Months and months went by before we truly received the gut-wrenching news of Rylee’s diagnosis.
It began with phone calls from her school about headaches. At first, it was one or two calls every couple of weeks. Concerning, but manageable. Then the calls started coming every day.
We took her to the doctor immediately. An MRI was ordered, followed by a referral to a neurologist. When he read the results to us, it wasn’t what you might expect. He told us he saw migraines and anxiety on her scan. That was it. No urgency. No alarms.
So we left.
And life went on, except it didn’t.
As the months passed, small things began to pile up. Rylee became dizzy and had to sit out of a soccer game. She complained of nausea. We kept taking her back to the doctor, and each time we were told the same thing, migraines, acid reflux, nothing serious.
Then the changes became harder to ignore.
She started having bad dreams. She became afraid of the trees in our backyard, trees she had lived beside for years. Suddenly, they were “too big.” She grew afraid of our dogs, dogs she had known her entire life. She began isolating herself. She didn’t want to bathe. She pulled inward in ways that didn’t feel like her.
Once again, we went back to the doctor. Once again, we were told these were “tween things.” Anxiety. Hormones. Maybe medication. Just keep an eye on her.
Then came the day everything changed.
She called out for me from the shower. When I walked in, she was leaning heavily to her left. I asked her to stand up straight. She looked at me and said she couldn’t. Her gait was off. Her body wasn’t cooperating with her anymore.
We called 911.
The firefighters checked her vitals and told us she may have just gotten dizzy. Everything looked fine. Still, something in me wouldn’t let it go. Later that day, we took her to the pediatrician, just to be safe.
The moment the doctor saw Rylee walk, she picked up the phone and called the pediatric ER. She told us to go immediately.
It was COVID, so only one parent could go inside. Mike waited in the parking lot while I took Rylee in. The ER doctor examined her and told me she seemed fine and that he was preparing to discharge her.
I asked one question that changed everything.
“Then why is her arm numb?”
He paused. Then agreed to order a CT scan. He told me it would take a while to get results and to hang tight.
No more than fifteen minutes later, he came back into the room and asked, “Is your husband here?”
I knew.
When Mike came inside, the doctor told us he was seeing a mass and that, to be safe, they were transferring Rylee to the ICU.
Within minutes, we were upstairs in an ICU room. We were told she would stay overnight for observation and that a neurosurgeon would come speak with us. Mike went home to grab clothes and an overnight bag.
Call it intuition. Call it a mother’s instinct.
But I knew I needed to record our time together.
Everything in me knew this was the last day life would feel normal.
I turned on my voice memo and asked Rylee if I could climb into bed with her. We snuggled close, her head tucked into me the way it had been so many times before. We watched a movie on her iPad, side by side, the world quiet around us.
She told me about her day at school, about her friends, the little moments that mattered to her. She shared how she had brought her own basketball to school so her friends could use it too, so everyone could play and have fun. That was Rylee. Always thinking of others. Always generous. Always leading with her heart.
She was so brave, braver than anyone should ever have to be.
Dinner arrived that night, and it happened to be meatloaf, one of her absolute favorites. She was also spoiled with lots of Icees, small comforts in the middle of uncertainty.
I told her how much I loved her. How proud I was of her, of her kindness, her strength, her courage. She told me she loved me so much and that I was the best mom in the world. She gently stroked my face as I held her close.
It was my honor to be there with her during that precious time, something I will always hold close to my heart.
I still hear her voice telling me how much she loves me.
I am endlessly grateful I followed my intuition and recorded those moments, because I was right.
It was the last time I heard my daughter speak.
The last time she was fully my Rylee.
Later that night, Dr. Ciricillo came into our room. Based on the images and the location of the tumor, he believed it was most likely a pineoblastoma. Surgery needed to happen immediately.
The next day, she was taken to the operating room.
I held her hand the entire way. As they were about to take her back, she looked at me and said, “Mom, don’t go.”
That moment is burned into my brain forever, knowing she needed the surgery, knowing she would never be the same, knowing this was the last true moment with the Rylee I had always known. Letting go of her hand felt unbearable.
The surgery lasted eight hours.
Dr. Ciricillo and his team removed a peach-sized tumor. When he came out to speak with us, he warned us about the difficult road ahead. But in that moment, all we saw was green. She survived. Let’s fight. Hope was all we had.
Then our worst nightmare was confirmed.
Rylee had pineoblastoma, brain cancer.
The questions came rushing in. How? Why? Did we miss something? Did we fail her? Is she going to make it? You are frozen in shock while the world continues moving around you, laughter in the halls, footsteps passing by, while you are trapped in a nightmare you can’t wake up from.
The pain is physical. You curl inward, wanting it to stop. Nothing feels real. People speak, but the words don’t land.
And then comes the impossible question.
What do you say to her twin?
How do you explain brain cancer to a twelve-year-old? How do you explain that she won’t see her sister for two and a half months because of COVID restrictions? Do you protect her with hope, or tell her the truth and risk shattering her world?
There is no map for this. No right answers. Only the instinct to protect the innocence of a child while your own heart is breaking.
November 17th will forever be the day our world broke in half.
