Saturday, September 5, 2009

MRI results and More.......

I apologize for the delay in the posting of the MRI results of Carter's latest scans. We are so very pleased with the results....the tumor is at minimum stable:) YAAAHHHHOOOOOOO!!!! We are waiting to have Dr. Horn, Dr. Packer, and Dr. Warren (someone new to our team from NIH) take a look at them, as well. The radiologist did note that in the center of the tumor there is "cavitation". The thought on this is that the chemotherapy and the Avastin are attacking the blood supply and the abnormal cells in the center. Our hope is that this is the case and that it is killing the abnormal cells from the inside out. As soon as I get reads from the other doctors, I will let everyone know. As for Carter-Man.....

He has good days and not so good days. Somedays he seems much stronger to me and others he does not. I am sure this has to do with the fatigue that can come from so many things- the tumor itself, the medications he is on, and the chemotherapy. He had a wonderful physical therapy session on Wednesday- the best yet:) Last night we had our first outing other than doctor's appointments or ER vistis. We went to Grandma Cecee and Gagee's! It was so very nice to start to feel somewhat normal again. I must admit, I did miss the fact that he was not running around their house like crazy and rummaging through the drawers but nonetheless he was there and it made for a great family night. He fell asleep in his chair and slept a good portion of the time. His sleeping schedule is still somewhat off although it is improving. Right now he is getting ready to sit in the floor with Skip and play the Wii. He needs help doing so but he still tries!! We are currently getting him to sit in the floor to help with the strength in his back. Since we have been home, his back has gotten much stronger. We attribute this to being out of the bed and sitting in his chair. We are currently waiting on a "stander". This will assist him with standing again. It is a device I had never even heard of it until now. It seems as though it will definitely help him. We will actually put him in it and strap him. There is a platform at the bottom for his feet to stand on and there are various straps starting at the chest and going down. As he gets stronger from the top down, we will start undoing the straps. I am hoping to see awesome results with this:) Carter is not scheduled for any appointments until the 15th. We go to see his pulmonologist that day to see how is lungs are and how is airway is. My hope is that his lungs and airway are great and that we can possibly talk about removal of the trache. He absolutely does not like having it there!! There are some requirements he must meet before they will consider doing this and I feel that he is very close to meeting those. As most of you know, we do have a vent at home. We only use it for CPAP (continuous positive airway pressure) and only at night. He does not need it every night and quite frankly he does not like using it. He is on the lowest possible setting and still feels as if it is too much pressure. Even if they are able to take the trache out, there is a machine called a CPAP machine that we could use at night as needed. As far as Carter's GI issues, they seem to be getting MUCH better as we have taken him off of 2 of his medications and he is doing fine. He has handled his treatment much better this go round. He seems to have more energy! I hope that this continues:) Overall, Carter is doing good. We are very thankful for all of the blessings and the continued improvement that we see. This past week his school had their Back-to-School night. That was a very difficult night for Skip and I. Carter LOVES school and he LOVES to learn. I know that he is sad that he cannot go back quite yet. We also found out that his best friend, Kaelan (she is like a sister to him- her mom, Becca, and I have been friends for 20+ years)is in his class- very heartbreaking for all of us. I hope that this will give Carter all the more reason to try and get stronger so he can go back and be with Kaelan. We have contacted a program called "There's a Monkey in my Chair". It is a wonderful program where they send you a kit with a monkey and other accessories. The monkey will actually sit in Carter's chair while he is not there. These kits are free of charge. They do take donations. If you would be interested in donating to a wonderful cause to help these children, their website is!! We are going to have Kaelan take the monkey with her and hopefully to all of their specials so that she feels like he is there with her!!! We have also contacted Hopecam. They actually set up a camera in the classroom and we receive a laptop at home. He is able to watch some lessons from home and his classmates can talk to him and vice versa! I think that this will really help boost his spirit back up. This, too, is a wonderful program. If you would like to read more about it their website is I hope that he continues to improve and can go back after the holidays. We ask for specific prayer in this area:)

Thank you to everyone for the cards, the phone calls, the positive thoughts and the prayers! We could not do this alone. We are so blessed to live in the community that we do. YOU ALL ARE AMAZING:) God has definitely put together "an army of angels" for us and for that we are thankful! Please continue to pray for Carter as well as all of the other children that are battling. These children are amazing and they need all of the prayers that they can get, as do their families!

With Much Love,