Caregivers SHARE, a St. Jude Podcast

Episode 12: Considering a Clinical Trial for a Child: A Caregiver's View

When a child is facing a serious illness, being asked to consider a clinical trial can feel overwhelming. This episode of Caregivers SHARE continues our 2-part series on clinical trials by focusing on the real questions, emotions, and decisions caregivers face.  Carina Richardson shares her family’s experience enrolling her son in a clinical trial. Seth Karol, MD, shares insights from a doctor’s perspective, on how he would approach a clinical trial as a caregiver. Clay Culp, LCSW, guides the conversation with thoughtful questions and key points. Together, they talk about how clinical trials may differ from standard treatment, what the consent process looks like, and why clear, ongoing communication is essential.  This episode explores:  * How clinical trials can change over time and differ for each child * What worries caregivers often have and how care teams can help * How child life specialists and other support services can help families * Why asking questions and speaking up matters  This episode offers reassurance, perspective, and empowerment for caregivers making decisions about their child’s care.  A special thank you to Clay Culp, social work [https://www.stjude.org/care-treatment/treatment/clinics-services/social-work.html] manager at St. Jude; Seth Karol, MD, associate faculty member at St. Jude who specializes in leukemia and lymphoma [https://www.stjude.org/care-treatment/treatment/childhood-cancer/leukemia-lymphoma.html]; and parent Carina Richardson.    This episode was recorded on March 5, 2026.  For more background, listen to the previous episode: “What Is a Clinical Trial?” [https://www.stjude.org/care-treatment/patient-families/family-caregiver/caregivers-share-podcast/caregivers-share-season-3/what-is-a-clinical-trial.html]  Learn more about Carina’s son Nolan’s diagnosis of medulloblastoma on Together by St. Jude™ [https://together.stjude.org/en-us/conditions/cancers/medulloblastoma.html] and St. Jude Care & Treatment [https://www.stjude.org/care-treatment/treatment/childhood-cancer/brain-tumors/medulloblastoma.html].     Learn more about clinical trials on Together by St. Jude™ [https://together.stjude.org/en-us/treatment-tests-procedures/clinical-trials/what-are-clinical-trials.html] and St. Jude Care & Treatment. [https://www.stjude.org/care-treatment/clinical-trials.html#f-sj_trialstatus=Recruiting]     The quote that Carina and Clay reference is, “The best laid schemes of mice and men go oft awry, and leave us nothing but grief and pain for promised joy,” written by poet Robert Burns in his poem “To a Mouse” in 1785.    This discussion is meant to provide a general overview. Information may vary depending on your child’s diagnosis, age, health history, and the type of clinical trial. Always talk with your child’s care team for details specific to your child.    St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode 11: What is a Clinical Trial?

Clinical trials are research studies that look at ways to improve care for serious illnesses. For many families, the terms “clinical trial” or “clinical research” may be unfamiliar or overwhelming. In this episode of Caregivers SHARE, listeners will learn what clinical trials are, how they work, and how they differ from standard medical care. Host Clay Culp, LCSW, is joined by Seth Karol, MD [https://www.stjude.org/people/k/seth-karol.html], and caregiver Carina Richardson for a clear conversation about what families need to know when considering a clinical trial. Seth explains the different types and phases of clinical trials, what families can expect during the process, and the safety measures in place to protect children who participate. Clay addresses the emotional aspects of enrolling a child in a trial. Carina asks the questions many parents have as they work to make informed decisions about their child’s care. A special thank you to Clay Culp, social work [https://www.stjude.org/care-treatment/treatment/clinics-services/social-work.html] manager at St. Jude; Seth Karol, a St. Jude doctor who specializes in leukemia and lymphoma [https://www.stjude.org/care-treatment/treatment/childhood-cancer/leukemia-lymphoma.html]; and parent Carina Richardson. This episode was recorded on March 5, 2026. Learn more about Carina’s son Nolan’s diagnosis of medulloblastoma on Together by St. Jude™ [https://together.stjude.org/en-us/conditions/cancers/medulloblastoma.html] and St. Jude Care & Treatment [https://www.stjude.org/care-treatment/treatment/childhood-cancer/brain-tumors/medulloblastoma.html]. Find additional information about clinical trials on Together by St. Jude™ [https://together.stjude.org/en-us/treatment-tests-procedures/clinical-trials/what-are-clinical-trials.html] and St. Jude Care & Treatment. [https://www.stjude.org/care-treatment/clinical-trials.html#f-sj_trialstatus=Recruiting] This discussion is meant to provide a general overview. Information may vary depending on your child’s diagnosis, age, health history, and the type of clinical trial. Always talk with your child’s care team for details specific to your child. St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode 10: Communicating with the Care Team During End-of-Life Care

When a child’s condition changes or they are nearing the end of life, caregivers face hard choices. It can help to focus on comfort, quality of life, and what matters most to the child. In this episode, Tekeima Townsend‑Billups talks with parents Tasha and Dean Ives about caring for their daughter, Sydney, in her final months of life. They describe how their advocacy changed as Sydney’s health declined. They share what “quality of life” meant for their family, how they talked honestly with their children, and how they made day‑to‑day decisions based on Sydney’s well-being and wishes. Mike McNeil shares guidance on communicating with the care team during this time. He explains shared decision‑making and how trust supports better end‑of‑life care. He encourages caregivers to name their hopes and worries and to ask for the help they need. A special thank you to our host Tekeima Townsend‑Billups, senior staff chaplain [https://www.stjude.org/care-treatment/treatment/clinics-services/spiritual-care-services.html] at St. Jude; our expert Mike McNeil, pediatric oncologist and palliative care [https://www.stjude.org/research/departments/oncology/quality-of-life-and-palliative-care.html] physician at St. Jude; and our guests Tasha and Dean Ives. This episode was recorded on December 5, 2025. Learn more about palliative care on St. Jude Care & Treatment [https://www.stjude.org/care-treatment/treatment/clinics-services/quality-of-life-and-palliative-care.html] and Together by St. Jude [https://together.stjude.org/en-us/medical-care/palliative-care.html]™. Listen to Tasha and Dean discuss communicating with the care team during treatment [https://www.spreaker.com/episode/episode-9-communicating-with-the-care-team-during-treatment--70627952]. St. Jude does not endorse any branded product or organization mentioned in this podcast.

Episode 9: Communicating with the Care Team During Treatment

Communicating with the care team can feel overwhelming, especially when your child is going through a serious illness and you are facing big decisions. In this episode, Tekeima Townsend-Billups talks with caregivers Tasha and Dean Ives, as well as patient family-centered care expert Brittany Barnett, about how to ask questions and advocate for your child. Tekeima describes advocacy as a “sacred practice of love in action.” Advocacy moves caregivers to speak up during treatment. Tasha and Dean share how they learned how to advocate for their daughter, Sydney, during her treatment for astrocytoma. They explain what helped them find their voice, understand treatment options, and work with the medical team. They discuss balancing hope and reality, handling hard conversations, and trusting their instincts as parents. Brittany offers tips for joining in medical rounds, finding support, and making sure that your concerns are heard. A special thank you to our host, Tekeima Townsend-Billups, senior staff chaplain [https://www.stjude.org/care-treatment/treatment/clinics-services/spiritual-care-services.html] at St. Jude; our expert, Brittany Barnett, manager of the Patient Family-Centered Care Program [https://www.stjude.org/care-treatment/patient-families/pfcc.html] at St. Jude; and to our guests, Tasha and Dean Ives. This episode was recorded on November 5, 2025.Learn more about Sydney’s diagnosis of astrocytoma [https://together.stjude.org/en-us/conditions/cancers/astrocytoma.html] on the Together by St. Jude™ online resource. Learn about brain and spine tumor treatment [https://www.stjude.org/care-treatment/treatment/childhood-cancer/brain-tumors.html] on St. Jude Care & Treatment. Learn more about patient family-centered care and shared decision-making on the Together Blog [https://together.stjude.org/en-us/blog/article/engaging-patients-and-families-in-their-care-journey.html].

Episode 8: Relationships and Social Life During Treatment

A healthy social life and relationships are important when going through cancer or another serious illness. In this episode, Clay Culp and Elyse Heidelberg talk with caregiver Polly Fulford and her college-aged son Taze about friendships and dating while you have cancer. Polly and Taze share how he balanced spending time with friends and his girlfriend while listening to his care team’s advice. Elyse explores ways to choose which social events to attend, how to ask the medical team questions, and what to share on social media. Clay guides the conversation with questions about friendships, hardships, and the importance of support. A special thank you to our host, Clay Culp, senior social worker at St. Jude; our expert, Elyse Heidelberg, clinical psychologist at St. Jude; and to our guests, Polly Fulford and Taze Fulford. This episode was recorded on January 8, 2026. Learn more about Taze’s diagnosis of Hodgkin lymphoma on St. Jude Care & Treatment [https://www.stjude.org/care-treatment/treatment/childhood-cancer/leukemia-lymphoma/hodgkin-lymphoma.html] and Together by St. Jude™ [https://together.stjude.org/en-us/conditions/cancers/hodgkin-lymphoma.html].For information on nurturing your relationship with your partner as a child goes through treatment, listen to “How to Keep Your Relationship Strong.” [https://www.stjude.org/care-treatment/patient-families/family-caregiver/caregivers-share-podcast/caregivers-share-season-2/how-to-keep-your-relationship-strong.html] St. Jude does not endorse any branded product or organization mentioned in this podcast.