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.

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.