I remember the day Hayes was given an official diagnosis so well. I was upstairs in my closet getting dressed when my phone rang.As a preface, Hayes had been doing so well. He had had his entire tumor removed in surgery just two and a half weeks before this day. And although the initial first few days of brain surgery recovery in the ICU were horrifying, Hayes was back to himself. He was now sitting up, he was napping normally, he hadn’t thrown up in at least a week and he was happy! We had 19 days of happiness.
When they do surgery on a tumor, they have to biopsy it. Many times, especially when it is a rare cancer, they have to send it off to a lab to have it tested to figure out what kind of cancer it is. They sent Hayes’ tumor clear across the country. So for those 19 days after surgery, we were blissfully in denial that Hayes even had cancer. He was doing SO well. Maybe it was gone completely. I remember quietly thinking to myself, “Cancer is not that bad. Look how good he is doing! Maybe we can just move on and worry about other normal baby things that don’t involve sicknesses.”
But like I already mentioned, my phone rang. I answered it and Dr. Brockmeyer, Hayes’ incredible neurosurgeon was on the other line. I conferenced Steve in from his office and the doctor continued.
“So the tumor was malignant, as we expected. The pathology came back today. Hayes has Choroid Plexus Carcinoma. Do you know what that is?”
I had no idea. Steve had no idea. Dr. Brockmeyer went into some scientific flow of an explanation as I sank down on the floor of my closet with huge fearful eyes, not understanding a word. After a lot of explaining, he symbolically handed us off to the oncology team and said his goodbye as he wished us luck.
Steve and I were left on the phone and I remember him asking me, “So, what does this mean? Did you get any of that? What is the name of the tumor again?”
I responded with a slow pronunciation from my memory…”A Choroid Plexus Carcinoma, I think.” We reassured each other that everything was going to be ok…we had no clue, but hey, sometimes it just feels better to say it out loud. He hung up and I immediately began to google the monster.
And monster it was. Every result of my search was filled with prognosis’s and statistics. This was REALLY bad. I tried to see the screen of my phone through my burning tears. I had been SO wrong…No! Cancer IS so bad! Bubble burst! Dam broken! Flood gates open. Heart shattered!
I was devastated. I couldn’t let Steve know the statistics. I knew it would kill him, but I had to talk to someone! Someone who had been there. But no one in Utah had had this. So I got online and searched the hashtag #choroidplexuscarcinoma on Instagram and Facebook and immediately found someone. A mom of a warrior named Violet…and Violet was cancer free! She had been for 2.5 years. I had always been somewhat reserved but in this moment, every ounce of shy I had ever felt was gone. I reached out to her without hesitation, a stranger. But she was my hope and I wasn’t letting go. Her response to my panic was amazing. She told me one simple thing, “Your baby is stronger than you realize and you, mama, you are stronger than you know! You can do this.”
She didn’t give me numbers and she didn’t give me statistics. She told me exactly what I needed to hear. Hayes was bigger and stronger than any statistic on google. Hayes was a warrior!
As we all know, Hayes had a terribly long and painful road ahead. But I learned that he really is SO strong. Hayes didn’t lose to cancer when he passed. I hate when people say that. No, Hayes fought and battled and cancer died with his body. Hayes won! Hayes is cancer free now….cancer always loses, regardless of the outcome.
Another thing Violets mom was right about…I am strong. I never knew how strong I was. But I made it through something SO incredibly painful and I still fight to make it through. Every day is a battle and every day I wake up, I get out of bed, I love my kids and I fight for all the warriors around the world. That is strength! So in my mind, I beat cancer too!