Tuesday, January 27, 2015

Grin Kids trip to Disney World (PART ONE)

Have you ever dreamt about the perfect vacation? Ever thought about the ultimate vacation you could take your family on but knew deep down you'd never, ever be able to afford something like that?
This is the story about the ultimate vacation my family went on this year, and about the amazing people who provided it for us.

I have been listening to this radio morning show for years and years. Ace & TJ are the hosts. Every year I would listen and hear about their Grin Kids charity, It is a charity that they put together, where they raise money to take terminal and chronically disabled children and their families on an all expense paid trip to Disney world. You can read more about their wonderful charity HERE.

How does this apply to my family? Well, when my oldest son was 5 years old he started having a lot of headaches and walking kinda clumsy. We took him to the doctor and he just kinda chalked it up to the severe seasonal allergies he has. Then in just 7 days his eyes went from completely normal to completely turned inward towards his nose. Back to the doctor we went, he ran and bunch of hand eye sort of tests, walking in a straight line, follow my finger... Then he said we should get an MRI just to make sure everything was ok. Everything wasn't. We had the MRI on the morning of November 12th, 2009, by 3:00 that day we got a call from our family doctor that he wanted us to come in for the results. They don't ask you to come to the office for good news let me tell you. It was then we found out that our boy had a brain tumor. The other things we were told in that office that day I don't like to talk about, but the future wasn't looking good. We were immediately sent to Duke, which is considered one of the best hospitals in the world for this sort of thing. It was about 3 hours from our home. They were waiting for us when we got there. He was admitted to the Pediatric ICU and started on steroids to decrease the swelling, Less than 12 hours later he was in for his first brain surgery having it removed. This part of the story is rather long, so I'll just skip to the highlights. 
The doctor, Dr. Herbert Fuchs, our superhero, removed the tumor and we found out a few days later it was benign. Thank God. About 6 months after that day we had to take our son back to Duke for his MRI check up. During that MRI they found that the tumor had grown back. So he had the same surgery all over again, now he was 6. The new tumor growth was also benign. 

Carter is now almost 11 years old, he has been tumor free for nearly 5 years. We still travel to Duke every summer for him to get an MRI and have a yearly checkup with his surgeon. (This post just reminded me I need to call and make his 2015 appt!) He will have to get MRI's every year until he is 16 years old, after that I don't really know about that yet. 

6-8 months after his second brain surgery he was diagnosed with Autism. Don't ask me if they are connected, I don't know. I don't think so though. Autism has been difficult, especially the last few years. 

Around last February I was listening to Ace & TJ and heard them mention that they were taking applications for their new year of the Grin Kids. I filled one out and sent it in. Total long shot, there were so many people, so many deserving kids and families. I had honestly forgotten I filled that out and sent it in until the end of July. I was scrolling facebook and I saw a post from the GRIN KIDS, and it said something about how they had informed a lot of people if they were chosen for the trip. I didn't get a call so I just thought, oh well. Maybe next year. Two days later I was in my kitchen washing dishes and I heard my phone ring, I ran in the room just in time to see my 2 year old throw my phone behind the couch. I missed the call and spent the next 15 min moving my giant couch out of the way and retrieving my phone. I called the number back and got a machine. I had a gut feeling that I needed that call. A couple minutes later my phone rang, and on the other end of the phone was the sweet voice of Liana Weller, who I believe is the head of the Grin Kids organization. She told me that Carter had been chosen to go on the Grin Kids trip to Disney World, and that our whole family was going with him. I believe I said something like "SHUT UP!!!" then dissolved into a puddle of tears...

I would share the video of us telling our children they were going to Disney World...But its too crazy, Carter said "But how can you afford that?! Wait Now I won't have perfect attendance!!" Then ole crazypants said something about it being dumb. I think he was just mad that we weren't going right that second. 

Stay tuned for Part two tomorrow, all about our trip!

This is my boy's very first MRI. You can clearly see the tumor there in white. 

Here he is right after his first brain surgery. 
This is him now :)

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