eye update

Christian went back to the eye dr today and even though his contact fell out again she did say his eye is starting to look better so I guess that means the contact is doing what its suppose to do. She did put in another this morning but this afternoon it fell out to so I had to replace it again and hopefully this one will stay in for the next two weeks until he goes back.

On the other hand he did have a very nice xmas. He was excited over the toys and electronics so much that when he got to the clothes he said o clothes and threw them out of his way.
It was just nice to see him so excited this year, he put cookies out for Santa and was surprised to see that he came and ate them :)

Again his next MRI is Jan. 15th that is if he doesnt have a cold, if he does then they will not be doing it. So hopefully that will not be the case because right now its the only thing that is making this process a little easier.
Thanks for all the prayers

We wanted to wish everyone a Merry Christmas and Happy New Year!

little update

Christian just made it back from the eye dr this time it was for pink eye so we thought but turns out he does not have that. But how ever she did put a contact lense in to try to help out with the moisture issues. So hopefully it will stay in place and do what it is suppose to.
He has a bit of a cold right now gotta love pre school.
He is getting excited over christmas coming soon he really wants a choo choo and he even told Santa that is what he wants.
He goes back next week for a checkup so I will update then.

Sabres Game

Here are a couple of pictures of Christian at the Sabres game on Friday the 1st. He had a blast that night and is still talking about the hockey and the ice. And by the way the won the game that night.

Eye Dr

Christian went to the eye dr today and she says his eye is looking better the white film that was on it looks better the before. She wants to see him again in a month to check it and his vision. Today his vision was 20/60 in the right eye and that was all he would be good for. He is on lots of eye drops to help with moisture. The plug is still in the top so thats good and his lower duct is healing well.

On another note he along with the rest of us has been sick all week so hopefully everyone will get better sooner then later.

His next MRI is scheduled for Jan. 15th so hopefully we will be able to enjoy he holidays. Thanks for all your prayers!

Can you also keep a little guy name Dakota and his mom in your prayers things for him arent going so good and its only a matter of time now. Thanks everyone

Christian and Carter.
We did not get any of these pictures for we werent there for that reason but I wanted to share with everyone how cute the little men are!
Carter will be turning one Friday the 17th and all Christian is say he wants more cake!

please do not save pictures from the site!!!

Post op eye appt.

Christian went in today for his follow up after surgery and she said it is healing well. She did give another eye drop to help during the winter months. But all is good for now.

Eye Surgery

Christian had his eye surgery today and all went well. The dr burned his lower tear duct to help with moisture she did not do the stitches because she noticed that his eye is a littler better today then the last time she saw him so that is good news. He was pretty good all morning and was treated like a king. As usual all the nurses loved him. He has a follow up appt. in one week so hopefully all will still be good. Thanks for the prayers

Halloween pics

Here they are mr buzlight year and blues clues arent they just the cutiest boys!

Eye Appt.

Christian's eye procedure will be Wed. Nov. 1st it was resheduled due to the weather we had last week. This was hard decision for us to make because he has been through so much already and we hate putting him through even more so hopefully in the long run we will have made the right choice. Please keep him in your prayers that everything will go alright. Thanks

MRI Results

We just got the MRI results and it was clear!!!!!!!!!!!!!!!!! Thank god for that. We can now breath a little bit.

BEFORE/AFTER:

MRI/School

Christian has another MRI on Tuesday the 10th I believe this one is brain and spine. Please keep him in your prayers and that the MRI is a clear one.
He is doing good right now he has been in school for a little over a week and seems to be liking it, but riding the bus is a different story he doesnt want to get on it still.
Whenever we get the results I will update it could take up to a week to get them. Please keep us in your prayers as well with everything coming up this week im a little bit of a wreck. Thanks update more later

B-Day Party

We want to thank everyone that came and for the gifts. He had a great time playing with all the kids. Its was good seeing him have fun this year it sure was a big change from last year.
We would also like to thank his nan and pap for all the hard work they did to get ready for his party.

School

Christian is now a school boy! His first day was a good one he played and had a good time. Today was good but he did get a little sad once. He rode the bus for the first time today and was excited about getting on it, I on the other hand was sad. Its still a hard to believe he is old enough for school. He said he did make a couple friends already so that was good to hear.

School Time

So Christian will finally be going to school!!!! His first day will be on Thursday the 26th. We did take the tour and they are ready for him he has his own locker and a bear on the wall with his name. I will try and get some pictures to share with everyone when the big day happens. Please pray that he will be alright and that I will be alright also :)

CMN

Hi everyone I thought I would add this picture. Christian was the Childrens Miracle Child this year on the balloons sold at TOP's this past summer and we went to a press conference the other day so they could announce that they are promising to raise 1million dollars over the next 4 years for the hospital and this was a picture of one of many checks to come. Please check out the link for the whole story! And please check out the other one.


http://www.wchob.org/news/news_display.asp?artID=582


Local Celebrities Pair with Children’s Miracle Network

Eye Appt./School

Yesterday Christian went to the eye dr. He said good and bad things he was pleased that his eye is moving now but is still worried about the 7th nerve which is the one that makes his eye close and his face move. So now we have to hope and pray that the nerve will come back like the 6th one did.

We also had a meeting with the nurse at school and as soon as the dr feels out there part of the paper work saying what Christian needs done while at school is turned back in he will be able so start so hopefully within the next few weeks he will be headed off. The school is nice and big he ejoyed going and looking around at all he stuff they had there. He wanted to stay and play. As soon as we know more on both of these we will update you again.

Make a Wish

These are a few pictures of Christian on his Make a Wish gift. As you can see he loves to play on it. Thank you MAW

Walmart

Christian is now the CMN child for walmart in lockport. (Childrens Miracle Network) for the hospital. We would like to thank them for the presents they gave to both boys Christian has played with the blocks everyday since. It was nice to meet each and everyone of you. Thanks again. I forgot to take the camera so next time we go I will try and remember it.

School Time

Our baby is going off to school. They had his CPSE (committee on Preschool Special eduacation)
meeting yesterday and decided he is eligible for school for full time thats right full not part :( . So in September not sure as of when yet still have to get the rest of the details, he will heading out the door. I feel that it will be easier for him then me :)
He will continue to get all of his therapies at the school (so he will actually be getting the speech and ot now) so this is good news. When we find out more info we will be sure to let you all know.

Eye Appt.

Christian saw the cornea dr today and she said his eye is looking better however there are still a little irratation to the eye but she wants to wait and see him in 6 weeks so at least thats a step for slowing things down a little. She wants him to see his other eye dr for better visions checks and he will go there in Sept. so wait and see what he says.

We made it back from WV yesterday it was a nice trip but a long drive back. Christian had a good time and thats all that matters. He went fishing while we were there and caught the only fish so he was excited about that one. And he loved watching the Choo Choo trains, dont know what he will do now we are home and there isnt any to look at.

more pics

Just a few pics of Duke University and one of Christian and his pap that whole reason we were there




dont know what happened to this one but its all I had with these two.

pics

Few pics from our trip to NC

Christian on his John Deere (watch out everyone)

little update

Christian is now on vacation and so far he has had a good time. Running after nan and pap and the doggie. He has been running around here like a mad man and enjoying all the extra attention.

Eye Dr

Christian went to the eye dr and she put in another plug this time it was in the top eye lid to try and help with keeping moisture in his eye we are still putting drops in so hopefully that will also help.

Christian and the rest of the family are getting ready to go on vacation so we will update when we get home or unless something happens.

Little update

Christian got to play in a putting contest with a celeberty on Sunday the 16th he was running around having a good time. He got to do this because he is one of the Miracle Makers Children and was on the Tops Balloons. Then on Monday we went to a dinner for the same thing and they gave him (and another little one) a medal. So he has been wearing that for the past few days he just loves it.
I will add a picture when I get the chance

He goes back to the eye dr tom. so we will see what she says this time around.

Update

Christian had his MRI and its looks good they said there is a few places that they want to compare with from right after surgery but there was no tumor. What they saw was from the surgery so, so far everything is good.

He also had a swallow study on Wednesday and that did not go as we were hoping. Instead of the food going all the way down it goes so far and then right back up so he is not allowed to eat right now and needs to see a ENT dr. so hopefully that will happen sooner then later so we can get him back to eating.

Thank you everyone for you prayers

Some Updates

Christian will have his 3 month MRI checkup on July 11th so everyone please pray that things will be great. This is his first after his surgery and radiation so the Dr. did say it will be alittle different because he is still healing from those. He will go to brain tumor clinic on the 12th and meet with the dr's this is also a 3 month thing.

He goes to the cornea dr on Wed. the 5th so hopefully things will still be looking good there.

He is doing pretty good lately other then a cold his speech is getting better every day and he is now using the potty like a big boy so who knows maybe be the end of summer he will be outta diapers!!!!!

Happy 4th Everyone

Photo Opp.

These are just a couple of pics that I like of Christian. These are his post-treatment pics and just look at all that hair!

Bye Bye Broviac

Christian is now wireless. He had his broviac removed on Thursday. He still has his G-Tube and will have it until he can eat better. We are excited about the broviac being out because now he can take a bath or swim and doesnt have to worry about infections being in there.
He is doing really well now. His speech is getting better everyday as well as his walking. He is acting like a happy little two year old and that also means he is getting into everything but thats OK.

Radiation

Christian is now finished with Radiation. YEA!!!!!!!!!!!!!!!!!!!!!!!!

Thank you to everyone at Roswell who helped to take care of Christian and made the process tolerable if not enjoyable.

This is the machine Christian had for treatments.
He would normally be laying down with his mask on.

Back In

Well you guessed it Christian is in once more for a infection. We do not know how long he will be in this time but hopefully he will get his line out this week and we wont have to worry about this problem any longer.

Home Again

Christian is home again they let him out Friday afternoon. He was sent home on a antibotic. Either next week or the week after he will be getting his main line out it has a few little bugs in there and his Dr wants it out sooner then later. We can not wait for that to happen.

Cornea Specialist

Well Christian saw a cornea specialist yesterday regarding some of the issues with his right eye. It has been made quite clear to us that the condition of his eye is at a very critical point and that we must take great care to insure that he will not need a cornea transplant. We are sure this is only the beginning of the ongoing care that is going to be needed to get his eye back to normal again.

Back In

Well he is in once again. The doctor called us at 2:00 this morning and said to bring him in that he had an infection in the broviac once more. So he will be in here till they get a negative culture so hopefully that will happen sooner then later so we can get outta here.

Little update

Christian is doing good. He has been spending this past week with his little brother he finally came back home. So this week has been extra crazy with Christian's therapies and dr appt. and getting to know Carter all over again. But at the same time it has been nice Christian has helped out with him and likes to hug and kiss him.

We are now down to 7 treatments so we are praying that this next week and half is going to go great.

Update

Christian went to the eye doctor today and he did say that it was looking a little better but he wants him to see a specialist to see if they want to do something different since the cornea isn't he specialty. So now we have to wait till next week to see them.

He also is down to 9 days of radiation so lets hope that everything will go as smoothly as it has so far.

He has also been walking. He started that over the weekend and has been doing better everyday. And his speech is getting better we are also working on swallowing and hopefully we can get him in for a swallow study so we will be able to tell if he is doing ok with it.

Miracle Makers

For all of you that live in the Buffalo area be sure to stop in at Tops Market and purchase a miracle makers balloon for Childrens Hospital Christians picture is on the balloon this year. Thanks in advance for helping out the hospital.

Little update

Christian has now made it half way through radiation and so far so good. He will go to the eye doctor on Wed. so hopefully we will get good news on his eye. He is still in therapy and is getting better everyday.

Home Again

Christian is home again. They sent him home on antibotics. He is doing well and is excited to be back home.

Back In

Christian is back in the hospital. He was admitted on Saturday with an infection in his main line. They have started him on antibotics so hopefully with in the next few days he will get to go home. He did have a positive culture again today so we arent sure if that will add on his stay time or not. We are hoping not but we will see. He is in good spirits considering where he is. He is still able to get his radiation thank god we did not want to put that off. We will update more when we find out something.

updating

Christian has made it through two weeks of radiation now and so far so good. He is in a good mood when we get there but when we leave he is not. But that is understandable at this point.

He has been walking more with our help so hopefully soon he will be doing it alone.

He goes monday to the eye dr so we will see what he has to say this time around.

Have good weekend!

Update

Christian has made it through his first week of radiation. He now is having bad tantrums and everyone is telling us it could be a number of things. All I know is I cant wait for this to be over its so hard on him but we are wore out ourselves.
His next MRI is scheduled to be in July so please keep the prayers that it will be a clear one.

This is the latest picture of Christian with Carter.

Christian is doing ok so far. Right now he has a ear infection which means we made our weekly trip to the hospital. Today was his 3rd day of radiation so only 31 more to go.

Radiation

Christian started his radiation on May 4th and so far he is doing ok with it. The first day he was a little cranky when he was waking up but Friday he did better he was nice and calm when I went to see him.
He also got to visit with his baby brother for a the day but he seems be happier to have us to hisself again.

Little update

Hi everyone sorry we havent updated in awhile but been a little busy. Christian was taken to the hospital on the 23rd for a fever and only had to stay till monday evening. He only had the one fever at home but his Dr. wanted to be safe with everything being so close out of surgery.

He will start his radiation on May 3rd I believe so hopefully we can get through these next 6 to 7 weeks and then let him have a normal summer.
He is starting PT again this week and hopefully OT and speech will be soon. He is crawling at this point and is saying a few words so this is at least headed in the right direction.

This is the quilt that a group called love quilts made for Christian and he took it to memphis with him and we would like to thank all the people that was involved in making this it is beautiful.

And one of him and his lil bro Carter

We will update when more later.

God Bless You Everyone

Home Again

Christian has been released once again. We brought him home Saturday morning and he seems to be happy we did. He was trying to crawl through the house and has been playing ever since. His mood seems to be better except when he has to be tied down for some meds.

He has a hearing test today. Appointment at Roswell Tuesday for his markings for the radiation, and Wednesday he will see and eye doc in the morning and BT Clinic in the afternoon (brain tumor) so for the next few days we will be busy. Hopefully within the next few weeks we will be able to get him started on the radiation.

We will update more later on.

Back In

Christian is back in the hospital. We brought him in on Monday night a little after getting home with a fever. Today they have told us we will be at least 4 more days. Hopefully they will get the infection gone sooner then later so we can get back home to relax for a while. We will update as soon as we know more.

Update

Christian was released from the hospital on Wednesday April 5th. We stayed in Memphis for a couple extra days to take him to the zoo and a museum. He had as much fun as you would expect right now but it was nice just getting out to have some fun with him. We met a really nice family while we were down there so that helped with being away from the families.

We stayed at Nora's Home while we were down there and thank god for them. The staff was nice and it was nice being a short distance from the hospital. We would like to thank them for letting us stay there while Christian was in the hospital.

As of right now Christian is doing well. He is getting back to himself little by little. He has said about 4 words right now. Hopefully once we get home he will get back into things again.

He goes to Roswell next week so we should find out when the Radiation starts ( I think)
He does have facial problems on his right side right but Dr Sandford has said that there is a 70 to 80% chance of it going back to normal it will just take a little bit of time.

We will update more once we get back home.

Thanks for all your thoughts and prayers

Out of ICU

Christian has been moved from the ICU back to the 5th floor. We will be seeing if he can walk soon. He seems to be glad to be out of the ICU. It is much more quiet up here and it also allows us to stay with him all day. It would seem that we are out of the woods as far as a trach is concerned but I don't think that we have let our hopes get up yet.

Recovery Update

Christian's recovery is slow but steady. Christian was extubated back on Friday but they had to reintubate that same day as he was unable to deal with his secretions because of his inability to swallow. Christian was extubated again today (3/27) and so far has been handling it well. I'm sure that they will want to monitor him for quite a while this time to make sure that he will be OK. If not he will most likely get a trach put in on Wednesday. This would be temporary until he could regain his ability to swallow.
Since he has no tube in his mouth now, we are able to hold him outside of his bed. I think that this is helping to boost his spirits. I'm sure when we make it out of the ICU and into a room that will really improve his mood.
With any luck we will be able to update his site a little more frequently. Keep checking back as I'm sure we will have more to post later.

Surgery was a success!!!

Yesterdays MRI showed that Dr. Sanford successfully removed all of the tumor. Christian is still in the ICU and we are waiting for the ENT group to remove his ventilation tube and evaluate whether or not he will need a trach tube going forward. Thank you to everyone for your prayers. Christian seems to be doing well and hopefully we can continue to update you with good news. The best way to reach us, while we are without an individual room here at the hospital, would be to leave a message at our room @ Nora's home (901-271-5603) or Amy's cell phone (716-310-6609).

We are here

Hi everyone we finally made it to the hospital today and was able to get an internet connection. Our travel down went pretty well. Christian watched movies or slept. The phone number for the room we are in now is 901-572-5614. His surgery time is scheduled for 7:30 am tomorrow (3/22). And after that he will go to ICU for awhile. We will try to update the site afterwards, if not tom. then on Thursday. I have a feeling we are going to get lost often while we are here. Its like a maze to get through. So far it seems like a nice hospital to be in. We met with Dr. Sanford yesterday, so that makes us feel a little more comfortable with him doing the surgery. Please continue to pray for him.

updating

Just wanted to let everyone know that we might try to update before the surgery to let you know how the trip went. Then we will try to do so again after his surgery at some point. Thanks for all your prayers.

Surgery Date

Christians surgery date will be March 22nd. We will be leaving home on Friday the 17th we are going to drive so that Christian can see his great grandma before he has this surgery. Everyone please keep him in your prayers and us while we travel.

"...boy you've got a prayer in Memphis"

Well, our options were finally presented to us. Our choices bring us to Memphis, TN. A neurosurgeon by the name of Dr. Robert Sanford, affiliated with both St. Judes and Le Bonheur Children's Medical Center, has graciously offered to perform the final resection surgery. He has more experience with this type of brain tumor and surgery. It is also our gut feeling that this is the way to go. Please pray for our journey, the surgeon, and Christian. This will be a tough road ahead.

PS: Quote from Mark Cohn's tune "Walking in Memphis". A good song.

Update

Christian's counts are looking good right now his Hemo. is 9.4 white is 3.5 plat. is 218 and Anc is 2730. We also found out that the results from his spinal tap were negative. We are still waiting to hear what the next step will be as the doctors are waiting to hear from the neurosurgeon at St. Judes and the Radiation Oncologist in Boston. Hopefully we will find that information out some time next week.

Dont have much to say but I like this picture of him so just thought I would share with everyone else. Wednesday he has a spinal tap and hopefully we will find out what direction we are going next. So if and when we find out we will be sure to let everyone know.

Christian's Benefit

What a great event! What a great turnout! Thank you to everyone involved. It was great to see so many friends, new and old. Hopefully a good time was had by all.

Count update

Christian had his MRI yesterday but we wont find anything out until next week when another Dr gets back in. They did draw his blood while we were there and his counts are up a little for those of you that know what im talking about his Hemoglobin is 8.5 White is 3.3 Platelets are 108 and his ANC is 2145 so as you can see they came up a little which is good news. We will update when we find out what is going to happen next. Have a good weekend everyone.

Bath

Christian had is first real bath lastnight in 4 months..he started taking off his clothes and was trying to jump in....so we wrapped him in clingwrap and that was a little tricky we had to be careful not to pull out his Gtube but make sure it was tight acrossed his brovaic..When all that was said and done he got in and had a wonderful time playing with his toys and just sitting in the water. Of course I was nervous trying to make sure he didnt get anything wet and of course he did because how do you tell a 2 year old not to splash in the tub. But thankfully the clingwrap did the trick and kept him nice and dry.

Little update

Today Christian had his blood transfussion and it only took 7 and half hours to get out. They were a little slow getting started. Thankfully he did not spike a fever so he did get to come home. He is now running around having a fit because he wants to eat cookies and he cant have those yet. We take him to feeding clinic tomorrow and to have a hearing test so we will see what they say at the feeding clinic. Hopefully we can start giving him regular foods.

This is a picture of Christian and his little brother Carter on a day he actually liked to have him sit beside him.

BT Clinic/Back to the Hospital

Well Christian has been to his first Brian Tumor Clinic. It was an excellent opportunity to ask his doctors lots of questions. We saw his oncologist, neurosurgeon, and neurologist. Everything that we found out just made us realize that we're really not going to know what happens next until after his MRI on the 23rd. While at the clinic, Christian had his blood drawn. After getting home we got the call that his counts are low and that we'll need to go back into the hospital for a blood transfusion. Lets just all pray that it will go well and will be a short trip.

Christian is doing well these days he has been in the greatest of moods. In the past two days he has started walking alone to the point he is almost running. It is nice to see him get his confidence back. On Feb. 10th Christians story will be on kiss 98.5 at 10:30 am.

He goes in today for his follow up chemotherapy. He had a GI appointment today and that went ok. The Dr. said unless things got worse to stay with what we are doing.

We have realized we forgotten to mention our newest addition to the family Carter Matthew. He was born on Nov. 17th 2005. Christian is enjoying his little brother he likes to feed and help change him. Its nice to see how Christian loves Carter when he hugs and kisses him.

"Round 4"

Well the fourth round of chemo went off without a hitch. Christian was actually in a pretty good mood today. We also had the opportunity to sit down with his neurosurgeon (Dr. Li) and review his most recent MRI. What we found out, and haven't been aware of up till now, was that the tumor actually raps around his brain stem which is what would make a total resection very difficult. There is still the hope that this fourth round of chemotherapy will shrink the tumor enough to make surgery possible. We have also asked our lead oncologist (Dr. Fitzpatrick) to present our case to the oncology group in Boston and a neurosurgeon at Johns Hopkins to see if there are other options. Christians next MRI is on the 23rd of February to evaluate if the fourth round of chemo was effective or not. We will update the site as we find out more information.

Benefit

Some people have been asking if there is going to be a benefit for Christian at some point so I will pass on the information that I have so far...
As of right now, there will be a benefit for Christian on February 25th at 6:00PM at the Sweeney Hose Company, Inc. No. 7 which is located at 499 Zimmerman St. in North Tonawanda, NY 14120. Currently the plan is a spaghetti dinner with a chinese auction.
I am going to put a link on the side of this blog so that if anything changes or if there are any other benefits, you can find that information out there.
Any and all support is always appreciated.

Update on counts

We received the results from Christians blood work today. His white count is 18.5 his hemoglobin is 10, platelets are 77 and ANC is 8880 so it has went up quite a bit and we are very pleased with this.As a result he is now off of two medicines.

MRI Results

Well the results are in and they are less than desirable. It would appear that the 3rd round of chemotherapy had little to no affect on the tumor. As a result, Christian will be starting his 4th round of chemo on Feb. 3rd. This will be his last round of chemo one way or another. If it works, great - schedule a second surgery, otherwise the plan will be to start radiation therapy.

A little disheartening for sure, but we will soldier on. Christian is home for now so his spirits are improving. We will continue to monitor his blood counts while continuing to find ways to lift his spirits even further.

home again

Christian is now home again he got out yesterday around 2:30. His counts are still low but his white count was 1.1 when we left so at least it went up a little. They sent him home on antibotics to help with that.And his ANC was still at zero so until it gets back up to 500 he will be on the antibotic.

Today he went for his MRI to see if the third round did the trick or not we should find out the results on Wednesday.When we do we will be sure to update the news.

back in the hospital (cont.)

Christian is no longer running fevers but his blood work is back and showing that his white blood cell count is running low and his neutraphil count is also low. As a result it appears that Christian will be in the hospital until those counts come back up. For the experts, WBC is 0.6 and ANC is 0.0. Christian is also battling C-Diff which is a GI issue caused by antibiotics.

He was still running fevers throughout the night and this morning so far. Right now we dont know anything else but when we do I will update.

back in the hospital

Hi everyone just to let you know Christian is back in the hospital we went in for a blood transfusion and platelets and he ended up getting a fever of 101.5 they arent sure yet if its from the transfusion or something else, so he will be in there for at least 48 hours and hopfully we will know more by Saturday. Ill update when we find out something.

MRI update

We found out lastnight that Christian will be getting another MRI on Jan.24th to see if the third round worked enough for Dr Li to do his second surgery or if he will need another round. They have also started to reduce his steriods he gets it twice a day now instead of three times. He was on those to help with the swelling.

Thank you everyone for you prayers and support through this it means alot to us.

Christian is currently receiving speech and swallow therapy, physical therapy and music therapy at home. He is happy to be home but is battling low blood counts. We are currently waiting to find out where we go from here.

Christian was diagnosed with an anaplastic ependymoma (malignant brain tumor) back in October of 2005. Christian had just turned two when it all began. Even though our world was flipped upside down, we've somehow come to grips with it all and are making it through the day to day things. Please read his profile for the complete story.










Before we found out.