What happens when your child seems sick, but everything keeps coming back normal?

For a lot of parents, the scariest part isn't the diagnosis. It's the not knowing. It's being told everything looks fine when your gut is telling you something is off.

This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast.

Kaylee shares what it was like trying to make sense of symptoms that didn't quite add up. Normal test results. A child who seemed okay one minute and not the next. And that moment when everything changed with one scan.

From there, their world shifted quickly. A brain bleed. A diagnosis of bacterial meningitis. Emergency surgery. A 40-day hospital stay. Kaylee talks about what it took to keep going through all of it, while also caring for a newborn and being away from her other child.

She also shares how she supported Kanessa through it all. Being honest about what was happening. Preparing her for procedures. Letting her ask questions. And leaning on Child Life in a way that made a huge difference for both of them.

If you've ever wondered if you're overreacting or if you should push for more answers, this episode will stay with you. Kaylee's story is a reminder to trust yourself and keep advocating.

This episode is sponsored by Gebauer PainEase®. We're so grateful for their support. To learn more about this product, visit their website.

This is our 300th episode, which feels pretty surreal. We're so grateful you're here.

Special Giveaway ☕️
Your support means so much to us, and we're truly grateful for this community. As a small thank you, we're offering a $10 Starbucks gift card to the first 20 listeners who leave a review. If the podcast has made an impact on you, we'd love to hear your thoughts. Simply screenshot your review and email it to podcast@childlifeoncall.com to claim your gift. Thank you for being part of this journey with us 💛

Resources & Ways to Connect

Connect with Kaleigh on Instagram

Facebook Meningitis Support Group

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords:
bacterial meningitis child story, pediatric brain hemorrhage, delayed diagnosis child illness, parenting through medical trauma, child life support hospital, pediatric emergency story, advocating for your child medical care, cochlear implant child, hearing loss after meningitis, navigating pediatric hospitalization, medical parent journey, trusting parental instincts

What happens when your child already senses something life-changing—before anyone has found the words to say it out loud?

When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all.

This week, Katie sits down with Anna Lonon, founder of the Lonon Foundation, to share her family's story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and later welcoming a newborn daughter, Anna faced the unimaginable reality of caregiving, loss, and parenting through profound uncertainty.

Anna opens up about what it looked like to balance hospital visits, therapies, and daily life, and the emotional toll of making impossible decisions while trying to hold her family together. She shares powerful moments, including the realization that her young son understood far more about his father's illness than anyone had explained, and how that shaped the way she approached communication in the years that followed.

After later facing her own cancer diagnosis, Anna made a different choice—seeking out child life support early to guide honest, developmentally appropriate conversations with her children. Through her experiences, she highlights the importance of listening to children's cues, trusting your instincts as a parent, and creating space for both grief and resilience.

If you've ever struggled with how to talk to your child about illness, felt overwhelmed as a caregiver, or wondered how to support your family through uncertainty, this conversation offers validation, insight, and hope.

This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

Resources from today's episode:
Visit the Lonon Foundation website

Pickles Group

Wonders & Worries

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords:
parent cancer child support, talking to kids about cancer, caregiver mental load, parenting through illness, child life specialist support, family coping with cancer, grief and parenting, pediatric emotional support, supporting children through loss, caregiver burnout, trauma-informed parenting, childhood understanding of illness, cancer impact on families

What happens when your instincts tell you something is wrong—but you're dismissed again and again?

For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers.

This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis.

Nikki shares what those early days looked like—from navigating testing and procedures to receiving the diagnosis that changed everything. She opens up about the grief, fear, and urgency that followed, and how she quickly stepped into the role of advocate, building a care team and learning how to navigate complex medical systems in real time..

If you've ever questioned your instincts or felt lost navigating a diagnosis, this conversation offers validation, practical guidance, and hope.

This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

• Visit Nikki's Website

• Find her book wherever books are sold (Amazon, Barnes & Noble, Target, and more)
  
  

Helpful Resources Mentioned

• National Organization for Rare Disorders (NORD)
  
  

• Global Genes
  
  

• Cure SMA (patient advocacy organization)
  
  

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords:
spinal muscular atrophy, SMA child story, rare disease diagnosis child, delayed milestones baby, parenting medically complex child, rare disease advocacy, navigating pediatric diagnosis, EMG test child, pediatric neuromuscular disease, child life coping tools, supporting child through medical tests, rare disease parent support, medical parent journey, hope after diagnosis

Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury.

In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family's journey following a diagnosis of hypoxic ischemic encephalopathy (HIE).

What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child.

Brady opens up about:

• The shock and uncertainty of those early days
• Navigating life as a "medical dad."
• The balance of grief and joy that often coexist
• How early intervention and community shaped their path

Through this experience, Brady recognized a gap many families face: a lack of dignified, age-appropriate products for children with disabilities.

That realization led to the creation of Youth Crews—a brand focused on comfort, dignity, and rethinking what medical products can look like for kids.

If you've ever found yourself wishing something existed to better support your child—or felt the pull to create change—this episode will leave you feeling seen, understood, and inspired.

This episode is sponsored by Gebauer PainEase®We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.

• Learn more about Youth Crews and their mission to create dignified products for kids with disabilities

• Follow Youth Crews on Instagram
  
  

Mentioned in This Episode

• Hope for HIE community
  
  

• Anchor Center for Blind Children (early intervention services)
  
  

• Driven by Purpose Podcast

Connect with us!

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Disclaimer:
Medical information shared in this episode is not a substitute for professional advice. Please consult your care team for guidance specific to your child.

Keywords:
hypoxic ischemic encephalopathy, HIE baby story, NICU brain injury, medical dad perspective, parenting child with disabilities, pediatric brain injury journey, adaptive products for kids, inclusive design children, youth crews diapers, special needs parenting support, early intervention services, disability advocacy parenting, medically complex child parenting, child life support tools

How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges.

This week's guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it's really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child's care team.

If you've ever wondered how to build trust with your child's doctor, prepare your child for surgery, or understand the perspective of the people caring for your child, this episode offers meaningful insight and reassurance. Dr. Lando's message is clear: the best outcomes happen when families and providers work together as partners.

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.

Resources & Ways to Connect:

Book: Breathless: Surgical Tales from the Brink and Back By Dr. Tali Lando

Available on Amazon

Website

Instagram

Connect with us!

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords: pediatric ENT surgeon, tonsillectomy preparation for kids, preparing children for surgery, pediatric airway specialist, parenting medically complex children, doctor-patient partnership, advocating for your child in healthcare, pediatric surgery preparation, airway disorders in children, Breathless Dr. Tali Lando, medical memoir pediatric surgeon, supporting families in pediatric healthcare

What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it's often just the beginning.

This week's guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James's medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family.

Lyndsey and Katie reflect on the intense months surrounding transplant surgery, including relocating their family to Houston, navigating the transplant workup process, and the emotional weight of waiting while two surgeries—donor and recipient—happened at the same time. Lyndsey shares what recovery really looked like, from the long hospital stay caused by a rare complication to the daily routines required to protect James's new kidney.

Lyndsey shares openly about the ongoing care James still needs, including medications, monitoring for rejection, therapies, and the unexpected challenges that came after transplant—including a rejection episode that required intensive treatments.

If you've ever wondered what life after pediatric transplant truly looks like, this conversation offers an honest and hopeful look at resilience, advocacy, and the power of family support.

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.

Resources & Ways to Connect:

Connect with Lyndsey

Children's Transplant Initiative
Provides housing and support for families traveling for pediatric transplant care.

IROC (Improving Renal Outcomes Collaborative)- Support and Educational Resources for families navigating pediatirc Kidney Transplants

Connect with us!

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords: pediatric kidney transplant, life after transplant child, dialysis in children, kidney disease in kids, transplant rejection treatment, pediatric transplant recovery, living donor kidney transplant, children's transplant initiative housing, transplant parent story, caring for medically complex child, pediatric kidney failure journey, transplant family support, child life coping tools, parenting through pediatric illness.

This week's guests, perinatal mental health therapists Emily Souder and Mahaley Patel, share the story behind their book Your NICU Story: Reflecting on Your Family's Experience—a guided journal created to help families process the emotional impact of a NICU stay. Mahaley also opens up about her daughter, Sachi, who died after a NICU stay, and how storytelling and narrative healing became a lifeline in her grief.

She and Emily talk with Katie about why so many NICU parents carry trauma long after discharge and how writing your story can help families reconnect with what they experienced. They also discuss the emotional weight of making medical decisions during a NICU stay, the importance of compassionate healthcare providers, and why healing sometimes begins months or even years later.

If you've ever struggled to process a NICU experience—or wondered how to revisit it in a way that feels safe and meaningful—this conversation offers powerful insight and hope. Emily and Mahaley's biggest message? Your story deserves space, compassion, and time—and reflecting on it can be an important step toward healing.

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.

Resources & Ways to Connect:

Book: Your NICU Story: Reflecting on Your Family's Experience
Available wherever books are sold, including Amazon, Barnes & Noble, and local bookstores.

Emily Souder, LMFT, PMH-C

Website

Instagram

Mahaley Patel, LMFT, PMH-C

Instagram

Connect & Support from Child Life On Call:

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.
  
  

• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

• Follow us on Instagram for updates and opportunities to connect with other parents
  
  

• Download SupportSpot: receive Child Life tools at your fingertips.
  
  

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Keywords: NICU trauma, healing after NICU, NICU parent mental health, NICU journaling prompts, birth trauma support, NICU loss support, perinatal mental health therapist, processing NICU experience, life after NICU discharge, NICU storytelling, guided journal for NICU parents, neonatal intensive care support, grief after NICU, NICU parent resources

What happens when your child shares something that shifts the future you thought you understood?

In this episode of Inside the Children's Hospital, Katie sits down with Kelly Kemp — certified child life specialist of more than 30 years and mom of three — to talk about navigating trust, grief, advocacy, and love after her child was diagnosed with gender dysphoria and came out as transgender.

Kelly shares:

• The phone call that changed everything

• Navigating substance use and mental health concerns

• Grieving privately while choosing love publicly

• Rebuilding trust with her child

• Supporting siblings during a major transition

• Setting boundaries with extended family

• Finding affirming medical and mental health care

• Holding faith and parenting together during uncertainty

This conversation is not about politics. It is about parenting inside a medical diagnosis. It is about trust. It is about grief that doesn't mean rejection. And it is about the steady, protective love that children need — especially when the world feels loud.

Whether your child is navigating a medical diagnosis, identity development, or a season you didn't anticipate, this episode will remind you:

Grief and love can coexist.

Trust is foundational.

And your child still needs you.

Resources & Crisis Support:

• The Trevor Project: Providing crisis intervention and suicide prevention services to lesbian, gay, bisexual, transgender, queer & questioning (LGBTQ) young people.

• • Call: 1-866-488-7386

  • Text: START to 678-678

• 988 Suicide & Crisis Lifeline: For mental health crises in the US.

• Free Mom Hugs

• WPath (World Professional Association for Transgender Health)

• The Trans Family Alliance

• Please note: Some organizations have private social media groups. For more information on those, you are welcome to private message Kelly Kemp.

Connect & Support from Child Life On Call:

• Subscribe: Never miss an episode on Apple Podcasts or Spotify.

• Visit insidethechildrenshospital.com to search stories and episodes easily

• Follow us on Instagram for updates and opportunities to connect with other parents

• Download SupportSpot: receive Child Life tools at your fingertips.

• Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.