We made it through one week!

Somebody knock on wood. We made it one week without a seizure. GOD I hope this Keppra works for Ben. I couldn't sleep lastnight.

I put my daughter on the bus today...3rd grade adventures...

We kinda had a bad night the other night. Ben's been emotional of course he is, finding out you have a brain tumor isn't something you do everyday. So he ended up frustrated with willow...she didn't really know how serious things are...so he told her. He told her as much as we know. I'm not sure how to handle any of this, she's 8. But if we didn't tell her and something happens to him would she have been mad if she didn't know anything? Or more of a shock. The only thing she said was that she was said cuz who would take her fishing or teach her guitar. She cried a lot. I'm sure it's extremely hard for her to understand. It only sets in with me here and there...I'll be ok and then BAM hits me...I feel like I'm going to pass out and then I bawl.

I feel like I've cried all my tears out. I know that can't be!

Getting a handle on the seizures is a huge deal. He's taking Dilantin and Keppra. The Dilantin isn't working and I guess to cover him they start the new med overlapping the old one and tomorrow he gets his blood checked. And eventually in a month he'll go off the Dilantin. And hopefully the Keppra works. Not one is it scary if he hurts himself...by falling or whatever...but is it going to do any brain damage? Or anything else inside him? It's so scary and I'm the only person who's seen him the two times. Someone who was perfectly healthly one minute to have a seizure ... seems impossible. Seems surreal. I have only left him here and there for like 5 minutes to get our mail...damn small town PO Box bull! I tell him to lay down and not move! And I fly!!! I hate leaving him...and if I want to do anything else I have to find someone to sit with him. I dont know what else to do. He has maybe a few seconds of feeling sick and then BAM! The scariest thing I've ever seen! Too much reality!

I feel like I must grow up and take care of my husband. No happiness is coming from any of this. I'm getting more stressed out about the mountain of bills coming our way...we've already gotten 11,000 worth and that's not even the start! bleh!!! We don't have insurance. We have enough money to live for one month...thanks to his vacation time and friends/family helping us. I'm so getting worried. His medicine alone is so expensive. No insurance sucks. I applied for a med card for him right after his stay the first time it's been a couple weeks and then I did again with my case worker. Someone please send us something! Now waiting for a link card to feed my family. How did all this happen? HOW? We were getting our stuff together and almost happy for a week!

You want to think none of this matters keeping him healthy and alive is what we need to do. But I'm trying to balance and keep things together and I am not sure how much I have in me to get it done. If we didn't have Wil to take care of well...we do soo. Things would be way different. Life goes on...school...activities...

Picking what is most important is still not an easy thing to do. Keeping Ben happy is harder by the minute. If he's not feeling good he's feeling depressed. and bored. We have to wait until sept. 14th...to see the Dr. then probably get referred at that time. LOTS of waiting and we are not patient people. Trying though!

I feel bad for Mae, his mom...she works at a cancer center in the office. And has to go back to work today. After dealing with her son's brain cancer for two weeks now. How is she doing it? I am not sure! I feel for her!

I am hoping for a good day. We get to meet Wil's teacher tonight and Willow is going to help with the girl scout's table recruiting girls! lol I hope they get some!!! :)

This is where the wedding vows get real.

Everyone gets to go home at the end of the day and deal with their issues or life. We go home and it's back to pills and not sleeping through the night. Does anyone know what it really means to be there for someone through it all? This is the most selfless I've ever been. Since August 7th, I've done nothing but cared for my husband and daughter. Nothing new really but I haven't even thought about anything else. I'm in autopilot mode. I'm doing what I should be doing. I love Ben.

Yesterday was our first day out after surgery. We went into town where most of our family lives. I was nervous at how people would act towards all of us but mostly Ben. They saved us a close parking spot at the park that was nice. He started out ok. I forgot a chair...bad caregiver...so he sat at a picnic table for awhile. Everyone talked to him. Everyone asked me how he was really doing. I felt mad and wanted to say How would u feel if you had brain cancer? Dumb question..oh he's fine just great.

So while standing around worrying about him I couldn't have any kind of good normal time. His color starting fading and I looked at him for the first time and thought he's sick. I can see it. He decided that he was going fishing with his brother and best friend. We had talked about it and I thought it was too soon. So in front of them I just said my part. Well I felt like shit. I said well if you go to your mom's take a nap get some food take your pills then you can go for like an hour. lol I'm 31 and he's 32 and now he's my child. I felt bad. So I was just talking it out with him. I don't want to keep him from what he loves to do. So that is how the night went. He had a good time caught some fish. And felt ok I guess.

I'm just a reminder of all that is bad.

I realized real quick. Everyone will get his good and I'll get his sick and feeling like crap and moody and grumpy and needing me for everything. I just figured out what my part is in all this. I have nobody to talk to really. Talking to him is just not good.

So now it's almost 8am and he's wiped out from yesterday still in bed. I got up and made him coffee and rolls...hoping for that same feeling ok he had last night.

He kinda was mean lastnight to Willow. She's upset worrying about xmas this year. Well normal 8 year old. She doesn't know the whole story. So it's not fair to get angry with her. Ben did. He got mad at her and then talked to her and told her he could be dying. Not sure if that was the best time or way for my 8 year old daughter to hear that. This is getting out of control.

She cried.

I didn't want this hanging over her head. I wanted to give her a normal life. A happy childhood. Even I her mother can't control all.

FRIG! I'm so angry.

We have the right puzzle pieces but they will never fit all the way. They never have. We feel in love in high school. We have been through some really tough times. Always feeling like this is right cuz we love each other so much. Things feel so comfortable and right.

Cancer is going to beat us. We can be positive and we can hope. For sure. Being positive the will for life people say goes a long way. Not sure right now if it's enough!

I've never experienced a loved one being ill or dying NEVER. Not up close. And now the only person I've ever loved or loved me is the ONE. I question my ability to deal witha ll this. I'm sliding down the slope and can't stop.

Everyday is waking up to this nightmare and wishing u could go back to sleep and start over again. How do people make it through this stuff? How can I keep my family together? Not sure I'm strong enough.

Life has changed as we know it and will never be the same!

On August 7th it was any normal Friday night. Ben got home from work at 4:40pm...I hadn't been feeling good, planning on getting this poisoned gallbladder out soon...I had been laying down and didn't fix dinner for the first time in forever!!! Ben worked on his mom's friends truck til late. Came in we talked a bit he crashed cuz he had to get up and work on Sat morning for OT. I woke up at 3am to him sitting up in bed, I thought he was going to get sick, and he said what's going on? And by time I put the light on, he had thrown his body off the bed and fell in between the bed and wall and starting seizing. I didn't know what to do, I was tired enough to NOT panic. I ran to the phone called 911.

He's 32, never had any health issues at all. Why was this happening?

I had them take him to our nearest hospital down the street. So scared and worried and in shock! He was out of it. The seizure had lasted quite awhile.

My mother in law was the next call. The police officer drove me to my daughter's friends house and she was safe until I found out what was going on.

I met my mother in law in the hospital...they had NO clue what had happened. By then he had woken up and kept repeating himself wow what happened? I was so scared.

He then got a scan of his head. They told us there is something there but didn't know what. He needed to be transferred to a bigger hospital for an MRI. So that is what we did. Thankfully my brother drove up 30 minutes got Willow, our daughter and between his family and my mom they watched her for us. We went to the big hospital. They put him on seizure med called "Dilantin". So far in shock so it hadn't hit me yet.

LONG time waiting on Dr.s and tests...all was ok...except they told us he has a brain tumor. A WHAT???? WHAT? WHAT? I felt like someone hit me over the head. I started bawling. Ben froze. His mom, works at a Cancer center...knowing too much...she started to cry. The Dr. told us he needed surgery right away...if he didn't he might have a year to live. It was in his right temple region in his brain and it went in deep. So if he was careful he'd get the more aggressive part out and do what he could. But the biggest risk is he could be paralyzed on his left side. Where it is, it wouldn't affect many things cuz those are on the other side of his head. I knew there were many more bad risks but you can't drive yourself crazy.

You don't know the right questions to ask. You can't process or have time to if you could. I didn't want to upset Ben so I didn't ask him a bunch. We knew what needed done...he came home and we had a "normal" night with our daughter. Hoping he'd wake up and know us. We went in to the hospital at 4:30am...surgery was at 8, 6 hours later...he was out...and in critical care unit. Very strict rules to visit...I couldn't stay in his room.

When we finally got to see him he was sitting in his bed. He looked normal. Besides a large 8 inch cut on the side of his head and many staples. He moved around very much in pain and confused. Sick. He looked at me and said Autumn, see I know who you are. He said hi to his mom. He acted so normal. He was him. While I felt relieved...I felt that same rush hit on the head feeling and I had to sit down...it hit me like a ton of bricks. I had to leave the room. I went down to the bathroom and a weeks worth of pain and fear poured out of me. I cried so hard. I felt at that moment I can't do this. I can't lose him. I can't. I had a bad panic attack.

I called my mom and let it out. I love him so much. I've loved him for 16 years half my life. We had plans. We just had a horrible year of unemployment and losing everything and starting over and getting on our feet we were happy for a short while. and now this.

In shock. So scared. Everyone has rallied behind us...and is helping us. He can't work so we are in NO income zone. We have NO insurance...no money. If shock and denial didn't exist for us we'd have lost our minds.

So now he's healing. He's uncomfortable...in pain...sick. Had another seizure days later after his surgery and now has a new and very expensive medicine...on top of the others. The pain med doesn't take it all away. I can't sleep or leave him alone so afraid he'll have another seizure...and hurt himself or wake up someone else.

Living a nightmare...everything is not the same.

I love this man and can't even describe how I feel to see him go through this...and we are just beginning! I want him to live a long life but I know deep down...