Yeah.. man that’s scary! I knew it was coming but actually getting it and starting it I’m just kinda freaked. The packaging alone looks scary.

When I got it yesterday, I sent Billy a picture and he agreed even looked scary. I’m glad that he posted  the pic on fb. I just couldn’t at that time at that moment sorta deal. Everyone is soo nice and soo sweet. I will comment back, I will. Sometimes I am so bad about that. It’s not st all that I don’t see or don’t want to. I really truly do. Its just sometimes I am way overwhelmed. I hate being negative and feel I am far to much. I say to myself I’ll get back to it and… time gets away. As I always say I never have enough time. Story of my life!! I am soo sorry thou all. Really really means more than anyone could ever know. It’s a hard time and makes us feel a bit better with so many ppl behind us. Even if I don’t say it means a lot. With all that said, I am glad Billy posted the pic. Right before it came I was on the phone with the nurse/coordinator and going over everything William and ALL the symptoms and side effects. When is pretty frickin scary as hell!!! 

Really so many things are going to change. Truly wish we coulda waited til after Thanksgiving but nope. Doctor said asap. And so we did. Now I’m hoping the next brain surgery can be after the holidays all together. After the first of the year. But I don’t have any control of that either. They want it done asap too. Which really the sooner they better but really….

William’s appetite will be different which will be hard he loves his food. He will loose his appetite and possibly his taste.. He will be sick and/or nauseous. We had to tell family not to feel bad if he doesn’t eat or whatever will happen at Thanksgiving. Like I said woulda been nice to start after Thanksgiving, but it is what it is and we do what the doctor says. 

There are sooo many symptoms and side effects. Scary to even think about. What they said will most likely for sure happen is: sick, nauseous, hair loss, fatigue, and mouth sores. So this will be interesting. He can’t really tell me things. He says I hurt but can’t say where:/ Points to his head a lot of the time. Which yeah your head had to hurt. Seizures… brain tumor… and everything going on in there… So we will see. Wish us luck….

Going over ALL these side effects and symptoms…. my heads just spinning. But I have to know everything I have to! 

So with just 1 time… he’s pretty out of it this morning. He got up and had a bath, like every morning. Love his tub time. Didn’t really play like normal just sat there. I cleaned him all up and he’s been sitting on the couch since. This was like 4:30am 

Gotta capture those curls while he still has them. I normally keep his hair pretty short. It’s just easier to take care of. But I’ve let it go knowing he’ll probably loose most of it. But his hair is the least of my worries. 

So, we are hoping everything’s not too bad and we can handle it. And that this Chemotherapy shrinks and controls the brain tumor. Fingers are crossed. One of the stupid side effects are seizures. Are you kidding me! That’s what we are trying to help also!! Everything’s just so confusing and scary. On top of it all I have to try to stay cool and not show how scary this is. So he doesn’t freak!!! Hard! Harder than you can imagine!!! 

Okay… I gotsa stop looking at all this stuff and get ready for Yerington. Ohh ohh also pick up William’s other meds. We are switching his ‘happy pill’ to a patch. So that will start today as well… yikes!!! He just goes thru so much!

And he’s out!

Ohh the joys the joys! All I can say is my fingers and toes are crossed. He’s a strong boy… just hoping I’m a strong enough mom!


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Filed under Autism, Life, Tuberous Sclerosis

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