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.

ENT Appt.

Sorry its taken a few days to update the news things have been a little crazy around here. We did get some good news, the Dr wants to down size his trach to a 3.5 and if he does OK with that then it could be out by WINTER!!!! We were happy to hear this some good news is what we needed.
He had a fever and started vomiting the other evening we aren't sure if its from the flu shot he had gotten that day or if he had caught something from somewhere. He is feeling better today though.
We will also start his Chemo Monday evening so at least we will feel like we are doing something to help it. I pray that it does not make him to sick and that he can stay in school and do anything else he wants to do.
Please keep another ependy child in Ur prayers for they are going through a recurrence now as well.
Thanks for the prayers
Hugs to all!

more bday pics

Here is Carter during present opening, he was not into it that at all he just wanted to play.
And Christian was throwing the clothes to daddy and was waiting for the good stuff. I love the pic of him hugging his car pillow.

Bday pics

Christian trying not to fly away and Carter doesnt want to get out of the swing.

Our only option

Hi everyone, We did hear more news on Friday but because of celebrating the boys b-days I decided to wait to update. Dr. Merchant called us and said he would not do radiation on Christian for he feels that he would not be able to handle it, coming from a doctor that does take risk with that it did make us feel defeated in away. He feels that Christian should do chemo to hopefully hold it off, stabilize it. If that doesn't work and it continues to grow then we would change up our chemo drugs. He will have MRI's to montior the chemo.
He said that maybe in 6 to 8 months if he was having symptoms and was stable himself then he might consider doing spine radiation but that sounded like a big might. This is not the news we were hoping for but it is what we have so now we have to make the best of it.
Everyday we have with Christian is a blessing and I only hope and pray that we can have many more days with him.
Thank you again for all your prayers.


Please remember a friend of ours Alex he only has a matter of time now so please keep him and his family in your prayers.

All of our Options

These are the options we have been given, Chemo, radiation or having both at the same time. This is what we have gotten from the docs here in buffalo.

We have heard from Memphis and the dr. feels we should do chemo to buy some time until Christian gets older and then do more radiation.

So now the doctors will discuss what drugs they should use and then we need to decide what we want to do as well. Thanks for the prayers please keep them coming.

Spinal Tap Results

The results came back today and it is a reoccurence in his spine. We meet with the docs tom. afternoon to discuss our options.

some good news

I thought I would share what a good day we have had today, Christian has been on the floor rolling all over the place and trying to crawl. He has also learned that he can sit up all by hisself is laying on his stomach. So now he wants to do it all the time. With everything else that is going on this was a much needed day to see him having such a good time and knowing he can do things on his own. Again thanks for all your prayers.

Spinal Tap

spinal tap is this Friday at 12:30 so we should know results next week.

MRI Results

We got the call today, the spot in his head has grown and now they are worried about the spine she said there was some haziness at the very bottom of the spine so they want to do another spinal tap with in the next week and half. This was not the news we were hoping for so all we can do now is pray that the spine will turn out to be alright. Please keep the prayers going for Christian and the family. Thanks

MRI Day

He had his scan today what we thought was just going to a brain scan ended up being brain and spine so it took over two hours. We do not know anything yet we should at some point next week and thats when I will update y'all on that. Thanks for all the prayers.

On another note he has been throwing up over the past month now either right after he eats or during. He was put on some medicine but that didnt seem to be working so he is now on another one and hopefully that will work and its NOT a sign of the tumor being back.

First Day of School

Here are a few pics of Christian waiting on the school bus. He was actually ok with getting on today, he was a little scared because he had to get on backwards with his chair but hopefuly in time he will get use to that and things will go well.

New Chair

We finally got word that Christian should have his new chair no later then 3 weeks.We can not wait for that.

School Time

I got the call today that Christian does have a nurse for the bus and for school so this means he will be going back on the 5th. Hopefully things will not change between now and then and he will get to go.

Other news his MRI is on Sept. 7th so we are hoping and praying that this will turn out to be good news as well.

bison game

It was the polish festival at the game. This is a staff member giving Christian the practice ball they used that day.

bibleschool pics

Spinal Tap Results

We got the call today and the spinal fluid came back negative.Thank god for that. One step down and one to go, his MRI is Sept. 7th and hopefully it will be good news as well. Thank you everyone for your prayers.

Photo Sales

Hi all, we are going to attempt to start a business selling photography and our intention will be to give a percentage of our sales to ependymoma research so that hopefully some day they can find a cure for Christians brain tumor type. Here is the link for our site and we will also have the link under the links section on the right side of the page. http://cncphoto.org/
Thanks.

Spinal Tap

It will be Friday Aug. 10th at 11:30 so we are asking everyone to say a little prayer around that time that everything will be ok.

Good News and Bad News!!!!

Good news first Christian went to the eye dr yesterday and his vision in his right eye is 20/20 the dr as well as us were surprised, but thats great news.

He also had the nerve testing yesterday and there is no nerve function at all on the right side of his face.

He had his MRI on Tuesday and we have just learned the news they are not sure if its the new machine or tumor there is a spot on his spine and the spot on his brain is growing. They want to do a spinal tap to hopefuly rule out tumor in the spine and another MRI in a month to see if its still growing in his brain. So everyone please say extra prayers that this is not tumor.

Breaking the rules!

We were told Christian should not go swimming with the trach, but we wanted him to enjoy the summer like all the other little ones, He had so much fun just sitting there and moving his hand and leg. Thats all that matters to us.

pics

I thought I would add these pictures of Christian trying to crawl over the weekend. He still is not able to be on his hands and knees but he figured out another way he could do it.

Few updates

This past week Christian has started all of his therapies and the teacher, so far things have are going well. PT brought a walker type piece of equipment to help him walk on his own maybe that will make him feel more independent.

We did take him to the doctor Thursday he was running slight fevers and throwing up his feeds turns out he has an infection so she put him on strong antibiotics. He will be on this for 10 days.

Wednesday we took him to see a plastic surgeon about his facial palsy. He told us that he feels Christian has tone in his face and not to do the 7Th/12Th nerve graft. And that we don't need to rush on this for he is still young and growing. He did mention doing a muscle procedure or a sling procedure in the far out future. Our NS here and a doctor in Tn. are both now saying its to late to do the 7Th/12Th surgery. So now we are stuck with what are we suppose to do, so we are looking for another doctor to get there opinion. The plastic surgeon also mentioned getting him tested to see if there is anything working in his face so this is something else we will look into.
We just want whats best for Christian and wish our doctor wouldn't have told us to wait back in march. We will update more as we figure out things.

Therapy updates

Christian will be starting his summer sessions starting Monday the 9th. He will get a teacher, Speech, OT and Pt so our week will be busy. We are hoping once he starts therapy that his walking will take off and that he will be able to use his hand. I will update sometime after he starts and let you know how it is going.

Celebration Pics

Few updates

First off today is Christians 1year cancer free anniversary YEAH!!!!!!!!!!!! it has been a rough road the past few months but we have him and are enjoying every second that we do.

Second we will be getting a nurse she actually will be starting today so we will see how this all plays out.

Some Updates

First off he went to the ENT yesterday and they did not say to much really just checked his site and said come back in September for a scoping to see how the cords are doing. And if they are working and he is doing better then we can start putting smaller trachs in and begin the process of taking it out all together!

For Ms Fawn and Mr Robert we thought you would like to know that he is now walking with our help but he wants to do it and that is great news for us!

More great news today he said mom! yes thats right he talked, he said dad and nan and tried to say Carter. So maybe this is the start of it all and he will be talking in no time. He still will not wear the speaking valve but if can talk with out then thats fine with us.

Relay Pictures

Here we are at the Relay for Life walk. It was an experience I will never forget. Here are a few of us walking the survivors lap, Christian holding on of his luminaria bags and then all of us as we were leaving.

Celebration

We will be having a little gathering on June 20th @ 6pm to celebrate Christians 1 year cancer free date. If you are in the area please stop by and enjoy the evening with us.

appointment update

Today was a hard day for Christian had had his appointments with his Onc. Dr and then saw Neurosurgery N.P. to remove the stitches. Some of them had grown over and was stuck so she had to pull harder to remove them. Meanwhile Christian is very upset it was all I could do to hold him still daddy had to help as well and hold his head. She did leave one stitch for it would not come out so we have to clean 3 times a day and it should losen and come out easy.
We have a follow up in two weeks to check the wound site itself.

On the other hand had an appointment yesterday to start putting together his wheel chair information. He was measured and we discussed what would be best for him. So hopefully now things will move a little faster.

He will also be doing summer sessions at home for school he will recieve speech, OT and PT and a teacher some will be 3times a week and others 2 times.

We are also going to the relay for life tomorrow evening so hopefully I will be able to post a few pics over the weekend.

Picc line

Well this morning Christian's line started leaking so we called the line nurse she came and looked at it but we had to go to the ER to have a new one put in. To our surprise it was not an all day wait we were in and out with in 3 hours. So hopefully this one will last until his meds are finished on the 15th.

Update

So we have been home for a few days now and so far has been crazy with trying to get everything in order and making appointments. Thankfully he is off one of his meds as of today.

We also wanted to say Hi and we miss you our family from Lebonheur in Memphis. And to our new ependy family.

Christian is doing pretty good today he wanted to go shopping :) He wants to eat so hopefully sooner then later he will be able to. We have our appointment for ENT in a few weeks so we will see what they say.

Update

We have been home for a day now and trying to get into this new lifestyle.Hopefully things will be a little easier once he if off one of the medicines it is given four times a day and and the night times are a little tiring. Christian has seemed happier to be home and see Carter. He had sit in his little chair all day yesterday and is in it already this morning.

We are Home

We are home!!!! And so far we are exhausted the nurse came right after we made it in the door and was here forever so we really didnt have to much time to relax. We have been trying to get his equipment together and have found they did not bring everything so im not sure what will happen tonight since its 11pm.

Im and adding a pic from the plane,Christian loved it he had a big smile when it was going up and mommy was holding onto the chair. But it turns out it wasnt all that bad. Going to bed now ill update more later.

Going Home

We are going home today! So im asking for an extra prayer for a safe flight and that we will adjust to being alone with out the nurses! We are all excited about leaving but we will miss everyone here. Ill let you know tonight how things went.

When you are in the hospital you tend to get a little bored so Christian and mommy put these window gels on each other.

Christian with his Tray bear.

And our new extended family.

Help Needed!!!!!!!

We have an offer out there for someone to fly us home but we are waiting to see if they want someone medically inclined to go with us so we are in the need of finding someone that will be willing to do so but it would probably be unofficial for this is a private plane. If its someone that will have to fly back home them selves we are willing to get you a plane ticket back somehow. So if you are willing you let us know on the blog, email or phone call. 716-310-6609. They are saying hopefully Friday will be our day to get out.
Thanks

Update

The infectious disease doctor wants him to get a pic line in today this is something we can go home with. He needs it to get the IV meds he is getting for his infection. We still do not know when we will be leaving Memphis but at least we are working in the direction to do so.

He is a good mood today he is having therapy OT and PT as I am typing this and is doing a pretty good job throwing the balls at the board.

Dr Sanford took off this head bandage this morning and said the area looks good.

Update

Not to much to say but thought I would post about his how happy he seems to be these past few days. He is up in his special chair watching a Barnyard and playing with some animals smiling. We did try his speaking valve this morning and he was trying to say wagon he wanted to go for a ride. So hopefully the more he has it on he will get use to it and be able to talk sooner then later. i do miss hearing that sweet voice of his and the last thing he said to us was i love you mommy right before being wheeled into surgery.
Still no news on when we will get to go home for sure but hopefully it will be sometime next week. I know that when we get home we will have to get use to being home alone with him. So hopefully that first day or so we can relax and spend time with Carter and Christian and just be a family for bit. It is hard being away from the little guy this time around and I know Christian is missing him as well. Have to go for now he needs suctioned again.

Surgery Update

Christian made it through surgery ok he does have an infection but its not in the wound so that was the good news he did put the bone back also. A stitch on the inside came out and that is what caused the infection. He did get a port put in for his meds and that will come out when those are finished. He did however have to get a blood transfussion for his hemoglobin was low. He made it back to the room around 5:30 (memphis time) and has pretty much slept since. He does wake up to make sure we are here with him though. So I guess we will see how the evening goes.

Surgery

He is headed to surgery in just a little while the doctor is going to take his take off part of the bone and clean out the area and decide if he will put the bone back after he is in there and sees what it looks like. He does have an infection the question is now where exactly is it in the actual area where surgery was done or the incision. This will put us here at least another week. Please pray that things will go good and he will heal soon.

Also we just found out that his friend Johnny was admitted here lastnight for an infection and will have surgery as well so please keep both boys in your prayers.

Fevers

Well we have said we may get to come home Thursday but now we may not. Christian has had a few fevers over the past day and half and now some leaking from his incision. We are not sure yet how this effects anything until the doing takes another look at him. We are praying its nothing serious.
On another note our new friend Johnny came back in town Sunday to start his radiation so we are asking that you say an extra prayer for him and his family while they endure this adventure.

We met another family in ICU there baby is 6months old with hear issues so we are asking for prayers for them as well.
Thanks everyone for the prayers.

Update

Christian had a pretty good weekend. We have been cleaning the trach area by ourselves now and are trying to get the hang of it. We will have our last training on Tuesday morning and then in the afternoon have the training on his new equipment for home. So at least we feel like we are getting something accomplished. They are saying that Thursday is our targeted day to leave so we will see. He had his measurements for his new wheelchair or stroller so we will have a way to get him around.
We will update when we know more.

Here is Christian with his new friends Bernard the puppet and Nicholas, and of course what he loves to do take wagon rides!!!

Update

Christian so far has had a good day today, he has been smiling and playing around with us. He had therapy this morning so that wore him out.
We had our cleaning lesson today for the trach it will definitely be a two person job one to hold the trach in place and one to do the actual cleaning/changing. It wasnt to scary but then again we are in the hospital so we had help if would have needed it. They want us to do it his weekend on our own to get use to doing so. Then on Tuesday we will have our final lesson on how to change it out so that should be fun.
Looks like he will be transported home by an ambulance at some point next week. We have to finish our trach training and then do our homecare training for the new equipment. So hopefully things will go as they are planning.

Sorry

For those that have tried to call us yesterday sorry the phone ringer was turned all he way down and so it was not ringing in here. I was trying to turn it down so that it would not wake up christian and looks like I did it to much.

On the other hand he had a good night sleep lastnight. Slept the whole night which was nice for mommy and daddy. We had to suction him when he woke up and that was it.

Update

The past couple of days have went good. We dont have to suction all that much. He got to go for a wagon ride lastnight and he did not want to get out. He also had some PT/OT he got down on the mat and did pretty good for his first time. He will continue to get these while we are here. Hopefully that will help him to recover faster.
We set up a email for Christian for those of you who have trouble posting on here you can email him and he will still get the messages. I do read them to him so he knows who all is thinking about it. christianshowers@yahoo.com

New Room - 5609

Yeah!!!! He is out of ICU as of tonight. His new room is 5609 and his number is 901-287-5609 if anyone would like to call us. Daddy and mommy get to get out for a bit tonight and grandma will sit with him.

These are just a couple of pics that were taken before his surgery and we thought we would share them!

Trach Surgery

He was put back on the vent today to help with resting since he has not slept in 48 hours or so and to get ready for the trach surgery tom. we are not sure what time it is all we know is they are doing it. We are scared about this for it will be alot of work and so on. They keep telling us it wont be as bad after its done but we are just nervous right now. That may be true but it still doesn't change the fact that he is getting one put in.
He is having fluid problems from the surgery the doc came in today and put another stitch to try and help that way and while is in surgery tom. he wants to go and add more if need be. If this does not settle down then he may end up with a shunt as well. So as you can see this has not been the best week for Christian or us. We are mentally, emotionally and physically exhausted.They say that if things go well he should be in a regular floor by monday of next week.

Johnny Sileno

Our new friends the Silenos had a bump in the road on Wednesday and decided to stay in town for observation with concerns about Johnnys head so please keep him and his family in your prayers.

Prayers Needed

He saw the ENT doc this afternoon he let us look into it as well so we could see what he was seeing. He strongly feels that he should get the trach on Friday, he said it could temporary. So we are asking for all the prayers that he will get better before then and not have to go through yet another surgery. Thanks!

They took him off the vent yesterday morning and he did ok all day and through out the night. He is suppose to see the ENT docs today to see if his cord is working or not. They keep bringing up trach so we are praying that it does not go that way.

link

Here is a link about Christians doctors and nurse (which we love) if you wanna take a look!

http://www.commercialappeal.com/mca/local/article/0,2845,MCA_25340_5509153,00.html

We got the pathology report back this evening and it is indeed scar tissue! They have started taking him off meds and lowering his O2 today to get ready for the vent coming out in the morning. Now we are praying that he will be able to handle that and that his vocal cord is working now. He did kick his left leg tonight when they tried putting his foot support on. So we know he can at least move that. I will try to update more as things happen.

Christian is doing better today his stats are staying at least above 90. They took him off on of the sedation meds to see if waking him up a bit will help. He is awake now watching some cartoons and when he sees something he likes he makes me look with him. He does look good today but they arent sure if he will get off the vent on monday it all depends on how he handles everything.
On the other hand we are missing Carter wishing we could give him hugs and kisses.
We also met another family from NY with the same tumor as Christian among talking they have alot in common his name is Johnny please keep him and his family in ur prayers while they are here.
Today is a better day for us seeing Christian awake and somewhat himself. He still isn moving his arm or leg so hopefully in time that will change as well. Thanks for all the prayers I believe they are working!

Update

This morning was not a good one Christians O2 levels kept dropping and they did not know why he sounded good, looked good, They gave him some medicine to help him pee so that if there was fluid it would help that to. They turned him up to 100 % and have started going down now he is at 50 on the O2.
It was very scary to be there and watch as the nurse looked worried. We are praying that things will start moving in the right direction.

Update

Christian is now on the breathing machine around 11am today he was having a hard time doing it on his own. We are not sure when they will try to take him off again they have given him high dose of steroids to help with the swelling so maybe that will help him out a little. We can not wait for him to recover from this and to hear what exactly it was. Thanks for all the prayers

Post-Surgery

Christian is now in the ICU recovering from surgery. The surgery went well and all of the tissue in question was removed. The reason I say tissue is because the Surgeon believes that what he removed was scar tissue possibly caused by a previous surgery or radiation. Hopefully Christian will be moved to a regular room by Wednesday, depending on how well he recovers in the ICU. The current concerns are his breathing and some mobility issues on his left side. Thank you to everyone for your continued prayers. We will continue to update the site as we learn more and get a chance on a computer.

Christians surgery

Christian is having surgery in the morning and after he recovers from that he will be having 6 weeks of radiation here at St Jude. So please everyone pray that this surgery and doctor will be good. Ill update when we get the chance to get on the internet again. Right now we are staying at a St jude house and dont have internet access all the time.

I finally caught one!!!! It was sooo much fun!

Fishing

Here is Christian and Heather waiting for the fish to bite! Nothing this day but maybe today.

Little update

First off I wanted to say that we made it to WV. And also we talked with Dr Merchant from St Judes and he wants to meet with us on Monday to go over Christians past radiation records to see if he is able to get another dose after a sugery to remove the tumor. We have not made up our minds as to where we will be getting this all done at. We want to hear what all the doctors say and then make our decision. Please keep Christian and the family in ur prayers while we travel down to Memphis and back.
I will update the site as we find out information or decide what we are going to do.

Awareness Product

I wanted to add this link my sister had a design made up for Christian.

http://www.cafepress.com/ihope/2835919

Bad News

We got the phone call today that we did not want to hear, The area they were concerned with is in fact a tumor. The doctor said we could just watch it, surgery or gamma knife. Im not sure as to what road we are taking just yet since we have just found out this new information. We are still waiting to hear from the doctor in Memphis and then maybe we will know which direction to take. The NS here thinks surgery it the way to go right now. But as I have said we are waiting before we decide which direction to take. We also have BT clinic next week so maybe they will give us more information.
Please say an extra prayer for our little guy.

MRI

Chrisitan had his mri on Monday his doctor seen an area that is concerning it could be 1 of 2 things ,1 the tumor is back 2 its effects from radiation. We now have to wait until they discuss his case in Tumor Board with in the next few weeks then hopefully we will know more or at least which way we are going. So we are asking for those prayers that this is just side effects from radiation and not tumor.
We will post when we find anything new out.

Here are my cuties all ready for easter!

MRI

I wanted to remind everyone that Christians MRI is for Monday the 2nd. This one is brain/spine. Please keep him in your thoughts and prayers. I will update with the results as soon as we know.

pics of eye surgery

Here is Christian before surgery, the day of and two days later with his jello face.

Eye Surgery

Christian finally had the eye surgery this morning. Everything went well she did a temporary stitch on the side by his nose and a permanent by his ear. We are hoping this will help clear up his cornea and have his eye better. Other then that he seems to be doing pretty good still a little sleepy, and enjoying the pile of suckers the doctor gave him. Hopefully the temp stitch can come out this summer.
Thanks for the prayers

Eye Surgery

Is scheduled for Tuesday the 20th. He got medical clearence from the ped today so now its up to the dr at the hospital on Tuesday. Hopefully this time around this will be done.

Eye Surgery

Is now cancelled. When he went in today for his medical clearance they found out he has a ear infection and had a temp of 100 so the doctor does not feel comfortable putting him out for the surgery. So now it is for the 20th. So lets hope he isnt sick!!!!

Eye Surgery

We finally have a date it is set for March 5th. So now we have to take him to the ped. for a medical clearance report and he is set to go. I only hope that this will be the trick to make his eye get better instead of getting worse. So please say an extra prayer for him.

Hearing test/eye appointments

Christian had a hearing test done yesterday to check his left side and as of right now it looks pretty good. They want to do another one in about 6 months.

As for the eye dr he say the ophthalmologist this morning and he is now wanting him to wear a patch for 3 hours everyday until he goes back in 3 months. So now we have to figure out how to keep it on him.
The Cornea dr wants to do the stitch surgery after all she feels that he eye is getting worse everytime we go in. So that will probally be happening in the next few weeks. This is so the contact will stay in longer and hopefully keep more moisture in.
As soon we we know more we will update everyone.

Sabres Game

Hi everyone Christian and the family went to the sabres game lastnight and had lots of fun. Christian played with the little kids and enjoyed the game. Here are a few pics of our night. They played the Oilers and won 2-1 in over time.

Update

Latest update is we still are no further with the nerve graft issues then we were a few weeks ago. We did talk to his surgeon but he wants to wait until after his next scan in April and discuss it then.
On another note Christian is out of school for a couple of days with a virus. So hopefully the meds will kick in and make him feel better. It will be good when winter is over and all the kids at school arent sick!