Cody Perry Cody's Brain Journey

First post: Sep 24, 2019 Latest post: Oct 1, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement so much. As overwhelming as this all has been, the outpouring of love and well wishes has lessened the hardship. So thank you, thank you, from Cody and all of us who love him so very much!

Cody ended up in the ER at Sierra Vista on Friday, September 13th, 2019,  after having a couple seizures in the truck with his dad, Jason. In the ER they saw on the CT scan he had a lot of swelling in his brain and admitted him. The next day the MRI showed the significant swelling was being caused  by a large tumor in his brain which he had surgery for this week. He had a tumor deep in his 3rd Ventricle, which was blocking his CSF from flowing. It was causing him to have increased intracranial pressure which was causing a slew of symptoms. He was very confused, having bad headaches, and on several occasions has had seizures or at least seizure like activity. 

We have now learned or realized the problems caused by the tumor had actually been going on for a long time. The doctors say the tumor is very slow growing and. Cody had been struggling for a while. In April of 2018 while at the movies with his Grammy and cousin Katie he passed out. He was taken by ambulance to the ER and were told to just follow up with his doctor, which we did. After that Cody had several more "episodes" of blacking out, passing out, and throwing up out of the blue. The pediatrician assured us it was probably just fine, maybe anxiety related, maybe not drinking enough fluid  or by no eating enough. The episode/seizures grew increasingly worse and more frequent, especially over the last couple months. He finally got an appointment with a  neurologist scheduled and was waiting for that appt (at the end of Sept.),  Cody's symptoms of  confusion, blackouts, and losing time just got worse and worse. I think any of us who witnessed any of these events are probably a little traumatized still. It is very scary, sad, and makes anyone around feel totally helpless. 

On Monday, September 16th Cody was transferred by ambulance to UCSF, he and I are still here.  They believe they got most of the tumor, we don't know yet if he will need radiation. He has had some hard times since the day after surgery, but they are getting less and less. He wakes up pretty confused at times and it is heartbreaking to see. He still has some confusion and memory issues but I am hopeful to see where he's at in a week from now. Just the last 2 days he has improved by leaps and bounds. 

Cody continues to drain quite a bit of CSF into his temporary drain so it is pretty definite he will need to have a VP shunt placed in his brain/head to allow for future drainage and prevent increased pressure. No word yet on when that surgery will happen. In the meantime we are focusing on his progress and trying not to worry about the future. He is such a sweet, thoughtful, kind and wonderful person. He has handled this situation with a strength and grace that blows me away more each day. I know we both want to come home so bad, but we also both know he's where he needs to be. With that said, I miss you Jason and Kenna. Miss my dogs,  my bathtub, my co-workers, friends, and really really miss sleeping in a bed! Cody misses a real bed, a real bath or shower, going to the bathroom in an actual bathroom, his dad, family, and friends, and being able to just walk outside! Can't wait til we're home! I will update on how the next surgery goes. 

Thank you all again, I know neither of us could get through this without you all and we feel the love being sent this way.

Cody’s Dad Jason Perry, Stepdad Jason Longman, Sister Kenna, Grandparents Frank & Janie, Grandpa Mike and all of his aunts, uncles, and cousins we are grateful!

Thank you sincerely,
Kari Perry (Mom)