Hello everyone! This is the very first post on our blog. Let me start off by having Tori tell her story.
In 2008, I was on a short vacation to visit family friends in Illinois. While I was there, I had two severe seizures. I was rushed to the hospital, where they discovered that I had a tumor in the left frontal lobe of my brain. It was so large that it was squeezing my brain against my skull and causing nausea, severe headaches, and eventually the seizures. My family and I were informed that it was too large to treat with radiation or chemotherapy; it had to be surgically removed.
So, three days before Halloween, I went into a 13 hour surgery to remove the tumor. But it wasn't that simple. The tumor had grown into the fibers of my brain, so when they took the tumor out, they removed part of my motor cortex as well. The results were devastating. When I woke up a few days later, I couldn't move the right side of my body. I couldn't stand, walk, or even wiggle my toes. Those were the worst few months of my life. However, with the help of the wonderful people at Riley Hospital and a lot of hard work, I was out of my wheelchair in a matter of months. Today, almost four years later, I can walk, run, and ride a bike like nothing was ever wrong with me. But I had to give up a lot of things too; I can't kick a soccer ball with my right foot (I played soccer before brain surgery) and I can't jump hurdles anymore (my favorite track and field event).
My life has been great overall since surgery. Of course I've had to get regular checkups with my neurosurgeon (Jodi Smith at Riley's) and regular MRI's to make sure nothing was growing back. And it wasn't, until my last appointment.
This August, I had an MRI and then a meeting with Dr. Smith to discuss the results directly afterward. I thought it would be the usual; I'd say hi, she'd tell me there was nothing wrong, I'd say thanks, and then leave. I wasn't expecting her to tell me that the tumor was back, and that I'd have to receive a special kind of radiation called proton therapy, but she did. My family and I were shocked and devastated. The last tumor had been so horrible. What did this one have in store?
Well, we soon stumbled into all the challenges that we faced with this new tumor. My health insurance has denied coverage for the proton therapy that I need to fight this. My doctor has appealed their denial and my case is currently being reviewed by a medical board which will give us an answer, but it could take up to thirty days. I don't have a month! What I do have is a tumor growing everyday inside my brain. It puzzles me how the insurance company can be so callous to my plight. And so we have created this blog, to raise awareness of my situation and to provide updates to those who are interested.
Tori has been my lifelong friend and to hear that she has to go through this once again has essentially stopped my life. I am by her side with this one hundred percent and both of our families are fighting for her treatment. We sincerely thank you for taking the time to read her story, and we hope that you will continue to follow us and share her story with others. We will be setting up our website to ask for donations in the next few days because we refuse to let the insurance company decide her fate.
Thank you all!
Cristina and Tori
