Thursday, March 31, 2011

Today Grayson decided he was going to crawl. Not just the little teaser crawls like hes been doing, he full blown crawled from one end of the living room to the other!! It was so cool! Of course this made mommy and daddy tear up...he is such a fighter! I think hes going to be on the go now, it seems like sitting is just getting more difficult and uncomfortable for him and crawling seems to be working out well. He can get into all kinds of stuff now hahah! 
Also, Grayson was trying to sit and play with this wooden puzzle thing we have and he lost his balance and fell forward hitting his face on the edge of the puzzle :( I seen it happening but just couldn't stop him in time. So hes got a black and blue mark on his cheek, hoping it doesn't give him a black eye. 

Miss Emma looking all pretty again. I just love this clip and headband! So adorable <3 

Wednesday, March 30, 2011

I've been avoiding updating everyone on what went on today at the appointment. Sorry. This morning was such a roller coaster of emotions. I am really missing the older kids, it feels weird without them here. But I felt glad that it was finally Wednesday, but scared and sad also. We ran some errands before the appointment to kill some time and we got the Wyatt, Emma and Grayson some super cute Twins outfits for when we go to the game this summer (this isn't official, just a dream of daddy's to take his kids to a Twins game, hes such a great daddy). 
Well, we ran our errands and couldn't put the appointment off any longer so headed to Children's in Minneapolis. We couldn't find a parking spot which made things worse, I just hate parking up on the roof level! This was our view....

We got in and I was just so hoping we wouldn't see any other kids in there that looked "sick." We had a little bit of a wait but seemed to keep busy with the fun stuff they had in the waiting room. Lots of toys, pac man, a train table, and this cool little xray thingy set up. Of course we had to play with this stuff lol.

~Bad boys, bad boys, whatchu gunna do!?~
We were doing ok. No crying or anything...then I seen the books they had...
The ABC's of childhood cancer?? 
Really?! 
I got sad....it hit me. 
We are in the waiting room at a children's cancer center...this is NOT right!
Ugh!
Then after seeing this book I turn around to see this little girl and her mom walking in. She had on a little scarf around her head and she was walking really slow and she was really pale.She was holding a stuffed animal and just smiling away.  
This is what I was scared to see...
how can such horrible things happen to children, and yet these kids are some of the happiest kids you could ever meet...
I almost lost it, but i didn't. I wanted to hear what the Dr. had to say.

Finally, we got called back and they did height and weight. Grayson is now 19lbs 10ozs, and 28"!! Growing boy! :)
The Dr. came in and she did a whole lot of "Dr. talk" but at the same tried to tell us things so we could understand. She seems like a great doctor...just not so great at talking to people lol. She said that she is working with other neurologists, oncologists, to try and figure out what is best for Grayson. We didn't get solid answers and we aren't sure when we will. She said that if the tumor was in a different location, they would go in right now and biopsy it. But its in such a horrible location that the "risk out ways the reward" and she said we would have a hard time finding anyone that would be willing to biopsy it. Its just too dangerous for Grayson. They could paralyze him by going in to get a sample of the tissue, and on top of that, they may not get enough tissue, or tissue that is "scar" tissue and doesn't tell them a thing. Ugh. She called it a "medullar tumor" and also a "glioma." 
She said that they are still going to test for some other things that it might possibly be but doesn't seem like it is.  They just need to rule things out now, being they can not biopsy. Between the list of doctors working on his case, they want to test for a few things. An auto-immune thing of sorts that might be causing the body to fight its own tissue in the brain stem (which she said she doesn't think it is because the blood work is good), and also they want to make sure it isn't a secondary problem to some bigger problem elsewhere in the body. So they have decided they think he should have an MRI of the spine (to see if there are tumors further down the spine), a CT Scan of the whole body (to see if there is cancer somewhere else), Lab work (his white cell count was a little high in the last set of labs), and also a spinal tap ( to see if there is some kind of infection in the spine causing an auto-immune response which maybe be causing the growth-she wasn't sure of this either but its something that needs to be done to rule it out). They want these things done all at once, next week.
Then, he will have another head MRI in 6 weeks to check growth. If the tests prior come back showing nothing and the MRI shows growth they will proceed into "treatment." She said that they want to avoid the treatment at all costs. Hes just so young. She said they will start with a steroid of sorts to try and stop swelling, then next would be chemo. I hate that word. I hate all these words...but if that doesn't help, the next step is radiation. She said radiation is the last resort next to biopsy. Radiation can be localized and shouldn't do too much brain damage but it can cause other cancers. So we would fight cancer and cause cancer? So, hes so young he doesn't have many options...and we need to stop this thing from growing. I'm praying that it doesn't grow anymore...because it doesn't matter what this damn thing is...its grown and is causing problems for my son. 
Ok, so at least now we have a plan, even though we don't have answers. I don't know how I feel about it. I hate that my son is going through this. He is a happy 10 month old baby and it kills me that this is what he is dealing with. I just don't get it. 
We are going to fight this...as a family.






Tuesday, March 29, 2011

Been trying to keep myself busy today and this evening. I just cant stop thinking about tomorrow. Im not sure if ive prepared myself for what the neuro-oncologist is going to tell us. I just dont know what to expect at all.
 Grayson sportin the new tie I made today :) hoping to make more of these. I love ties <3
Emma had some really crazy hair today LOL

-The blog hop Flower-

THE WINNER IS....

Cricket Design Chicks SWARM
Congrats :)

Monday, March 28, 2011

Today has just been one of those days! I'm just really tired. Grayson was up a lot last night and then Emma kept waking up but would fall right back asleep. Not sure what she had going on, bad dreams maybe? And on top of that Grayson has not napped today yet! UGH~! He has spit up a lot more, its like all Ive done today is follow him around cleaning his spit up trail. He will be playing with something and next thing you know he just spit up all over it! Poor little guy! He doesn't want me out of his sight, he screams when he cant see me.
I'm not sure if it was just the way he kept trying to sit today or what but it seemed like his head was tilted to the side every time I looked at him. Sure hope that isnt coming back too.
Its so hard to see him regressing. Graysons teachers keep trying to get a hold of me to see if they can come for their visits but I just email them back saying we aren't ready. I don't know if I will ever be ready for them to come back. Its just one more time I have to explain what is going on with Grayson and when I say it, its like I'm lying. This just doesn't seem fair. He is 10 months old!!
But at least its almost Wednesday and I just hope and pray that they tell us answers, good answers. I'm dreading it also. So stressful!
Need to go do something tonight. Maybe head to MOA and do some window shopping. The stores have all their cute summer things out. I can not wait until its warm and summer is here!! I <3 Summer!!! Swimming, cook outs, kids can play outside, walks to the park....ohhhh will this snow ever go away? LOL I could go for a bloody mary and good dinner! :)


These pics are from yesterday, I forgot to upload them! I thought they were so cute! I'm still not sure what they were doing in the last pic but it was so funny! they were sitting like that and watching cartoons  (yes, i realize the other kids are gone but it seems more like a normal day if cartoons are on!haha)
OH and Emma is so damn cute! if you say "YAY!!!" she will clap her hands and sounds like she says yay! back at you LOL <3

Sunday, March 27, 2011

Today I made some bows for my shop. Cute! Then of course I had to model them on princess Emma. She loves playing dress up already. Well and I love dressing her up, so stinking cute!! I think she is going to be my little girly girl :)
I had the twins sitting by each other and Grayson just wouldn't leave Emma's necklaces alone and she kept screaming at him LOL. I had to get him a little tie to wear to keep him occupied and man did he sure look handsome! :)






I've noticed that Grayson's tremors are back. His hands shake quite a bit now, not as bad as when he was around 6 months, but its definitely back. Back to the point that he cant control it completely. 
I thought Wednesday seemed like it was going to be here before we knew it, but now it seems like I'm just counting every second until it gets here! It seems worlds away!! It will be such a life changing day for us and I just cant stop thinking about it :/

Saturday, March 26, 2011

Did a lot of driving today! I met my dad and step mom in Brainerd and they took the older 3 kiddos for the week. I just feel sooo lost when some of the kids are gone lol. At least the babies were good in the car LOL. The other kids fought like crazy...whats new? When I was saying good byes to the kids Buddy told me, "I wuv you mom, neat jeans!" and I'll explain..."neat jeans" means "sweet dreams" LOL we always tell him "sweet dreams" when we put him in bed for the night. Hes so funny! I already miss them...can you tell?! LOL

On the way home the twins slept the whole time! It was nice, but quiet! Not so much when we got home though. I'm not sure what got into them, maybe tired of being in the car seats for so long...or missed the other kids already but man...they just were crabby as can be. Both of them crying and crying! Doesn't help that for some reason they both are constipated now! I'm not sure why either. I noticed the filter light just turned yellow (not even red yet) so maybe its enough of a change in the water to mess with their bellies. Poor babies :(

Well, I have to try and keep myself busy doing things these next few days. Its like its a countdown until Wednesday-the trip to see the neuro-oncologist. I'm so nervous! I want to see her and see what she has to say, but at the same time I don't want to know. I don't want anymore bad news at this point. Feeling really tired...really really tired!

Happy Hopping!

My Favorite Things Blog Hop
Hey everyone, welcome to My Favorite Things Blog Hop hosted by my friend Krystal. She is turning 37 on Monday, March 28th and she thought it would be fun to host a blog hop listing some of our favorite things! How fun!! She is over at http://krystalskreativity.blogspot.com/  This is where the blog hop begins, but if you came here from  http://chick-n-scrap.blogspot.com/ then you are still in the right place. 



I chose to display my flower hair clip tutorial as my favorite. I am a mommy of 3 girls and I just love making these for them. Its so easy and super cute!
Supplies
-glue gun
-alligator clip
-flower (artificial, on stem. You can get this from any craft store)
-3/8" ribbon cut to 4 1/2"

Start off by cutting the flower away from the stem

Now you are going to want to remove the center of the flower and take the rest of the stem out. 


*just pull on it and wiggle the stem a little and it should pop out, if not then cut it as close to the flower as possible.

Next you need to glue the layers of the flower together (gluing around the center is best and some on the petals to keep the "shape")


 As seen above you also glue the center piece in.
Now take your alligator clip...we are going to line it with the ribbon to make it look cute 
Take the alligator clip and clip it onto the ribbon and hot glue around as you wrap the ribbon around it. You may need to practice a bit but this is what you should come out with. 

Almost done....
Now take that cute flower and the alligator clip...
figure out where you want the clip to be placed at (I go in the middle on the big flowers)
add your glue and place the clip on it and hold it there a few seconds.
Make sure you dont go overboard on the glue and end up getting it over the sides of the clip because then you wont be able to open it ;)

Its super cute and I just love having them around for dressing the girls up and its a great photo prop :)
So this is the final product....
<3

Now for a little fun!
Who wants to win this adorable flower clip?!?!?!?
Well here is how you can win it...

You are allowed 3 Entries into the contest
1. Leave a comment below saying why you want to win this beautiful clip
2. Link my blog from yours
3. Head over and "Like" my shop

Good Luck Everyone!!
The winner will be announced on Tuesday March 29th.


Thank you for stopping by my blog.  Please leave me a comment!  And now, if you haven't been over to see Krystal's page or you are at the end of the blog hop.. hop on over to http://krystalskreativity.blogspot.com/ and leave her a comment letting her know you have read them all!!

Little Blessings Boutique

If you haven't yet...you should stop by my new shop!! 
I will be trying to add things daily. I just cant get myself to go get a part time job outside the house and leave Grayson and the others at home so this is what I will be doing to help pay Grayson's medical expenses. I never realized just how quickly things add up when you have a sick child! 

So please head to My Shop and "Like" my page :)  
*If you have any questions on ordering please email me at jessicaLBB@yahoo.com



Once Again we want to Thank Everyone for your support! We appreciate the comments and the prayers more then we can find the words to tell you all. Also a very special Thank You to everyone that is participating in the Card Benefit for Grayson. It means so much to us! <3 Love you all!!


Friday, March 25, 2011

Good News/Bad News

Today we got the results of the EEG from yesterday and all is good. The nurse said that everything on the EEG looked normal so he isn't have seizure activity. This is such a relief. Not the answer to some of our big questions, but at least we are starting to get answers to some things. 
They got in some results for the blood work and so far the doctor said he doesn't think its the genetic disorder. But they will need to take blood again. I guess they need to take it a few times to get the main result. 
So, the EEG is good and labs are coming back good...this just leaves the neuro-oncologist now. I don't know what to think of this. I guess a part of me was just assuming something was going to show up in the lab work or on the EEG and magically it was all going to go away and they can just fix him with some medicine.
I don't feel hopeless like one might feel or even like I think I should feel...I have faith. I look at him and he is so happy and that makes me happy. 

Thursday, March 24, 2011

Last night Grayson had another one of his crying/screaming fits. It was horrible, nothing we did made him happy. I think it lasted around an hour and then he finally fell asleep. I hate when he has them because I feel completely helpless and its hard on everyone. 
This morning we were up bright and early to get Riley off to school and then headed straight to St. Paul to Gillette for Grayson's EEG and lab work. I wasn't really worried about it until we pulled into the parking lot then I started to feel sad. -Venting about parking lot- It sucks that we have to pay for parking! ok done venting lol.
I was just praying that he would cooperate during the EEG and not scream and cry for the whole thing. Well they hooked him up and I must say he did an awesome job while the lady parked his head with a red marker/pencil and Wyatt thought this was neat. So, I'm thinking he took notes and I wont be surprised if he draws all over the babies one of these days hahaha. 
Grayson did ok for most of the EEG test. It lasted 45 minutes once they got him ready and he wasn't very happy that he had things on his head so he kept trying to take them off. I got to lay on the bed and hold him so I felt better about that and I think it helped comfort him as well.
Then we headed down to Lab to get his blood drawn for some testing. Jesse wanted to go in with Grayson so I stayed in the waiting room with the other kids. I wasn't so sure if I would be ok with that but Jesse seemed like he really wanted to take him so I said that he could. Once they called him back I was so worried. Of course, right away you could hear blood curdling screams and I knew it was Grayson.....umm i was freaking out completely!! I was wondering if i should go back there and rescue him or just let Jesse handle it. I was 2 seconds from getting up when an old lady walked in and sat by us. She started talking to me right away and asked if I had twins...we had the double stroller so I think that gave it away lol. She was telling me that she had 2 sets of twins...eight kids in 6 years!! So she said she knows how crazy things can get lol. 
Then I was just going to get up and head back to get my baby when Jesse came back, ugh I felt sooo relieved he was back. He said Grayson wasn't even crying and screaming from the poke, he just didn't want to be held down. Which is understandable. I think by then he just didn't want anyone around him touching him at all! 
So now we are home and still don't know the results of the EEG. I hope we find out tomorrow...I just hate waiting. I took a little nap on the couch after we got home. I just am not feeling well at all. I think all this stress is breaking me down and making me sick. Id like to head to bed early but ill be doing laundry for a while tonight :/


After the EEG, you can see the marks on his forehead and his crazy hair lol
~~Still Praying for a Miracle~~

Wednesday, March 23, 2011

Today was a better day so far since last Friday for me. I feel more hopeful then I have and we went out and walked around Mall of America today. It was nice to get out and just go do something as a family and try not to think into things too deeply. 




Grayson will be having his EEG tomorrow morning and they will also be doing half of his lab work. I think they will be drawing some blood to test for that genetic disorder because the results can take 2-3 weeks. 
Today Grayson seems to be better then he was yesterday, as far as the weird sleeping thing. He was awake a lot today and napped as usual so maybe his day of sleep yesterday was just over due and needed.
He will be having more blood work/labs done early next week I believe and also another scan. The doctors are still not sure what is going on, but at least we are starting all of the testing and everything to figure out what is going on. We need to find out ASAP to stop this tumor from growing. Before we know it he could lose more function or become paralyzed.  

Tuesday, March 22, 2011

Really...Where is the silver lining?

Today was another stressful day. More phone calls....After a few phone calls from both the Children's Hospital and talking with a neuro-oncologist practitioner and also talking with our neurologist I found out that there is 9-12 different people working on Grayson's case. They all keep saying that his case is really unique. His scans have been sent to all people involved and they have met and talked over what it could be, and what can be done. 
Some things they agree on and some things they don't. But they do want to test for one possible thing that could be a genetic disorder (which I thought sounded better then cancer but if you read into this its actually not). The disorder is called Neurofibromatosis. But our neurologist said Grayson just doesn't seem to fit all the links for any certain thing just yet. They are all hoping they pick the next step just right and get things under control in time.
Even more bad news is that even if for some reason it turns out to be this Neurofibromatosis there isn't a cure for it and it doesn't change the fact that this thing is still growing and there isn't much room for it to grow without doing the damage.
So, there will be blood work done to see if its the genetic disorder, an EEG to check and see if he is having seizures possibly-this may be linked to the screaming fits that he has, and a spinal tap and also an MRI of the spine to see if there are lesions/tumors further down. 
For now we will have these things done and Should get a call tomorrow and see which of these things will start first.
His scans are also being sent to other hospitals to see what they think.
I just hope we get answers soon...

The Twins are 10 months old!!~

This morning the neurologist called. He wanted to know if anyone got back to us yesterday, which they didn't. He said he is trying to get us seen this Wednesday. He also said that he found a peds neuro-oncologist that has seen something similar and it wasn't a tumor. He didn't really get into detail and said he didn't want us to get our hopes up because he really didn't think was what was going on with Grayson. But with this other case, there was no symptoms. He said again that we need to find out whats going on with Grayson, his regression. He doesn't want Grayson to start losing more function and neither do we~
We have set things up that this weekend my dad or step mom is going to meet me and they are going to take the older kids and keep them next week. So I'm hoping we can set things up and find out more information in that time. 
All of this is sooo scary. When he was telling me about this other neuro-oncologist that seen something before that ended up not being cancer blah blah well at first I got really excited and was hopeful. But if this isn't cancer, its still growing and causing lots of problems. Its still in an area they cant biopsy without possibly paralyzing him. So should I be even get my hopes up?? I just don't see the silver lining on any of this. Even if it turns out not to be cancer he could still live his life not being able to move...is that what we want? Of course not...I just don't know how I feel at all. Just need to find out whats going on 


Well today I had planned on it being a fun day. But today Grayson doesn't want to sit at all, I think it hurts his back when he sits. I mean he has some tumor pushing on those nerves so it probably does hurt. Also right away he slept hours longer then normal and threw up more. UGH~


I got these pics taken

HAPPY 10 MONTHS MY LOVES!!!!!!

Grayson:
19lbs 2ozs
27" long
-rolling over like crazy! still using the rolling over to get to all the things he shouldn't
-started babbling more
-loves bananas but isn't allowed to eat :( only formula
-in size 12 months clothing!
-still working on getting in those top 2 teeth, which will make 4 teeth

Emma:
16lbs
24-25" long (not sure lol)
-rolling over and still no crawling either, but when you can just whine and 
have people do things for you, why crawl?! lol
-likes to sing along with songs, and daddy
-says DADADADA
-total daddy's girl!
-also loves bananas
-2 teeth 

Please keep praying for a miracle

Monday, March 21, 2011

The neurologist never called back. I was going to call them but just was afraid to. Im sure they will call eventually and if not then I guess we will be headed in on next Wednesday like originally planned. 
I just keep thinking about what he said on the phone, that there might be more cancer. This just sucks...hes just a baby.
We are trying to stay positive, but its hard. So tomorrow, the twins will turn 10 months old and we are going to try and have a little party for them lol. maybe i will make some cupcakes or something and if I can pry myself from holding and playing with Grayson all day i might get some decorations up. So, yes, we are celebrating Happy 10 Months :)
Its sure been a play on all my emotions the last few days. My eyes are tired. I dont feel tired, not more then normal..but my eyes themselves are tired. I have to fight to keep them open!
 Grayson hung out with me while I made this bow today. He just sat and talked to me, he loves watching me cook or do things, and dad said its ok now.
I want to ask the neuro-oncologist when we go see her if she thinks it will be ok for Grayson to fly. I think that it will cause pressure or pain from the brain tumor. So I think even if she says it shouldnt bother him that I wouldnt be ok with him doing so. Therefore, our trip to St. Judes will be a road trip. I think when I googled it, it was around 13 hours there. So need to start saving some money since gas is so damn expensive! 
oh, and there was a big misunderstanding on the drill situation. He still has to go :(
And Thank You to everyone that is praying for Grayson and supporting us. It means so much to us.

It might be other places...

I called this morning like I had planned. I hardly slept last night and this morning was a countdown until 8:30am  rolled around, which meant the office was open and I could call. I was so nervous I actually had to wait till 8:45am to call, once I had talked myself into it. It had to be done...
The lady that answered already had all of Grayson's information which was scary, maybe made things feel more real? But she said the earliest he could get in was next Wednesday at 11am. So I said ok, and called my husband and let him know.
Then about and hour ago the neurologist called to check on things. He wanted to know how we were doing, mentally. I said it has sunk in and we are all heartbroken. I knew that once I said this the neurologist was going to have a hard time still talking to me. He kept his composure during the visit on Friday but had left a few times during because he himself had started to break down. He said he wished Grayson had more options.
Anyways, he said that he was going to try and call and get us in sooner. He said Grayson needs a full body scan to check for other spots that he might have cancer. He said being that Grayson doesn't put weight on his legs he thinks that his spine needs to be checked for sure. There might be little tumors also in the spine...then he needed to end the call fast, right there, because I could tell in his voice that he was starting to cry. I feel glad that he is such a great doctor and he truly cares about our family and our son. He has since day one. But I feel he knows more then we do, otherwise he wouldn't break down every time he talks about Grayson. It must be worse then I am understanding...or maybe I dont listen because I don't feel a mother should ever have to watch their child, a baby, suffer from something so horrible.
My husband called and said that his sgt. called him and was talking to him about making his time up from the weekend, if you remember he left early so he could be with Grayson and I at the MRI. After Jesse explained what we found out, the Sgt. said he doesnt need to make up the time but he had to check with the Commander, which in turn said Jesse wont need to go sandbag with the unit or attend drill next week. YAY! Im soooo glad they are working with us on this. Its hard enough, we dont need to have Jesse be gone to drill too.
Sometimes I feel so mad...but all I can do is keep him happy. I will try and write more later but the last few nights Grayson has been falling asleep on me on the couch and he doesn't want me to put him down, and i don't want to put him down either. So I wrote as much as I know right now. The neurologist is going to be calling back later but please keep praying for Grayson

Sunday, March 20, 2011

I dont want tomorrow to come....

Tomorrow is the beginning of whatever is to come. We have to call the oncologist and I'm so not looking forward to anything that she has to say. But on the other hand, we have to do this, for Grayson. Tomorrow is truly the beginning of our new journey. I'm scared for my son and for our family.
The neurologist told us already that its not good. He's so young so his options are limited. So what is she going to say?? I'm so nervous, scared, and pretty much every emotion one could feel...I'm feeling it, all at once. 


Recently Grayson has been having a hard time sitting up. His lower back muscles seem to be much weaker, weaker then just a few weeks ago. I will put him down on the floor to play and he will be sitting and then just slouch and usually fall forward, or to his side and just kind of end up in the crawling position. He hasn't started crawling yet however. Still rolling around to get to the places he wants to get and finds ways to get into things he knows he shouldn't get into LOL. 
The neurologist said the tumor is pushing on nerves that are causing the:
-throwing up
-the weakness (in his back and right side)
-the trouble eating
-but shouldn't be causing him pain...I'm not sure if i believe this one though

I guess I should start making a list of all the questions that I'm going to be asking this oncologist. I finally opened the folder with her information that we were given by the neurologist on Friday. He said shes one of the best, but I still don't want to go see her. I don't want to even believe that this is all going on. Some times I feel like we are strong, because of him, and we can go through with this. But other times I don't even want to acknowledge that any of this is true. 
I dont know how I am supposed to feel. I should be strong yet I feel so weak and broken. My heart hurts and at times it hurts to breathe. Grayson is such a fighter and he is smiling all the time. I dont want that to ever go away....God will have to fight me if he thinks hes taking him away! This makes me mad...
It helps reading all the comments from people (family/friends, and even people we don't know) praying for our little Grayson. The comments really help me, they make me feel stronger and its comforting.
If you get a chance please stop over and check out the Card Benefit for Grayson that was set up by a great friend. We are so thankful for all your support.
Hello emotional roller coaster....yesterday had such highs and then the lowest lows I have ever felt in my whole life. I think its all finally hitting me now, and I'm not sure how I feel about it most of the time. We cry...a lot! So this is our life now?
My dad and step mom had to leave yesterday around 3pm. We cant thank them enough for being here, because I know there would have been no way either Jesse or myself would have been able to take care of all the kids the last 2 days. 
Yesterday we all went out to Chuck E. Cheese and the kids had such a blast. It seems I don't think about things as much if I stay busy.











Last night it seemed like all the kids were acting up. Wyatt was so over tired that he just kept being naughty, which sometimes it was hard not to laugh at him. He finally went to bed after 730 and the girls started fighting and woke up Emma so they had to get sent to bed close to the same time. 
In case the kids acting up wasn't added stress enough, Jesse was told by his Sgt. that he needs to pack a bag for 4 days for flood duty. Ugh! I'm sorry but if you house gets a little water in it I don't care, I want my husband here! We will be having our first appt next week with the Children's cancer doctor. I don't know what she is going to tell us differently then what we have already been told. The tumor is being referred to as 'inoperable"  so his only option right now would be radiation. um, YUCK. But either way, cant imagine the hubby would want to miss that, and we were told he needs to see her right away. If she wasn't on vacation we would have already seen her. 
My heart hurts for my baby, my head hurts from thinking of all of this, and my eyes hurt from crying. I feel like a huge part of me died and I keep replaying the whole conversation with the neurologist. "its not good, just go have fun with him." What the hell does that even mean...ugh.
So, I look at Grayson....and he doesn't look sick so why are we being told this. Will I be able to afford to go do fun things with him? Why are we told to go have fun with him? Is his time with us really cut short?? 
I'm crying as I type this and I want to wake up from this nightmare. I feel broken but I seem to be OK when he is near me.
Emma seems to be the same way. I wonder if she knows, if she can feel it and if they can talk with each other about it?