I Will Always be the Baby

Jono Nagel Stories

Written by Taylor Lieber

Now 19 years old, Taylor was diagnosed with Ewing sarcoma in October 2012 at age 15.  A little over two and a half years later, she was diagnosed with secondary high-risk AML. She had a bone marrow transplant this past August.

This post was originally published on Taylor’s CaringBridge webpage.

Well, I think I’ve definitely maintained my name as the “baby” of the family. I’ve always been called the baby. You’ve all probably heard my mom’s airport story of her asking my dad “Where’s the baby?” People frantically looked around for a little baby, but I was right behind her the whole time. I said, “Here I am, mom,” and everyone looked at her funny, but with a sigh of relief. I will always be the baby.

But, I’ve graduated from adult diapers (C-DIFF) and sleeping on “chucks” to wearing normal underwear and other clothes. I don’t wear pajamas or sweatpants all day and sometimes my face looks relatively normal and I can pull off a pair of jeans and a sweater. I even had the privilege to see some old friends and dance at the Katz’s Bat Mitzvah! I actually danced!

So, I will always be the baby. From diapers to leggings. Slippers to boots. I will always be the baby that will always need protection.

I’m also learning to walk. It’s difficult and it takes me a few minutes to climb the stairs. My dad had to carry me up the stairs and is ALWAYS behind me and sometimes needs to give my bony butt a boost. He doesn’t let me do the stairs unsupervised because sometimes my chicken legs just can’t hold me. I can shower on my own now, and I’ve lost about over 20 lbs., but I also just started eating again.

I have new taste buds, so I’m craving everything! We go to restaurants now and I don’t have to wear my mask every time (if it’s not crowded). We tried the movie theater, but the line was out the door.

Chairs are horrible. If I don’t have an arm rest, I can’t get up by myself. Bathrooms are worse. I need to go in the handicapped one with someone to help me stand up.

My brother has been a big help too. He does (almost) everything I ask him to do and doesn’t complain about it. He hooked up my Micafungin the other day and felt like a nurse. He seems really happy with his girlfriend Kelsey and we all love her too. She comes over whenever I need her and cuts my nails because without an immune system, I can’t go with my mom to the nail salon.

My dad is VERY protective. His voice rings in my head when I’m walking, “No fast or sudden movements, Taylor”, “Watch your step”, “Slow now”, “Hold onto me, let me hold you.” Okay dad, I get it! He’s so sassy! But he also gets me what I need and gives me my medicine like a pro. “Nurse Dad”. He’s my “favorite, favorite Squaddy” to snuggle and I love him very much.

Mom isn’t as hard on me. She snuggles me too, but for hours! We lay together, breathe together. She says holding me feels like “heaven, like a warm cloud.” I don’t know what I’d do without my mom. She keeps everything in order and goes to the clinic with me every week, sometimes several times a week or everyday.

She sits through transfusions and slept at the hospital every night, except one, with me. She’s becoming more lenient and let me follow her in the blue Mercedes to the dealership the other day. Again I heard my dad’s voice in my head “slow and steady wins the race.” I did fine. Only backed into the snow bank once… Dad didn’t like hearing that I drove. He was mad at first and then cooled down. He’s learning that I need to be “normal” again. Do normal people things and go out with people.

I will always be the baby of the family. I have a new birthday, August 12- when my bone marrow died. So, I have to get all my shots again because I have the immune system of a new born. My pain is getting better. There was a point where it was so debilitating that I couldn’t leave my bed or go to the couch.

My feet are numb and tingly, my parents rub them a lot. (Cancer Perks).

Being the baby isn’t a bad thing. I love it. I watch Disney movies and actually agreed to catch up on Star Wars with my dad. I played my ukulele and guitar the other day. It’s therapeutic and helps me relax. Clinic visits are getting shorter, hair is getting longer. Long enough for my mom to play with “Fuzzy.”

So being the baby has its ups and downs. But, my family is always there for me and always by my side. I am forever loved and held by so many people.

The baby is home. The lights remain on. Shining bright through the day and night. (24 hours a day because we love them so much, we see them sparkle in the sunlight).