Kodie's mom Colleen has started a CaringBridge page to provide friends and family with updates on Kodie's condition, and the link is included below. You can follow this page for more frequent and detailed updates as Kodie is now at the Mayo clinic for treatment:
Kodie still has a very long road ahead of him, and can use all of your thoughts, prayers and support. Below is the latest update from September 12th:
Ok this is a hard one for us, we are extremely exhausted.
As you all know we have been at the Mayo for the past three days to have Kodie looked at and to come up with a plan. We had many consultations, blood tests, MRI, etc., always hoping for great news.
Well, today was the reality of what is really going on with Kodie. First of all, the fluid build up on the other side is getting bigger. His shunt is over shunting with really no way to adjust it more. So a few options were given like a modification drain system to be attached to the shunt or new valve. This is something we have to monitor closely again, meaning right now Colleen and I have to watch Kodie for changes. We have the best shunt doctor working with us, but he has to gather so much more info before he does anything unless there is an emergency.
Also, there is an area above the tumor that was stretched so bad that he sees serious damage to that part of the brain. He is not sure it will come back or not. There is also another part of the brain from the last problem that there is damage because of his brain being compressed as many times as it was.
We always think of the brain as a sponge springing back into place. The doctor explained it differently. It's like taking a piece of paper and crunching it in your hand and then try to lay it flat but it has all the crinkles in the paper never able to lay flat again. That is what has happened to Kodie. They said the effects he has now may take a year to heal.
As far as treating the tumor, he told us chemo for this type of situation typically works for children, radiation could have lasting problems that can actually appear many years later. He is a candidate for the Mayo proton radiation but because of the placement still has much risk. There is an experimental treatment that they can test his biopsy for to see if it works.
Problem is if they don't have enough of the biopsy they will have to go in and take another so they can test it. Looking at the image we can clearly see all these issues (my stomach was sick). They keep saying Kodie is young which is a plus. They don't want to do anything right now because he has had way too much trauma and they need things to settle down and to watch which way this is all playing out.
So we are forced to play the waiting game and have decided to come home. We pray we are not faced with another emergency before our next MRI in two weeks. We are glad we moved to the Mayo. Neither doctor gave us a lot of encouragement but we feel like we are on track for a plan with a good team.
Kodie is talking much better -we did a medication change and he actually slept through the night. It is hard to look and talk to him and realize what is really happening in his head. You wouldn't guess it right now.
I am sure there is more but my mind is a mess right now to think straight. Please continue to pray we can make two weeks without an issue. Love you all!
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