Épisodes

  • Two Mothers' Love: The Touching Story of A Life Saving Donation and Transplant

    Two Mothers' Love: The Touching Story of A Life Saving Donation and Transplant
    Jun 18 2025

    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.org

    DKMS Video about Kayla, Miley, and Miriam: https://www.youtube.com/watch?v=sNhwRxXMbw8

    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/nbmtLINK

    Follow 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
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    41 min
  • Elephants and Tea: Why AYAs Deserve Their Own Cancer Support Space

    Elephants and Tea: Why AYAs Deserve Their Own Cancer Support Space
    Jun 18 2025
    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
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    29 min
  • What Young Adults with Cancer Really Need: A Conversation with Emily Sarro

    What Young Adults with Cancer Really Need: A Conversation with Emily Sarro
    Jun 18 2025
    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
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    27 min
  • From Surviving to Thriving: AYA Cancer Care with Dr. Chris Dandoy

    From Surviving to Thriving: AYA Cancer Care with Dr. Chris Dandoy
    Jun 18 2025

    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/nbmtLINK

    Follow 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
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    18 min
  • Relapse and Resolve: Two-Time Survivor Kitrena Young’s Story of Grit and Growth

    Relapse and Resolve: Two-Time Survivor Kitrena Young’s Story of Grit and Growth
    Jun 18 2025

    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/nbmtLINK

    Follow 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
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    30 min
  • Caregiver Perspective: Divide and Conquer, A Father Shares The Journey

    Caregiver Perspective: Divide and Conquer, A Father Shares The Journey
    Jun 18 2025
    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
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    35 min
  • Season 17 Trailer: Adolescents and Young Adults (AYAs)

    Season 17 Trailer: Adolescents and Young Adults (AYAs)
    Jun 12 2025

    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/nbmtLINK

    Follow 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
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    4 min
  • Licensed Social Worker Jeannie Wiarda's Guide to GVHD and Survivorship

    Licensed Social Worker Jeannie Wiarda's Guide to GVHD and Survivorship
    Jan 30 2025

    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.org
    • Link to LLS free Nutrition Consultations: https://www.lls.org/managing-your-cancer/food-and-nutrition
    • Book: The Body Keeps the Score: https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748
    • Thank 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/nbmtLINK

    Follow 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
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    29 min