His tumor had wrapped around his brain stem and the doctors said that he may need a tracheostomy and he may not be able to talk or even swallow. After a 6 hour surgery we learned that Colton’s tumor, an Atypical Teratoid Rhabdoid, was extremely rare and we were told it would more than likely take his life. We were then told that chemo does not typically work and it was our decision on which way to proceed. I was angry, I was numb, I remember laying on the bathroom floor of the PICU and crying and screaming until I became physically ill. Then I went back to my baby and I began to pray.
Psalms 118.8 "It is better to take refuge in the Lord than trust man"
Two rounds of "ICE" chemo, Two rounds of "VRD" chemo, Three rounds of "Highdose" chemo, each followed by stem cell transplants and last but not least 5 weeks twice a day of radiation and Colton is in remission. All through this, the doctors reminding us that he will not likely survive. By the grace of God, our little boy talks, swallows, walks, runs, goes to church, rides his tractor and still annoys his sister.
My advice is to keep your sense of humor, always love like there is no tomorrow, and trust in God.