A Thanksgiving to Remember

Hello Carter's Crusaders! I hope that you all had a wonderful Thanksgiving with your beloved families. Thanksgiving was very different this year for us, as you can imagine. The day before and the day of were very bittersweet for Skip and I. The day before Thanksgiving, my mom had planned on setting the tables (we had 20 people so we wanted to be prepared). This is an event that Carter-Man always looks forward to. He LOVES setting the table with his Grandma Cecee. Whenever we ate at her house, he knew exactly where the good utensils and dishes were and he would run as if there were a fire to begin helping her set the table. This year there was no running. I watched as Mom and Caroline set the 2nd table (this is the 2nd year Caroline has enjoyed helping)on Thanksgiving Day and my heart sank. This is not the picture I wanted to see. I wanted my Carter-Man to set the table with his Grandma and his younger sister...I wanted him to pop out of the bed, help set the table, and stick his finger in one of the foods that was being prepared! Then I looked and there he was, laying in his bed, finally comfortable after a night of a very high fever and labored breathing. Again, my heart broke. This whole journey has been one of heart break...heart break for my son, who loved his life so much...heart break for my daughter, who has so missed playing with her brother...heart break for Tommy, who is a teenager having to experience all of this.....heart break for my husband, who misses his buddy, his best friend..heart break for my parents, who have to watch their grandson suffer.....heartbreak for my in-laws, who have 2 very ill grandchildren....heartbreak for all of the people who love him so much....and heartbreak for myself- I miss my baby, I miss his laughter, I miss his contagious smile, I miss him crawling in the bed with me in the middle of the night, I miss everything about him....I know he is here with me and for that I am thankful but I hate that he has to suffer. I hate that the life he loved has been ripped from him. He deserves better, as do all of the children suffering from DIPG. He deserves to run and play like a 6 year old! Even through the hurt and the anger, I am thankful, thankful that he is here with us, thankful that we could have our entire family here. I am thankful for the love and support we continue to receive from our friends, family, and community. I am thankful for Tommy and Caroline. I am thankful for a family that is simply amazing (I love you ALL more than you know)!!

As for Carter's condition, he seems to remain relatively stable. He runs a fever on and off and at times his breathing is labored. He still opens his eyes sometimes and even responds with them some of the time. His heart rate stays low most of the time except for when he has a fever. When we left the hospital, he was on a high dose of steroids. We are slowly weening them, as his doctor, as well as Skip and I, do not see the need to keep them on board. Once the steroids are weened, he will only be on an antibiotic (to prevent a staph infection), morphine, and ativan. We continue to feed him through the G-tube, although at a much slower rate than he used to be on. When the hospice nurse came last week, she was amazed. She said that she is so surprised that Carter is still with us. He is truly a fighter. She said that he is truly in God's hands now. We have known this through this entire battle. She said that every week she expects a decline and she is not seeing that. Could this be a miracle in the works? That is what I pray for...please join me in prayer for this miracle!

I want to send a big thank you to my sister, Kathryn, for an awesome Thanksgiving dinner! It was AMAZING!!!! She flew in from San Diego when we received the news of Carter's tumor progression. She made the entire dinner for all of us. Now she has flown back and we miss her already:( I also want to thank everyone for their continued love, support, and prayers!!!! We are so thankful for all of you!!!

I wanted to let everyone know that there is a new feature on Carter's blog. After many requests, you can now leave comments on the blog. At the end of each post, there is a place to leave comments. All you have to do is click on comments and a pop up will appear and you can drop us a line. We would love to hear from everyone that follows Carter's journey!


Another DIPG warrior is having a hard time and has been brought home on hospice. Please pray for this family and drop them a note on their guestbook. Her website is below!

http://www.caringbridge.org/visit/delaneystarcher

With Love,

Courtney