TAKEN FROM FACEBOOK: This group is about our journey through my son Caydens incurable diseases.... PCD... is a very rare lung disease. It effects the cilia type hairs that line his lungs sinuses ears and reproductive organs. These hairs are supposed to move to keep him free of infections and to breathe easily. His do NOT. So therefore he suffers from many infections and breathing issues. Some very very serious. Also many sinus and ear infections as well. Which has also lead to some hearing loss. He also suffers from many other health issues all the way back to birth. He also currently has brain tumors on the cerebellum part of his brain that is growing. It is a rosette giloneuronal neoplasm tumor. There is what's considered to be the "main" tumor as well as multiple satellite lesions. He has had three brain surgeries. One biopsy and two full craniotomy to remove the tumor which is reoccurring, because two times it grew to dangerous levels and were emergent situations. After trying a year and half of chemo infusions as well. Chemo is a whole new world for us. This is a very scarey part of his journey. He now is currently using oral chemotherapy to hopefully keep the main tumor from regrowing again and the satellite lesions from changing at all. A third surgery for Cayden could be very very dangerous. The chemo has caused new health issues as well such as malnourishment and lots of fat and gue and pain and weakness. And we're currently looking at a few years of this treatment. He has larnyxglamacia and trachealamacia. A gtube for supplemental nutrition due to a feeding dysfunction. He has gastrointestinal issues as well as reflux and severe migraines. He also has severe hearing loss from his disease and has hearing aids. He has also been told he has retintitis pegmentosa.. Another rare incurable disease that attacks his retina. But I'm not claiming that one. God's taking that one for completely. We walk by faith not by sight. Cayden is only 16 and has already had at least 40 surgical procedures and countless hospital stays all the back to only a week old. He wasn't even able to come home until he was almost 3 months old. He spent his first 3 years of his life on oxygen which he will most likely need again in the future if not a lung transplant. And couldn't even eat a d drink "normally" until age six. Cayden does at least 3 types of nebulizer treatments vest therapy treatments and several oral medications every single day for the rest of his life. All to try to keep his pcd from doing to much damage to his lungs. Some of this will be preventable some will not, as pcd is a progressive and aggressive disease. And that is when he is well. Not many people have to face two very different life threatening battles. This is is life.. He has limits he has struggles he has heartaches. But he is the absolute bravest person I know. He takes it all on with a smile and GOD carries him thru. And with Team Cayden by his side there's nothing he can't do. He is my hero!!!
