May is national brain tumor awareness month, so, I thought that I would take this opportunity to share my story. I am aware that the month of May is over in about three hours, and I am just now posting this, but that is because I have started writing this multiple times and each time ended up deleting it. It is way outside of my comfort zone to talk about myself, especially such a personal aspect of myself. But I am for two reasons. 1) This is part of my testimony. This is a story God’s grace, power, mercy, and healing, and that means that it needs to be told. I need to tell it to give God glory. 2) I want to be an encouragement to others. I realize that more than likely no one reading this has been or ever will be diagnosed with craniopharyngiioma, but that does not mean that my story of God’s healing in my life will not be an encouragement to you. Whatever it is that you are going through in your life, be it difficulties in a relationship, problems at school, a loved one struggling to fight cancer, or an actual craniopharyngioma, I hope that my story shows you that God can heal your problems of whatever size in whatever area of your life. HE IS ABLE! So here it is, my story of having a brain tumor and God’s healing…
For the fist 6 years of my life I was a perfectly normal little girl. I ran and played. I combed my baby dolls hair and dressed them up in their cute little frilly dresses. And, then one night we were watching Veggie Tales and my daddy told me it was time to go to bed. I begged for one more, but he told me to look at the clock and tel him what time it was. It was way past bedtime. But, I couldn’t. I couldn’t see the clock.
My parents took me to get my eyes checked, thinking that I needed glasses. They were told that I had amblyopia, lazy eye. In other words, I had one eye that was ‘lazy’ and not as strong as the other, inhibiting my vision. The treatment for lazy eye is to wear a patch over the strong eye, forcing the weak one to strengthen.
So, I wore the patches, and I hated them.
My ‘weak’ eye just kept getting weaker and weaker until I was having problems just functioning in everyday life. I remember positioning the patch just right so that I could peek out of the corner with my ‘strong’ eye and see. The doctor kept blaming my parents. I had lazy eye and the patch was the answer, so, they must not be making me wear it.
After months of the patch and continually weakening vision, the Lord led my parents to Arkansas Children’s Hospital (ACH) for a second opinion. With just one look, the doctor identified the problem, a craniopharyngioma pressing on my optic nerve until my brain had completely shut off my right eye. And now, it was beginning to weaken my left one. A craniopharyngioma is a (generally) benign tumor that occurs on the pituitary gland and sticks to everything. The doctor said that it is a very slow growing tumor, so I was likely born with it. He also said that due to its stickiness, it was very likely that he would not be able to remove it all. And, if any was left stuck it was very likely for it to reoccur, and reoccur, and reoccur. He prepared my parents for me to come out of surgery not being able to taste or smell, and completely blind in both eyes.
One week later, lifted up by hundreds of prayers that spanned around the world, I underwent an 8 hour brain surgery to remove the problematic mass that was slowly stealing my vision.
When the surgeon went to the waiting room to talk to my parents after the surgery, he said that he could’t explain it, but the tumor had just fallen out. He was confident that he had been able to remove it all. That was totally uncharacteristic of craniopharyngioma tumors. It was a miracle. The miracle that everyone had been praying for.
Then began the waiting game. They wouldn’t know if I had lost my vision, smell, or taste until I woke up.
And then the fire alarm went off.
Yes, after surgery, in the ACH surgery recovery room, the fire alarm went off and woke me up. And then I asked what the flashing lights were for. That meant that I could see the flashing lights. It meant that I could see Dad standing there to ask what the flashing lights were for. I wasn’t blind!
The next day, my Mom tried feeding me green Jell-O, which everyone knows is NASTY. Well, I informed her of that. I told her that it tasted disgusting and that I liked RED Jello-O. That meant that I could taste!
I did however loose my sense of smell. But hey, two out of three ain't bad. And smell is nothing compared to being able to see and taste.
The next little bit is a blur to me. I remember my parents trying to figure out lots of new medications, My pituitary gland that had been removed was what told my body to produce hormones. So now, I had a handful of pills (and I didn’t do pills), a nasal spray, and a shot (I didn’t do needles either, which had added another level of difficulty to this whole surgery ordeal).
Eventually all of my medication got evened out. It is still a struggle. Things that most people don’t think a thing about make me sick. I don’t naturally produce adrenaline like you, which means that even walking across a parking lot in the summer can make my heart feel like its racing and make me feel light headed. Falling and cutting my knee has made me pass out before. I have to pay attention to how much water I drink. My body doesn’t regulate my water intake like others so I can very easily flush my system out. I struggle with insomnia. My body doesn’t know when its time to sleep. I feel exhausted but my body doesn’t produce Melatonin to tell it to go to sleep. My right eye, the one that I am blind in, randomly turns in. I can’t loose weight. And, it is a continual struggle to not gain weight because of all of the hormones and steroids that I take just to make my body function. But it’s normal to me. I’ve slowly but surely figured my body out as I’ve grown up and am finally learning how to adjust for most of these things.
That was all over fifteen years ago. I have had no recurrence, and, after ten years, my chances of having it reoccur is no greater than anyone else in the world.
Some days I wonder what I would have been like if none of this had happened. I wonder what life would have looked like. But, it did happen. This is who God has made me. I am His masterpiece. He did not mess up when He made me. The tumor was not a surprise to Him. He has a reason for the tumor. This is the life that He has blessed me with and I am so blessed. My story is full of His healing and grace. It is my testimony. And that it why I have told you all of this.
