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.