I Had to Stay Strong

Jono Nagel Stories

This is the part 4 of Taylor’s story. If you missed the first 3 parts, visit the pages below.

An Unfortunate Coincidence (Part 1)
An Unfamiliar, Familiar Place (Part 2)
She Wasn’t Breathing; Her Heart Stopped (Part 3)

I knew I had to stay strong for Jaimie and my family so I continued my fight. I developed graft-versus-host disease (GVHD) of the skin, along with many other unpleasant surprises.

I was put on a steroid that blew me up like a balloon; I had a chipmunk face.  My body was covered with hives and a giant rash.

Nobody could touch me. I would scream when the water in the shower hit any part of my skin. It burned and stung like I was being attacked by a million wasps. We later discovered the GVHD had also spread to my gut.

I cried on the toilet. I cried curled up in my bed.

It felt like someone was stabbing me over and over again. I thought of Jaimie and told myself, “I can do this; I can be strong.”

After going through Hell for seven months (with little breaks), I was able to go home.  My body wouldn’t eat and it wouldn’t take pills. I was weak and my dad had to carry me up the stairs. I literally had to learn how to walk again.

It was like my body couldn’t hear me, or comprehend what I wanted it to do. After one week at home, I was dehydrated and needed IV fluids at the hospital.

This happened in December. I’ve been home ever since and I’m gaining strength every day. I still have to go to the clinic for bloodwork and infusions. Thankfully, I only have to go once a week now.

I still have stabbing pains, but they aren’t as bad. The rash has disappeared. I’m done with my steroids, and my chipmunk face is starting to drain. As my immune system gets stronger, we are able to taper my immune suppressant, Cyclosporine (CSA).
I’m getting healthy again. After almost four years of being sick, I am finally feeling better. I am a two-time cancer survivor, and I couldn’t have done it without Jaimie and everyone’s love and support.

After finally being able to attend Jaimie’s brother Jared’s basketball tournament, Jaimie’s mom, Carolyn, gave me a beautiful dragonfly necklace. She said it sat on Jaimie’s dresser and thought I should have it. She put it on me and her face lit up.

To families and friends who are still fighting: Keep your chin up and fight like a warrior. You’ll hurt.  You’ll be weak. You’ll cry – but you won’t give up.  You’ll find strength that you didn’t even know existed.

Conquer Cancer.

Written by Taylor Lieber

Taylor, 19, was diagnosed with Ewing sarcoma in October 2012.  A little over two and a half years later, she was diagnosed with secondary high-risk AML. This week, Taylor writes about her good friend Jaimie and their transplant experiences.