The bone marrow transplant (BMT) program at the University of Minnesota Masonic Children’s Hospital in Minneapolis is a busy place. Each year some 90 patients, ranging in age from infants to young adults in their early 20s, come from around the world for treatment.
The transplant process, which is isolating and arduous, can leave emotional scars on patients and their families. Last year, with a goal of helping to ease emotional pain, Masonic Children’s BMT launched an Integrative Health and Wellbeing program offering a range of alternative therapies.
Integrative therapies Program Manager Megan Voss, DNP, is focused on lightening the load for those going through the BMT program. Not every patient in the transplant program chooses to take advantage of her services, she said, but many of those who do are thankful.
“Six months after I stared working here, some of my patients started coming back for follow-ups,” she said. “Some of the youngest children still remembered me in a positive way. They’d throw their arms around my neck, and their parents said thank you for all I’d done for them. That helped me feel like I’d made a difference in their lives.”
Last month, Voss and I talked about her work and its impact on patients and families.
MinnPost: What inspired the creation of Masonic Children’s BMT Integrative Health and Wellbeing program ?
Megan Voss: John Wagner, M.D., head of pediatric BMT at the hospital, is a world-renowned physician. He had an epiphany a few years back when his daughter started practicing yoga. The dinner conversations at his home started to change, to include a focus on the health benefits of a yoga practice.
He realized that while he had saved many, many lives over the years that he has worked at the hospital, he had failed to tend to a fair amount of physical, mental and spiritual suffering that his patients and their families had experienced. Because of that realization, he decided he wanted his program to provide integrative care. He worked with the [University of Minnesota’s] Center for Spirituality and Healing, forming a partnership with center Director Mary Jo Kreitzer, RN Ph.D.
Dr. Wagner asked Dr. Kreitzer if she could help him plan a program. I was a graduate student at the center, and Mary Jo asked me and two other students to do a needs assessment and look at what integrative health in pediatric BMT program could look like.
MP: Can you tell me about the population you serve in your program?
MV: Our patients are usually undergoing a bone marrow transplant for cancers or for treatment of rare genetic disorders. They range in age from birth to age 26. We also treat their parents and other loved ones.
MP: Why is it important to offer patients and their families this kind integrative care beyond traditional medical treatment?
MV: Our patients come to us from around the world. One of the recurring themes for them is that they and their families are removed from their support systems when they are here. They have to relocate to Minnesota. Many don’t speak the language. They don’t have the cultural support they’re used to having at home. Many of our patients are seriously ill. It is an incredibly stressful time for them and their families. Because of this, they are hurting in ways that traditional medicine can’t effectively address.
People with leukemia, for instance, have usually had prior rounds of chemo and have been sick and hospitalized before. So they know a little bit more about what to expect from their treatment here. But patients who have rare genetic disorders may not yet feel ill. They’ve likely never been hospitalized.
Still, their test results tell us that something is going wrong in their systems and without treatment they may start to feel ill. Because of this, patients and families often have no coping skills developed. The reality of what they will be going through is often a major emotional blow to them and their families.
MP: What is the process of bone-marrow transplant?
MV: Usually a patient and his or her family come in for workup, then they are admitted to the hospital for a week’s worth of chemotherapy. Then there is the transplant process itself. It is usually at least 100 days before the patient is released back to regular life. Everyone is strictly isolated in the hospital at the beginning of treatment. Eventually, as patients start to show signs of recovery, they live in the community, in places such as Ronald McDonald House until they are safe to return to their home communities.
MP: How do you introduce yourself and your services to patients and their families?
MV: First, I let them know what we offer. I explain that I will follow them throughout their hospitalization and back into the clinic. I talk about why I am at the hospital and what I could do for them during their time here.
I have four handouts. The first thing I talk about is the mind-body connection. For younger children, I talk in very simple terms about how our brains and our bodies are connected. I ask, “Have you ever had a fight with a friend or a test that you’re worried about and your stomach began to hurt? That is an example of your brain telling your body what to do.” I explain that it is my goal to help them learn know how to harness that power for good.
I also talk about guided imagery. I explain that if they have to do an unpleasant procedure that may help them take their mind away from it. By putting our minds in a relaxed state we can heal or recover faster. That’s my speil for initial buy-in. I also talk about Reiki. It is one of my go-to therapies. It is such a gentle therapy with no contraindications. For patients who are experiencing severe pain, massage or acupuncture is not always appropriate.
MP: How do you work with your very youngest patients?
MV: With infants, I’m actively supporting both them and their parents through the treatment process.
One of my young patients was from another country. This patient’s parents were familiar with Reiki. As soon as I explained that this was something I could provide for them, they immediately latched on to it. I would do Reiki for their child for pain control and to help bring sleep. I’d also do Reiki for the parents to help them deal with the stress of having an ill child. We didn’t speak the same language, but it was a pure healing interaction between myself and this family.
MP: Many of your treatments are hands-on, with a focus on soothing touch, which is quite different from the traditional medical treatment these patients are undergoing. Is this key for psychological healing?
MV: One of the things we strive to do in this program is to touch patients. Sometimes the only way these kids have been touched by medical professionals in the last weeks and months is through medical treatment. Much of it is painful. We want to use our treatments as a way to show that not all touch has to hurt physically, spiritually or emotionally. I think pain can occur on all three dimensions.
MP: Could you give me an example of how you use your treatments to build a positive association with touch?
MV: I have one patient who has had leukemia for four years. She’s 12 years old. Just think about the amount of negative touch she has had in her lifetime.
She was experiencing excruciating pain and was we used Reiki touch therapy to help treat her pain. With this treatment, her pain decreased by half. It’s not that the physical sources of her pain had been reduced by that much, but some of her pain was emotionally based. Her pain was reduced by having someone be with her, hold a space for her, acknowledge her feelings and use touch in a positive way.
MP: You also offer yoga practice with patients. How can yoga help someone in this situation find emotional balance?
MV: We use the Yoga Calm program at Masonic Children’s. I chose this program because it was developed specifically for children. Several years ago, a social worker from the Minneapolis Public Schools system brought it to Minnesota from the West Coast.
By combining mind, body and breath, children work on self-regulation, coping and resiliency. Yoga Calm is guided by five principles: stillness, listening, strength, grounding and community. With practice, the children can access inner strengths that they can carry with them through their lives.
MP: What does your typical day look like?
MV: My mornings are filled with program development duties. In the afternoon I see patients. This afternoon, I’ll see a 2-year-old and a 5-year-old. I just saw a 10-year-old and then later I’ll see a 21-year-old. It is all over the board. My longest appointments are 90 minutes. Typically they last 45 minutes.
With the younger patients, I will usually see if there is something I can do to comfort or calm them or their parents. Usually it is Reiki or massage. With the older kids, it’s more the yoga and the mind-body work. We try to be more active. There are more options of the older kids.
For some patients and families it’s just being there and listening. I offer them therapies as well for relaxation and stress management. The 21-year-old’s mom does yoga with us. I’ll visit the room and we will do yoga together.
We practice yoga in the patients’ rooms. I’ve had families where the whole family — even Grandma — does a mini yoga class together.
MP: How do your patients experience physical and emotional pain?
MV: My patients experience physical pain, including pain in their mouths. They get mouth sores from chemo. They get generalized musculoskeletal pain form lying around in bed. They are so ill for so long. They also experience emotional pain from isolation and fear. For the younger ones that don’t understand what they going through, their trust has been shattered. They think everyone close to them is lying to them. They exhibit anger toward caregivers, nurses, parents and grandparents. They also experience isolation from siblings and school.
The pain parents experience is mostly emotional. Whenever a parent comes here they are told that there is a 20 percent chance that they won’t go home with their child because of complications from transplant.
That is really hard to hear, and the treatments themselves are hard for everyone in the family. The worst is that one caregiver isn’t enough if there are siblings involved. Usually there are grandparents involved as well. There is often a mother or father stranded hundreds or even thousands of miles away from home without any support.
MP: Do you feel like your work helps patients and their families?
MV: Some days I feel really good about what I’ve done. Some days I leave here feeling defeated. I never feel like I’m doing harm, but I have some patients where you just feel like you can’t do enough to help them.
I haven’t had any negative responses. Some people latch on to me more than others. I always tell people that this is optional. There is no pressure. I haven’t had any parent say, “This sounds crazy. Get out of here.” And patients and parents have come back and thanked me for what I did for them while they were here. I just want to help make their load a little bit lighter, to ease their pain, make their lives better. That’s my goal.