Sunday, November 29, 2009

Recent Pictures!!!

I wanted to share some pictures of our babies!!! It has been awhile since I posted any. Enjoy them as much as we do!!!

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!

With Love,


Monday, November 23, 2009

Christmas Cards with a Purpose...

Please spread holiday cheer while supporting pediatric brain cancer research. 13 amazing DIPG kids designed these adorable holiday cards. Each pack has an assortment of 15 different designs on high-quality glossy 5x7 cards. Please visit and select "SHOP". Proceeds go to pediatric brain cancer research. Please help us to celebrate these amazing children by purchasing a pack!

This is an amazing foundation who continues to raise funds for more research to find a cure for DIPG, as well as other brain cancer. Please help a good cause! I receive so many holiday cards and I am hoping to see a lot of these cards this year!!! Thank you for your support!

Saturday, November 21, 2009

2 weeks at home... we are...2 weeks since we left the hospital. Two weeks and two days since we received the devastating news that this evil tumor had started to progress and take over more of our baby's brain. Two weeks and two days since our doctor told us his days here on earth were limited. When we asked how long? She said maybe days, maybe weeks and here we still are. Carter-Man is still here with us. He is so is unbelievable to me how very strong he is!! He has a lot of fight in him, that is for sure! We are still praying for a miracle. We pray all of the time. We ask God to heal Carter. We pray that he chooses to heal him here on earth but we also pray for NO MORE SUFFERING!!!! It is so hard on Skip and I to watch Carter-Man just lay here. We wonder what he may be thinking and that tears us apart. We do not want him to be afraid so we spend a lot of time assuring him that God is going to take care of him and that he need not be afraid. My heart tells me he is not afraid anymore but it also tells me that he is tired...tired of medicine, tired of not being able to play and laugh, just plain TIRED!!! We just want him to be happy. That is all we have ever wanted..for all of our children to be happy. This last 9 months has been horrific on us because we have put so much in to trying to make them happy and then this evil tumor strikes. Although it struck Carter's body, it struck our happy family...Skip, myself, Tommy, Carter and Caroline. It changed our routine of relaxing in the afternoons and quiet family evenings. Evenings filled with family dinners, talks of our days highs and lows (something we did at the dinner table), outings to get ice cream, trips to the YMCA, and all of the kid's activities. Simply put..IT CHANGED OUR LIVES COMPLETELY!!! My hope is that we can raise enough awareness so that no other child or family has to suffer through this. Skip and I have a lot of plans for the future as far as fighting this tumor and we will see them through!

Carter is still here with us. He does open his eyes from time to time and sometimes he will respond by blinking. He tends to run high fevers and his breathing changes frequently. Skip and I became overly concerned this morning and requested that a hospice nurse come and take a look at Carter-Man. She said that his lungs sound clear. She had never seen Carter before but she did say that the fever and his coloring were all a part of this process. She complemented us on how comfortable and clean he looks. She said what a good job we have done taking care of him..she said it was very obvious. I cannot imagine anything else but I guess these nurses see so many things. He is comfortable and he is resting better now. We are still praying....our main prayer is that our precious baby boy does not suffer anymore and that he feels no pain. He does not deserve any of this. I wish that Skip and I could take it all upon ourselves...We would do it in a split second!

I wanted to thank everyone again for all of the support and prayers! You all are amazing people. Thank you for following Carter's story. There are others who are on this same journey but in different phases. Please pray for these children as well. Nate1992 PrincessAshani

I have followed these children for sometime and I pray for them everyday. Please join me in this!!

With Love and Hope,


Sunday, November 15, 2009

1 week at home.....

Good Morning All! I apologize for not updating sooner. It has been one week since we brought Carter-Man home with the knowledge that we have of the progression of the tumor. Needless to say, our hearts are simply broken..broken for us, for Caroline and Tommy, and our entire family and friends. We had high hopes that Carter would beat this. We knew the odds but still we kept our faith. Have we lost faith? ABSOLUTELY NOT!!!! Since coming home we have gone through a variety of emotions. When we first brought him home, we were not sure what to expect. Would he take his last breath the next day...would we be here alone....would it be peaceful or would we tell Caroline and would we tell our parents?? The questions are still unending and unanswered. Carter-Man continues to move along. Since coming home, he has been anointed with oil and has been prayed over by several people. In the Bible, in the book of James it reads,
"Are any of you sick? You should call for the elders of the church to come and pray over you, anointing you with oil in the name of the Lord. Such a prayer offered in faith will heal the sick, and the Lord will make you well." (James 14-15). We still have that at this point in this journey, the only way for Carter to be healed is through the hands of our Lord. We have the report from the doctors. We know what we have been told and somewhere, deep in my heart and soul, I still hope and pray for a that only the Lord can give. There are no medical treatment options left. There is only one option left and I continue to pray for healing. I know that God may choose to heal Carter-Man in heaven but I pray every second of everyday, that he chooses to heal him here on earth and lift him from his hospital bed and restore him to health. God is still into miracles..why not my Carter-Man? Some may say I am in denial and I tell them NO, I am not..I have that the Lord has poured into my heart and I will keep that faith no matter the outcome. If the Lord chooses to bring Carter-Man home to him versus healing him here on earth, I will remain faithful with the knowledge that the Lord has promised that I will see him again one day!!!

Carter-Man has had an abundance of visitors and for that we are very thankful. We are so very lucky to have the support of family, friends,nurses, doctors, and a community that truly is unbelievable. I am proud to be a part of such a wonderful place. Many wonderful things have been done....Kerry brought me a framed collage of pictures of Carter-Man and her son, Dawson which is so very special to us.....Apryl brought me a framed picture of the girls that dance at our church's Backyard Theatre holding a sign that says "BYT loves Carter"- it is AWESOME!!!....Ashley made molds of Carter-Man's hands and also a mold of me holding his hand. I must say, they are AMAZING!!!! She is also going to make a mold of his feet today and one of Skip holding his hand. We plan to have them mounted together! I cried last night when I saw them drying on my armoire. How very special these pieces of art are to me! Ashley and Becca so graciously took on the responsibility of cleaning and organizing the playroom in the basement. If you have ever been down there, you know how much of a task that is! Thank you, ladies:) Many have asked how we are coping? It is very obvious that Skip and I are coping very differently. This is why we work so well together. He stays on the couch near Carter's bed and rarely goes anywhere else in the house. I, on the other hand, keep busy. I rarely sit down! With the help of some wonderful people (Sandra, Wendy, Barbara), I have reorganized and reorganized and cleaned and cleaned. They are the driving force and have helped to keep me busy. Yesterday we completely revamped the organization of the upstairs and cleaned like crazy! It is therapeutic to me and Skip thinks I am crazy! We laugh about it together as the day comes to a close. As far as sleep goes, Skip does not get much. I get some but not as much as I!!! I sleep upstairs with Caroline but wake easily and come down to check on Carter-Man and Skip. Skip normally naps in the morning and that works for us. It allows me time to get my OCD cleaning behavior out before he comes down!!! We still have our wonderful nurse and of course, our hospice nurse comes everyday during the week. She has noticed some changes in Carter's breathing. We have also seen his heart rate drop is very scary and we tend to panic when it gets low. The beeping of the pulse ox sends shivers down my spine. This is an unimaginably hard time but I try and keep it together for Caroline and Tommy and the rest of the family. I cry a lot but it is normally when I am alone. It seems that if I fall apart, the rest of the family really falls apart. They are already in pieces and I feel like I need to be strong for them. It may seem backwards and it may be, but it works for us!

I want to thank everyone that has called, sent messages and cards, come by to visit, brought food, and for all of the prayers that have been said. We are still praying for a miracle and we pray for peace..peace for all of us!!! Please join us in prayer for these things!!!!

Love to you all,


Monday, November 9, 2009

Carter-Man is home......

I wanted to take a moment and let everyone know that Carter-Man made it home safely yesterday. He has been resting comfortably in his bed. He was blessed with many visitors yesterday. SO many people love him so very much! He truly is a blessed little boy. I am so proud to call him my son. Ever since he was born, he has made me so very proud. I always knew that Carter was special and that there was something different about him. He truly is an angel!!!!

I must tell you all that our hearts are very heavy. We are trying to make our way through all of the things that have happened over the last several days. I am not sure if I will ever be able to wrap my brain around this. I am trying as hard as I can to remain strong for the rest of my family, especially Tommy and Caroline. I have an amazing support network from my family to my AMAZING friends. I am not sure what I would do without them. I am so lucky to have them all!!

Thank you to everyone for the amazing love, support, and prayers! I pray for peace for my Carter-Man.....I pray that he suffers no more......I pray that the Lord gives us all the strength to make it through this most trying time.....I pray that the Lord touches Tommy and Caroline's hearts and helps them through this.....AMEN!!!!!

Friday, November 6, 2009

GOD always has a plan....

BECCA B here, after spending the night with Court/Skip and posting what Courtie would have me to post:

It's up to us to make the best of what HE sends our way. GOD gives us blessings so BIG and also tests our faith in the same BIG way he throws blessings our way. I mention this tonight (or should I say "this morning", because my intentions were to post this before the dawn even came close to calling our names)....however;

I just came home from INOVA FFX Hospital having spent as much time as I possibly could stroking Carter-Man's head, face, hands, etc.

It is no secret that C-Man has not been in the best of health in the last few weeks. The dreadful "FLU SEASON" rocked his world in more ways than one. He not only suffered ONE bout of the virus, but had to ride out TWO encounters with the flu (ONE of them confirmed to be the H1N1 virus).....All the Docs were surprised that he was able to beat it b/c there are completely healthy children in the PICU that couldn't fight the virus.

As Courtney's last post revealed, Carter was resting well at home and then his responsiveness and general breathing became an issue, which is why they took him back up to INOVA FFX.

MANY and MANY MORE tests were administered to try to figure out why it is that Carter-Man was still not seeming to push through to the "other side" of beating whatever illness/virus it was that has been causing him complications in the last few weeks.

Carter-Man was exhibiting signs of pain "bearing down" with his hands, etc. The doctors were trying to figure out where the discomfort was coming from. It was determined that Carter may be experiencing cranial pressure, so an Emergency MRI was ordered STAT.

Unfortunately, the results of the MRI were very bleak. It turns out that Carter-Man's brain tumor has progressed (and upward), meaning that there are really no options left at this point.

The family (and phenomenal team of Doctors here at INOVA Fairfax) are prepared to do everything possible to make Carter's day-in/day-out as pleasant/normal/and comfortable as possible until GOD calls him home to be with so many people who love him. Those same people will remind Carter of all the people left here on Earth that will still LOVE and CHERISH every memory of every moment that each and every one of us have spent with him.