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New website helps young transplant survivors transition to post-hospital life

“Taking Charge of Your Survivorship” includes experience-borne survivorship advice on a range of topics.

Sherri Taggart says that the idea that a site like “Taking Charge of Your Survivorship” exists makes her and her son, Jack, feel supported and hopeful.
Sherri Taggart says that the idea that a site like “Taking Charge of Your Survivorship” exists makes her and her son, Jack, feel supported and hopeful.

There were moments during Jack Taggart’s most recent hospitalization for treatment of his acute lymphoblastic leukemia where he felt that he had only one thing to look forward to.

During the weeks he spent undergoing CAR T-cell therapy at M Health Fairview’s University of Minnesota Masonic Children’s Hospital, Taggart, 16, received a range of integrative therapies including massage therapy, reiki, aromatherapy and music therapy, designed to alleviate the physical side effects of his grueling treatment.

These soothing, non-medicinal options, especially massage and music therapy, gave Taggart something positive to anticipate during the toughest parts of his cancer treatments, said his mother, Sherri Taggart.

“Some weeks that was the only happy thing he had going on. It was, ‘I’ve got a massage coming today.’ Or, ‘Music therapy is coming.’ For 30 minutes, Jack could relax or make music and have a smile on his face. It was good for his overall health.”

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The integrative therapies also helped to ease some of the worst physical side effects of Taggart’s treatment, his mother said.

“Jack’s nausea, fatigue and anxiety were less pronounced while he was getting the massage therapy,” Sherri said. “It helped to get his mind off of what he was going through. It gave him something positive to look forward to.”

Three years ago, during Jack’s first round of treatment at the university, massage and music therapy had also been a godsend. When his cancer returned earlier this year, he was happy to once again have access to a full menu of integrative treatments.

“We are so grateful that they have that program at the U,” Sherri said. “They’ve made such a difference. Otherwise the past three years would’ve been truly unbearable.”

Now that his treatment is complete, Jack is happy to be at home with his family in Lakeville, but there’s one thing he misses from his days in the hospital.

“Music therapy was great,” he said, explaining that during his most recent hospitalization, M Health Fairview music therapist Greta Yates was teaching him to play the ukulele. Their regular sessions in his hospital room, he added, “gave me something to look forward to. I was learning how to play a new instrument. That was fun. Music is such a great mood lifter.”

Since Jack’s been home from the hospital, he’s had to live a particularly isolated life because his weakened immune system puts him at greater risk of contracting COVID-19.

Sherri said she wishes there were a way Jack could somehow continue his uke sessions with Yates: “Music therapy was something to keep him buoyed, something to look forward to. Then, when he left the hospital, it was all shut off. It was a bright spot in his day, and now it’s gone.”

A new website, designed by staff at the University’s Earl E. Bakken Center for Spirituality & Healing, hopes to connect young people with cancers or other rare diseases and their families to resources that can help them maintain good physical and mental well-being while providing tips and tools for accessing helpful integrative therapies after they have been discharged from the hospital.

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The site, called “Taking Charge of Your Survivorship,” is designed to give former transplant patients like Jack and their caregivers the tools needed to take control of own their lives post-treatment. It was designed with the input and guidance of young survivors.

“Taking Charge of Your Survivorship” was created after hearing a number of stories like Jack’s, said Megan Voss, director of integrative therapies for pediatric blood and marrow transplant. Over the years, many survivors and their caregivers have told her about the difficulties they encountered after transitioning into the “real” world post hospitalization and treatment. Voss and her colleagues wanted to build a place where they could go for answers and helpful advice.

Megan Voss
Megan Voss
The move from the intense, focused atmosphere of the hospital to the relative chaos of the outside world can stir new emotions, physical symptoms and increasing anxiety, Voss said. The site includes experience-borne survivorship advice on a range of topics, including tips and videos about how to do therapeutic massage at home or how to spark key conversations with loved ones about loneliness or anxiety around upcoming scans.

“We decided it was important to put together this website that addresses the things survivors can do to work with their physical and mental health,” Voss said. When patients were receiving treatment in the hospital, there were supports available to help ease their pain and emotional discomfort. Once they have made it home, those resources may not be as readily available.

Sherri said that just the idea that a site like this exists makes her and Jack feel supported and hopeful.

“It reminds him that there are other kids going through this too,” she said. “Bone marrow transplant is grueling. Having someone focusing on the kids and their overall wellness post-transplant is so important and helpful.”

Survivors in the driver’s seat

Some of “Taking Charge of Your Survivorship’s” content draws from the expertise of university staff and faculty, but much comes from the lived experience of transplant graduates who hope to use their stories of struggle and recovery to help others, Voss said. This combination was intentional.

“We tried to balance expert advice from the U of M with patients who’ve been through transplants,” Voss said. “Our patients have been with us every step of the way. Their perspective is key to making this project really work.”

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Many survivors have told her that they feel they had to give up control of their bodies during the transplant process, Voss said. Reentering the non-hospital world means that a former patient has regained that bodily control, but many report that making the transition can be surprisingly hard. The tips and tools offered in the site are designed to help these young people gain back control on their own terms.

One way to help ease the transition is to get support from peers, but, Voss explained, many survivors of rare cancers have no connections to other people with their disease. In response, Voss said, “We put together a peer support forum to help them get connected.” The site also includes pre-recorded interviews with survivors who tell about their own experiences using integrative therapies.

Another way Voss and her colleagues think the website could be helpful is by providing tips for continuing the integrative therapies that proved helpful during treatment.

“A lot of our pediatric blood and marrow transplant patients come from outside of Minnesota,” she explained. “When they are here they start using integrative therapies to manage their pain.” Once they are home, some survivors would like to continue these therapies, but it proves difficult to find practitioners skilled in nontraditional methods like reiki or acupressure.

“We found we were discharging our patients to a bunch of rural areas in the U.S. and they didn’t have anything like that in the place they are from,” Voss said. “They no longer have the supportive care services that they had when they were with us in Minneapolis.”

Without access to their favored therapies, some transplant graduates reported feeling lost.

“They were using the therapies for help with physical symptoms, but also because they were lonely, anxious, depressed,” Voss said. “It kept the physical symptoms at bay. When they left the Twin Cities and went home to their small towns, they would have these manifestations of mental health diagnoses.”

By providing practical posts, like “Aromatherapy for Beginners,” and “Acupressure Sequences for Headaches,” the site’s developers hope to make it easier for former patients and their families to continue treatments at home.

“A lot of our patients use acupressure when they are in the hospital,” Voss said. “We have videos and diagrams on the website so that patients or their parent can learn how to do it themselves.” Other features, including “Letter for a Massage Therapist,” provides a sample letter that could be provided to a local provider explaining precautions they should take before treatment.

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‘Can we help them thrive?’

Back in 2010, when Angela Bedoya went through a double cord-blood transplant to treat her Fanconi’s Anemia, the pediatric integrative therapy options available at the University of Minnesota were few and far between.

“When I went through transplant I didn’t have a whole lot of options for integrative care,” she said. “That basically didn’t exist back then.”

Without the menu of therapies offered to Jack Taggart, Bedoya, then a 17-year-old high-school valedictorian from Muskegon, Michigan, made do with the resources that were available during her months-long stay in Minneapolis.

“I had a physical therapist that didn’t come in all that often,” she said. “There was a child-life specialist that came in on and off just a few times. Because I was 17, I’m not sure she knew what to do with me. I think she was really more for younger children.”

Angela Bedoya
Angela Bedoya
Nearly a decade after her transplant, Bedoya moved back to Minneapolis, to study for a Ph.D. in immunology at the university. A year into her graduate program, she started experiencing mysterious neurological symptoms including nerve pain in her neck and vertigo.

Bedoya sought help from the physician who oversaw her transplant.

“While we were in his office, my dad saw a pamphlet about the integrative health services now offered for transplant patients,” she said. “We weren’t making much headway in the neurological stuff, so I was really interested in trying anything that could help.”

Bedoya scheduled an appointment with Voss, who talked her through options that were available for her care. “She said, Bedoya recalled, ”‘We’d be happy to help in any way we can. You went through a transplant here. We’re here to help.’”

Voss said, Bedoya recalled, “’We could try massage therapy and reiki and see if any of these alleviate some of the stress and pain you are experiencing now. They could also improve your mental health.’”

She scheduled weekly reiki and massage therapy appointments, which proved helpful. “I really liked the massage therapy,” Bedoya said. “My neck and shoulder muscles would get so tense. Massages and essential oils would help relax that area and provide comfort and relief.”

Inspired by the physical and emotional relief that these integrative therapies provided, Bedoya agreed to lend her expertise to “Taking Charge of Your Survivorship.” She wanted to help other young survivors, to let them know that even in the midst of challenge, a happy post-treatment life is possible.

“It’s not just a race to get to the other side,” Bedoya said. Rather than pushing toward a sometimes hard-to-obtain goal, the goal of the website is, she added, is, “‘Can we help them thrive? We’ve done a lot of work to help people survive these transplants. What are they going through during and after the process? How can we help them have a good life — not just a life?’”

Real pain relief

Even though he understands that Western medicine has played central role in keeping his leukemia at bay, Jack Taggart believes that it was the integrative therapies that made his life during treatment bearable.

“Massage was something to help me relax and not be feeling awful all the time,” he said. “It helped distract my focus from a lot of other symptoms, like the nausea and the fatigue. It gave me something else that was positive to be in the moment with.”

His medical treatments brought physical symptoms, Jack said, but they also brought emotional symptoms, like stress and anxiety that built up around all the unknowns that accompany transplants.

“I’m a huge worrier,” Jack said. “I have a lot of anxiety. That is a general symptom that I have throughout everything.” Complementary therapies like massage and music therapy helped relieve his anxiety, he said. And when his stress levels decreased, he added: “It also helped me feel better physically.”

Symptom relief provided by integrative therapies varies from patient to patient, Voss said.

“One of the things we’ve learned about caring for pain is that pain is just a subjective experience. It is about the person’s feelings about their pain experience. We can’t make the pain go away with therapies like massage, reiki or music, but we can help them feel supported and cared for, which can help to relieve their symptoms.”

These days, Jack has been thinking about ways he can turn his attention away from his health and take charge of his own survivorship. One way he’d like to do that is by seeking out the alternative therapies that he appreciated during his hospital stay.

“I think it would be really cool to be able to keep learning the uke,” he said. “When we left the hospital, all that just stopped.” And when he worries about one day going back to school or the results of future scans, he said, “It would be really helpful to have some tips on relaxation and mindfulness to help me cope.”