"Monday we found out our three year old little boy has a mass in his brain.Yesterday we founout that it is a tumor the size of a golf ball and that his head must be cut open in order to remove it or even just attempt to remove it, and that after the surgery my little boy wont be the same..."
Well, I don't know about the same but doctors removed the monster completely and they never touched the brain cells:) Julian and his family fought through chemo and radiation to prevent the monster from coming back. The Ugly Thing kept its dirty hands away for a while but now It somehow found Its way back to Julian's body and It doesn't seem to go away...
CarePages on December 15th 2007:
I want you to understand the pain, the anger episodes, the frustration, the few happy moments with brothers or with Mamie. I can't talk for Julian, he doesn't complain that much, his head hasn't been hurting, He does repeat often that his brain is tired. And while He cant use his legs, bend them himself, stretch them, and while He cant turn by himself in the bed, He can feel so much pain in there. I don't quite understand why since He can't use them, He
can still feel them.
He also can't pee without straining or poop, doesn't have the same sensation as He did when He was healthy. He hates going in his pull up and it makes it for many, many unsuccessful trips to the bathroom throughout the day. I want to put him in the bathtub so bad but I know it will be hard and painful. I think once He is in the water it will feel good, so we will see... He left eye is closed most of the day and if it opens, it looks to the side. He never complains or asks why. He reminds me every once in a while that one of his eyes is tired and that's why it stays closed and also that his legs are too tired. He gets angry when He is tired and ready to sleep and we make noise or if He wants to hear the tv; I mean He yells at us and says, "Can someone just be quiet?", "go away", "go talk somewhere else" and if I don't answer to my name right away He screams my name again. He eats exclusively stoffers spaghettis and meatballs, which we HAVE to have in the freezer at all time since sometimes the King wants them at 2 am... To us, the rest of the family it feels a little bit like a bootcamp leader moved in! Actually, a lot...The other kids have to be quiet most of the day...how do you keep 3 boys quiet ? They get yelled at and feel like they have to apologize to him. I especially feel bad for William who wants to love on Julian and is worried about his booboos. But then when He has had his drugs and feels good, he is the most awesome kiddo.loving, funny, playfull. I love it when He wants just one more kiss but thats it for today ... I love when he speaks "french" to Mamie.
I love it when he says to me, "I just love your smell Mama" and he snuggles his face in my neck. I love his dimples when he smiles because He says He's a stink bug.
I love when William climbs on his bed and He says, "Hi Weehiam" and wants a hug... Or when I bump him and apologize and He says "I never mind if you bump me, mama... "