Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

By: Katie Taylor Certified Child Life Specialist
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  • Summary

  • Parents share their journeys and experiences related to having a child with an illness or medical condition. These powerful, and sometimes emotional, stories offer connection in what can typically feel like an isolating world. Visit www.childlifepodcast.com or email info@childlifepodcast.com to share your story.
    2024 Child Life On Call LLC
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Episodes
  • 225: Embracing Alopecia: A Mother’s Journey of Advocacy, Instincts, and Resilience-Lexi's Story

    225: Embracing Alopecia: A Mother’s Journey of Advocacy, Instincts, and Resilience-Lexi's Story
    Jul 24 2024
    "I feel like I owe it to him to explore other avenues. Acceptance doesn’t mean giving up; it means continuing to learn and adapt."- Lexi In this episode of Child Life On Call, Katie Taylor speaks with Lexi, a devoted mother of two, about her family's journey with alopecia universalis. Lexi shares the emotional challenges and triumphs of supporting her three-year-old son, Penn, who was diagnosed with this rare condition. Through sharing her story, Lexi highlights the power of parental instincts, blending Western and Eastern medicine, and advocating for her child's unique needs. Her story offers valuable insights for parents and professionals alike, emphasizing the power of resilience and community in pediatric healthcare. Key Insights: Early Diagnosis and Gut Instincts: Lexi's intuition played a crucial role in identifying her son's alopecia early on, showcasing the importance of parental instincts, and advocating for them, in healthcare. Navigating Emotional Challenges: Lexi discusses the emotional impact of her son's diagnosis and how her husband’s positive outlook has been a source of strength for their family. Advocacy and Medical Care: The necessity of finding specialized dermatologists and the integration of Western and Eastern medical practices are highlighted as key components of Penn's care. Coping with Public Reactions: Lexi shares strategies for handling public reactions and educating others about alopecia, aiming to foster empathy and understanding. Community and Support Systems: The episode underscores the value of support systems, both within the family and from the wider community, in navigating a rare medical condition. Resources and Tips: National Alopecia Areata Foundation: Connect with support groups, explore treatment options, and find resources tailored for alopecia families. https://www.naaf.org/youth-mentor-program/: Support group pairing kids with mentors that Lexi mentioned. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
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    40 mins
  • 224: A son with Burkitt lymphoma at 8 year's old - Reina's Story

    224: A son with Burkitt lymphoma at 8 year's old - Reina's Story
    Jul 10 2024
    "My immediate thought was I'm going to lose my son. That was where my head went immediately." - Reina Introduction In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott's treatment, the importance of advocating for her child's needs, and the support systems that played a crucial role in their journey. Reina’s story highlights resilience, the power of community, and the significance of effective communication in pediatric healthcare. Key Insights: Early Diagnosis and Challenges: Elliott's diagnosis journey began with a seemingly minor issue, leading to the discovery of a large mass in his tonsil, which was diagnosed as Burkitt lymphoma. Importance of Advocacy: Reina emphasizes the critical role of parental advocacy, including meticulous record-keeping, clear communication with medical staff, and involving Elliott in his care decisions. Support Systems: The support from family, the school community, and the involvement of a Child Life Specialist were invaluable in navigating the complexities of treatment and providing emotional and practical help. Emotional Coping: Reina discusses the emotional toll of her son's illness, the importance of mental health support, and the strategies used to help Elliott cope with the changes and challenges of his treatment. Creating Resources: Inspired by their experience, Reina has created children's books to help other families navigate similar journeys, emphasizing the importance of involving children in their care and providing accessible resources. Resources and Tips: "When a Kid Like Me Fights Cancer" and other resources for helping children understand and cope with cancer. Read "A Brave Kid's Guide to Lymphoma" and"A Brave Kid's Guide to Leukemia" to help your child cope with a lymphoma or leukima diagnosis. To learn bout the mission of Hello Brave, founded by Reina, visit their website here. When parents feel empowered, everyone wins – kids thrive and the care team excels! Get the SupportSpot app! Now available for ALL parents without a hospital code! SupportSpot WebsiteDownload SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare Learn more here. Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
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    35 mins
  • 223: [6 minutes] Big News: The Child Life On Call App is Now SupportSpot!

    223: [6 minutes] Big News: The Child Life On Call App is Now SupportSpot!
    Jul 1 2024

    Episode Description:
    In this special impromptu episode, Katie Taylor, Certified Child Life Specialist and CEO of Child Life On Call, shares some exciting news! We're rebranding our beloved Child Life On Call app to SupportSpot.

    Tune in to hear why we made this change and what it means for you and your family. Plus, get a sneak peek into the new features and benefits you can expect from SupportSpot. This is an announcement you won’t want to miss!

    Show Notes:

    [00:00] Introduction

    • Welcome from Katie Taylor
    • Brief overview of the exciting announcement

    [00:30] Reflecting on the Journey

    • Katie’s background and passion for child life services
    • The origin of the Child Life On Call podcast and its impact

    [01:00] The Big Announcement

    • Introducing the rebrand: Child Life On Call app is now SupportSpot
    • Reasons for the change:
      • Enhanced Clarity: SupportSpot better reflects the app’s purpose and broadens its appeal
      • Broader Appeal: Communicates the app as a comprehensive family support resource during medical experiences

    [02:00] The Power of Prepared and Empowered Parents

    • The importance of parents knowing what to expect and how to advocate for their children
    • The impact of child life services beyond children’s hospitals

    [03:00] The Evolution of Child Life On Call

    • From podcast to app: How Child Life On Call grew to SupportSpot
    • The incredible journey and feedback from parents and care teams

    [04:00] Features and Benefits of SupportSpot

    • Overview of new features and improvements
    • Access to resources, child life tips, procedure guides, therapeutic activities, and more

    [05:00] How to Get SupportSpot

    • Available for download on iOS and Android
    • Keeping the price low to ensure accessibility for all families
    • Encouraging parents to spread the word

    [06:00] Continuing Hospital Partnerships

    • Ongoing collaboration with hospitals to ensure families have access to the app at no cost
    • The vision for future growth and impact

    [06:30] Conclusion

    • Katie’s promise to parents: Empowerment and confidence in healthcare situations
    • Closing remarks and gratitude for the support

    Links and Resources:

    • SupportSpot Website
    • Download SupportSpot iOS or Android
    • Follow us on Instagram

    Don’t forget to subscribe, rate, and review Child Life On Call on your favorite podcast platform. Your support helps us reach more families and provide them with the tools they need for a positive healthcare experience.
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    7 mins
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