224: A son with Burkitt lymphoma at 8 year's old - Reina's Story
Release Date: 07/10/2024
235: A Mother’s Journey of Love, Loss, and Resilience- Kathy's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.”-Kathy In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy’s story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital...
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234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. “You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their...
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233: From NICU Nurse to NICU Mom: Premature Twins born at 33 weeks - Brittney’s Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
A huge thank you to our sponsor of today's podcast, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This...
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232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
A huge thank you to our sponsor of today's podcast, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This makes...
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231: Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots. The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app...
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230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and...
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229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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...
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228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo 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...
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227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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....
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226. Moms on a Mission: Raising Pediatric Feeding Disorder Awareness with Jaclyn & Athena from Feeding Matters
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson 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...
info_outline"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!
- 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.