A Familiar Place

What was once a very scary and confusing place is now a familiar and comforting place for me and my family. “I know this place like the back of my hand,” my 15-year-old daughter Andi said after telling me where the closest water fountain was at Cincinnati Children’s main campus. I giggled and reflected on the last three years.

Three years ago, we could barely find the ER when needed to or the neurology department on A8, which we had just been introduced to a few years earlier. We would often find ourselves lost in the building if we had to park in a different part of the garage or use a different entrance. But not any more.

Almost three years ago, my son Joey who is now 13, was diagnosed withLangerhans Cell Histiocytosis, a rare disease that doctors argue over whether or not it’s cancer. His white blood cells ate his hip bone causing him to need a bone graft, months in a wheel chair, steroid treatment, months with a walker and then crutches and years of physical therapy (read stories posted HERE for information about LCH and Joey’s battle).

In those three years we have gone from barely being able to find the ER when needed and neurology for Andi’s migraines to knowing where the cool art is in the building, where to find a water fountain, the best items on the lunch menu, where oncology, orthopedics, physical therapy, blood draw, radiology, the emergency room, behavioral medicine, a quiet outside area and so much more are located. We can give directions to those new to the hospital.

We now have favorite nurses in several departments. We know staff members by name, and they know us. We know which techs are better at drawing blood and giving shots. We know which clinics have the best coffee and hot chocolate. We even know most of the valets by name because when you have a kid in a wheelchair or pain, you let someone else park the car. We know how to get massages for the patient and mom, how to get discounted meals and where to get a breath of fresh air without worrying about the neighboring community. We know what days we can find Circus Mojo performing and in which clinics.

Cincinnati Children’s is so big and complex that it used to be a scary place to my family. Now oddly enough, we find comfort being there. We seek out our favorite art piece, a framed quilt (read about it), when we need a good distraction. We go outside near Alvin and the Chipmunks when we need fresh air. We bring our favorite nurses cookies from time to time and stop by to see our favorite doctors or staff members just to say hi between appointments.

I think the reason it brings so much comfort is because before Joey was diagnosed and in pain, we were lost and frustrated. We needed answers and it was Dr. Neil Johnson at Cincinnati Children’s who gave us those answers and put Joey on the road to recovery. Dr. Johnson is a hero in our eyes, along with all the other doctors, nurses and staff who helped us along the way. The doctors at Cincinnati Children’s have also helped Andi with her migraines. Everyone there is so kind and reassuring.

We’ve learned things aren’t always as scary as they seem and sometimes the places that seem the scariest might just be where you can get the most comfort.

Editor’s Note: This post was originally published by Gina Stegner on her blog Raising 2 Tweens. We thank her for allowing us to share it here as well. 

Gina Stegner

About the Author: Gina Stegner

Gina Stegner and her husband Nick have five children, two of which are patients at Cincinnati Children’s Hospital Medical Center. She writes a blog about her son’s journey with a rare disease, Langerhans Cell Histiocytosis.

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