Friday, July 10, 2009

"If you put your trust in him, you will not be disappointed" Romans 10:8-13 UPDATE FROM COURTNEY

Hello all! First of all I want to thank everyone for their continued support and prayers. Skip and I are so very thankful for the outpouring of support we continue to receive. We truly feel that God continues to bless us both through Carter, doctors, nurses, and the "army of angels" he has put together for us!! We apologize for the lack of thank you notes that have not been sent and wish we could send everyone something for all of the help. Please take this as a huge THANK YOU to everyone!!! Now onto our precious Carter-Man..............

Can I just say that Carter is a true hero!!! He is such a fighter and we are so very proud of him! He has been through more than any 5 year old should ever have to go through but throughout everything he continues to laugh and smile. He has especially loved the fact that he is actually able to move again. For a long time, he had absolutely NO movement of his right side (he is right handed) and limited movement of his left side but in the last week and a half he has been moving EVERYTHING!!! It is amazing to watch and we are so happy. He has been arm wrestling with Daddy, Mag (his favorite respiratory therapist), his nurses, and his Bubbie (my brother, Chad)!!! On Wednesday night (the night Bubbie stays here at the hospital with he and Daddy), they were having an arm wrestling competition in the room and our "angel" doctor, Dr. Futterman, came in the room to make sure all was okay because it was almost 11 o'clock at night and there was so much commotion (typically this means something is not going right for Carter). He was thrilled to see that Carter was having fun and that his staff was, too! There are so many good things going on and we are over the moon. Carter has come so far and we continue to see daily improvement. He is definitely much stronger, his eyes look wonderful, and slowly but surely his breathing is getting better. As most know, Carter has a trache. We have gone back to a regimen of having him on pressure support from the ventilator at night, hence why we are still in the PICU. He can breathe on his own but the ventilator provides extra pressure. It has been discovered that Carter's airway is "floppy" when the pressure support is taken off. There are a multitude of reasons that this can happen and it should strengthen again on its own. He did wonderful yesterday and we were almost tempted to leave the vent off last night but Dad and the Doctor decided to put it on. As we speak, we are waiting on the respiratory therapist to come and take it off. Oh, they just arrived...YAY! Anyhow, Carter's physical therapy sessions are going wonderfully and according to his therapist, Lora (who we LOVE), it will be no time before he is ready to stand again:) He was so happy when she told him this. Personally, I cannot wait to hear my baby's voice again. When one has a trache, in order for them to talk, they must have on a speaking valve. Carter did great the first time we tried it but there have been so many issues since then that we have not been able to try again....I pray every night that God will touch the hands of these doctors and allow Skip and I to hear that sweet, sweet voice of our Carter-Man's. Boy do we miss it! But we will get there...we have FAITH and that is enough to carry us through! Now onto the MRI results.......

Let me start by explaining some things as best as I can (I am by no means a doctor so pardon my use of terminology). Carter started a new treatment on June 8, 2009. That included Avastin, Irinotecan, and Temodar on Day 1. Day 2-5 he received only the Temodar. Day 15, he received Avastin and Irinotecan. This was the end of one cycle. Typically, an MRI is not done until after 2 full cycles. Because of some issues, Carter's team decided to do one before the start of the second cycle. The MRI was originally scheduled for Monday, July 6th and then was moved to the previous Thursday and then moved back to Monday, July 6th. We were told after the MRI that we would not received the results until the following day, July 7th. This is a very special day to my family. It is my dad's birthday (as most of you know he passed away when I was 10). I truly believe that he wanted to celebrate his birthday in heaven with the good results and allow us to celebrate his birthday here on earth with good news. My family was, once again, blessed on July 7th. I have always told my children that he is our angel and I truly believe that. Now onto the results....Carter's doctor, Dr. Horn, was very pleased with the results of this MRI. Basically, in order for the radiologist and doctors to consider "shrinkage" it has to be 25% or more. Carter's was not quite there but had gotten smaller. There was less enhancement. When Dr. Horn showed me the MRI, she showed me the difference in the current scan and the previous one. She showed me on the current one where part of the tumor appeared less dense. meaning it is DEAD!!!!!! Those words were music to my ears:) The MRI of the spine appeared to have less enhancement as well. Basically to the doctors, radiologist, etc, Carter's tumor is stable. To me, 25% or not, it is moving in the right direction. And this is all after only one cycle!!! We (I say we because Carter is receiving the treatment but Daddy and I are feeling the emotional side of it as we watch poison enter our son's body to try and control the monster within)started the 2nd cycle on Wednesday. He received Avastin, Irinotecan, and Temodar. He will continue to receive Temodar until Sunday. Then he gets a break until July 22nd and then he only receives the Avastin and Irinotecan. That will complete 2 full cycles. Unless we see a need, another MRI will not be done until after cycle 3. We anticipate that Carter will be in the hospital for at least another month. We want to make sure that when we go home, he is ready. We also need to make sure his blood counts do not drop terribly low. On a good note, I received his counts this morning and even after all the treatment he has received this week, HIS COUNTS ARE HIGHER! Divine Intervention, I do believe!!!! We also need to resolve the respiratory issues and allow him to continue to get stronger so that he can feel comfortable in his wheelchair. And he is definitely getting there. Also, per a request from one of our favorite nurses mother's, we will be putting pictures up very soon!!! Please continue to lift Carter up in prayer, as I truly believe our prayers are being heard and answered.

I want to end with this that I read in the book "Become a Better You", by Joel Osteen.

"Remember, we are called overcomers. That means we're going to have obstacles to overcome. You can't have great victories without having difficult battles. You'll never have a great testimony without
going through a few tests. The enemy always fights the hardest when he knows God has something great in store for you".