By Katie Taylor, Certified Child Life Specialist
4.9
139139 ratings
The podcast currently has 291 episodes available.
230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story
"We’ve joined a club that nobody wants to be a part of, but the good part is we have the best members."
A huge thank you to our sponsor of today's podcast, Begin Health.
In this episode, Katie Taylor interviews Heather, host of the Navigating Childhood Cancer podcast and mother of a teenager diagnosed with leukemia, in honor of Childhood Cancer Awareness Month. They discuss the challenges of receiving a cancer diagnosis for your child, managing cancer treatments, including pill swallowing, and navigating parent guilt. Heather shares her family's journey and how she balanced protecting her son while also being open about her experience to support other families. Through her podcast, Heather provides a space for families to share their stories, giving listeners the strength to cope with childhood cancer.
Key Insights & Lessons Learned:
Pill Swallowing is a Process: Sometimes the goal isn’t mastering a technique but simply finding what works, even if it means grinding pills for an extended period.
The Importance of Listening to the Child: Empowering the child to make decisions about their care, like how they take their medicine, can alleviate unnecessary stress.
Parent Guilt is Real, but Not Always True: Parents often struggle with feeling responsible for their child's illness, but as Heather was reminded, it's not your fault.
Sharing Helps, But Boundaries Matter: Heather highlights the balance of sharing personal experiences while respecting her son's privacy, which is crucial when sharing such a sensitive journey.
Resources and Tips:
Navigating Childhood Cancer Podcast: Hosted by Heather, this podcast shares stories and lessons from families going through childhood cancer. Listen here
Book Recommendation: What’s an IV? by Melissa Fadel and Rosemary Pang – a child-friendly guide of the IV process. Get the book here
Begin Health
To learn more about the sponsor of today's episode, Begin Health, click the link here to get a 25% off coupon!
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
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
"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim
In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant’s diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of trusting your parental instincts, advocating for your child, and finding innovative ways to manage chronic pain, offering hope to parents in similar situations.
Key Insights:
Trust Your Instincts: Kim emphasizes the importance of trusting your gut as a parent and advocating persistently when something feels wrong, despite resistance from doctors.
Holistic Care: The integration of multiple specialists and specialties working together in a holistic manner, including both physical and psychological treatment methods, was key to finding a comprehensive treatment plan for her son.
Creative Healing: Techniques like art therapy, music therapy, and acupuncture played a significant role in managing her son’s chronic pain and improving his quality of life.
Resilience Leads to Success: Despite the odds, Kim’s son went from a wheelchair to playing in the NFL, showcasing the power of determination, support, and a positive mindset.
Support Networks Matter: Finding others who understand your struggles, whether through social media or hospital communities, can provide invaluable emotional and practical support.
Resources and Tips:
Creative Healing for Youth in Pain (CHYP): Offers free online resources for adolescents and families managing chronic pain. Visit mychipchyp.org for webinars, creative healing workshops, and more.
Mindfulness & Pain Management: Dr. Zeltzer’s pioneering work in pediatric pain management focuses on rewiring the brain through techniques like self-hypnosis and mindfulness.
Sour Candy Tip for Pain Management: A sour candy before a painful shot can help trick the brain into focusing on the sour taste instead of the pain.
Book Reccomendation: What's an IV Start by Melissa Fatal, A Child Life Specialist, and Rosemary Peng, a nurse is a new favorite of ours, walking us through how to prep a child for an IV start.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
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
We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.
In this heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki’s journey navigating her daughter Taylor's diagnosis from day one, the emotional rollercoaster of becoming a medical parent, her advocacy for Taylor's care, and the importance of equity in newborn screenings for CF. With Taylor's unique case, Nikki discusses the challenges and triumphs of managing a life-changing diagnosis, emphasizing the role of medical teams and community support in fostering resilience and hope.
Key Insights:
The Importance of Early Diagnosis: Nikki emphasizes how critical early diagnosis was for her daughter Taylor, who started life-saving medication within months of her birth.
Advocacy and Education: Nikki shares how she became an expert in her daughter’s care, highlighting the necessity of parents being active members of the care team.
Equity in Healthcare: Nikki passionately discusses the disparities in newborn screenings for children of color and the need for equity in medical care to prevent delayed diagnoses.
The Power of Community: Finding other parents online and connecting with the Cystic Fibrosis Foundation were vital for Nikki in navigating the challenges of CF.
"Finding other parents online who are going through the same thing has been a lifeline for me." – Nikki DeLeo
Resources & Tips:
Cystic Fibrosis Foundation: Visit the CF Foundation to find local chapters and resources for parents and caregivers.
Book Recommendation: Breath from Salt - An insightful book about the CF community and the advancements in CF care.
Follow Nikki's Journey: Check out Nikki’s Instagram page, @salt_for_sweet_t, for more on her family’s journey.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
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
"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman
In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized. Gay’s insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases.
Key Insights:The significance of early genetic testing in providing crucial information and guiding treatment decisions.
The importance of building a support network to navigate the medical and educational challenges.
Staying organized and persistent in the face of numerous medical consultations and uncertainty.
The emotional and psychological toll of advocating for a child with a rare disease.
The role of patient advocacy in supporting families and advancing research.
GeneDx: Genetic testing and counseling services.
Child Neurology Foundation: Resources for fighting insurance denials and other support.
Women In Bio and Athena: Support network for women in science and biotechnology.
Connect with Gay on LinkedIn.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
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
In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They discuss how Feeding Matters supports families and healthcare professionals, helping them navigate the challenges of feeding disorders. This episode provides a valuable perspective for both parents and child life specialists, highlighting the impact of community and support in overcoming these challenges.
Key Insights and Lessons:
The Importance of Early Intervention: Identifying and addressing feeding disorders early can significantly reduce long-term psychosocial impacts on children.
Advocacy and Empowerment: Parents must learn to advocate for their children, even when it feels overwhelming, to ensure they receive the necessary care and support.
Comprehensive Support Systems: Organizations like Feeding Matters offer essential resources, peer coaching, and financial assistance to families facing pediatric feeding disorders.
Understanding Pediatric Feeding Disorders: Awareness and education about feeding disorders are crucial for both parents and healthcare providers to properly support affected children.
Mental Health Support: Prioritizing mental health for both parents and children is essential in managing the stress and challenges associated with feeding disorders.
Feeding Matters: An organization that supports parents of children with pediatric feeding disorders through advocacy, education, support, and research
Peer-to-Peer Support: Connect with other parents through Feeding Matters’ peer coaching program for shared experiences and support.
Financial Assistance: Due to the high costs and low insurance coverage of treating pediatric feeding disorders, Feeding Matters provides financial assistance.
Annual Pediatric Feeding Disorder Conference: Attend or participate in the yearly conference organized by Feeding Matters to stay updated on the latest research and resources.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
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
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:
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
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!
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
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
[00:30] Reflecting on the Journey
[01:00] The Big Announcement
[02:00] The Power of Prepared and Empowered Parents
[03:00] The Evolution of Child Life On Call
[04:00] Features and Benefits of SupportSpot
[05:00] How to Get SupportSpot
[06:00] Continuing Hospital Partnerships
[06:30] Conclusion
Links and Resources:
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.
In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay. Listen to hear how she balanced work, advocating for her son’s needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations.
"The hardest part isn't being in the NICU; it's the real advocating that starts after discharge." - Ashley O'Neil
Key Insights:
Early Challenges: Ashley shares the difficulties of having a baby born at 25 weeks and the emotional turmoil of seeing healthy babies at work while her own child struggled in the NICU.
Advocacy: Emphasizing the importance of advocating for her child, Ashley highlights how she meticulously kept records, attended rounds, and communicated her son's needs to the medical staff.
Support Systems: The significance of community support and online groups played a crucial role in her journey.
Resilience: Despite being told what her son might not achieve, Ashley remained steadfast in her belief in his potential, advocating for her son, and celebrating every milestone and victory.
Navigating Systems: The real battle often begins after leaving the NICU, dealing with insurance, medical equipment, and ensuring her child receives the necessary care and resources.
Resources and Tips
Ronald McDonald House: Provides essential housing and support for families with hospitalized children.
Insurance Navigation: Practical advice on dealing with insurance companies and securing
Kids Grief Support: Find information and resources to support grieving children.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Links and Resources:
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
On today’s episode, Katie had the privilege of speaking with Annie Gunning, a Certified Child Life Specialist and Grief Counselor, and Haley Thomas, a Licensed Master Social Worker, on their collaborative efforts to support families at Hope for HIE. Annie and Haley tailor their support to each family's unique needs, dedicating time to assess and implement the most effective strategies. Under the visionary leadership of Betsy Pilon, Executive Director of Hope for HIE, Annie and Haley are setting new standards in providing exceptional support to the families they serve.
Key Takeaways
It’s important to meet families where they are.
Finding ways to help prepare children for procedures with items you have at home empowers children and their families.
Supporting the non-patient can be very impactful to families, this includes the siblings and parents.
Loss and Bereavement support is crucial to families. Grief is not linear and the community as a whole can be affected by a loss. Annie and Haley support these families through monthly support groups.
Collaborative support from one another professionally can create strong partnerships with the best interest of the family and child at heart.
When seeking help in a hospital setting, reach out to the person who makes you feel most comfortable. If they cannot provide the specific support you need, they will know who can and will direct you to the right resource.
Learn more about Hope for HIE here.
Parent Stories Matter
If you enjoyed this episode, we encourage you to listen to more CLOC episodes where we highlight the experiences of parents navigating the healthcare system. Each story offers valuable perspectives and practical advice on supporting and empowering families during their healthcare journeys.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Empower Parents & the Care Team with SupportSpot85% 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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