Addison is a sweet, soft-spoken nine year-old girl. She loves art, fashion and decorating. A year ago, she started having migraines. My husband wanted her to have an MRI but the neurologist said that it wasn’t necessary. We were dealing alright with those twice monthly buggers until these new, strange symptoms started popping up. Her third grade teacher sent home a note at spring break about how Addison seemed to have “zoned-out”. The teacher would call her name and Addie wouldn’t move or respond. “Well”, I thought, “This isn’t the first time I have had trouble with Addison responding to people”. Ever since Addie was a baby, she would rather entertain herself than participate in group activities. She has always liked to be in what we called “Addie World”. However, when we went to Rockford for spring break, my mother and I noticed her sort of fading out at times. These episodes became more and more frequent and obvious that they were not just behavioral. I took Addie to her pediatrician and that got the ball rolling for her to see her neurologist.
The neurologist gave us a really hard time about what these episodes might have been. He told us that most episodes like these can never be diagnosed as something other than behavioral. My husband and I knew that our girl was not just acting. We pushed for an EEG, which showed nothing, and all the time these episodes were getting worse. Addie was now falling over, holding her breath, turning blue and constricting her whole body during the episodes. Her school was calling constantly because they didn’t know what to do…and neither did we. We finally caught an episode on video and showed it to our pediatrician, who panicked and called our neurologist to get the video EEG rolling, and quickly.
We spent three days in the hospital strapped to computers to capture, hopefully, one or more episode. They caught eight in the first two days. I was ecstatic! Finally the neurologist would listen to us and we might get some answers. Addison’s seizures were captured on her left temporal lobe. She was diagnosed as having partial complex seizure disorder. I was happy with the diagnosis. Finally we were being listened to and we had a plan for treatment. “Oh… and one last thing”, the neurologist told us, “she will have an MRI to rule out a structural problem in the brain, but don’t worry, it is just standard procedure and nothing will show up”. He actually said that, numerous times.
Two weeks after her hospital stay and diagnosis we had a neurologist follow up. He reassured us again that the MRI would show nothing and not to worry. He put in the order and we were to wait for them to call us. They never called. I found out that the doctor had somehow canceled the test. Frustrated, I finally got it scheduled for Friday. Friday came, she had the MRI, one more test done and marked off the list. Now maybe my husband will get off my case about it.
Monday morning, while paying bills, I got the phone call. Addison had a tumor, one by two centimeters, in the center of her brain. This is exactly what the neurologist had said would not happen. We panicked, prayed, cried, prepared and planned. Our family was amazing, our friends were outstanding, our community was unfailing in its support. Addison designed a t-shirt with her uncle that my good friends sold to everybody as a benefit. Local businesses donated money to help with the start-up cost of the shirts. We got family pictures taken by a wonderful family photography business that wanted to help. Family prepared our house, friends cleaned and cooked for us. The local quilt shop made a healing quilt in one weekend for Addie. I am leaving many things out, please forgive me. Every card, call and gift meant so much to us. Addie felt like a queen. She even asked to be baptized with her father. This was something we had meant to do, but always put it off for a better time. Well, now the time could not have been better.
Thursday morning, June 19, 2014, surgery day had come. I will never forget how my husband brought Addie outside early that morning, and asked her to dance with him. I will also never forget how Addison, while talking to Dr. Lin, her neurosurgeon, told him that the surgery would probably be like when she had a cavity filled. Off she went, rolled down to surgery in the little red wagon. My heart, rolling out of my chest and down the hall.
The rest of the morning is a blur, except when Dr. Lin called us into the consultation room. He told us that the tumor was very distinct and they thought they got it all. I slammed my hands on the table. God had given us a miracle.
Addison suffered a small stroke during surgery and she has vision loss of the right peripheral. Other than that, she is perfect. Another MRI showed that they did indeed get the entire tumor and the pathology came back showing that the tumor was a rare ganglioglioma. It is benign and slow growing.
We still have a long road ahead of us with future MRI’s and seizure watches. But I have no doubt in my mind that God’s Got This!