Bottom line up front, this is going to be an emotionally charged post about the day Carter’s brain tumor was found. This isn’t for pity, but to showcase how easily something like this can go unnoticed, and how great the grace of God can be when times are difficult.
It was November 12, 2011, a day to be remembered. You see, it was the day Kelli and I were getting ready for the 236th Marine Corps Birthday Ball. We were so excited, we only get one of these a year. Many of you know we are an active duty military family, and we do not get a babysitter much for over night dates. However, Kelli’s parents come down for the week and watch the kids so we can go to the birthday ball, get a hotel, and just let loose one night a year. It is a blast, and something I will truly miss when I retire.
What is important to understand, is when you are with your child day in and day out, things can start to change gradually that you will never notice. For instance, I just returned from 133 days in Somalia about two months ago, and I feel like my kids both put on 20 pounds and look super grown up. So you see, we did not realize that something was off with Carter that morning of the ball, or had been for quite a while. When Kelli’s parents showed up, they realized right away something was off, but could not quite pinpoint what it was. Until that morning, when Carter was laying at the bottom of the stairs not moving.
Although we didn’t think something serious was going on, Kelli took Carter to the doctor while I prepared for the rest of the day. I was on a sword detail for the ball, and had to continue getting ready. I was in the zone, doing my Marine thing, preparing to put on a show and make sure people knew who a Marine was. Then I received the call!
Kelli was crying, trying to explain to me that they found something in Carter’s head, although I could not comprehend. My first remark was “Kelli, are you kidding”? This of course was not a good response, but I could not figure out what she was telling me. Carter was fine, I was playing with him the other day, there is no way they found a tumor in his head out of no where.
But they did. The technical term is a Pilocytic Astrocytoma. The tumor was the size of a peach, which is huge if you can imagine the size of your child’s head at two years old. Carter was at the emergency room, when a doctor working that day decided to go ahead and give Carter a CT scan. This is when the chaos started, but I think this would be better coming from Kelli’s point of view:
“When we went to the ER, the wait wasn’t long before they called us back. We went back and sat for a few minutes, and Allen (my step dad) showed up so I wouldn’t be at the ER alone. The doctor came in and said we are going to do a CT scan, still not thinking anything was terribly wrong. About 10 minutes after the scan the doctor came in and said “Can I seen him walk again”, so Carter walked to him way off balance. That’s when the doctor said unfortunately Carter has a pretty decent sized tumor on his cerebellum. Allen and I stared at each other, we stared at the doctor, no words really came out. Those are a few words you never expect to hear. That’s when I called Jeff and Mom who was staying at home with our newborn Kinley.“
Once I received the call, Kelli’s mom and I rushed to get on base and to the Naval Hospital. By the time we got there, they were getting Carter ready to be flown to UNC Chapel Hill via helicopter. Once he left, the rest of us got in two different cars and drove 3 hours to Chapel Hill. Nobody knew what was going on, and we had zero time to prepare for something like this. Everyone was emotionally charged, and could not understand what was happening at that very moment.
The first surgery lasted 10 or more hours, and was a horrible time in the waiting room. Eventually, they came out and said that they got as much as they could, but some of it was still in there. This turned in to 36 days at the PICU due to an infection in his brain that came from surgery, and another surgery to insert a VP Shunt into his head in order to drain the fluid from his head to his stomach. Carter was reborn, he had to relearn how to walk, how to talk, how to be himself again. He has a scar on the back of his head that remains forever, and a tube running down the inside of his neck.
We didn’t know what his future held for him, if he could live like a normal boy could. We were scared, worried, and unsure of what was ahead of us. Well, in May of 2012, Carter had another surgery that removed the rest of his tumor. His surgeon was great, she was a Godsend. You see, she normally works on older patients, but for some reason that day she was on call and was the one who had to operate on a pediatric brain tumor. She was the one chosen to save his life, the one chosen to perform a miracle. We were all at the right place, at the right time. Carter still goes to her every year, and since I do not have her permission I do not want to give out her name. We will call her Dr. A. Carter, now 10 years old, has seen Dr. A. every year for a MRI and follow up to see if the tumor has grown back. She has got to see Carter grow, see him evolve, and monitor his progress. So far, Carter has had no regrowth of the tumor, and does just fine with his shunt. He has even played T-Ball and rode his first upside down roller coaster.
We thank God every day for Carter’s blessings, even when he was diagnosed with Autism. He is a great kid, smarter than ever, and is the inspiration of this website. The mission is to initiate communication for those that are scared to reach out and ask for help. For those that are experiencing the worst moments of their life, and feel alone. For those that can’t see what their future entails. Here at From Tumor 2 Autism, we want to be the building block of conversation. Don’t be afraid to just say hi, because you never know where a doctor in the ER will lead you when he has a thought. It could end up being the thought that saves your child’s life.