Friday, May 31, 2013

Brain Tumor Awareness Month

    Today is the final day of Brain Tumor Awareness month. Just like last month I wanted to write a little about my family's experience with it. Most of you who know me and my family know when C-Man was 5 he was diagnosed with his first brain tumor. Six months later the tumor grew back and he had a 2nd surgery to have it removed again.
    While many know about it, not many know what got us to the day when we thought something might be wrong. I know this because it is the number one question I get asked when someone finds out that he had brain tumors. "How did you know?" I could throw a bunch of facts and percentages at you about brain tumors. But honestly I don't know all that. I just know our story. And our story may be different from another.
     For about 3 weeks he had been having some pretty serious headaches every day. Not your normal kind of headache where he says it hurts you give medicine and its over. The kind of headache that would make him drop to the floor and cry. Most of the time no medicine would touch the pain. Totally not normal for a 5 year old. He was also super clumsy. Tripping and falling a lot. He would walk at an angle so 9 times out of 10 when he was walking out a doorway he would walk into the door frame. So I took him to the Dr. and because he has pretty much year round seasonal allergies we all (including the Dr) just assumed it was that. We were probably sent home with our normal steroids and Zyrtec prescriptions.
     Then it started to happen. In just 7 days his eyes went from looking completely normal to all the way crossed inward. I took him back to the Dr. Pretty much as soon as we walked into the room the Dr noticed the eyes. So he did all sorts of tests. Following his finger, walking in a straight line, reading stuff from far away. You name it, he did it. He scheduled us for an MRI "just to be safe" and check things out. This was a Monday. The quickest appt for an MRI we could get was Wednesday morning. We went, they sedated him and took him back. We waited, and waited. They brought him out still asleep if I remember right. When he came out of sedation, wow, was he a mess. Crying like I'd never seen. We were told our family Dr would call us by the end of the day and let us know the results. So we went home to wait. Stopping on the way at Bojangles's and McDonald's for breakfast AND Lunch since Carter hadn't been allowed to eat all day. We watched cartoons, we played video games, we did anything we could to pass the time while we waited for the phone to ring. Around 3:00 the call we had been waiting for came. It was a nurse from the Dr's office asking us to come in and speak to the Dr. Clearly they tell you good news over the phone. So we got a sitter and raced over as fast as we could. The next 30 min is not something I like to relive. So I'll skip out on the details. But mainly we were told he had a mass on his brain and the next steps we needed to take, and where we needed to go.
   Within an hour we were on the road to a hospital 3 hours from home. He was admitted to the ICU right away. And the very next afternoon less than 24 hours after we had gotten the news of the brain tumor he was having a 6 hour brain surgery to have it removed. It was definitely the scariest time in mine or my husbands life. Little did we know it would be repeated 6 months later.
    Definitely not an experience I would wish on anyone. Even a scare is not something you wanna go through. And we have gone through a scare or two since. Like I said though, C-man's story and symptoms may not be the same of another kid with the same problem. But I can tell you, if it weren't for the eyes, we might have never known until it got REALLY bad. Wanna know why?

     Because this is a picture of our boy just 2 weeks before we found out he had a brain tumor.
Can you tell there's something wrong?

Yea, neither could we. 

But I am VERY happy to say he is a HEALTHY 9 year old boy now. Who has been tumor free for over 3 years. <3<3<3

No comments:

Post a Comment