The beginning: When the family found out the horrible news…
At Christmas, just after Tyler turned two, he fell on a small toy car and scratched his jaw. The jaw swelled and by New Years Day we had to take him to the hospital. The hospital staff said that Tyler needed surgery to remove a cyst. Dr. Wilson did the surgery and came out with tears in his eyes. He said that the problem was not a cyst, but cancer and that he sent a portion of the extracted material to the lab to have it analyzed. The results came back as Rhabdomyosarcoma of the Mandible. When the results arrived, January 30, we were called to his office and he cried with us. Tyler was admitted to MUSC Hospital in Charleston, SC immediately. We felt this couldn’t be happening to our baby; not Tyler. The staff at MUSC has been wonderful and have become like family. We learned to love everyone there. Tyler has stolen the heart of everyone on Floor 7b.
Tyler was having trouble breathing because of his jaw, so the Doctor’s decided a tracheotomy was needed. At the same time, Tyler’s jaw fell so the medical staff had to wire the jaw shut. After that, he couldn’t keep feeding tubes in, forcing them to replace the tube six times.
After radiation and chemo, Tyler underwent surgery again where they took fibia bone from Tyler’s leg and transplanted it into the jaw to replace tissue that had been removed because of the cancer. Shortly thereafter, it was diagnosed that the cancer had moved to both of Tyler’s lungs. Doctors removed the upper portion of Tyler’s right lung and the chemo seemed to clear up the left lung. As a result of this surgery a chest tube was inserted. Tyler was so strong that he went walking down the hall with that chest tube still in! Dr. York said she wants a picture of Tyler to go over her desk. She said that he was the strongest kid that she had ever seen and that he was her miracle baby.
Tyler’s illness has been very hard on our family. Ashley, Tyler’s mom, is only in her twenties and is unable to hold down a job and still care for Tyler. He requires long trips to doctor’s appointments and special care. Tyler also has two young brothers that Ashley must care for. But God has been with our family and we believe he will carry us the rest of the way. Tyler had four staff infections while he was in the hospital, which encompassed most of 2003. We took a camper and stayed in it at Lake Air Campground so we could be near Tyler and Ashley through their ordeal.
Tyler has great difficulty talking because moving his jaw is very painful. He can barely eat and weighs on 57 pounds at eight years old. For a long time, Tyler had a feeding tube because he could not eat. After two unsuccessful jaw reconstruction surgeries, Tyler is now facing a titanium jaw replacement. This will be his 37th surgery over 6 years and there will be more as he grows.
Tyler loves playing with his papa George and he loves holding on to Mama and playing with her hair, but when he wants his way, he runs to Nanny, who cannot help but give him what he wants. Tyler is very close to his Nanny Darlene.
Tyler has been through things that most adults couldn’t survive. Recently..
Tyler is now in remission. This doesn’t mean he is cured or better in anyway. How we wish the cancer the end of his ordeal, but there is so much more Tyler has to go through.
Tyler will need to be brought three hours each way to MUSC Hospital for follow up appoints all of his life. According to his doctors, he will never be 100% better. He is missing half of a lung and has had both of his legs broken to get bone for his jaw. It is devastating that he must endure more pain to take the next step and install the titanium jaw.
Tyler tends to get sick often because his body is so weak from the chemotherapy. It breaks our hearts that he cannot do the things that normal kids take for granted. Right now, Tyler is home-bound, so he is not even able to enjoy school. Without many kids in his neighborhood, Tyler gets lonely for other children.
Sadly, Tyler may never be able to eat properly. We pray that the surgery on his jaw will give him some form of normalcy. He will never have the kind of childhood many of us enjoyed and he may never be able to have children of his own some day because of the chemotherapy.
Tyler’s cancer is uncommon. We only came across five or six other children with the same cancer in our web research. Sadly, many of those children did not make it. Others had the cancer return. Tyler has beaten the odds at every turn. The doctors never believed he would make it. We feel so lucky and blessed to have Tyler still with us and we believe he will make it!!!!!!
The chance of Tyler’s cancer coming back is very high, but we believe he will beat it. It is the care and support of people from all over the world that gives us faith. We have hope, and we know Tyler is a warrior!