update

Christian is the same, still hanging on.
I have been letting my hair grow long and decided a while back to cut it for locks of love,lastnight our friend was over and I did it. Cut it all off so here are before and after pics.

pics

Here are the boys all dressed up,We dont know if we will Christian on easter so we had it today. They are a couple of cuties!
If I dont post everyday things are probally the same so dont freak out.I will update when I can.

update

Last night was peaceful, He would wake up and look at me so I would talk to him, tell him i loved him. Hopefully today will be as well.

pic

I was laying with Christian and Carter wanted to lay with the baby so we were all taking a nap :)

another rough one

First off i was holding my breath all day yesterday for it was the 13th and that was the day of dx and others things have happened on the number 3.
We went to bed after having an alright day we just sit around and held him all day basically. Then early this morning he was having breathing issues where he was trying hard to breath, so we layed there and told him its ok go with god. We gave him morphin and put the fan on because thats what we were told to do and this morning he is still here with us, opening his eyes holding our hands. We just hate seeing him fight like that.

update

Yesterday was a good day, we gave him a bath with mommy and he must have been relaxed because he ended up taking poop in the tub.Then while daddy was dressing him and making fun of what he did to me he took a pee on daddy so he got us both.
After that he was awake for along time. He was even moving his right arm a little. So it was REALLY nice seeing that from him.

update

Last night was ok, he opened his eyes a little and looked at daddy,and this morning he is moving his head and trying to look at us and squeeze our hands. Of course he could be doing all of this because the patch is wearing off but we will take it.
Thank you all for all of your prayers from your mouths to gods ears.

update

His eyes are now not responding to light, and he has been sleeping for two days not really waking up.He does nod his head alittle and trys to squeeze our hand.
This is the hardest thing to do!

We wanted to thank the ladies that have brought/send us dinner. It has meant alot to us and that is more time we have spent with Christian. So again thank you.

few pics

update

Today has been an ok day he has slept most of the day but was awake enough to smile,show us his fist,play with a little baby snow man(he made me make him one) after that my sister and I took Carter outside to play for abit and I was able to laugh and enjoy time with him. However I felt a little guilty for having the fun with out Christian.

breathing

Christians breathing is starting to be labored. His heart rate keeps going fast then slow.

update

Lastnight was a little better regarding the morphin intake. He only asked for it once so the new higher dose patch must be working like we want it to. He does sleep off and on but he also is awake and showing us that beautiful smile.

We keep getting ask what people can do for us besides pray that things go smoothly dinners or lunches would also be appreciated. We are trying to enjoy every second that we have left with him and alot of times he wants one of us to lay beside him in bed snuggling but that's OK with us.

update

Christian is now on a pain patch as well as morphin. They are trying to find the right dosage to keep the pain under control.
He is sleeping pretty much all day these days but he does wake up for a few seconds and smiles at us.
Once again if you want to visit with him then please do it now and dont wait. He may not be awake when you are here but he will know that you are here if you sit beside him,talk to him touch him.

update

He slept all day yesterday and lastnight needed suctioned more then usual. Today so far he has been awake more and smiling some at us and carter. He can not sit on his own anymore so needs to be surrounded by pillows and blankets.
Again if you want to visit with him please do so asap. he is getting worse everyday.

pics

I love the one with the puppy its like there staring each other down.

Rough night

last night was hell!!!! About two in the morning he woke up choking and we both thought that was it that he was going to die right there. He had a fever of 103.7 so we gave him some tylenol took off his clothes and put cold wash clothes on him. That made us feel sick as hell seeing him like that. The nurse will be coming later to check him out so we will see what she has to say.

Visits

We have talked about this and feel that if anyone would like to come visit Christian that you do it ASAP. With the new medicine its making him pretty sleepy.And we do not know how much longer now we have. So please come visit him soon. Call and let me know when you would like. 206-8949

pain med

We are now giving him the morphin every two hours if needed. Yesterday he was having a bad day with pain.

pain control

We have started him on morphin as of lastnight. He was starting to ask for pain meds before it was time for them so this is our next step and if this does not work he will have a pain patch. I HATE this!

ihopecancer fundraiser

thank you for the new design...... http://www.cafepress.com/ihope/4905571

update

We are seeing something that we have not seen in a long time and that is Christians beautiful smile and laugh. he is still having shaking in his head but he has been in a happy mood lately of course some of it is due to there new puppy.Both boys love it and she loves them. We have gotten some negative talk over this puppy but to look at Christian and see him smile and having fun with her is all that matters. And the ones that unfortunately have been were we are know exactly what we are talking about.We don't know how much longer we will be able to see him like this. Carter as well loves her they run around and play all the time. Which is good because he will really need something when this nightmare happens.
We are so thankful that Christian is a stubborn little person because if he wasn't he probably would not be here today.
Again if you would like to visit please let us know,we are just asking that when you do that you keep things on the softer side for he does not like loud noise.

Party Pics

update

First off we would like to thank the Tops on Union for giving us the cake for Christians last day of school party. The kids loved it! And Party City for letting us in early to get the last minute items.
It was bitter sweet yesterday knowing that it was his last day and knowing why. But it was nice to see how much everyone there loves and cares about him. If he feels up to it we will take him for short visits.
He is getting worse we can tell the difference between vacation lastmonth and now. He is more irritable and frustrated. He does not like loud noise anymore that being tv,people,toys. So we are asking if you come to visit to please keep it on the softer side.
I will add some photos of the party in a bit.

update

Christian had a pretty good weekend, he was in a happy mood yesterday. I think it had to do with his visitors :) This morning he was having the shaking problem again but through out the day it has seemed to get better.
This will more then likely be his last week in school. If anyone wants to visit with him please let us know and come to visit sooner then later.

thank you

We wanted to thank everyone in the WV church family/school kids that have been sending Christian the cards and little gifts. He does love to get mail and this past week he has been one happy little boy. He loved the big valentine card and all of the cards/pictures from the school kids. We read every single one to him. He also loved the blanket.

When it rains it pours

So this week has not been a good one for us, over the weekend we thought the brakes went out on the van, turns out they were fine but needed a battery. The next day Darren goes out to go to the drug store and the van wont move the transmission went out on it on. So we have not had to much luck with the van.
We have all had appointments this week, Christian eye appts to keep an eye on the cornea and Darren and I a follow up however they said that I know have diabeties on top of everything else.
He is not sleeping well at all so in return we are not either. We have tried some meds but they did not seem to help so we will see if we can try something else.
He seems to be in a better mood today, maybe thats because he finally took a poop yesterday it had been a week since that has happened so we had to give him something for that as well. The dr said it will be harder for him to go now and take longer but we need to keep him cleaned out.

Thank You

We would like to thank everyone that was involved with the benefit, and everyone that came. It meant a lot to us to look out and see so many people there to help our family. Words can not be said for how grateful we are to everyone. So again Thank You!

benefit

If anyone comes to the benefit please come up and say hi to us.

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.

MRI

is now on Jan. 4th. So hopefully we will know something after this.

Dr appt.

we went to the doctor today and she checked him over and sent him for a chest xray, the xray shows that he has a viral infection which is good to hear that its something normal for once. She also talked with neuro and are getting his MRI sooner. We will be not starting the chemo until after we have this scan so that we will be able to see whats going on. He did say he hurts in his lower back and she said it could be pushing on some nerves in his legs. This is one reason they want the scan done. We have alot to talk about if things arent what we want to hear. Please continue prayers for christian and us.

update

christian has an appt. tom. to see his Oncology dr. She is also going to see if neuro will have his MRI moved up. We are concerned with how he has been acting and just want to make sure things are still ok. we may have his chemo held off until he has the next scan. Will update more after we see the doctor.

updating

Christian is still sick its been a few weeks now so we took him to the doctor today just to have him checked out, doing clear fluids tonight to see how he does and then go from there, His counts are pretty good so we know its not that. He has lost interest in eating by mouth, crawling and just seems to be more tired, doesnt sleep to well at night is up about every hour. hopefully he will get to feeling better he is suppose to start his 4th round of chemo next week.

As for other things christmas was pretty good we had our families over for dinner and enjoyed the day.

I wanted to aslo add that our aunt has had a stroke so im asking for everyone to say an extra prayer for her and the family.

We wanted to thank who ever sent the package to the boys. Christian will love the thomas backpack and they both love everything else. So again whoever you are thank you!

pics

Here are a few pics the one with santa was at the carlys club party and the ones with the buffalo bills were at there party. Note that christian is not a happy camper he did not want to sit on santas lap.

update

Christian is still trying to get over a cold that he had gotten while in the hospital. Tonight is his last dose of chemo for a few days. He has been more tired and saying that his head and body are hurting. Not sure if its from the chemo or what at this point. His next MRI is Jan. 22nd.

We are trying to get ready for santa to come. Both boys are excited and cant wait.

Please keep all the children and there families in your prayers.

Here he is waiting for the game to start and the kids making thank you cards for the players that gave the tickets so they could go.

pics

Here you go before and after! Doesnt he look good.

Home

We are home now. He had an ok night of course its hard to sleep in the ICU when ppl are talking or your monitor keeps dinging because you are laying on ur stomach and have the leads bent up but his o2 was good all night and they finally decided to take off the leads and then he was able to get a few good hours of sleep in. I will put up new pics soon.

trach

So far things are going well he did get the trach out and is doing good. His o2 has been between 97 and 100. He keeps telling us that itsout now. So now hopefully things will continue to go smoothly and he can keep it out.THanks for the prayers please keep them coming. update more later

Trach Day

We have to be at the hospital by 7am on Friday for his trach removal. His time in the OR is between 9am and 10am. So please say an extra prayer during that time for him that things will go well. Thanks

updates

First off we went to WV to the boys great grandmas for thanksgiving and it was nice to get away from reality for those few days.

Christian is posing in his new outfit (thanks Michelle) in front of the tree. He is excited about Santa coming to visit him and thinks he should be here now.

Things with him are going ok right now is suppose to get his trach removed this Friday,so we are hoping things willwork out and he will be able to breath without it. This is putting his 3rd round of chemo off until this is done and the doctor says he is able to start it.

He is doing ok on the chemo he is still crawling,playing and seems to be in a good mood for the most part. Seeing him be what we call normal makes this whole nightmare that much worse. We put on our smiles for the world but inside we are going crazy. We think will this be our last christmas,will he turn 5. This year is hard to get into the holiday spirit but we are doing our best for Christian and Carter and making as many memories as we can. We can hope that we will have many more years with him but thats something that we arent sure if we will have. So for now we will enjoy every second that we do have with him.

Please keep all the little ones and there families in your thoughts and prayers. Not just for the ones that are still living with this but for the ones that have lost there battle and are now angels. And remember to tell your children that you love them every single day!

Christian's Song of Love

We've found a way to get Christian's song up on the site so here it is...

Christian's Song

Trach and Lift update

We have heard from the ENT doctor today Christian will be having surgery to remove the trach on Nov. 30th. So we are asking that things will go well and he will be able to keep the trach out.

We have been given a lift and had a guy come out today to give an estimate on putting the lift in so hopefully by December we will one in and working. There have been a couple foundations that are offering to help us with the payment of this and we are very grateful for this.

Things are going ok around here he will finish his 2nd dose of VP 16 this saturday. He is doing good in school and is very excited to go visit his great grandma in afew weeks.

Please keep all of the cancer families in your thoughts and prayers.

Little update

Here is Christian the night of Trick or Treat. He went as Thomas the train. He loved going out and getting all the candy, as well as did Carter after afew houses and he realized he was getting candy he couldnt wait to get more.

Christian has finished his one Chemo and is still on the 2nd. He has been saying his head is cold here and there so he has been sitting around with blankets wrapped around his body.

MRI Results

First off I have to say the after scan experience this time was horrible. Christian was not very happy, he was hitting himself, scratching his face and screaming. I do not know if they used a different drug this time or what all I know is it was not fun.

Now for the results, we got the call that everything is stable! So at least its not growing or not growing that fast if it is.But stable is what we were hoping for.

He is having his 2ND round of chemo starting tonight and his next scan will be in January.

MRI Day

Christian will be having his follow up MRI today to see if Chemo is working. Please say an extra prayer that is working. I will update when we find out news.

Ramp/Lift Help Needed

As some of you know we are trying to get a ramp/lift put in before the bad weather hits us. We are however having a hard time with it, so we are asking if anyone that is reading this knows a way and can help us get this done before the snow starts coming. With Christian going to school I have to take him out of his chair in order to get onto and off the porch, the chair is not very light and is complicated. Thank you for any help you can give us right now.

Update

Christian showing off his new hair cut, unfortunately it is starting to fall out again from the chemo.

Went to the eye doctor last week and his eye is looking better now, there was another spot on it a few weeks ago so it was so good to hear some good news.

pics

Here we are trying to make there pumpkins Christian would not even touch the inside he looked in and said ew nasty, carter however had loads of fun digging right into it.

Christian trying on his halloween outfit, thank you to the family that sent this to him.

Pumpkin Farm

we also went to the pumpkin farm today as well, again we all had a lot of fun even if it was a little cold.

Fire Truck

We got to go to a local fire department and have a ride on the truck and the take a look around. The kids (and us) had a lot of fun.

Christian and Carter bday pics.

Christian has officially started crawling this weekend. He puts alittle bit of weight on his left hand but he seems to get around pretty good.

Happy 4th Birthday Christian! We love you

Chemo

He had his first dose of chemo lastnight, he ended up getting sick half the night. The doctor wants us to give him some nausea medicine before he gets the chemo tonight and see how that works. If he gets sick again then we will go down to one drug and work our way up to the second.

On another note we are all sick with colds and are hoping they pass quickly. Other then that he is doing pretty good.