-year ordeal) “we massaged her feet for hundreds of hours,” Grogan says. Lucy wanted her legacy to be an organization that would enable kids with cancer to receive integrative therapies at home, while they were still receiving treatment as outpatients.
“Having a massage makes me feel so calm and peaceful,” says one 14-year-old girl who has been receiving regular massage thanks to Lucy’s Love Bus. “I just get to take a break. My muscles have been through so much, and it really helps them feel rejuvenated.” Her mother also sees the positive benefits. “[She] looks forward to a treatment that does not involve being stuck with a needle, or feeling sick afterward.” Massage therapy, the mother adds, allows her daughter to “take her own power back into her body, which has had so much control taken from it.”
Lucy discovered the benefits of massage therapy and other integrative therapies at Children’s Hospital in Boston. While oncology massage is offered at several of the country’s large children’s hospitals—other examples are Children’s Memorial in Chicago, All Children’s Hospital in Tampa, and the Children’s National Medical Center in Washington, D.C.—it is still a rare commodity outside of hospitals. Yet, Grogan would argue that the need is greatest when sick children are at home, still receiving treatment on an outpatient basis—they still suffer from the side effects of treatment, but have no medical staff present to assist them.
Although Grogan’s organization raised enough funds by the end of 2012 to subsidize integrative therapies up to $1,000 per child for 100 children, Grogan wants to expand the organization’s reach in order to serve children and families nationwide. “I’d like people to understand how unique Lucy’s Love Bus is,” Grogan says.
Her vision is to link with research partners to create “win-win-win” situations for patients and their families, researchers, and practitioners. “We are a great conduit [for researchers] to families and children who are dealing with cancer,” she says, noting that she receives requests from “as far away as California and Arizona, plus Kansas, Indiana, Texas, all of New England, New York, and New Jersey.” In turn, researchers could provide funds to support the work of trained oncology massage therapists to carry out research studies, while at the same time advancing awareness of, and access to, pediatric oncology massage.
Not for Every Therapist
Pediatric oncology massage is not for every massage therapist. It can be intense. It requires advanced training, and a special ability to relate, in a sensitive and professional manner, to both children and their family members. It demands good communication skills, nonverbal as well as verbal. In addition, it can be a special challenge to a therapist’s ability to resist emotional transference, or simple burnout. Many therapists who practice oncology massage with children balance their schedule with other types of clients, too. Still, those who do this work love the unique rewards it offers.
“I know it can be daunting to work with children who are diagnosed with cancer,” says Darren Moskowitz, a licensed massage therapist and owner of Wholebody in Burlington, Vermont, who has worked with Lucy’s Love Bus since 2010. “But each time I work with new patients, [my] fear and discomfort dissipate because I know what I’m doing is making a huge difference in their life and their family’s lives. The immediate results of the work outweigh any other considerations.”
Moskowitz is no stranger to chronic pain or serious illness. A severe back injury in 1997 introduced him to the power of bodywork, which allowed him to heal without surgery. He graduated from the Sarasota School of Massage in 1998, only to be diagnosed with Hodgkin’s lymphoma in 1999. He was hospitalized at Memorial Sloan-Kettering Cancer Center in New York City, where some of the first research on oncology massage was done, and where he later ended up getting his training in oncology massage therapy.
Sloan-Kettering offered many complementary therapies “to augment my intense and radical oncology treatment,” Moskowitz says. Ultimately, the oncology treatment cured his cancer, but it was “the supportive care of massage therapy and other complementary therapies that got me through each day.”
“An Absolute Blessing"
Jillian Ayer, a licensed massage therapist in Hingham, Massachusetts, calls pediatric oncology massage “an absolute blessing” to a child she worked with, to the girl’s family, and to herself. She is also a provider for Lucy’s Love Bus, which connected her with a 6-year-old client who ultimately did not survive an inoperable brain tumor. The child’s family traveled from their home in South America to a relative’s home in the Boston area in order to bring their daughter to Children’s Hospital. Ayer provided oncology massage to the girl at home and in the hospital, both while the child was conscious and, later, while she was in a coma. Ayer even provided massage to her on the day that life support was removed, and also massaged the child’s grandmother and younger sibling at that time.
Formerly an advocate for children hospitalized with serious illnesses, Ayer offers an interesting perspective on the role of pediatric oncology massage therapy. Although doctors are doing life-saving work, Ayer says they do not have time to slow down and listen extensively to patients and families. Parents of children with cancer are also stressed and anxious, and often unable to provide the kind of comfort that they want for their children. Offering massage to children, and sometimes working on the parents, too—or showing parents how to do some safe massage techniques for their children—helps fill these voids with the powerful benefits of touch therapy. What might seem a small thing, such as giving a 20-minute massage, can make a big difference for a child with chronic pain who might finally be able to get a peaceful night’s sleep.
If You Aren’t Trained, Don’t Do It!
Ayer got her training in oncology massage from well-known educator and researcher Tracy Walton, and also participated in an intensive internship for massage therapists through the Boston Medical Center’s Department of Integrative Medicine, where the emphasis was on working with oncology patients. “If you are not educated in the safe way to provide pediatric oncology massage, you shouldn’t,” cautions Tina Allen, leading educator in infant and pediatric massage therapy, and founder of the Liddle Kidz Foundation. The work is about safety and care, and massage therapists must be mindful to “first, do no harm,” she says. Allen offers an intensive two-day course called “Touch Therapy for Children with Cancer,” and has also developed a three-hour continuing education course called “Introduction to Pediatric Oncology Massage.”
Allen, well known for bringing infant and pediatric massage therapy training to parents, child-care workers, and health-care providers worldwide, has trained thousands of people. While in Japan in 2010, she made a presentation to staff and parents of patients at the Oncology Unit of the National Center for Child Health and Development. “The Japanese people are not known for hugging, but I received numerous hugs that day,” Allen says. “Massage therapy had not been practiced there in the pediatric hospital until my visit.”
Another pediatric massage educator, Shay Beider, MPH, LMT, offers training in pediatric oncology massage, and at one point had developed a certification program for it. However, her focus has shifted away from that effort since the opportunities to apply the training are just too few and far between. “One thing that needs to happen is for new opportunities to open up for therapists to do this work,” Beider says, adding, “What is the point of earning certification in pediatric oncology massage when there is no place to do the work?”
Through her nonprofit organization, Integrative Touch for Kids, Beider now consults with hospitals and delivers customized training programs to meet their specific needs. She has trained staff at many hospitals in how to safely massage seriously ill children. Last June, she offered a three-day introductory course and a two-day advanced course to massage therapists working on a research study at the Children’s National Medical Center in Washington, D.C.
Certification for pediatric oncology massage is somewhere on the horizon, and the Society for Oncology Massage (S4OM) is currently working on certification standards for general oncology massage.
S4OM President Lauren Cates said in an interview that S4OM is “definitely interested in supporting pediatric oncology massage and, as we grow, there will be room for us to conduct greater outreach and advocacy in that area, too.” Cates says her dream is that well-trained therapists and well-organized programs will find the funding needed to provide massage and to support research that would demonstrate how massage might decrease hospital stays for sick children, as well as decrease use of medications for anxiety and pain.
Risks and Contraindications
Oncology massage itself is still new enough that many therapists recall learning incorrectly that massage was contraindicated for anyone with cancer. This blanket contraindication is no longer valid, thanks to research that discredits the notion that massage can spread cancer by stimulating circulation. However, that does not mean there are no risks or contraindications that must be respected when working with cancer patients. This is why proper training is so essential in working with this population.
The adage “less is more” applies to all oncology massage. In the case of children, it may be “even a little bit less is more.” A session might include light strokes, holding, perhaps a focus on foot massage, or maybe what oncology massage therapist Walton calls a “hand sandwich,” which consists of holding the client’s hand or foot between your own hands. Reiki and other energy work can also be incorporated into pediatric oncology massage because it is so gentle.
Much of learning how to do oncology massage is about learning what not to do. For example, irradiated skin is sensitive and should not be massaged; rocking motions are a no-no when the client is nauseous from chemotherapy; deep pressure is almost never appropriate, and certainly not at a tumor site. Additional precautions include avoiding the client’s port (a port catheter is a small medical appliance installed beneath the skin of the chest near the collarbone for use in administering drugs or obtaining blood samples). Areas of the body where lymph nodes have been removed should not receive anything but the lightest touch, and almost all cancer patients are at risk for deep vein thrombosis, so touching legs must be limited to gentle stroking toward the heart.
Pediatric massage sessions are typically shorter than the common 60-minute therapeutic massage, since children can easily be overstimulated. This is even more true when they are sick. Checking in quietly and gently, and more often than with an adult, is a good idea with a child. Sick children need reassurance and may need encouragement to speak up should they be uncomfortable or have a question. Allen advises pediatric oncology massage therapists to always begin a session by asking the child’s permission to be touched.
It almost goes without saying that massaging a child with active cancer requires an OK from the child’s oncologist. It is especially important to know the child’s current white blood cell status, since neutropenia (an abnormally low level of certain white blood cells) is common among cancer patients and compromises their defense against infections.
The Future Depends on Research
For now, charitable organizations such as Lucy’s Love Bus are a godsend for the children they serve. Equally valuable are integrative treatment programs in children’s hospitals, although they are still scarce and mostly funded through philanthropy or research grants. Obviously this means that the majority of childhood cancer patients do not get the relief and comfort that massage offers, either as inpatients or outpatients. What will change this? Research is key.
In addition to her role with S4OM, Cates is contributing to this cause through Healwell, a nonprofit organization she founded in 2010. Under contract with the Children’s National Medical Center, Healwell’s team of massage therapists is conducting a study on the feasibility of offering regular massage therapy to hospitalized cancer patients aged 12 to 21. The data collection phase of the study, “Perchance to Dream: A Massage Therapy Trial in Adolescents with Cancer,”5 was completed in May 2012, and data analysis is ongoing.
Cates says the study has opened a door for massage therapists to be at the hospital regularly, and they are now on the floors, as well as in the outpatient pain clinic, 12 hours a week. According to the hospital, “The study has secured the continued presence of massage therapists on this pediatric oncology unit and is a welcome addition by staff and families to the care provided at the Children’s National Medical Center.”
The next phase of the study will examine how childhood cancer patients at the hospital’s outpatient clinic respond to regular massage. Cates says her team would also like to work with more patients in the bone-marrow transplant unit and palliative-care program, but there is just not enough funding for it.
The seeds of research on pediatric oncology massage may have been planted at the first International Symposium on the Science of Touch, which was held in Montreal in 2002. Janice Post-White, PhD, MSN, FAAN, recalled meeting Cynthia Myers, PhD, LMT, and Lonnie Zeltzer, MD, as well as several Canadian massage therapists, physicians, and nurses at that event. “It was such an inspiring group!”
Post-White’s work in the field of integrative therapies led to her becoming the founder of the Children’s Hospitals and Clinics of Minnesota’s Integrative Medicine program. It is now the largest and longest-running pediatric clinical integrative medicine program in North America.
She was lead investigator on an oft-cited study funded by the Massage Therapy Foundation titled “Massage Therapy in Childhood Cancer,” which was published in the January/February 2009 issue of Journal of Pediatric Oncology Nursing.6
“Our study was small,” Post-White says, “and I can’t necessarily conclude that massage reduced symptoms or facilitated healing,” but it clearly provided a positive experience during a stressful time. She also completed a longitudinal study in which children received four weekly massages alternating with a “usual care” control session, while their parents also received regular chair massage. “We learned much from both of these small studies,” Post-White says.
The late Cynthia Myers, PhD, LMT, published a study titled “Complementary Therapies and Childhood Cancer” in the July 2005 issue of the journal Cancer Control.7 While that study did not focus exclusively on massage therapy, it was particularly useful since Myers and her colleagues exhaustively reviewed, analyzed, and aggregated the findings of 14 separate studies conducted from 1994 to 2004 on numerous complementary therapies for children with cancer. Myers was the founding director of the Integrative Medicine Program at the Moffitt Cancer Center in Tampa until her death in 2008.
A study by Jolie Haun, PhD, LMT, John Graham-Pol, MD, and Brendan Shortley, reported in the International Journal of Therapeutic Massage and Bodywork in June 2009, found that “although cancer clinics and oncology/hematology wards are hectic clinical settings that must provide necessarily invasive clinical care such as chemotherapy, which clearly compromises the immune system, our data suggest that the addition of [massage therapy] as a palliative treatment can increase the quality of life and the health of pediatric oncology and hematology patients.”8
The body of research is growing, but it is clearly not large enough nor convincing enough to persuade all hospitals, physicians, or insurance companies that massage therapy is “good for patients and good for the bottom line,” as Cates puts it. But as the research continues, as awareness of the need for it grows, and if the massage therapy profession itself will shine some light on the need for this specialized—and special—type of massage therapy, then the future of pediatric oncology massage should be bright.
1. American Cancer Society, “Childhood Cancers,” accessed August 2013, www.cancer.gov/cancertopics/factsheet/Sites-Types/childhood.
2. American Cancer Society, “What are the Key Statistics for Childhood Cancer?” accessed August 2013, www.cancer.org/cancer/cancerinchildren/detailedguide/cancer-in-children-key-statistics.
3. Centers for Disease Control and Prevention, “Cancer in Children,” accessed August 2013, www.cdc.gov/features/dscancerinchildren.
4. American Cancer Society, “What are the Key Statistics for Childhood Cancer?”
5. Lauren Cates, email correspondence with author, July 11, 2013. According to Cates, this is an ongoing study, still in its early stages, and no study results have yet been released.
6. Janice Post-White, “Massage Therapy in Childhood Cancer,” Journal of Pediatric Oncology Nursing 26 (January/February 2009): 16–28.
7. Cynthia Myers et al., “Complementary Therapies and Childhood Cancer,” Cancer Control 12, no. 3 (2005): 172–80.
8. Jolie Haun et al., “Children with Cancer and Blood Diseases Experience Positive Physical and Psychological Effects from Massage Therapy,” International Journal of Therapeutic Massage and Bodywork 2, no. 2 (2009): 7–14.
Janice Valverde divides time between her new practice, Valverde Massage in Venice, Florida, and writing about complementary health care. Valverde, an ABMP member, also belongs to the Society for Oncology Massage and the Association of Health Care Journalists. She can be reached at firstname.lastname@example.org.
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