A brain tumor at 3 years old: “My daughter is a warrior”

In October of 2018, our 2-month old needed emergency surgery to remove her right ovary. She was born with a large cyst inside of it. The next day, our 3-year-old daughter Rylynn complained of a headache. It had been a busy weekend, so we assumed she was tired. We gave her some Tylenol and encouraged her to rest.

The next morning, Rylynn slept in. While I was on the phone with her dad, Rylynn screamed like we had never heard before. My husband rushed home – between the scream and her headache, something didn’t sit right with him. He took her to a local hospital. An hour later, I received an unforgettable call from a completely inconsolable husband.

A CT revealed a large mass in her brain.

Thoughts raced through my mind – Are you sure it’s in her brain? Maybe it’s under her skin? This can’t be right! She had one headache and no other symptoms!

There was a large tumor pushing against Rylynn’s brain stem. She was transferred to Advocate Children’s Hospital – Park Ridge, where we had just gotten home from days before with our baby.

After the neurology team evaluated Rylynn, surgery was scheduled. I couldn’t comprehend – she was just playing a couple of days ago, and now she needs brain surgery?

Rylynn was diagnosed with a benign juvenile pilocytic astrocytoma, a rare, slow-growing childhood brain tumor. I can still vividly see the moment she was taken back to surgery so clearly in my mind – Rylynn with her arms out, reaching for her me and her daddy. It was heartbreaking.

Surgery lasted about seven hours. Every hour, a nurse gave us an update. When it was finished, we were told surgery was successful. Praise the Lord!

Seeing your sweet little girl hooked up to countless tubes – in her mouth, in her head, IVs – you can’t sleep. We spent 2 ½ weeks in the hospital watching our sweet princess as she healed and rested.

We’re now 3 ½ years past surgery. Rylynn has sedated MRIs every year. She’s very social in school and loves everyone, especially God. She enjoys bike riding, going on walks, drawing with chalk and playing basketball or catch with her brother.

Looking at Rylynn today, you’d never know she had brain surgery, unless she wears her hair up and reveals her scar, which she rocks with confidence. She’s the blueprint of a brain tumor warrior – strength, kindness and faith.

“Rylynn truly is a brain tumor warrior,” echoes Dr. John Ruge, chairman of the department of neurosurgery at Advocate Children’s Hospital and Rylynn’s neurosurgeon. “She’s also quite the dancer at our brain tumor social events! Rylynn lights up every room she enters. We can’t wait to see all of the amazing things she will accomplish in the future.”

Rylynn’s chapter in her book of life woke us up. We always knew life is extremely precious, but I think we still took a lot for granted. Now, we’re grateful for everything – family, friends, our community, our amazing neurosurgeons Drs. John Ruge and Robert Kellogg, Ms. Elizabeth, who we adore, and all of the staff at Advocate Children’s Hospital. The nurses who went above and beyond to take care of our girl. The ones who came in to take Rylynn for a walk or to the playroom so Mom and Dad could rest. The child life specialists, especially Ms. Kevynne, who always brought fun games and toys to keep Rylynn busy. We just can’t thank the team enough.

If you’ve gone through or are going through something similar, have faith and pray. When someone offers to help, accept, and if you need something, ask. We were stubborn and didn’t like to ask for help, whether it was a shoulder to lean on or financially. But people are there to help, and they will.

Take life day by day, and make every day count. Go on the trip. Get the cotton candy. Enjoy life. And most of all, love.