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