Marrow Masters

Given that Season 18 of Marrow Masters focuses on caregiving, we wanted to share an empathy exercise that the LINK's licensed staff social worker, Jennifer Gillette, performed in a recent webinar. It's impossible to know exactly what a cancer patient is going through, but through this exercise, you may get a bit of understanding. And it may help you garner some empathy for the person you are caring for.This season of Marrow Masters is Sponsored by Sanofi and Jazz Pharmaceuticals. National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Sally Werner, CEO of Cancer Support Community, to explore her dual perspective as a longtime oncology professional and as a caregiver to her mother-in-law. We begin with Sally’s background—first as an oncology nurse, then a healthcare administrator, and now a nonprofit leader. She calls this her “passion job,” driven by a deep commitment to support patients and caregivers alike.Sally opens up about her personal journey as a caregiver. Her mother-in-law, Patty Jo, was diagnosed with a rare renal cancer, and Sally became an essential part of her care team, despite living in a different city. As a seasoned professional, she brought clinical experience to the table, but she quickly learned that when the patient is someone you love, emotions can cloud objectivity. To manage this, she utilized Cancer Support Community’s own navigation resources to bring a neutral party into the conversation—someone who could help guide medical decisions without the weight of family emotions.Second opinions played a crucial role in Patty Jo’s care. Sally emphasized how vital they are, especially with rare cancers. In Patty Jo’s case, an aggressive surgical recommendation was replaced with immunotherapy after a second opinion—an option that ultimately preserved her quality of life and kept her active. The family’s concerns were met with clarity and reassurance, thanks to a coordinated, compassionate care approach.Caregiver support was another focal point. Sally discusses the emotional and physical toll on her father-in-law, who was the primary at-home caregiver. She stresses the importance of helping caregivers maintain their own wellbeing. Sally even moved in for a time to assist with daily tasks and give him a break, showing how essential family coordination and self-care are during intense medical periods.We also explore how to activate and manage support systems. Sally used Cancer Support Community’s My Lifeline tool to keep extended family informed and to schedule help in ways that respected Patty Jo’s wishes. This helped avoid overwhelming her while still allowing others to contribute meaningfully.Throughout the conversation, Sally returns to the theme of shared decision-making. She emphasizes that while friends and family often mean well, it’s the patient who should drive treatment choices. Tools like Open to Options allow patients to articulate values and priorities, helping align treatment with what matters most to them.We end with a look into survivorship—what it means to live well after diagnosis. For Patty Jo, this means gardening, walking, spending time with family, and learning to manage fatigue. It also means embracing life differently and more deliberately. As Sally reminds us, cancer changes everyone. But with support, compassion, and the right tools, families can find strength and even joy on the other side of diagnosis.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/More:Cancer Support Community: https://www.cancersupportcommunity.orgMy Lifeline Tool: https://www.mylifeline.orgTriage Cancer Financial Resources: https://triagecancer.orgnbmtLINK Finance Guide (English): https://www.nbmtlink.org/product/finance-guide-for-bone-marrow-stem-cell-transplant/nbmtLINK Finance Guide (Spanish): https://www.nbmtlink.org/product/guia-de-financiacion-para-trasplantes-de-medula-osea-celulas-madre/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we talk with Deb Brandt, caregiver to her husband, JR, a survivor of Philadelphia-positive acute lymphoblastic leukemia (ALL). Deb shares the journey that began in September 2016 when JR noticed unusual symptoms that led to an urgent diagnosis. Within days, he began an aggressive chemotherapy regimen, with the hope of a bone marrow transplant as the only cure. The search for a match took seven months, eventually expanding internationally until a 10/10 donor was found, leading them to relocate to Stanford University for the procedure.We discuss the practical realities of caregiving, especially the financial side. Deb emphasizes connecting early with medical teams, social workers, nurse navigators, and financial departments. She details how they tapped into resources from organizations like the Leukemia & Lymphoma Society, utilized a GoFundMe campaign, applied for Social Security disability benefits through its "blue book" criteria, and discovered that many medical bills are negotiable. Deb highlights pharmaceutical assistance programs, including the Medicine Assistance Tool (MAT), NeedyMeds, and Triage Cancer, which help patients access affordable medication.Deb also shares the importance of proactive communication with insurance providers, especially when facing financial hardship, and leveraging housing support networks such as Ronald McDonald House and Hope Lodge when treatment requires relocation. Don't be afraid to use your personal network, too!On the emotional side, Deb describes how caregiving is deeply personal, with strategies unique to each person. She and JR found joy in music, storytelling, birdwatching, and creating comforting hospital environments. She underscores the need for caregivers to take their own breaks — whether walks, massages, or naps — and the value of long-term follow-up care, especially when complications like chronic graft-versus-host disease arise.We explore life after transplant, the strengthening of family bonds, and Deb’s practical lesson of “learning the job” by taking over JR’s household roles. Professionally, Deb works in Montana’s vocational rehabilitation department, helping people with disabilities — including those recovering from cancer — re-enter or adapt to the workforce. She shares that similar resources are available in every U.S. state.Deb’s closing message is about consciously choosing hope. She encourages caregivers and patients to find daily glimmers of light, allow space for tears, but always return to gratitude and positivity. JR is now eight years post-transplant, living with ongoing health challenges but embodying resilience and determination.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/Check out JR's Survivor Story from Season 14 here: https://marrowmasters.simplecast.com/episodes/jr-brandtAdditional Resources:Leukemia & Lymphoma Society (LLS) is now Blood Cancer United: https://bloodcancerunited.org/Be The Match – https://bethematch.orgMedicine Assistance Tool (MAT) – https://medicineassistancetool.orgNeedyMeds – https://www.needymeds.orgTriage Cancer – https://triagecancer.orgRonald McDonald House Charities – https://rmhc.orgHope Lodge – https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.htmlVocational Rehabilitation Services Directory – Search “[Your State] vocational rehabilitation” National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Today we sit down with Henry Ford Health Michigan's Hina Desai, an oncology certified social worker with decades of experience, to share her best caregiving tips for those supporting transplant patients. Hina explains that patience, physical stamina, problem-solving, adaptability, and emotional intelligence are essential caregiver skills. We talk about the many roles a caregiver plays — from transportation and medication management to wound care, infection prevention, meal preparation, and emotional support. Staying connected to the healthcare team and keeping friends and family informed are key.We highlight the value of resources like the Leukemia & Lymphoma Society’s, now Blood Cancer United's, free nutritional consultations. Hina stresses the importance of understanding the Family Medical Leave Act, planning for potential income loss, and connecting with social workers to access financial help from foundations such as LLS, PAN Foundation, Cancer Care, Angels of Hope, New Day Family Foundation, and NMDP.Hina advises enlisting a support network early. Dividing tasks like grocery shopping, meal prep, transportation, and pharmacy runs helps prevent burnout. She reminds us that transplant caregiving is a marathon — caregivers must look after their physical, emotional, financial, and spiritual wellbeing. This includes setting boundaries, filtering advice, staying flexible, and preparing for setbacks such as relapse or unexpected hospital stays.We discuss unique considerations for CAR T, allogeneic, and autologous transplants. CAR T caregivers should watch for neurological changes. Allogeneic caregivers may handle tasks like IV magnesium infusions and monitor for graft-versus-host disease (GVHD) or veno-occlusive disease (VOD).Caregiving can change relationship dynamics, sometimes causing role reversal. Good communication helps maintain mutual respect. Self-care remains vital: nutritious eating, exercise, spiritual practices, adequate sleep, and support groups can all help sustain the caregiver’s energy and emotional health.Hina and Peggy share heartwarming stories of caregivers going above and beyond, from offering a shower to a hospital-bound spouse, to creatively negotiating with doctors so a patient could return to gardening safely. We reflect on the importance of kindness toward oneself, seeking help when needed, and recognizing that caregiving doesn’t have to be perfect to be deeply meaningful.  We also highlight three husbands who have stepped up as caregivers to their wives.We close with gratitude for caregivers and the countless ways they support recovery, comfort, and hope for transplant patients.Season 18 of the Marrow Masters podcast is sponsored by Sanofi and Jazz Pharmaceuticals.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/Resources:Leukemia & Lymphoma Society (LLS) is now Blood Cancer United: https://bloodcancerunited.org/PAN Foundation: https://www.panfoundation.orgCancer Care: https://www.cancercare.orgAngels of Hope: https://angelsofhope.orgNew Day Foundation for Families: https://www.foundationforfamilies.orgNational Marrow Donor Program (NMDP): https://bethematch.orgBMT InfoNet: https://www.bmtinfonet.org National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we speak with Daniel Medina of Broomfield, Colorado, about his journey as a caregiver for his wife Miley, who was diagnosed with acute myeloid leukemia (AML) in 2021 at the young age of 27. What begins as a story of sudden diagnosis during an active summer of volleyball quickly turned into an emotional and logistical rollercoaster for Daniel, Miley, and their then two-year-old daughter.We walk through the early days of Miley’s diagnosis, including a pivotal urgent care visit that led directly to hospitalization. Daniel shares how a professional connection helped secure Miley’s access to top oncological care at UC Health. Despite initial chemotherapy and some success, a relapse in 2022 led to a bone marrow transplant, which ultimately helped Miley recover and thrive. Today, she’s healthier and more driven than ever—running three coffee shops, parenting energetically, and even making time for beach volleyball.Throughout the conversation, we dive deep into Daniel’s experience as a male caregiver. He reflects on the challenges of holding together family life, work obligations, and emotional well-being while supporting a critically ill spouse. He shares how difficult it was to ask for help—something that went against his natural instinct for independence—and how family, colleagues, and mindfulness practices helped him cope.Daniel is candid about the helplessness he felt, the fears of losing his partner, and the emotional weight of trying to appear strong for his daughter. He explains how something as small as being physically present, even if it’s just sitting silently in the hospital room, becomes powerful. We also learn how critical digital communities like the CancerBuddy app were in helping him find hope, practical advice, and emotional connection during a time when Google only offered grim statistics.We explore how Miley’s recovery affected not only their family dynamics but also their daughter, who—despite her young age—continues to carry emotional echoes of the experience. Daniel highlights the importance of honoring milestones and using them to reflect on growth, healing, and gratitude. He encourages all caregivers to stay grounded, stay present, and reach out for support when needed. His perspective is not only honest and raw, but also deeply human, offering valuable insight into the caregiving journey from a role that’s often underrepresented.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/CancerBuddy: https://bonemarrow.org/support-and-financial-aid/support/about-cancerbuddy National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Lorri Pimentel of Santa Rosa, California, a resilient survivor who shares her deeply personal journey through breast cancer, acute myeloid leukemia (AML), and a life-saving bone marrow transplant. We explore not only the medical milestones but also the practical and emotional realities of navigating treatment and recovery, especially in the context of caregiving during the COVID-19 pandemic.Lorri opens by walking us through her diagnosis timeline: first with DCIS breast cancer in 2016, followed by an AML diagnosis in 2019. She underwent intense chemotherapy and, after a relapse, received a stem cell transplant in March 2021. Her story is not only one of medical complexity but also of personal upheaval—she was in the middle of a divorce and raising three children, with limited family caregiving options. Her caregivers were her friends and former work colleagues, who rotated week by week to support her recovery.We dive into Lorri’s insights and hard-earned lessons about caregiving and post-transplant life. She stresses the importance of flexibility in caregiver scheduling, being prepared for early hospital discharge, and having a list of essential medical contacts readily available. She advises caregivers to undergo thorough training, keep detailed records for outpatient visits, and maintain strict medication management practices.Lorri doesn't shy away from sharing her missteps. She discusses her experience with Graft-versus-Host Disease (GvHD), the dangers of sun exposure, and complications like mucositis and insomnia. Her tips—like using a water pick, prescription mouthwash, fluoride toothpaste, and avoiding self-medicating with cannabis—are based on lived experience. She also shares less obvious insights, such as the need for UV-protective clothing, avoiding rice leftovers, and managing dry eyes with serum-based drops not yet FDA-approved.Transportation and social isolation were also major themes. Lorri emphasizes the importance of arranging reliable rides to appointments and finding indoor outlets for creativity and community. She found healing in watercolor art, music, yoga, and support groups. Her volunteer work with LLS, now Blood Cancer United, and NMDP reflects her dedication to mentoring others on the same path.We wrap up by discussing Lorri’s present-day life. Now more than four years post-transplant, she’s active, creative, and grounded in gratitude. Her final message is one of hope and purpose: bone marrow transplant recovery is slow, but it’s life-changing, and each day is a gift worth sharing.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Anastasia Cacavias, a registered nurse and manager of the Blood and Marrow Transplant Leukemia Program at Northside Hospital Cancer Institute in Atlanta. Anastasia walks us through the essential role that caregivers play throughout the transplant journey—from initial diagnosis to long-term recovery. Her perspective comes not only from clinical experience but from deeply personal connections with patients and their support systems.We begin by discussing the broad and intensive responsibilities caregivers take on. These range from medication management, symptom monitoring, transportation, and attending every medical appointment to providing emotional support 24/7. Anastasia explains how caregivers are not just passive companions but active partners in medical care. They’re educated thoroughly before the patient begins their conditioning regimen, especially about signs of infection, graft-versus-host disease, and other complications.Once patients return home, the caregiver’s role intensifies. They’re responsible for maintaining a clean home environment, food preparation, hygiene assistance, and ensuring infection control—such as hand washing, mask-wearing, and visitor limitations. Anastasia offers guidance on how caregivers can prepare, including maintaining good communication, staying organized, and using a detailed education notebook provided by the hospital.Self-care for caregivers is a major focus. Anastasia emphasizes that it’s okay to admit feeling overwhelmed. She encourages them to take breaks, get proper rest, eat well, and tap into family or community resources for support. Even small actions, like letting someone else bring the patient to the clinic for a few hours, can be meaningful.We also explore more medical territory—highlighting key patient needs such as hydration, nutrition, and mobility. Physical therapy is introduced before transplant and continued after, with an emphasis on realistic daily movement goals. Proper dental care, both pre- and post-transplant, is essential to avoid complications, with tips like using alcohol-free mouthwash and soft-bristled brushes.We touch on important transplant-related complications such as Graft-versus-Host Disease (GvHD) and Veno-Occlusive Disease (VOD). Anastasia details the signs to watch for, treatment protocols, and the hospital's proactive approach, including assigning dedicated GvHD nurses and maintaining 24/7 communication lines for urgent symptoms.Anastasia closes the conversation with moving stories of caregivers who went above and beyond—reminding us of the emotional strength and love that often fuels this journey. These stories reinforce her message: caregivers are central to healing. Without them, recovery would look very different.Northside Hospital: https://www.northside.com/National Marrow Donor Program (NMDP): https://bethematch.orgThis season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Season 18 of Marrow Masters, produced for the National Bone Marrow Transplant Link, and sponsored by Sanofi and Jazz Pharmaceuticals. This season is all about the caregivers. Our guests will offer up their best tips, experiences and advice. We’ll cover the importance of self-care and share heartwarming stories of compassion and love. You'll hear from an RN and transplant manager at Atlanta's Northside Hospital, a CEO of a cancer organization who found herself in the cargiver role, an oncology social worker, a survivor who had an army of caregivers, and a male and female caregiver. You'll want to hear how those roles affected the dynamics of their relationships.   This season, we're also including an empathy exercise- demonstrated by the National Bone Marrow Transplant LINK's own social worker, Jennifer Gillette. While most of us are fortunate not to know first-hand what it's like to have cancer, this exercise will open your eyes to what your loved one may be experiencing.Please share this podcast with someone you think would benefit from it.  And don’t miss future episodes of our show – follow Marrow Masters for free on Apple, Spotify, YouTube, or wherever you’re listening right now.  Marrow Masters is produced for the National Bone Marrow Transplant Link. Established in 1992, the LINK strives to help patients, caregivers, and families cope with the psychosocial challenges of bone marrow transplant, from diagnosis through survivorship.  The Marrow Masters podcast is produced by JAG Podcast productions, online at JAGPodcastProductions.com.This season is sponsored by Sanofi: https://www.sanofi.com/And Jazz Pharmaceuticals: https://www.jazzpharma.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this incredible episode of Marrow Masters, we sit down with Kayla West, a stem cell donor from Texas, and Miriam Bauer, the mother of a young leukemia survivor Miley, from Oklahoma. This story is a deeply emotional journey of hope, resilience, and a connection that transcends bloodlines. Kayla and Miriam take us through the entire transplant process from both perspectives: the donor stepping up during a pandemic, and the caregiver navigating a life-threatening diagnosis in a child.We begin with Kayla’s decision to join the donor registry after a chance encounter with DKMS at a Goo Goo Dolls concert. She didn’t expect to be called to donate, but when she was, during COVID lockdown, she jumped at the chance to help someone—anyone—in need. That “anyone” turned out to be Miley, an eleven-year-old girl who had been diagnosed with acute myeloid leukemia (AML) and urgently needed a transplant after two brutal rounds of chemotherapy.Miriam recounts those terrifying early days at St. Jude, from the moment of diagnosis through the chaos of the early pandemic lockdowns. She was Miley’s only caregiver during a 248-day hospital stay. Her story is filled with moments of heartbreak and triumph, from failed chemo rounds to the joy of reaching remission and finding a viable donor in Kayla. We learn how transplant coordination works, how donor cells were frozen and shipped during COVID, and how little details—like celebrating donor day or choosing a transplant date that coincides with family birthdays—brought joy in dark times.Post-transplant, Miley’s life has been a mix of recovery and lingering health effects, but she's thriving. Miriam emphasizes advocacy, honesty, and self-care for caregivers. Kayla, for her part, reflects on the overwhelming emotion of learning she was a match, undergoing all the testing during COVID, and then finally meeting the recipient of her cells in an unforgettable reunion in New York. The two families, now bonded for life, meet regularly and have built a deep friendship.  Next up: A trip for Kayla's family to Oklahoma to experience a powwow with Miriam, Miley, and their family!The videos below will have you reaching for the tissues and hopefully inspire many to get swabbed.Kayla also shares her decision to launch a nonprofit, SETX Leukemia Organization, focused on educating communities and recruiting new donors. Her goal is to prevent other families from facing what Miriam’s did—wondering if there will be a match in time. Kayla’s drive, born from her experience, continues to ripple outwards as she recruits more potential donors at local events with DKMS support.This episode isn’t just about survival—it’s about connection, purpose, and what can happen when strangers become family through an act of extraordinary generosity.SETX Leukemia Organization (Kayla’s nonprofit): https://setxleukemia.org/DKMS (Be The Match partner organization): https://www.dkms.orgDKMS Video about Kayla, Miley, and Miriam: https://www.youtube.com/watch?v=sNhwRxXMbw8Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Nick Giallourakis, Executive Director of the Steven G. Cancer Foundation and co-founder of Elephants and Tea, a digital magazine and support platform for adolescent and young adult (AYA) cancer patients and survivors. We begin by learning about Nick’s brother, Steve, whose incredible journey as a five-time cancer survivor—including osteosarcoma, Secondary AML, renal cell carcinoma, and pleomorphic sarcoma—serves as the foundation and inspiration for Nick’s work.Nick walks us through the origins of Elephants and Tea, which he co-founded with his mother, Angie. The platform emerged from a need for authentic, uncensored storytelling within the AYA cancer space. They pivoted from a traditional media model to a platform where survivors share their stories in their own words. This decision came from listening to survivors who didn’t want their experiences diluted. The magazine’s name—suggested through a contest—symbolizes the raw truth of cancer as the “elephant in the room,” while “tea” represents the comfort found in open dialogue.Nick highlights key challenges AYAs face: financial toxicity, unstable careers, insurance struggles, dating, and misdiagnoses due to age biases. He’s encouraged by the growing trend of self-advocacy in this group, including the rise in second opinions. We reflect on the post-COVID landscape, noting how virtual platforms opened doors for more isolated individuals, while in-person connections remain essential for others.We touch on caregiving—especially for AYAs where roles can be filled by peers, not just parents. Nick emphasizes the importance of caregivers asking for help and delegating tasks. He also speaks candidly about the emotional toll of losing community members and the need to acknowledge and process that grief.We explore how storytelling fuels community-building at Elephants and Tea. The magazine has contributors from 15 countries, highlighting a global hunger for connection and support. Nick shares how partnerships—like their impactful collaboration with Walgreens—are making tangible changes, such as mandatory fertility counseling for patients receiving chemo for the first time. Behind the scenes, they're working with industry and medical organizations to use these stories for systemic change.As for what’s next, Elephants and Tea continues to expand its in-person programming, including regional magazine release events. They're consistently surveying their audience to ensure their efforts are aligned with current needs. Nick leaves us with a heartfelt story of a late community member who, through a simple virtual Halloween hangout, helped spark deeper bonds and outreach across the cancer community.More: Elephants and Tea: https://elephantsandtea.comSteven G. AYA Cancer Research Fund: https://stevengcancerfoundation.orgCancer and Fertility Magazine produced by Elephants and Tea WITH Walgreens: https://elephantsandtea.org/cancer-fertility/YA Cancer Gabfest (Cactus Cancer Society): https://cactuscancer.org/ya-cancer-gabfestStupid Cancer: https://stupidcancer.org/Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we speak with Emily Long Sarro, a board-certified family nurse practitioner specializing in adolescent and young adult (AYA) care at Memorial Sloan Kettering Cancer Center. We focus on the unique challenges AYAs face before, during, and after a stem cell transplant. Emily shares how this age group, defined as 15 years old to 39 years old by the National Cancer Institute, is often overlooked in the healthcare system, stuck between pediatric and adult care settings. They’re navigating identity, relationships, careers, and independence—while also managing a serious illness, which can disrupt or halt life milestones.We discuss how Emily approaches AYA care with a holistic mindset—merging clinical treatment with emotional and mental health support. She emphasizes the importance of granting young patients autonomy and private space, especially when families may unintentionally overstep. She urges healthcare providers to always include mental health support in the treatment plan, noting that anxiety, depression, and even PTSD are common in this group, both during and long after treatment.Emily also stresses the need for daily coping tools like journaling, movement, and meditation to supplement infrequent counseling sessions. She encourages us to create trust by really listening, especially since many AYAs feel dismissed in early diagnostic stages due to their age.We then dive into critical but often unspoken topics: fertility preservation, sexual health, and survivorship. Emily outlines time-sensitive fertility options and highlights the emotional toll if these aren’t addressed early. She covers the hidden costs of care and offers resource suggestions like Livestrong and Cancer and Careers. She also calls attention to "silent disabilities" that persist post-transplant and affect career and daily function, emphasizing self-advocacy in the workplace. Coworkers and others may not "see" these limitations, but accommodations are often necessary.We discuss milestones missed due to treatment and the emotional weight of watching peers move on through social media. Emily suggests practical ways to stay socially connected, such as virtual events and platforms like Cancer Buddy. For caregivers, she reminds us that support often means just being present and handling small tasks that feel overwhelming to the patient.  It's important to hold space for patients' sadness over missing milestones, but when appropriate, the big picture remains: they may be sacrificing a few milestones now to experience many more later.The episode closes with a deeply moving survivor story—a young man from The Bronx who overcame mistrust in the medical system, underwent a transplant, and now runs a thriving music production business. His resilience and transformation encapsulate the hope and strength that defines this patient group.More:Marrow Masters Season 9, Episode 2, with fertility resources in Show Notes: https://marrowmasters.simplecast.com/episodes/preserving-fertility-through-cancer-treatmentCancerCare – https://www.cancercare.orgImerman’s Angels – https://imermanangels.orgLivestrong Fertility – https://livestrong.org/how-we-help/livestrong-fertility/Worth the Wait – https://worththewaitcharity.com/Maggie’s Dream (Fertility Preservation Assistance)–https://www.teammaggiesdream.org/Cancer and Careers – https://www.cancerandcareers.orgCancer Buddy App (Bone Marrow Foundation) –https://bonemarrow.org/support-and-financial-aid-2/support/about-cancerbuddyThanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Dr. Chris Dandoy, Associate Professor of Clinical Pediatrics and bone marrow transplant physician at Cincinnati Children’s Hospital. Dr. Dandoy shares his deep experience working with adolescents and young adults (AYAs), focusing on the unique challenges they face during and after cancer treatment. Our conversation centers around empowering AYAs to take ownership of their healthcare journey, improving outcomes, and restoring quality of life.Dr. Dandoy introduces us to Engraft, a collaborative learning network he founded, which unites providers, patients, families, industry partners, and nonprofits to improve survival and quality of life post-stem cell transplant. Rather than each center working in isolation, Engraft allows for real-time communication and problem-solving across 15 centers, helping everyone learn from each other’s best practices.A core message in our conversation is the importance of ownership—encouraging AYAs to ask questions, understand their medications, and advocate for themselves. We explore the concept of “ownership” through examples, like advocating for the removal of central lines after they’re no longer medically necessary, and understanding the role and risks of medications such as immunosuppressants and anti-infectives.Dr. Dandoy walks us through strategies to support medication adherence, such as using reminder apps, setting daily routines, and involving friends or caregivers for support. He also emphasizes the temporary nature of this intense medication schedule, helping patients see it as a phase, not a life sentence.We highlight how important it is for AYAs to stay engaged—learning about their labs, asking what new medications are for, and writing down questions for their healthcare team. Chris stresses that they don’t have to memorize everything; the goal is communication and awareness, not perfection.For caregivers, Chris offers validation and encouragement, reminding them this is a marathon with tough stretches, but also moments of progress. He urges caregivers to walk beside their loved ones—not behind or in front—fostering independence and shared decision-making.Dr. Dandoy closes with an inspiring story of a young survivor who endured ICU-level complications but is now back to running races and embracing life fully. It’s a powerful reminder that while the transplant journey is grueling, it’s also transformative.More:Engraft Learning Network: https://www.engraftlearningnetwork.org/Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

This episode of Marrow Masters brings us an incredible conversation with Kitrena Young, a two-time cancer survivor whose story spans decades and highlights the unique challenges faced by adolescents and young adults (AYAs). We begin by learning about Kitrena’s initial diagnosis of B-cell ALL with a Philadelphia chromosome at the age of eight, followed by a shocking relapse 23 years later. Her candor about how she recognized the early signs the second time around—bruising and fatigue—underscores the importance of self-awareness and advocacy.We discuss how navigating the adult healthcare system differed drastically from her pediatric experience. Kitrena takes us through her rapid efforts to get an urgent appointment and the emotional toll of being thrust back into the cancer world. With support from her brother and eventually finding care at the Memorial Sloan Kettering Cancer Center (MSKCC)  through a compassionate voice on the phone, she exemplifies what it means to be proactive in your care journey.Fertility preservation is another focal point. Kitrena recounts her decision to freeze 15 eggs before starting treatment and how her perspective on parenthood has evolved. She walks us through the emotional and physical realities of exploring surrogacy and genetic testing post-transplant—particularly the complex issue of donor DNA requiring a skin biopsy for viable results.Kitrena doesn’t shy away from discussing post-treatment life: weight gain linked to early menopause, a challenging international trip filled with setbacks and triumphs, and the frustrations of altered tastes and capabilities. Despite it all, she maintains a remarkable sense of humor and determination to continue traveling and living fully.Family and caregiver dynamics are woven throughout her story. She speaks lovingly about her partner’s unwavering support and the strength of her younger brother, who stepped up when needed most. Her message to caregivers includes practical advice—especially around vigilance with medical billing, noting errors she encountered from appointments she never attended.Finally, Kitrena emphasizes the growing importance of therapy for both patients and caregivers. She encourages the AYA community to use available resources to work through trauma, grief, and uncertainty—pointing to virtual options that didn’t exist in her earlier experience.Kitrena's journey is one of persistence, clarity, and empowerment. She brings vital, firsthand wisdom to the AYA cancer space, reminding us that while every survivor's path is different, no one should walk it alone.Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/FInancial Resource from the LINK: https://www.nbmtlink.org/financebookresources/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we talk with David Hartley, PhD, MPH, who shares his deeply personal experience as both a caregiver and a scientist. David is chair of the board for Engraft, a learning network focused on improving outcomes in transplant and cellular therapy through collaboration and shared data. While he brings professional expertise in infectious diseases and epidemiology, our conversation centers on his journey as a father navigating his son Devin's stem cell transplant at age 13.We begin by discussing Devin’s sudden diagnosis after months of unexplained symptoms. Despite initial medical dismissal, David’s persistence—fueled by his medical background—led to a hematologist visit that quickly changed everything. From that point, their lives became dominated by a rapid series of decisions leading to a bone marrow transplant at a center hours from home. With a second child, sick parent, and full-time jobs, David and his wife adopted a "divide and conquer" strategy: she managed Devin’s care in-hospital, while he held down things at home.Throughout, David stresses the overwhelming nature of transplant. It’s relentless and multifaceted—emotionally, logistically, and financially. His wife tracked medications, schedules, and insurance battles. One notable success was avoiding a lawsuit thanks to her meticulous record-keeping and strong communication with their insurance provider. David’s role included managing home infusions and learning as much as possible about the transplant process to mitigate risks, particularly infections. They juggled roles and adapted constantly, ensuring redundancy in caregiving in case one of them became unavailable.We delve into the emotional toll and the universality of caregiver fatigue. David admits to not managing his own stress well, noting long-term impacts. He discusses a study linking chronic stress to telomere shortening (he explains what that is- see below for the link), highlighting the physical consequences of caregiver strain. Still, he emphasizes the importance of accepting help and finding moments for self-care, however small.David shares powerful insights on advocacy, highlighting it as a team effort rather than a confrontation. He and his wife advocated for Devin’s pain management, educational access, and protection from medical errors. He stresses the value of caregivers’ unique skills and the importance of focusing on the outcomes that matter most to each family—whether clinical or social.Later in the episode, David offers a scientist’s perspective on the variability in patient outcomes and the limitations of statistics in predicting individual experiences. His reflections underscore the complexity of transplant medicine and the value of shared data systems like Engraft. He also reminds us not to panic over single research findings, advocating for a balanced, critical view of medical literature.We close with the good news: Devin is now a healthy, wise young adult. David expresses deep gratitude to the care teams and support networks that helped them through. His story is a testament to resilience, collaboration, and the essential role of caregivers in the transplant journey.Engraft: www.engraftlearningnetwork.orgTriage Cancer: https://triagecancer.orgAARP article about Telomore:  https://www.aarp.org/health/conditions-treatments/elizabeth-blackburn-stress-dna-hd/Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In our 17th season of the Marrow Masters podcast, we will be focusing on Adolescents and Young Adults, collectively known as AYAs.  Defined as between the ages of 15 and 39 by the National Cancer Institute, these patients have a unique cancer journey.  They are often too old for pediatric clinics, but feel out of place among older adults in a tradtional oncology department.This season we will talk to survivors, social workers, caregivers, and doctors.  And you won't want to miss a conversation between two moms who have become family - when one made a life saving donation to the other's daughter.Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we welcome Jeannie Wiarda, LMSW, a Medical Social Worker at the Adult Blood and Bone Marrow Transplant Center at Corewell Health in Grand Rapids, Michigan. Jeannie has been a Medical Social Worker at Corewell Health for 20 years including 14 years in Hospice and Palliative Care Inpatient; time in the Emergency Room prior to that, and has currently spent three years in bone marrow transplant. Jeannie provides insight into her work with transplant patients, particularly those navigating chronic graft-versus-host disease (GVHD), offering a comprehensive view of her role and strategies for supporting survivors through their journeys.Jeannie explains that her role as a social worker encompasses the entire transplant process—from the pre-transplant evaluation to post-transplant care. She helps patients address barriers like financial challenges, housing, and psychological trauma, tailoring support to each individual’s unique needs. Her involvement extends through the hospital stay and into recovery, offering continuity of care during this vulnerable time.A key theme is the interplay between stress, trauma, and the transplant experience. Jeannie highlights the impact of chronic stress on the brain, emphasizing the importance of caregivers who provide practical and emotional support. She underscores the necessity of self-care for caregivers, advocating for planned respite and support systems to sustain their well-being.Jeannie shares actionable strategies for patients and caregivers to find hope and purpose amid the challenges of GVHD. These include maintaining a healthy lifestyle, engaging in fulfilling activities, and staying connected with others. She stresses the value of education, encouraging patients to leverage resources like the nbmtLINK, BMT InfoNet, LLS, and the GVHD Alliance to empower themselves with knowledge and advocacy skills.Jeannie emphasizes finding ways to “live life” despite the limitations GVHD may impose. She recalls stories of patients adapting activities to their current abilities, referencing another podcast by the LINK where we talked to a survivor who switched to an e-bike for outdoor exploration. Jeannie also advocates for fostering connections through support groups and meaningful activities, such as volunteering, to regain a sense of purpose.Jeannie concludes with advice on processing grief and fear, embracing compassion, and accessing professional mental health resources, including cognitive behavioral therapy such as Eye Movement Desensitization and Reprocessing (EMDR), for addressing trauma. Her compassionate, holistic approach demonstrates the profound impact of social work in transforming survivorship into a journey of resilience and empowerment.More:GVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionBook: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we sit down with Sarah Bugen, a nurse at Memorial Sloan Kettering Cancer Center, who shares her expertise on managing life after a blood or bone marrow transplant, particularly in relation to chronic graft-versus-host disease (GVHD). The conversation centers on practical advice for patients and caregivers navigating recovery and maintaining quality of life.Regarding Oral GVHD, Sarah emphasizes the importance of oral health post-transplant, recommending soft toothbrushes, alcohol-free mouthwash, and avoiding irritants like spicy or acidic foods. She suggests soft, hydrating foods and stresses the need for regular dental checkups with oncologist approval. Hydration is vital for managing dry mouth, with a goal of 2-3 liters of fluids daily. Also, sugarless candy or gum can help stimulate saliva production.For nutrition, Sarah advises increasing caloric intake with protein powders, full-fat products, and small, frequent meals. She also highlights the value of bland diets and electrolyte packets for hydration. Avoiding triggers like dairy, caffeine, and greasy foods can minimize gastrointestinal discomfort (and even GVHD of the GI Tract), while clean cooking practices ensure safety during recovery.Skin care is another focus. Sarah recommends fragrance-free, gentle products like CeraVe and Cetaphil and suggests applying moisturizer after a shower to lock in hydration. Sunscreen, protective clothing, and sun hats are essential, even in winter, to protect sensitive post-transplant skin.Physical activity is vital for rebuilding strength and improving mental health. Sarah advises patients to start slow with light activities like walking or stretching and gradually increase as tolerated. Physical therapy exercises should be integrated into daily routines, and adequate rest is crucial after any activity.  Even though it may be counter-intuitive, continuous movement is key in the battle against fatigue.Caregivers also play a pivotal role. Sarah underscores the importance of open communication with the medical team and notes that caregivers can support medication management, track progress, and join support groups for additional resources. Caregivers are encouraged to celebrate small victories and take care of their own mental health, as they are an essential part of the recovery process.Finally, Sarah shares an incredible survivor story, and reflects on the resilience in her patients and the importance of celebrating milestones like “transplant birthdays.” She encourages patients to set realistic goals, maintain hope, and focus on incremental progress. Sarah leaves us with an inspiring reminder to be patient with ourselves, celebrate every achievement, and never stop fighting.Resources:Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionGVHD Alliance: https://www.gvhdalliance.orgThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we meet up with Josh Conklin, a seasoned bone marrow transplant (BMT) nurse at the University of Michigan Hospital, to explore his experiences, insights, and tips for managing chronic graft-versus-host disease (GVHD). With 11 years of inpatient experience, Josh offers a comprehensive view of the challenges and triumphs in caring for patients undergoing BMT.Josh explains that his primary role involves guiding patients through the most critical stages of their transplant journey, from chemotherapy conditioning to the stem cell infusion and the vulnerable recovery period afterward. He emphasizes the delicate balance required in managing GVHD, a condition that plays a dual role: while some GvHD is beneficial in suppressing cancer recurrence (graft-versus-leukemia effect), too much can lead to severe complications.Long-term immunosuppression is a cornerstone of GVHD management. Josh highlights the reliance on drugs like tacrolimus and, when necessary, steroids. However, we note the adverse effects of prolonged steroid use, such as muscle wasting, infections, and physical deconditioning. Emerging monoclonal antibody therapies are offering new hope, aiming to reduce these side effects.The discussion also sheds light on the psychological toll of repeated hospitalizations and the role caregivers play in patient success. Josh describes caregivers as essential for monitoring symptoms, administering medications, and providing emotional support. However, he acknowledges the significant strain caregiving can impose, especially during the critical first 100 days post-transplant when patients are highly vulnerable.Josh shares stories of resilience and purpose among his patients, underscoring the importance of a positive outlook and having something meaningful to strive for. He reflects on the impact of a strong support system, whether it’s family, friends, or peer mentorship programs, in helping patients navigate their “new normal.” Despite the challenges, Josh finds inspiration in his patients' ability to find joy and purpose, even in difficult circumstances.  He shares his experience with one woman in particular.This heartfelt conversation highlights the physical, emotional, and relational dynamics of BMT care, offering a glimpse into the profound impact of dedicated healthcare professionals like Josh.More:GVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In this episode, we talk to Carly Cappozzo, a senior occupational therapist specializing in graft-versus-host disease (GVHD) rehabilitation at a major cancer hospital. Carly shares her unique approach to patient care, emphasizing the importance of holistic and personalized therapy that empowers patients to regain their independence and identity post-treatment.Carly explains her role as an occupational therapist, detailing how she helps patients achieve independence in everyday tasks and rediscover activities that give their lives meaning. Her methods include activity analysis, breaking down tasks to identify barriers, and creating strategies to overcome them. She highlights the need for patient-centered care, ensuring therapy aligns with each individual’s goals and preferences.Carly discusses her work in GVHD rehabilitation, particularly focusing on the relationship between skin, fascia, muscle tightness, and the nervous system. She underscores the value of gentle, prolonged stretching and calming the nervous system to improve mobility and reduce stress. She also addresses cancer-related fatigue, comparing it to a depleted energy "bank account," and stresses the importance of prioritizing activities that bring joy while conserving energy for essential tasks.Practical solutions for ocular GVHD are explored, including leveraging technology’s accessibility features like text magnification and screen readers. Carly advises tailoring daily routines to maximize engagement in meaningful activities and adapting tasks to accommodate physical limitations. She highlights the importance of movement over exercise, recommending gentle, natural activity to improve well-being.Carly emphasizes the critical role of caregivers in fostering patient independence. She advises caregivers to balance support with opportunities for patients to contribute to daily life, thus maintaining a sense of purpose. Carly also shares inspiring stories of patients overcoming significant physical and emotional challenges through therapy, demonstrating resilience and achieving a fulfilling quality of life.The conversation concludes with advice for survivors and caregivers to approach GVHD recovery as a marathon rather than a sprint, emphasizing patience, consistency, and a collaborative approach to health and wellness.More:Seeing AI App: https://www.microsoft.com/en-us/ai/seeing-aiGVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In today’s episode, we talk with Krista Wood, a registered nurse with the Cell Therapy and Transplant Program at Victoria General Hospital in Halifax, Nova Scotia (Canada). Krista shares her invaluable insights and experiences working with patients dealing with chronic graft-versus-host disease (GVHD), a common complication following stem cell transplants. Our discussion delves into the importance of communication, post-transplant care, and finding joy and purpose during survivorship.Krista emphasizes that early detection and treatment of GVHD are critical. She encourages patients to report any changes, no matter how minor they may seem, and reassures them that healthcare teams are there to help. This open communication is vital, as post-transplant life can be overwhelming with fears of relapse or complications. Ensuring patients have direct access to their care team can ease their anxieties and foster trust.Routine health checks, like blood work and pulmonary function tests, play a crucial role in monitoring potential complications. Krista explains the importance of tracking liver enzymes, bone density, and lung function to catch and address issues early. She underscores that post-transplant care goes beyond the transplant itself, extending to overall health maintenance, including routine screenings like mammograms, dental care, and colorectal exams.Reconnecting with life post-transplant is another important theme. Krista encourages patients to rediscover the activities they loved before their illness, whether it’s returning to work, volunteering, or pursuing hobbies. Work and social engagement provide purpose and can aid emotional recovery. For those who can’t return to work, finding alternative ways to contribute, such as volunteering with organizations like the Leukemia & Lymphoma Society or HealthTree, can offer fulfillment and connection. (Note: the National Bone Marrow Transplant Link (nbmtLINK) has a peer mentor program as well, email info@nbmtlink.org if you'd like to be a peer or need a peer mentor. )Preparing for transplant and understanding GVHD beforehand is crucial. While some patients prefer to know everything, others may only want the basics. Krista and her team provide consistent education in manageable increments to help patients absorb key information. She explains factors that increase the risk of GVHD, such as donor characteristics and patient preconditioning, and stresses the importance of entering the transplant process in the best possible physical shape.Krista also highlights the importance of addressing sensitive topics like sexual health, which many patients are reluctant to discuss. She brings up these issues proactively, ensuring patients feel supported and have access to necessary resources.Finally, Krista shares stories of hope, including patients who, despite long-term challenges, have regained a sense of normalcy and fulfillment. She reminds us that while every patient’s journey is unique, resilience and adaptation are common threads in their recovery.This episode is a testament to the critical role nurses like Krista play in guiding patients through this complex medical journey, offering care, education, and encouragement every step of the way.More:Leukemia & Lymphoma Society: https://www.lls.orgHealthTree Foundation: https://www.healthtree.orgGVHD Alliance: https://www.gvhdalliance.orgLink to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutritionThank you to our sponsors. This season is supported by a healthcare contribution from Sanofi  https://www.sanofi.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.