It all started early 2007. Tyler was in 4th grade. We began to notice that Tyler’s voice was beginning to sound hoarse. He also seemed to be getting sick every time we turned around. He would suffer from severe headaches and became very lethargic. We were in the doctor’s office numerous of times. He was being treated for asthma as he did have asthma in his past. We made a trip to Michigan to visit family and everyone up there could tell something just wasn’t right w/ him. Everyone was telling me his voice was changing way too much. He sounded like he was already hitting puberty, but I knew that couldn’t be right as he was only 10 years old. By early March 2007, Tyler got to the point that he could barely breathe. My husband and I would take turns sleeping with him to keep him propped up and listen as at times he would just stop breathing. When we would hear this, we would shake him to get him to start breathing again. His breathing efforts were extremely difficult. He had begun to get strider. Strider is where the airways are severely restricted and you have to completely work to breathe.
As he would breathe in his sleep, you could see his neck muscles strain so much that his whole neck would indent and he would move his shoulders up and down as if he was working so hard to breath. I had gotten to know his teacher very well and was on email basis with her. The kids in his class could hear the sound of his breathing and knew something was wrong. They were afraid he was going to just fall over and pass out or something.
Finally, one day at work, I was at my wits end. I was so scared and knew if something wasn’t done, he was literally going to die as we could tell that he suffocating. So I put my face into my hands and began to pray. I asked God to reveal to me what was going on with Tyler as I knew that He knew exactly what it was and what needed to be done.
I went back to work and within 20-30 minutes it was like a light bulb had gone off. I had this overwhelming feeling and thoughts in my head that I just knew he was not suffering from severe asthma. I just knew there was something in his throat blocking his airways. (I have heard the saying all my life about God speaking to people, but I had never experienced this myself until that day) I hurried and called my husband to tell him what had happened. He advised me to call the doctor immediately, so I did. It was in the afternoon, so they advised me to bring him in the next day.
Unfortunately, it was an afternoon appointment and it felt like eternity. When I told his pediatrician, he completely agreed with me. He gave Tyler a steroid shot and offered to either put in the hospital or let him go home. I chose to take him home, but had his phone number so that if anything changed I could call him and he would immediately meet us at the emergency room.
He then set up an appointment with an ENT specialist for the next day. Another feeling of eternity! When the ENT specialist listened to Tyler, he immediately knew he had a tumor in his throat. He ran a scope thru Tyler’s airways from his nose down into his throat. It was very painful and scary for Tyler. However, we were able to see the large mass thru a camera at the end of the tube. We were able to visually see how hard he had to work to move the mass in out of the way in order to get air in and out. It was frightening to see, but a relief to know that this was going to be taken care of and fixed!
At first, the surgeon said we would have surgery within the next week or two, whenever his schedule would allow. I questioned him because as Tyler’s mom, I didn’t feel he could wait another day. The doctor assured me that it would be fine.
While we sat with the scheduling nurse, I kept telling her that I didn’t feel comfortable with waiting at all. She reassured me and also advised that if anything came available sooner, she would let us know. That night, I sat next to Tyler as he slept and prayed all night long. I prayed that Tyler would not have to suffer like this for any longer.
By the next morning, I decided to keep Tyler home from school. Around 7:30 a.m. my phone rang. It was the scheduling nurse from the surgeon’s office. She told me that the surgeon had been up all night long. He couldn’t sleep and felt we needed to get Tyler in that day for emergency surgery! All I could do was praise and thank God! I called my husband at work and several family members along with our preacher. We were all so excited to get this taken care of and removed so Tyler could breathe once again.
Once surgery was over, we had a room full of people. The doctor came to speak with us, but instead of speaking to us in front of the family to tell us everything went well, he asked us to step out in the hallway to speak privately. I knew in my heart something wasn’t right.
At that time, the doctor advised us that this was more than what he thought it was. He said that Tyler’s airways were blocked much more than what we could see thru the scope the day before. He advised us that Tyler may not have made it thru another week if we didn’t have it removed. He also proceeded to tell us that this was not going to be a one time thing. He advised that he would have to refer us to Vanderbilt University Children’s Hospital and they would need to take over from there on.
He advised that Tyler had a disease that will cause these tumors to continuously grow and that he would have to have surgery every couple months, probably for the rest of his life. He told us that sometimes these things turn into cancer and that going thru this is probably one of the worse types of diseases parents can go thru with their children. Then he just walked away leaving us standing there completely empty. We had no idea what to think or say about that at that moment. We walked back into the waiting room and explained the details to the family.
It wasn’t too long after that they wheeled Tyler passed the waiting room to take him to his room. We all put a big smile on our faces and acted like everything was wonderful. When he seen us come out of the waiting room, he sat up and repeatedly said "I can breathe! I can breath!" That was the sweetest thing we could have heard at that moment. I couldn’t even begin to imagine how it must have felt for him.
We stayed in the hospital that night so he could be closely monitored. I slept in the bed with him and Steve slept next to us on the couch. Of course, there really wasn’t very much sleeping at all that night. Tyler kept looking at the oxygen monitor and was amazed every time it would show his oxygen level at 100%. Then he would look at me with a huge smile. It was bitter sweet.
Since then, we have had 7 more surgeries at Vanderbilt University Children's Hospital. He is scheduled to have his 9th surgery on November 5, 2009. And yet, we are only at the beginning. We try to keep Tyler looking at it very positively and just to live and enjoy life. We try not to allow this to bring him or anyone else down in the family. It is scary, but we have a lot of faith.