“May 12th is the day I was told that my four-year-old daughter has a brain tumor. When you are delivered a diagnosis like that, you remember in detail, all the symptoms your daughter was showing leading up to taking her into the emergency room. As the doctor started asking questions, to get a more comprehensive workup, the mom guilt settled in as I realized how many symptoms she had for a while. All I could think was, “Why didn’t I bring her in sooner? Could I have done more? How did I not notice these signs earlier?”

Bailey has a craniopharyngioma- a benign brain tumor located on her pituitary gland- directly in the middle of her brain. She has had two major craniotomies. The first surgery made a six-inch incision behind her right ear. The surgeon went in, assessed the tumor, drained the tumor of ‘motor oil” like fluid, and stitched Bailey up. Her surgeon was in and out in less than an hour.

After her first surgery when Bailey would get visitors, they would mention that she is a “Rockstar!” The name stuck. She still, to this day, will raise her hands like she is playing an invisible guitar and bang her head. She is our little Rockstar!

She was discharged three days after this first surgery, unfortunately, Bailey’s tumor is aggressive. After three weeks Bailey ended up in emergency again- getting her tumor drained of more ‘motor oil.” Then six days after that, three days, two days, soon we were bringing her in every day. This was when her surgeon decided a second surgery was needed. The tumor needed to be dissected and removed.

On June 27th, Bailey had her second surgery. This surgery was more risky. Craniopharyngiomas are sticky tumors. Once it attaches itself to an object (brain stem, blood vessels, pituitary gland, optic nerves, etc) it is very difficult to detach and remove it. With this second surgery, they had to go in through the top and front of her face, making a seven-inch incision along her hairline. This is her warrior scar. Lovingly named by her Aunt Becky.

The surgeons were only able to get 50% of the tumor. It continues to grow. Even though, we are told, it is growing “slightly” any growth is bad.

The next step? Radiation. Bailey started radiation on December 7th and will have treatment for the next six weeks. We are told this is it. Once she receives this treatment, the tumor will be dead forever. We are looking forward to that day. This journey started almost seven months ago, but it seems like we have been in this battle for years.

I wish I could say that once this is done our battle will be over, unfortunately, Bailey will always be fighting. There are many long-term side effects that she could come up against. Each one could be her reality someday. It’s harrowing to think about, but at the same time- I think all the time, “she can beat those odds! She is, after all, our Rockstar! Our Warrior!”