Saturday, November 28, 2009

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

16 comments:

Dawn Long said...

Courtney, Skip, Tommy, Caroline, Carter-man and the entire Harris Family,
We enter this holiday season as a group of family and friends carrying a heavy heart over Carters illness but we too look at the wonderful things God has given us...the opportunity to watch a beautiful young child play out back on the swing set one who made us smile everytime he yelled "Oatmeal come over here" and would climb the top of the fence just to say "hi" to us. Carter, Caroline and Tommy brought Mike and I alot of joy when you lived next door. You and Skip were always taking the time to ask us "how are you guys doing" and the invites to your home for Birthday celebrations etc. were wonderful and heart felt. We miss you guys all very dearly and we too carry a heavy heart for Carter's prognosis. We have all seen miracles that God has performed and Carters warmth and love is already one of them. We are here at anytime for anything. God Bless you and your family. We are praying for the miracle of Carters life everyday. We love you all. Dawn & Mike Long

Crystal Via said...

Hi Courtney,

I check this everyday to look for new update on Carter-Man. As well as FB - I dont know how you guys are doing it. I pray for your lil man and his christmas miracle as well as strength and peace for you, Skip, Tommy and Caroline. You all are in my thoughts, prayers and heart daily. Thank you for taking the time amidst all of this,to keep us all updated and and apart of this cherished journey with you and your family. Lots of Love and Hugs your way!!!!!!!!!!!!

Lisa said...

Thinking of you and your family, I cant imagine what you must be going through. I will keep you all in my prayers.

Andrea said...

I am a stranger to you but I knew Kat in Wilmington and found your blog through her. I lost my 58-year old mom to cancer two days after Thanksgiving last year. We also had Thanksgiving dinner with her laying in the hospital bed. I know how hard it is to go through this during the holidays. It seems like you all are staying very strong. I just thought it might help you to not feel alone in your suffering. Along with all of your friends and family, I am pulling for you and for Carter-man.

Jodi said...

Courtney,

My prayers are with you. You are an amazing mother. I pray for a mircle for your family. Love to you and your family.

Judy said...

I to am praying that the mighty healer, GOD, will wrap his loving arms around your little Carter-Man and perform this miracle we are all praying for. You all are in my thoughts and prayers. God Bless You All.

Karen said...

We continue to pray for a miracle for Carter and keep you and your family in our thoughts and prayers.

Karen Tremblay (Sydney's mother)

mjboyle7 said...

I have been and will continue praying for Carter and your family. We walked this path last year with our youngest child and you so clearly express the agony of DIPG along with the certainty of God's promises to be near through the worst of darknesses. May God prove himself faithful and we continue to pray for healing, in his time.
hb

Kaye said...

I have been following little Carter after a request for prayers on Facebook from Danny Lawray. You have a beautiful family. I cannot imagine what you are going through, but know that I pray for Carter and your family every day. He is such a little fighter. May god continue to give you strength through this very difficult time. And thank you for sharing your story and bringing attention to this terrible disease.

Christine said...

Miracles do happen. Love to you all.

Becky Adye said...

Thank you for the pictures. Carter-man looks comfortable, and, of course, he has the best family in the world!! My husband and I pray for you daily and Carter is always on my mind. Please let us know if we can be helpful.
-Becky Adye (Fairfax Peds East/West RN)

Shannon said...

I am thinking and praying for all of you daily. Hoping a miracle is in the works for Carter. Rylee and now Sydney include him in their prayers everyday. Miracles do happen and I am praying Carter is going to be one of them.

Stacey Coolican said...

You guys don't know me, but I met Grandma CeeCee last year through a mutual friend at work. My son, JP, has just finished treatment for Lymphoma. (I am happy to say he had his port removed yesterday.) I just wanted you to know that I think and pray for all of you often and my heart breaks for you.

Please know that your family - especially Carter-Man - has touched many more lives than you can possibly ever imagine.

May God be with you now and always.

Stacey R. Coolican
www.carepages.com
JPLawsHope

Tim Reffner said...

Just a quick note to let you know we are praying for all of you!

Anonymous said...

Courtney,
Your Grafton friends follow your blog constantly. We are all praying for Carter and your wonderful family. I admire your amazing strength and love that is inspiring to all of us...
Kathy Hopun

Debbie Newton said...

Courtney, I pray that Carter will receive a miracle from God he so much deserves. He is such a special person. You are truly an inspiration to others as you go through the hardest thing possible for a parent. Your family has captured my heart and I pray that God will continue to give your family the strength you need to get through this.