#KidsCantWait: Rylee’s Journey

The First Signs

November 30th, 2016, Rylee Lynn Rideout arrived making us parents for the first time and becoming the first grandchild and niece in our families. The years that followed were nothing short of amazing, Rylee developed a love for life and a sparkle that we quickly knew would keep us on our toes for life.

Rylee became an older sister to her sister Rory in 2019 and again to another sister Reagan in 2022. Rylee quickly became the best big sister and enjoyed showing them all of her passions. Rylee loved dancing and loved going to dance classes on the weekend, she also had a fascination with cheerleading and always said “I’m going to be a cheerleader someday!” For Easter 2023, she received the gift of “learn to cheer lessons” and quickly loved every moment of these lessons. She convinced her father and me to let her attend tryouts for the 2023-2024 cheer season and walked into those tryouts like she owned the place. Rylee’s dreams came true that May when she made a U8 All-Star Elite cheer team and went head first into practices starting in June.

By the middle of July, we noticed Rylee’s knee would swell for a few days and then go away. Rylee’s new cheer schedule meant she practiced 2 times a week, on top of summer break and just running around being a kid. As her parents we kept thinking “Oh she just irritated it at cheer, put some ice on it.” This swelling continued on and off until mid-September when she woke up unable to walk with swelling so large we couldn’t believe our eyes.

We quickly rushed her to the hospital where we spent the entire day getting bloodwork, and X-rays, and they drained the fluid in her knee to test it. They sent us home and told us they’d call once the fluid results came back. I took Rylee home to sleep and when my phone rang at 5 am my heart sank and I said this cannot be good. The doctor told me on the phone her white blood cell count was so high we needed to rush to the children’s hospital two hours away, that they were waiting for us. My mind raced and that was the longest two-hour drive of my life. When we arrived at the IWK we were told this was a typical case of Lyme disease, they’d start her on antibiotics, and her Lyme test would be back in a week.

We went home feeling hopeful that this would all be over once her course of antibiotics was finished. After two weeks of antibiotics and things getting worse, not better, I phoned my family doctor to ask “When will these antibiotics work?” I was shocked when he responded with “Her Lyme came back negative, didn’t they call you?” Imagine my surprise! Soon after we met our wonderful doctor, Dr. Huber with the IWK Rheumatology team, where we were told Rylee has Juvenile Arthritis!

Life After Diagnosis

Our life changed forever that day and what has followed in the next two and a half years has been a whirlwind. I quit my job to be able to support Rylee in all her medical appointments and needs. Living two hours away from the children’s hospital can sometimes present challenges! We spend a lot of time on the roads between cheer practices and appointments at the IWK.

Rylee’s mental health has been something her father and I continue to monitor just as much as her arthritis. Rylee has gone through many complex emotions over the years, every time a medication doesn’t work or she begins another flare up it’s another setback in her emotional wellbeing. Rylee through it all has remained hopeful – hopeful to reach her goals as a cheerleader, hopeful for a future in remission with no pain, and hopeful to continue to meet other children with her condition. Rylee had the most amazing opportunity last summer when she attended Camp Brigadoon and spent a whole week with children who also have all different forms of Juvenile Arthritis. This was the first opportunity she had to spend time with kids just like her. When I picked her up after her week had ended, she asked immediately when she could go back again!

As for myself, it’s no secret that being a parent of a child with a disability or chronic illness is exhausting. The mental, emotional, and financial strain a sick child can put on parents is huge. I was lucky early on to dive headfirst into all the resources Cassie + Friends has to offer. Through Cassie + Friends, I was able to connect with other parents and join a community on Facebook with other families going through the same thing. Just knowing I wasn’t alone and I had a place I could turn to has been one of the biggest things that has helped me over the past two years.

Finding Magic and Joy

On New Year’s Eve, Rylee looked at me and said “Mom I’m going to miss 2024, I don’t really want it to end, I had the best year.” I was shocked for a moment, earlier that day I had been thinking about how rough 2024 was and how I couldn’t wait to welcome a new year hopeful for better health for Rylee and a little less stress for our family. At that moment Rylee’s words stuck with me, and I felt so proud of her resilience through one of the toughest years of her young life she found so much magic.

I leave you with this, whether you’re an old pro at childhood sickness or you’re starting what might be the scariest journey of your life, I hope you, just like Rylee, are able to find magic and joy even when things feel tough. From one parent to another, I encourage you to reach out to parents who have been where you are and join a community to help you and your children not feel so alone. We are all in this together 💕