Chemo…

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!

Meds and Monitor

So, we are going to be making lots of trips back and forth back and forth to Stanford. But completely all worth it. William is getting seen by the best of the best. And that’s all I can ask for.   

He just had appointments with his neuro surgeon and ts (Tuberous Sclerosis) specialist Thursday and Friday. We were told its where all the options were gonna be laid out. I like the idea of options. No matter how hard they all are. Having options is better than not! No matter how hard those options may be. 

Williams last MRI was in September ’15 that’s where we saw the enormous tumor in the ventrocal. November ’15 was the week long eeg and testing. And so on and soo on.  Two weeks ago we started Him on a new medication. That is for ts. Supposed to help the seizures activity. No help yet… Anyways. He had his left frontal lobe removed in ’07 and sadly enough the tumor is in the right side of the brain! Removing it right now isn’t the best option. With how big the tumor is right now. We have to monitor how fast it is growing. It is Benign! Thank freaking goodness!! As of right now bearly but the spinal fluid is not affected. If the spinal fluid gets cut off he will be paralyzed or worse! With the eeg in Nov they were pin pointing where the seizure activity was coming from. Hoping it was from close to the same location as the tumor and they and remove both at the same time. But that wasn’t the case. He has seizure activity thru out the brain But the migority is from the back right. 

Urghhhh… Makes my head hurt just thinking about all this I can just imagine how William feels. 

Okay so, for what we are doing…. Getting this new meds fully in his system. And starting another medication that will start to shrink the tumor. Monitor the tumor and take care if it if it grows at all!! Then add another med to shrink if he can….. We go back to Stanford April 1st. He will be off the behavior meds until then. Dunno how the school is gonna feel about that. But that have pretty much kicked him out so this might be the nail in the coffen to do so! His school issues are a whole other blog. Which I feel like I just might be writing after his IEP Tuesday.

Tumor shrinking medicians are scary I tell you. The scariest is the ones the doctor wants William on there’s not even any data on! Coming out the end of this month beginning of next. 

That’s what we’ve decided! Meds and Monitor Meds and Monitor. 

MAMA

Alright alright…. What I thought of this movie MAMA.
First of all, my dad and sisters are here well in Yerington visiting from Colorado. My sister wanted to go to Redbox and get some movies. She came back with two movies. MAMA and Perks of being a wallflower. I will blog about Perks later. Because I read the book as well.
So, MAMA…..
I normally like scary horror type movies. I think this movie might be the exception!
It started off promising. But got really weird and really tacky. Tacky like ‘ohhh this is what a horror movie needs lets just throw it in here.’
The film deals with the story of two young girls abandoned in a forest cabin. For 5 years after their father killed their mother and kidnapped them. Got into a car accident, found the cabin. They were fostered by an unknown entity that they fondly call Mama. Which eventually follows them to their new suburban home after their uncle retrieves them. Originally set for an October 2012 release, it was released in theaters on 18 January 2013.

Like I said, This movie was promising. But, for me….. Missed the mark! Badly!! I myself will not be watching this movie again. But but but!!! I did watch it with my sisters and dad and I do only get to see them once a year. So I can’t complain about that 🙂