another rough one

Last night was a rough one. He was saying his head was shaking and he even threw up a few times. It was a long night and it was hard to see him in pain and when he would say mommy help me and there was nothing i could do for him it broke my heart.
There is nothing worse in this world then not being able to help your baby. Noone even knows what is causing the shaking so we dont know how to help stop it. He is now taking his steriods 4times a day instead of 2. Maybe once that kicks in it will help a little. I am hoping.

The Showers Family Benefit Flyer

A flyer has been put together for this Saturday's event. If anyone wants to put one up, feel free to print off this website. The Showers Family Benefit Flyer

pics

rough night

Last night was not all that great. We were getting ready for bed and he started saying that his head was shaking again and that his head was hurting. So this went on all night long. Dr. said if it gets worse she will put him on another med. Hopefully he will get to feeling better soon since we are still on vacation.
He got to see horses today and ride another tractor. Carter actually rode the horse and loved it. Christian was to scared to get on it so he would just pet it. He did feed it a cookie.
I will add pics later im not feeling so good tonight.

pics

Here are a few pics

update

I have tried to add some pics but it wont let me right now so I will try again later. Today we went to dinner with some church people and they got to see some ducks that are in there pond. Yesterday we played in the snow and built two snow men and threw snow balls at each other and had alot of fun.
Mommy is feeling better now that I got some antibotics so hopefully I wont be sick for the whole vacation.

We made it to nans house yesterday, of course we thought we were driving away from the snow and this morning we look out to snow here. I will add some pics later today after i get them down loaded.

benefit

Hi everyone a friend of ours is going to be holding a benefit for our family so that when the time comes for Darren to stay at home the last days with Christian so here is the info if you would like to donate a basket she would like them by Feb. 1st if you need any other information please email me and I will try to find it out for you.

On Feb 2, 2008, I will be holding a benefit for Christian. It will begin at 5 pm. At the Abundant Life Center. The address is 2155 Old Union Rd. Cheektowaga,NY 14227. Tickets are 20.00 and include an arm's length of chinese auction tickets. pop,food,coffee are included. for any donations of baskets and or tickets email me or call me @ 605-4877 or 276-5916. Thank You!! Vicky
If you like to send a donation please email me and i will give you the address. amikinsjo@yahoo.com


We will also be pulling out first thing in the morning for our vacation I will add pics everyday that he does something fun.

updates

Ent visit went ok he did say that he could close the hole up but its not necessary, and we have opted to not have it done we want to enjoy every second that we have with him at home not at the hospital.
I got the results from my stress test and they said everything looks fine. So it ended up being stress. I am thankful that its not serious for I could not handle anymore bad news.
He has an eye appt. tom. morning.

He did go to school today and i am missing him like crazy but I know that he has fun there and the people there miss him as well.

updates

This week is a little busy for our family. Today I had to have a stress test and will finish it up wednesday. Christian has a follow up appoinment with the ENT doctor on Tuesday to see how the trach hole is doing. He will go back to school on Thursday and Friday after his eye appointment. Monday we have a family meeting with his Onc. doctor and then on tuesday we will be heading out on a vacation. We want to take Christian on one last trip and make lots of memories. We arent sure where all or what all we will be doing but hopefully we will have lots of fun.
I am not allowed to touch the kids today because of the cardiolite they gave me today so its pretty hard on me when christian says he wants to hug me or wants me to hold him. Hopefully by friday things will be back to what we call normal.

MRI

We got a call from the onc. dr today and she said there is growth in the spinal tumor. So this means we will not continue with the chemo he was on and may do another if she and the other docs feel it will help. There is also the possibility of doing radiation just for pain control. He is also going to start on a steroid monday to hopefully help with the pain and the shaking in his head. We should know more by this week sometime.

update

Last night was rough, he kept saying that his head was shaking but when we looked at him he looked fine he said it was on the inside, so I held his head with my hand and he laid close to me. we were scared lastnight watching him,seeing how he is doing. We are still waiting on results and that makes this whole thing worse.

I thought I would tell you how our day went. When we got to the hospital things were going well, christian had a visitor come to see him and got some playdough, another one gave him a sabres shirt and camera(thank you both) we even went down stairs 10 minutes early. So we thought that meant things would go smoothly, we get there and ended up waiting on the doctor for over a half an hour and the scans normally take two hours maybe a little less. Today it was over 3 hours and we were starting to worry. They did get him out after we had asked whats taking so long and put him in recovery. Like normal he threw a fit and cried. They did let him leave recovery early and go back to the floor when we got there he wanted milk they dont normally give you milk after being put to sleep but they did today because he was so unhappy. They let us leave the floor early as well and go home. Christian is still a little crabby but thats how it goes.
I doubt we will learn anything this weekend so when we do I will update.

Happy New Year

we wanted to wish everyone a happy new year we hope its a good one.

Christian seems to be filling a little better today he was playing and crawling some. We are however getting anxious about the scan Friday. We are of course hoping for stable but at this point we just don't know.

People always ask how we are doing and honestly not to well. Our son is sick with cancer and going to die before he should. Its hard for us to even plan ahead in the future because we don't know if he will be here. We cant just close our eyes and believe that things will be alright because they aren't I just wish that everyone around us would get out of denial and realize this. Its easy for them to think this way because they aren't living with him and this 24/7 like we are. We are not giving up hope that a miracle might happen but at the same time we are living the crap life we have been dealt.
We are taking pictures and video of the boys together because I'm so afraid that Carter wont remember how wonderful of a brother he had. When he says I love you momma it breaks my heart but at the same time I cant get enough of it.
People like to say things happen for a reason but what the hell is the reason for this! No child should have to go through any of this.
I pray for the children that are dealing with now and the ones that have lost there life to this and there families.
So pleas keep them in your prayers as well.