Is there any doubt that Carter-man has arrived?

As the hours waned leading up to today, I found myself weaker and more in touch with the reality of Carter's passing, as I'm sure we all did. I have admired from afar Skip and Courtney's fortitude as they so valiantly made thier way through these first few chapters of this story. The last 10 months (especially the last few days) have given me such respect and reverence for the Harris Crew. I'm elated that Rebecca has brought me to this community, this family.

When Madison told me that it was going to snow 15 inches this weekend, I didn't believe her. Not that I didn't believe HER, I just have very little faith in the meteorology profession that told her such news. Not to mention that snow, something that has always brought me such joy, just didn't seem to fit this weekend. Well, as the day wore on and our tears so easily turned to laughter, the snow became more realistic to me. I cannot fathom a more appropriate end to today.

When we all wake up tomorrow (especially you, Courtney and Skip), Carter will have purified the world around us. It will be white, clean, beautiful. Dents in cars will be hidden, dog poop will go unseen. The world will look new, inviting, fun. Courtney asked Carter for signs that he was OK once he arrived and I love that he's delivered.

For the next day or two, assuming these meteorologist jokers know what they're doing, the snow will turn on fireplaces, it will produce hot cocoa, it will encourage snuggling and hugs. It will provide children and families with joy and memories. All because Carter has arrived.

For the rest of my life, snow will always be associated with Carter. Snow. One of my favorite things the world has to offer. I love that I will always find Carter in snow.

I was so honored today to stand up as a pall bearer. I am honored to have known Carter. I am honored that my daughters were able to have Carter as a friend. And I'm honored that my friendship with the Harris family is young and will last a lifetime.

I found this poem by Robert Frost and thought it was a strong summary of our day with C-Man. Everyone sleep well tonight. Enjoy the snow tomorrow. I'll be making a snow angel for my buddy.


Kyle B.



DUST OF SNOW by Robert Frost

The way a crow
Shook down on me
The dust of snow
From a hemlock tree
Has given my heart
A change of mood
And saved some part
Of a day I had rued.

Dishes Needed

We need some dishes for the Celebration after Carter-Man's services. If you are able to help, please contact Sue Mitchell at (540)903-6904 or Rebecca Beggan at (703)371-7765. We need side dishes, casseroles, desserts, salads, or anything you are able to help with.

Services

I want to thank you all for your kind words through this unimaginably tough time. We are thankful for the amazing support! We are thankful for the gift of Carter-Man!! He is an amazing child who taught us all a lot about life and love. He will be missed terribly! We are thankful that he is in the arms of his Heavenly Father and he has finally met his grandfather, whom loves him so much. We are thankful for Carter's home nurse, Cecilia, who is now part of our family. She took amazing care of Carter until the end! We are thankful for the team at Capital Hospice for their care, love, and concern for our family. We are thankful for the wonderful doctors, nurses, child-life specialists, social workers, and case managers at INOVA who took such excellent care of Carter-Man and our family! YOU ALL ARE AMAZING!!!! Carter loved each one of you dearly!!!

The services for Carter-Man are as follows:

Visitation at Covenant Funeral Home in Fredericksburg on Thursday, December 17th from 5pm-8pm
Funeral at Falmouth Baptist Church Friday, December 18th at 2pm
Graveside will follow at Falmouth Cemetery- Carter will be laid to rest next to his grandfather


We are all trying to wear as much red as possible!!! Carter's favorite color is red and his second is blue!! Although black is normally the color of choice, this was Carter's least favorite color. We want this to be a Celebration of his wonderful life. He would want us to celebrate the special times we had with him!

Again, thank you to everyone!!!

With Love,

Courtney

Heavy Hearts

It is with a very heavy heart that I let all of Carter's Crusaders know that Carter passed away at 4:41am this morning. He was wrapped in the arms of his Daddy as I lay next to them. He is now at peace. He will be taken to NIH in Bethesda to have this EVIL tumor removed for research. I want to thank each and everyone of you for your continued love, support, prayers. Please continue to pray for us as we enter another phase of this journey.

With Love,

Courtney

Carter-Man is still fighting

Good Morning, Crusaders! I wanted to post a little update. There really has been no significant changes. Yesterday was a very difficult day for Skip and I. The day started with G-tube issues. When I gave Carter his 8 o'clock morphine and ativan, I did not notice that the gauze around his G-tube was wet. At 9 o'clock when the hospice nurse arrived, we both noticed it was soaked. We did some investigating and realized that the tube was leaking, meaning he was not getting all of his medicine. We also realized that Carter's GI system has slowed dramatically....he is not absorbing much of anything. Luckily, Carter does still have a PICC line. The only problem was that we only had IV ativan, not morphine. Our hospice nurse took care of ordering that and told us we should receive it later in the day and until then we could go ahead and try using the G-tube. Although, we had not been feeding Carter a lot, we had been giving him water. Without the G-tube, we cannot give water flushes or food. I realize we are at the point that Carter is not hungry but from the moment your child is born, your maternal instinct kicks in to feed your child. When they are sick, you want them to eat...you NEVER want your child to feel hunger....eating provides nourishment, vitamins,energy and all the essentials of daily living. It was very hard for me to realize that I can no longer feed my child. This led to a very difficult day. We did not receive his IV morphine until 8:30 pm last night. This was the first day that we saw issues with pain management..something NO CHILD OR PARENT should have to experience. Nonetheless, we managed to get through and were able to give him IV medicine starting at 10:00 pm last night. He had a good night, although his heart rate is all over the place. Before, it was very low, now it has shot back up again. I would imagine this is due to the tumor continuing to progress on the brain stem, thus affecting his heart rate, breathing, and blood pressure. His breathing has definitely changed this morning. He almost sounds like he is puffing rather than breathing. He has large periods of apnea, sometimes almost a complete minute of no breaths taken. Carter has beaten all odds and for that we are thankful. We are thankful that we have been able to stay on top of his pain and agitation. We are thankful that he has not thrown up. We are thankful that we have escaped any skin breakdown throughout this journey. Carter has now been strictly in the bed for 7 weeks and still no breakdown. HE IS ONE TOUGH COOKIE!!! Although we are in the middle of the worst thing that any parent can experience, at the worst time of year (which is supposed to be the most wonderful time of the year), we are still thankful for many things. This is a true reflection of the inner strength that God has given us. Our hospice nurse told us that Carter could pass at anytime. His lungs are clear but it is obvious that his body is slowing down significantly. Throughout the night, his breathing has changed. As the weekend progresses, I will keep everyone posted!! As always, thank you for your continued prayers, love, and support!

Still Hanging in there.....

Well here we are... 4 weeks out from the day we brought our baby home with the knowledge that his time on earth was limited (from a medical standpoint). Carter has FAR surpassed anyone's expectations. Our wonderful hospice nurse is amazed. In her words exactly, she stated, "There is nothing ordinary about Carter". We all already knew that but who would have thought he would have made it this long. She said that she would no longer give us a time frame because Carter was on his own time along with God. He is so strong. He makes us so proud. He has since the day he was born. He continues to prove what I have always said..."There is something different about Carter". This is what I used to tell everyone about him..now we know why!!!! A mother ALWAYS knows her children best!!!

There really is no new news to report. We did call our hospice nurse Friday because we saw a decline in Carter. She came right away. She, too, saw the difference. Although she said that his time is probably down to hours or days (it is now Sunday so here we are at days), she still stuck to her word that she cannot give us time for him. She said she has been doing this for 10 years and she has never had a child like Carter. I told her she probably never would again!!! We are so thankful for Carter..he is amazing....I look at him and I know he is hearing the angels. I asked him one evening to blink if he saw the angels and sure enough, he blinked his eyes. I asked if they were beautiful...if they were here...and again, he blinked!!!
I told Skip about this and he decided to ask him, too and again....he blinked!! Debbie (Carter's Memaw) asked him the next day and again he blinked. She also asked him if he saw Cha-Cha (my grandfather that passed away recently) and he blinked! She then asked him if he had met his Grandaddy Sale (my dad) and he blinked several times- it was blinks of excitement. This gives us peace. We KNOW the angels are here and wrapping their wings around our baby boy. I will tell you that this is HARD....the hardest thing I have ever had to do and probably the hardest thing I will ever have to do. Each day I wonder if it will be Carter's last. It is heartbreaking but we push through and try and remain strong for Carter, Caroline, and Tommy.

I want to thank everyone for their continued support. Everyday we continue to be amazed by the cards, letters, notes, comments, food, prayers and gifts that we receive. I want to send a special thank you to Sandra and Wendy for their support, love, and devotion. They have been here daily since we brought Carter home on hospice. They do everything they can to help..they clean, they cook, and they provide support. They are AMAZING!!! I am surprised there hands are not cracked due to the number of dishes they have washed! THANK YOU LADIES!!!! I will continue to keep you all posted as things change!

Please continue to pray for my niece, Lauren and the families of Andrew and Delaney.

Love,

Courtney

A Sad Week in this Community

When Carter was first diagnosed with DIPG, I started to follow the journey of a little boy named, Andrew Smith. I posted last night that he was declining and that his family needed prayers. He has battled this horrific disease for 25 months. He and his family have touched the lives of so many people. His mother's faith and grace have touched me deeply. It is with a heavy heart I let you all know that he passed peacefully at 1:00am. Please pray for this family and visit their site (I have posted it again at the bottom).

www.caringbridge.org/visit/aws

If my numbers are correct, that is 3 children that have passed this week from DIPG. THIS HAS TO STOP!!!! We have to come together to raise awareness and find a cure for this evil monster that is stripping these precious children of their lives. Please join me in raising awareness!!!!! SPREAD THE WORD!!!!!

PRAYERS NEEDED!!!

I do not have a lot of time to update but I wanted to let you all know that Carter is hanging in there. He is breathing very slow and only wakes occasionally for a couple of minutes at a time. I will try and update within the next couple of days. There are other families that are also in need of prayer. Please add the following to your prayer list.

My niece, Lauren (she has been readmitted to Children's in DC)

Andrew Smith- www.caringbridge.org/visit/aws (please drop the family a note in their guestbook to provide them with strength)

Please pray for all of the children who are battling this awful disease. It is heart wrenching!!!

Love,

Courtney

Another Angel...

I wanted to let everyone know that Sweet Delaney earned her angel wings this morning.
Please keep her family in your prayers and drop them a note of encouragement on her guestbook.

www.caringbridge.org/visit/delaneystarcher

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!!!

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

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
www.thecurestartsnow.org 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!

2 weeks at home...

Well...here 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 strong..it 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.

www.caringbridge.org/visit/lukepollok

www.caringbridge.org/visit/aws

www.caringbridge.org/visit/teamalexis

www.caringbridge.org/visit/tylermagnuson

www.carepages.com- Nate1992
www.carepages.com- PrincessAshani




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

With Love and Hope,

Courtney

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 dramatic...how would we tell Caroline and Tommy..how 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 Faith..faith 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 miracle...one 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 faith...faith 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 need....lol!!! 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 dramatically....it 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,

Courtney

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!!!!!

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.

Carter-Man LOVES EACH AND EVERY ONE OF YOU!! HELP US ALL BLESS THIS CHILD AS HE HAS BLESSED ALL OF US WITH HIS PRESENCE IN OUR LIVES. AMEN.

Update on Carter-Man

I first need to apologize it has been so long since I last updated about Carter. He has been through so much since the last update regarding the airway scope. He has come down with several infections and had seemed to overcome most of them until last Thursday. He seemed to be experiencing breathing issues and his heart rate was very elevated. Skip and I called 911 and they responded extremely fast. When Carter was discharged from the hospital, I had it notated in their systems about Carter's situation and his diagnosis and the fact that he had a tracheostomy. When he arrived at the hospital, he seemed to have calmed quite a bit. I must say that through all of this his oxygen levels remained between 96%-98% which is awesome! He was running a fever and they gave him a large dose of tylenol and within about 20 minutes he was sleeping calmly, his fever had come down, his heart rate was back to normal, and he was breathing great. They took blood cultures and sent us home after talking with Carter's oncologist. Friday seemed to be okay although it was obvious he did not feel great. Saturday was about the same until the afternoon, when he seemed to get worse. He began sweating and breathing a little faster than normal. We decided to take him directly to INOVA. We called the on-call oncologist and she directly admitted us. Upon arrival, they were elated to know that Carter no longer needed to go to the PICU because he had not been on the ventilator for sometime. They took blood cultures, a culture from his trache, and swabbed him for the flu. Within 20 minutes, it was determined that he had Influenza A (most likely H1N1). They immediately moved him from the Hem/Onc unit to a quarantined area for children with the flu. It was unbelievable the amount of children that were in the hospital for the flu. He slept the entire day Sunday and seemed to perk up on Monday. But....his blood cultures from the Thursday night ER visit had started to grow a staph infection, as well as the cultures drawn Satuday night. He also had an infection growing from the culture from his trache. The type of staph infection that was growing is apparently a "sticky" infection so they though that maybe it was in his PICC line and that they may have to pull it. He had been placed on very strong antibiotics and seemed to be responding. His cultures were still growing so they pulled the PICC line and placed an IV for his treatments and antibiotics. He had a very scary episode on Wednesday where he was breathing heavily again and had an elevated heart rate. He seemed to get very tense and then relax. We became very nervous as this very possibly could have been neurological. After much medication, he calmed down and slept very well the entire next day. The doctors all agreed that this did not appear to be neurological but flu related. They did do a quick CAT scan and the tumor had not changed since the last CAT and the last MRI. He had another episode last night of the same nature and one of the PICU Intensivists came over to look at Carter and once again explained that this flu is bad. He told me that he has perfectly healthy children in the PICU because of this flu. He ordered albuterol breathing treatments for Carter every 3 hours and advised the nurses and doctors to keep him as comfortable and relaxed as possible as he already has several underlying conditions. Carter calmed down and has seemed to have a decent day. Skip and I asked that they do another flu swab and a culture from his trache. The flu was still positive and we were told it could take him a month to get over this. We are still awaiting the most recent blood cultures and cultures from his trache to make sure that the staph infection is gone and the infection from the trache is gone. He did receive his treatments today. We are hoping that the staph infection is gone and that he can get a new PICC line on Monday. I am not sure when he will come home. We want him to be in the safest place possible and for now, that is at the hospital.

Tonight was very bittersweet at my house. We had the usual friends and famiy over for soup and trick or treating but we were missig my baby. I loved seeing the kids but it was not the same. I missed him more than words could ever express but I held it together for Caroline and his best friends, who I know missed him terribly. Madison carried his trick or treat bag around and told everyone that her best friend was at the hospital and could not come but she wanted to fill his bag. Carter is truly a blessed boy to have so many people who love and adore him. Please continue to pray for him. I know that the prayers are being heard and that there are many angels watching over him.

On another note, please pray for my niece, Lauren. She has been diagnosed with a heart disease and she also needs many prayers. My family has been through so much this year but we all still continue to be strong and have faith. I know so many of you pray for Carter daily. Please add Lauren to those prayers.

I want to thank everyone for their continued love, prayers, and support. We continue to receive cards, gift cards, letters, and gifts for the children. We are so very thankful!!!! Also, thank you to everyone who came out to the golf tournament. I wish that Skip, Carter, and myself could have come. Maybe next time!! Again, thank you all so much- God has truly put together an army of angels for my family. Although 2009 has been a trying year for my entire family, I still have faith and I still continue to see God move. I am thankful to serve such a wonderful and loving God...I know no matter what he will get me through it. I once heard someone say.....He has not brought you to this point to leave you!! And I truly believe this!!!!

Love to you all,

Courtney

Last Chance to Order Cookbooks!!

The deadline to submit your order(s) for the Carter's Crusaders cookbook is this Friday, October 30th. Please send all order requests to:

cccb.orders@gmail.com

The cookbooks will be going to the printer on Monday, November 2nd. They will be mailed to CeCee Embrey who will distribute them accordingly. The cost of the cookbook is $15. Checks should be made payable (upon delivery) to Carter's Crusaders. Thanks so much for your support!!

GOLF TOURNAMENT SPACES STILL AVAILABLE!!

The Fall Golf Tournament for Carter's Crusaders is this Thursday (10/29) still has open spots. Not only that, but the registration has been extended - NO LATE FEES!!! The registration fee is still $85 dollars and you don't want to miss this opportunity to help Carter and his family! The Spring tournament was such a HUGE success, that we're hoping to duplicate that again next week!

This is a perfect way for you and your friend(s) to put together a team (of 4) and come out for one more round of 18 holes before Winter is upon us. If you are interested in taking part in this fundraiser, please contact Jennifer Romack at (540) 379-2109 or Lee's Hill Golf Club directly at (540) 891-0111. Ask about the Carter's Crusaders' golf outing and you will be taken care of!

We really hope to see some repeat faces and are looking forward to seeing even more new faces in our crusade to recruit more angels for Carter-Man!! Thanks in advance for your participation!

PRAYERS ANSWERED!!!!

I wanted to quickly update everyone and let them know that Carter's ENT appointment was FABULOUS!! His upper airway looks great and his vocal chords are moving like they were designed to do. He said there is such a difference between this scope and the previous one!! He should not have any trouble breathing without the trache, although it may take awhile for him to get used to it again. We are going to start capping his trache tonight to see how it goes. Carter's ENT did tell us that his swallow is still weak but hopefully will only get stronger:) We will continue to pray that his swallow continues to get stronger and he can get back to eating by mouth!! Thank you to everyone for their prayers! God is listening and answering:)

A Coincidence....NO, Divine Intervention!!

I want to start out with a story that moves me each time I think about it. As most know, Carter is provided with nursing care at home. We normally have a nurse from 9-9 Monday through Friday and on some weekends. We also have required monthly visits from a Nursing Supervisor. We had our first visit on Wednesday with who we thought was just a nursing supervisor. She was more than that- she is yet another angel that God has lead our way- she is our neighbor who only lives 6 houses down from us. I had never had the opportunity to meet her so when she arrived she was a complete stranger. When she arrived, I was on the phone with the GI doctor regarding some of Carter's medicines. I came in and read the folder that she had set up for him and it read, Carter-Man Harris. I wondered how in the world she knew that we called him Carter-Man. I then sat down with her and she began to get teary-eyed and preceded to tell me that she was my neighbor and knew all about Carter. She said that for months she had been praying for God to give her the strength to come down and introduce herself. She said she wondered if he would. She then kept praying that he would somehow lead her to Carter. She returned to work (after a leave of absence after crushing her ankle- OUCH!) and it just so happened to be with the same agency that we use for nursing. She was sitting down with the owner to coordinate a plan for her to see all of the patients that she needed to see. She was first directed to a little girl, Lily, whom I know and have known her Dad for years. When she was told that Lily had a brain tumor, she responded, "I have a little boy in my neighborhood who also has a brain tumor". The owner of the company replied, "Oh my goodness, are you talking about Carter? That is your next stop!" Her prayers had been answered- just not the way she had expected. God led her to us and what a blessing that was!!! Oh yes and there is more..the day before I had thought about and prayed about wanting Caroline to meet someone in the neighborhood that would go to Grafton Village next year and someone that I could scoop up when Caroline and I go to the playground. Sure enough, she preceded to tell me that she had a four year old that would go to Grafton next year- another prayer answered! I am so thankful to know that she is right down the street and that I have another prayer warrior on Carter's side. I also am looking forward to the day when Caroline can meet her daughter and have someone her age to play with in the neighborhood.

I have learned a lot through this journey with Carter. I have learned that God does answer prayers- sometimes just not the way we would like for them to be answered. It is all part of his divine plan- one that we, as mere humans, could never understand. His thinking is far from what we could ever imagine.
I have learned a different way to pray- yes, I pray that Carter will be completely healed and will be returned to me walking, talking, laughing and breathing without a tracheostomy. But, I also pray that God's will be done. I have been through a lot in my life and realize that life is not fair and is not always fun and games- BUT...it is the life we have been given and the paths we have been asked to walk. Although there are tough times, there are always blessings and sometimes we have to look to find them. God does not bring you somewhere only to leave you- he has promised that he will never leave us or forsake us and this, I believe, is the truth. I know that he has walked with me and carried me during tough times in my life and he has always pulled me through! We have an awesome God, an Almighty God!!!

As for Carter.....things remain about the same. We are starting the process of trying to see if he will be able to breathe without the trache. We received the caps for the trache yesterday and are waiting until after his ENT appointment on Monday to start. We need to assure that his upper airway is in good shape and that his vocal cords are moving appropriately. If this is so, then we will begin, full force ahead. Please pray for us that his vocal chords are moving and his upper airway is in good shape so we can have this trache removed FOR GOOD!!!! As far as physical therapy, he is doing great! He seems to get stronger each session. He is standing, with assistance, much easier (although he cries while doing so- I am sure it hurts him). For his last two sessions, his physical therapist and Dad, assist him with walking from the couch to the table. He obviously needs a lot of assistance but it is amazing that he can even lift his feet up. I wait for the day for him to walk to the table for dinner again!!! I know God will bring us there!! I see his works everyday. We are still waiting for the stander to come in- I believe that this will help him dramatically!! He has more use of his arms and for that we are thankful, he is sitting alone for up to 10 minutes using his arms for assistance. We are continuing on the same treatment path. We will have his next MRI at the end of October. We pray for good results!!!!!

I, also, want to thank everyone for their continued support. We continue to receive cards, gift cards, food, and donations. For this we are more thankful than you will ever know. Thank you to everyone:) I wish that I could send out thank you cards to everyone but unfortunately there are not enough hours in the day. So, please, take this as a sincere thank you from Skip and I. Without the support we continue to receive, we would not be able to get through this. Also, thank you to everyone for the donations, cards, and heartfelt sympathy during the loss of my grandfather. It was more helpful that you will ever know. We are all doing well, although we miss him dearly! Happy Fall to everyone:)


A little boy whom I have followed for some time earned his angel wings Wednesday...please pray for his family during this difficult time and send them words of support. His website is as follows...
www.caringbridge.org/visit/lukepollok

Love,

Courtney

Get Ready to Golf!

There will be another Golf Tournament at Lee's Hill Golf Club on Thursday, October 29th. Come on out and get another round in before the cold weather comes here to stay! We were able to raise a good deal of money for the Harris family back in May and we're hoping to do it again! For more details please click HERE to view the flyer. Hope to see you there!!

Carter's Crusaders Cook Books coming soon!!

Friends and Family, Carter's cookbook will be going to the printer soon. We are hoping to have them complete and ready for shipment by the end of October or thereabouts. Kathryn has worked very hard on these. Please send your orders to cccb.recipes@gmail.com.

Pass the word!! Email anyone you can think of who would like to have one. These would make great Christmas gifts! They are $15.00 each. No payment is needed until delivery, but once received checks can be made payable to Carter's Crusaders. Checks can be given to CeCee Embrey upon delivery or mailed to Carter Harris 14 Glen Oak Road, Fredericksburg, Va. 22405.

Thanks again for all your support!!

Chili's and St Jude's Team UP....If you are looking to eat out today....Try Chili's, it is for a GREAT cause!!!

Good Morning! Below, I have copied an email my mom sent out this morning.
Please help with our fight against Childhood Cancer!!!

Friends, please read below regarding St Judes and Chili's!! If you are out
and about looking for a place to eat lunch or dinner, maybe Chili's????
They will donate all of today's profits to St Judes!!!


Dine at Chili's on September 28 and support St. Jude
This Monday, Chili's Grill & Bar asks you to dine out for lunch or dinner
(or both!) and support St. Jude Children's Research Hospital.

On September 28, as National Childhood Cancer Awareness Month comes to a
close, participating Chili's restaurants around the country will be donating
100 percent of the day's profits to St. Jude. It's called Donate Our Profits
Day at Chili's and it is part of Chili's month-long Create-A-Pepper to Fight
Childhood Cancer campaign.

During September, guests can make a donation to St. Jude and receive a
coloring sheet they can decorate and have displayed in the restaurant. Since
September 1, thousands have stopped by their local Chili's to
Create-A-Pepper and used their creativity and imagination to color peppers
and show their support for children fighting cancer.

"We are thankful to have enthusiastic and generous partners like Chili's,"
said Richard C. Shadyac Jr., chief executive officer of ALSAC, the
fundraising organization of St. Jude. "Even during tough economic times,
Chili's honors its commitment to donate 100 percent of one day's profit to
support St. Jude. Every dollar donated by Chili's guests helps St. Jude
continue our efforts in finding the cures and providing the treatments that
will save children's lives."

In addition to dining at Chili's on September 28 and creating a pepper,
patrons can support St. Jude in other ways:

Purchase Create-A-Pepper T-shirts that can be customized with permanent
marker.
Buy a customized Create-A-Pepper key that can be cut for use at home or the
office.
Visit www.createapepper.com to make an online donation.

So stop by your participating Chili's restaurant and help St. Jude in the
fight against childhood cancer.

For more information, to purchase Create-A-Pepper T-shirts and keys, to make
an online donation or to create a pepper online, visit
www.createapepper.com.


This is a wonderful opportunity to give to a cause that is lacking the necessary funds to help all of the children who battle cancer!!

Carter-Man has another angel..........

I awake this morning with a very heavy heart. My grandfather, Carter-Man's Cha-Cha, passed away early Friday morning surrounded by family. My grandfather was an amazing man. He was a wonderful husband, an exceptional father, and an even more exceptional grandfather. He loved his family more than words can ever express. As I said my last good-bye's to him, I asked him to protect my baby. I asked him to beg and plead that Carter be cured of this evil within him. I know he heard me and I know he will do everything in his power to do just that. Carter was very special to Grandaddy, as he was my dad's first grandchild. Although most of you know, my father passed away when I was 10 years old and he was the apple of my grandfather's eye. So my brother, Chad and Carter, overtook his eye (although he loved all of his family more than we will ever know) because he knew he had to take the place of a very special man, my Dad. My grandfather always had money (change and dollar bills) in his pockets and for those of you that do not know, Carter LOVES money, especially change. He has numerous piggy banks. My Grandmother says this is the Sale in him. Grandaddy (Cha-Cha to many) always brought Carter change to put in his banks and Carter loved it. He always knew if Cha-Cha was coming he would be getting change. Both of my children adored him. We all did. He will be missed by so many. Today, we will attend his services and lay his body to rest. Of course, we know he is not there. We know he is in the presence of the Lord and my Dad. He feels no pain and is walking, talking, and laughing again. That gives me peace. My grandfather loved his church and that is where his services will be. He will be laid to rest in the same area as my father. Although tears will be shed and sadness will be present, I know that Grandaddy would want us to celebrate his life and be thankful for the life he had. That is what I will try and do, with some tears along with celebration. Please pray for the Lord to be with us today. Please pray that he provides strength to us all but especially to my Grandmother (his wife of 58 years), my aunt, Teeny, and my brother, Chad. I pray that he wraps them in his loving arms today and reassures them that Grandaddy is at home with him and with my Dad.

Below I have included a poem that I wrote that will be read today.


His Loving Hands and his gentle touch,
Are among the things we will miss so much.

Treasured memories and times spent together,
Will remain in our hearts forever and ever.

From a husband, a father, and a grandfather,
To an uncle and a friend,
All of these roles,
He fulfilled until the very end.

Rides to McDonalds for ice cream cones and watching the airplanes land,
Riding three wheelers in the driveway
And his gentle, loving hands.

Sneaking candy from the kitchen bowl and pushing us in the swings,
I know he went to heaven riding on an angel’s wings.
Met by a son whom he loved so much,
I can only imagine their overwhelming touch.

Through the most difficult of times
And a heartbreak for all,
He stood strong and firm
He did not let us fall.

He guided us through the darkness
And led us to the light,
Taking over the role of a father
For a child so full of fright.

Although there were times of sorrow,
His life was mostly filled with joy,
From nieces, nephews, and grandchildren,
To one very special boy.

Although we know he is in such a glorious place,
We still long to see that beautiful smile upon his face.

We all love and miss him more than words could ever say,
But we all know God’s promise that we WILL see him again one day.





My heart is also heavy this morning due to all of the children that are struggling this morning. I have followed these children along my own journey and have become emotionally connected to them. My heart goes out to their families as they make difficult decisions. I pray for their comfort and their peace. I pray that the Lord will give them the strength that they need to make it through the most trying times. Please pray for these families along with me!

Love to you all,

Courtney

Update on appointment with Carter's Pulmonologist

I wanted to give everyone an update on Carter's appointment today. We met with Dr. Kapoor (Carter's Pulmonologist) and to say the least, he was VERY pleased. He felt as if our request to start the process of trying to remove the tracheostomy was more than reasonable. He does not use the ventilator anymore, he does not require oxygen (his stats were 98% at the office), and his lower airway sounds great! There are several things that need to be done to have this happen. First, we need a cap. This is a device that actually covers the trache and requires Carter to breathe through his mouth and nose. I have already got that on order and hope to get it by the end of the week. We will start slow with it and use it in intervals until he can use it all day. Then we will move to using it at night. We also have to make an appointment with Carter's ENT to have him do an upper airway scope to make sure that his vocal cords are moving like they should be. Dr. Kapoor did not forsee this being an issue as Carter tolerates the speaking valve well and we have actually capped the trache ourselves and he does fine! After all of this, we will return to see Dr. Kapoor on October 21st and if the report from the ENT is fine and he is tolerating the cap, we will have an overnight stay at INOVA for them to monitor him. If he does well, NO MORE TRACHE!!!!!!!! HOOORRRRRAAAYYYYY!!! Skip and I are very happy that we can begin this process. Thank you to everyone for their positive thoughts and prayers!!! Please continue to pray that all of this goes well and Carter-Man can begin to breathe like God designed our bodies to do!!!!!

September.....a new meaning to this month

Ahh..I can remember in years past what the month of September meant to me...the start of school, preparing for autumn, opening windows, decorating for Halloween and for the autumn season, preparing closets-summer clothes out and fall and winter clothes in, shoe shopping, making soups, a start of a new football season (yes this is still very important in this house-GO SKINS!) and so much more!! Although some of these things are still a part of my life, the meaning has changed. This month has new meaning to us as we watch our 6 year old battle a horrible brain tumor. I am sure that most of you are not aware that September is Childhood Cancer Awareness Month and September 13th is Childhood Cancer Awareness Day. I mean come on, the president of our country has not acknowledged it even when he had a prime opportunity while addressing our nation about healthcare! HA- what a joke! It infuriates me to know that the leader of this country has not even mentioned or talked about it. It infuriated my mother so much that she sent him an email addressing her concern. She works for the Department of Defense and made sure this was known and she requested an acknowledgement. I wonder if she will get one. If she does or does not I will be sure to keep you posted! I must say, yes, I have put up Halloween decorations (I always decorate early and the children love it), I have put autumn and winter clothes in closets, I have bought new shoes (keeping in mind that Carter needs a different kind for more support), I have made soup, and yes I tried to stay awake to watch the season opener of the NFL! But...it is not the same as last year! As I was putting up my flag and hanging up the decorations on the front porch, I remembered last year- Carter was sooo excited! He was at school when I started and came home ecstatic that I had started decorating. He was running around and helping as he always did. This year was different....he could not run or help- although we did sit him at the kitchen table to see the banister (I put up pumpkin garland and wrap orange lights around it), the tea light holders (pumpkin and ghost shaped), and the various other things that I put around in the house. We have not yet taken him outside to see the outside things but that is the plan! He and Caroline have had colds and Carter has severe seasonal allergies so we are trying to avoid going out with the pollen count so high. He cannot take any cough suppressant nor his allergy medicine so no open windows and for now, limited outdoor time. Anyhow....it is just not the same! This month has new meaning for my entire family! Please...wear as much GOLD (this represents Childhood Cancer Awareness) as you can this month.....we are working on getting gold ribbons and hope to be wearing them soon! Please pray that our government takes a stand and starts to make a difference for all of the children that battle everyday! The more people that help with this cause, the more attention it will receive and the closer we come to a cure!!!

As for an update on Carter...he is doing better everyday!!!! We actually were able to remove some pieces of equipment from our living room this morning and it was very exciting! Now it looks like a normal hospital room and not a PICU room! Nonetheless, we continue to see improvement slowly but surely. He has been able to sit by himself in the floor using his arms for support. His physical therapist said it is amazing the difference from when he first came home. He is rolling over for her much easier. At night, I sometimes, see him moving his legs all around. We are still waiting on the stander. A person from the equipment company will be coming Monday to "fit" him for it and make sure of the one that will work for him. We are very excited about this:) We are still slowly weening more medicine from his daily regimen and he seems to be fine without it. The only pain medicine that he gets is Tylenol with Codeine and he also gets Xanax at night to calm him. His sleeping is MUCH better and almost like he has always slept! He is still on a small dose of steroids (Hydrocortisone) and we are hoping to slowly start weening that soon. We have an appointment with his Pulmonologist Tuesday and are hoping they will look at his airway and decide that he does not need the trache anymore!! This would be wonderful ,as he hates having it in! Please keep him in your prayers as he continues his fight! He is an amazing young man and continues to amaze us daily- he is so brave and courageous- WE ARE SO PROUD HE IS OUR SON!!!!!

I would like to give a HUGE thank you to Aunt Kat for all of the presents (WE LOVE YOU), to Mason for the 2 boxes filled with stuff for Carter (HE LOVED ALL OF IT- YOU ARE AMAZING), to Belva and Jay Miller for the box of presents for the whole family (YOU ALL ARE AWESOME), and to everyone who continues to send cards- HE LOVES THEM:) On another note, Carter now has an email address. We created this for him because he is playing in The Harris Family Fantasy Football League this year and he needed an email address. If you would like to drop him a line or two, his email is carteristheman@gmail.com! He would love it:)

Thank you to everyone for your continued love, support, and prayers!!!! Please continue to pray for us as we continue along this journey!!!!

Love,

Courtney

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 www.monkeyinmychair.org!! 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 www.hopecam.org. 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,

Courtney

REMINDER: Pancake Breakfast at Applebee's this Saturday!

$5 breakfast this Saturday (9/5/09) at the Applebee's in Central Park (8am-10am).

2 Pancakes
2 sausages
1 beverage

All proceeds will benefit Carter Harris and HaileysWish.org

Come on out for a wonderful cause and enjoy a great breakfast for a great price!

Asking For Prayers.....

Tomorrow is Carter Man's follow-up MRI to see what these new treatments have done as far as the tumor is concerned. We are asking for a Universal Hour of Prayer tomorrow between 11AM and Noon (Tuesday 9/1/09). We've seen the power of prayer and want to tap into that again....so please keep Carter and his family in your prayers tomorrow between 11am and Noon as the family will be awaiting his results (which will realistically not be available until Wednesday or Thursday).

I am sitting with Courtney as we speak watching Carter in his wheelchair enjoying some cartoons while my oldest daughter, Madison rubs his arm.....a beautiful sight! He has had a wonderful day today and even slept in his own bed last night!

Carter watched Courtney cook dinner tonight which started the ball rolling with introducing him to normalcy. He sat at the dinner table tonight and even ate a bite or two of spaghetti.....(Courtney says "sorry, Doc....Mom's in control here") The family did their normal "Highs/Lows" at the dinner table and Carter enjoyed listening to all of it and even showed signs of wanting to participate.

All-in-all, tomorrow is a very important day for all involved....and your participation is appreciated! Let us all gather together in prayer tomorrow and always!

Happy Birthday to Carter-Man!!!!!

Today is Carter's 6th birthday!!! Happy, Happy Birthday to my baby:) Although last night was not the greatest of nights for Carter (he had trouble sleeping from 4 am on but he is now resting great), I reflected on the past 6 years and how much joy he has filled my life with. I thought back to this day 6 years ago. Carter was not ready to come out. I was induced on Wednesday the 27th and finally on Friday the 29th, after nothing was changing, they decided to take him via C-section. At 10:32 pm, the most precious baby boy was given to Skip and I from our Heavenly Father. As time has passed, I have realized more and more that that is exactly what children are...they are a gift from God. They are his children first. Six years ago, I never dreamed that we would be going through what we are going through now...I treasure each smile, each laugh, each moment more now than ever!! Usually around this time of year, I am frantically rushing around planning for his big birthday bash. Boy have times changed!! We are still having a very small birthday celebration for Carter but nothing even close to years passed! Although I long for the big birthday bashes again where Carter is running around and trying desperately to stick his finger in the icing on the cake (for those that truly know Carter, they know he does not really care for the cake part- just the icing), I am so thankful that we are celebrating his 6th birthday and the life that was given to us 6 years ago. I will treasure today more than ever! I will be sure to post pictures from today for all to see!!

As for an update on Carter- we are still thoroughly enjoying being home and trying to adjust to our new normal. Some days are great, others are not! This is just the nature of the roller coaster we are riding...we take each moment as it comes. We did have a scare this past week and had to take Carter to the local emergency room where the doctors there were under direct instruction from our wonderful pediatrician (who I am so thankful for) and our great Oncology team from CNMC. Carter was running a fever and was not breathing like he should have been. Blood work was done and cultures were taken and he was given a strong antibiotic that would cover most bacterial infections. It was deemed that Carter had an infection in his trache. It was later determined that this is the same bacteria that has grown before, probably meaning it has colonized. Carter will remain on this antibiotic for 7-10 days and then it may be necessary that he receives antibiotic breathing treatments. Other than that, Carter is doing well. His legs are stronger than they have been in months and he is able to move his fingers to pick up and stack blocks (although he really only cooperates with his physical therapist). His physical therapist said yesterday that that was the BEST session she has had with him:) Go, Carter, Go!! He still has a long way to go but we are determined that he will get there! With fervent prayers and faith, Carter will prevail. His net MRI is scheduled for this Tuesday. PLEASE, PLEASE SAY EXTRA PRAYERS FOR US THIS WEEK. Both Skip and I have major anxiety as this day approaches. Although clinically, he is better, we still get very nervous! We pray that this tumor is shrinking but at minimum we pray that it is stable. We appreciate all of the positive thoughts and prayers that come our way. We could not walk this journey alone so thank you for walking it with us!!!

Love to you all,

Courtney

A Quick Update....

I just wanted to let everyone know that Carter-Man is still doing well at home. We are all falling into a routine and it seems to be working well. Skip and I feel very comfortable with Carter's care, so much that we have gone down on the nursing hours. We are only going to have a nurse during the day and on the nights that Skip is at work. We are thankful for all of the well wishes and help we have received since we got home. Carter-Man has enjoyed all of the visitors. After his initial visit with Jenny and the Beggan girls, he was very anxious to see his Nanny (Grandma Marlene to me), Teeny, Beth, Chuck, and the girls. He enjoyed each of the visits. He thoroughly enjoys the butterfly that Nanny and Teeny brought him. It stands in our front flower bed. He sat in his wheelchair today and watched it for what seemed like hours. Finally, we took him outside and he LOVES it!! Thanks, Teeny and Nanny!!! He had a whole lot of fun last night watching Annabelle and Caroline run around. He REALLY liked watching Uncle Chuck ride his scooter on the sidewalk and wreck..lol!! It was a really fun evening! Skip, Caroline, Barbara, and the nurse took Carter on quite a walk today. It was a little longer than what they anticipated but Carter loved it. He was somewhat hot when they returned but he was still happy to be outside. All in all, today was a nice Sunday at home with our family. Carter always has down days after his treatment and it lasts for 3-4 days after. He has definitely perked up today and hopefully tomorrow he will perk up even more.

As I update on our Carter-Man and ask for your continued prayers, I also ask that you pray for a friend of mine's little girl, Lily. She has been in and out of the hospital since May and was doing very well. Unfortunately, she has been readmitted. Please keep Sweet Lily and her family in your prayers. Also, please pray for the family of a little girl named, Adeline. She was in the PICU with Carter for the entire time we were there. She left a week earlier than we did. Unfortunately, she passed away yesterday morning. Please pray that the Lord wraps his loving and faithful arms around her family and carries them through this most difficult time. Thank you to everyone for your continued love, support, and prayers. Also, thank you so much to those who have sent cards to Carter. He LOVES looking at them and having me read them to him.

Love to you all,

Courtney

And Thanks be to you, O Lord......

Carter had his first outpatient checkup yesterday in 4 months. We went to Children's National Medical Center in Northern Virginia to see Carter's Oncologist, Dr. Horn. We were greeted with open arms and lots of smiles. The entire staff was so happy to see Carter in the clinic and out of the hospital. Dr. Lawlor (another oncologist that we saw at the hospital) even brought Carter a water balloon to throw at Dr. Horn and boy did he try. It was a laugh for us all. The staff sang Happy Birthday to him and gave him a movie for his birthday. They were simply amazing:) Dr. Horn was very happy to see Carter in the office. She was happy with his progress....so happy that she said he does not need to come back to the office for 2 weeks. YIIIPPPPEEEEE!! Yesterday was a very long day. We left the house at 7:45 am and did not get home until 6:45pm. Carter's treatments run over a 3 hour time period. At the beginning of the visit, his nurse, Kristin, could not get his PICC line to draw so they had to put TPA (AKA clot buster) in it and that has to sit for an hour. After that, it drew great- THANK THE LORD!! His blood counts were AWESOME! Dr. Horn has scheduled his MRI for September 1st at INOVA!!! Please start praying now for improvement or at least stability! Dr. Horn told us yesterday she did not expect any bad news because of how he looks clinically. That made my day!! Carter did great on the ride up (the first time he has been in a car since May 22nd)! The ride home was not so good- he was very tired and irritated. I must say, I was, too! It was a long day!!! On the way up, as we approached the Gallows Road exit he started crying. After some deliberation, we figured out that he knew this was the exit for the hospital (he is a smart boy) and thought we were going back. As we passed the hospital, his nurse Aisha and he waved as we passed and then he calmed. I am not sure how he will do when we go for the MRI. We will have to continually reassure him that WE ARE NOT STAYING!!!! When Carter arrived home, he was so happy- smiling and laughing:) Recently, he has been trying to mouth words to us (he has not learned to talk over the trache). This is a MAJOR improvement. It was witnessed 1st hand by his Aunt Melissa last night. He was mouthing "I want". I figured out that he wanted spaghettio. He is not really supposed to have any food by mouth yet but I did let him taste some and he was soo very happy. He is trying to learn to talk with something called a pass-a muir valve that gets placed over the trache. It is very hard to get used to. He gets better everyday with it. He was able to say "I" "Hi" and "No" last night!!!! We were over the moon:) Please continue to pray for our Carter-Man as this battle is continuous. We need all of the prayers we can get to get through this. We know that there is only one "Great Physician" and we pray that he places his healing hands on Carter and stops the devil within. Thank you to everyone again for your continued support!

Love to all,

Courtney

We're Doing It Again!!!

First off...this is Becca!! YAY!! (that's my own personal "wahooo") I haven't posted in quite some time because Courtney has really been enjoying being able to log in as me and do her thing by addressing you all personally. I have to admit ~ I have REALLY missed writing under the avenue of this blog! I had never really "written" ANYTHING before I started this blog unless the Dean of my University deemed it necessary depending on what class I was enrolled in at any given time in my collegiate career. Now, I find myself wondering...

I never knew I would fall in love with the art of writing until I started writing about something that was so close to my heart! All that being said....here is the REAL reason for my post:

We are having another FUNdraiser (clever, I know...FUNd) - hehe. I witnessed, first-hand the success of the last "piggy-back" fundraiser at my house with the fine Sterling Jewelry and Kelly's Kids' combined efforts. It was Sooo successful for the Harris Family, that I've decided to open up my home and do it AGAIN! Those of you that attended can't tell me you didn't have a good time!! (just stop it...don't even try) Those of you that ordered can't tell me you haven't been enjoying your fabulous Sterling silver jewelry (pah-leez) or that your children haven't been getting admiration stares all over the place due to their adorable Kelly's Kids clothing (I've had people come close to offering to buy the clothing off my girls' backs ~ I'm not kidding)!

There are only two differences this time around: There is a NEW catalog that just launched for the 2009-2010 line of sterling silver fun-tastic jewelry!! AND I am personally the Jewelry Rep this time! Tracy Sullivan was the Rep last time we did this. She showed me how successful you can be in this business so I decided to start my OWN jewelry business!! Sooo, I too will be offering 100% of my commission to the Harris Family for this event! The last event at my home raised over $1800 for the Harris Family even before Courtney's Kelly's Kids commission was tallied. For those of you that don't know ~ Courtney is a local rep for Kelly's Kids boutique children's clothing. Courtney receives commission from any/all sales her trunk shows do this Fall. If you have little ones, little-ish ones or even nieces/nephews/grandkids....and don't want to dress them in what the local stores have to offer, you should visit KellysKids.com!!

My trunk show with Courtney is scheduled for Saturday Sept. 12th at 6pm. We will also have a table set up displaying a great sample of the sterling silver jewelry as well as some of the newest pieces in the 2009-2010 line. Again ~ I want to remind you that we were able to collect over $1800 in funds for the Harris Family this last Spring. I would LOVE to try to BEAT that!! I KNOW you all will help me in helping Carter and his family, right?? I haven't been let down by any of you and I find it hard to believe it would happen now!!

THIS IS AN OPEN HOUSE FORUM JUST LIKE THE LAST TIME...CAN'T MAKE IT AT 6PM?? THEN COME AT 9PM!! I'm very easy to get along with :) If you are interested in taking part in this fundraiser, here are your options:

You can come Party With Me (I'm really fun, people have told me) I promise to have yummy snacks and adult beverages on hand (CHILDREN ARE WELCOME ~ I HAVE FOUR OF MY OWN, HOW CAN I TURN YOURS AWAY??)
Saturday, September 12th @ 6pm
9 Garner Drive
Fredericksburg, VA 22405

You can contact me by:
rebecca.beggan@gmail.com
(540)898-6406 H
(703)371-7765 C

If you are unable to come to the open house on September 12th, you can always view the Kelly's Kids Fall '09 collection at kellyskids.com (but Courtney won't receive commission unless you specifically list her name). Please feel free to contact me anyway that works best for you!

I truly hope to see a LOT of new faces for those of you that were unable to attend my first open house and am looking forward to seeing those of you that were able to make it so we can do it all over again!

PLEASE FORWARD THIS ON TO ALL YOUR FRIENDS/FAMILY/NEIGHBORS/COWORKERS, THIS IS A COMMUNITY EFFORT!! THANK YOU TO ALL!

SO HAPPY TO BE HOME!!!

Here is a picture of Carter today....yesterday was a little shaky because of the anxiety that accompanied bringing Carter home but as the day has progressed we have all started to settle in!! We are so happy to have our baby home:) Thank you, Lord for all of the blessings!!!

HOME SWEET HOME!!!

I wanted to give a quick update that Carter-Man made it home just fine yesterday. He was transported by Physician's Support to make it easy for everyone and because he does have a trache and they wanted to make sure that he got into the house safely....AND HE DID!!! It was very obvious that although he was VERY happy to be home, he was nervous (thank goodness for medicine for that)!! He was very tired and seemed to take a great nap in his new bed. He was very excited to see his new Star Wars bedding that Grandma Cecee bought for him. We noticed he seemed sad so we tried for sometime to figure out what was wrong.....he was sad that Jenny and the Beggan girls were not here to greet him. I explained that I wanted it to be calm but that I would make one quick phone call and within a minute they would be here and sure enough, Jenny showed up within seconds and the Beggan girls were here within minutes (Becca actually yanked them out of the pool when she got my message)!!!! He was elated to see them and they were just as happy to see him. He had somewhat of a difficult evening and night getting settled. This is completely understandable considering he has been in the hospital for 4 months. He did get some sleep and was anxious this morning to get on the couch. It was the first time he sat on the couch since May and he was very comfortable. This will also help to get him sitting up alone again. He will start physical and occupational therapy 3 times a week tomorrow. He is sleeping comfortable now and hopefully will take a nice long nap so we can go for a walk later.Now onto the adjustment period...
As you can imagine, the care is very overwhelming. Carter is on 15 different medicines, most having to be given 2-3 times per day. He is also on a continuous feed (formula that we must prepare every night) and he gets bolus feeds of H20 4 times a day. I know that we will adjust..it will just take time. I know that there are many of you that are super anxious to see him and we understand. We ask that you call before you come. If we do not answer, please just leave a message and we will call you back when we get a chance. We are doing our best to provide the best care to Carter while trying hard to maintain normalcy for Caroline. We also want to provide privacy for Carter as often as he needs it. No doubt, he loves visitors but there are times during the day that he is sleeping, doing physical therapy, or just relaxing. We are also going to try to put time aside in the day for family walks and movie time. Carter has his regular checkup and treatment this Thursday. We are sheduled to have transportation for that but Carter is very adamant that he wants to go in our truck. We are going to do a trial run and see how that goes. I think he will do just fine (so does Skip). We wish that we could have everyone here at once to celebrate his homecoming but right now we are trying so hard to adjust to our "new" normal. Thank you for understanding:) I will keep you all posted as the week progresses!

Love to you all,

Courtney

A Big Thank You from Tom (Gagee) and Grandma Cecee

Dear Friends and Family,
Tom and I cannot begin to thank all of you for everything you have done to support our family during this time. From cleaning house, cutting grass, organizing dinners, organizing fundraisers, running errands, babysitting Caroline and most of all, for being you. This has broken our hearts into a million pieces, but as Carter heals, so do we. Because of your kindness, our journey has been easier. As we look towards Carter's homecoming our hearts are blessed with the unconditional love, support and prayers you have bestowed upon us. Right now it would be impossible to write the thousands of "thank you" notes that each of you deserve. Please accept this as our very, very gracious Thank You.
Fondly,

Tom and Cecee

A Birthday to Remember.....

As many of you know, August is a very busy month for the Harris family and our close network of friends. Everyone in my immediate family (Tommy, Caroline, Myself, Skip, and Carter) has a birthday in August!! Yes, very strange, I know, but nonetheless it is what it is. Our close network of friends also has many August birthdays.. Happy Birthday to all of you:) For obvious reasons, this year has been a little different. We have tried, for the other two children, to make it as special as we always do. Tommy was the big "16" on the 1st and our baby, Caroline, was 4 on the 3rd. That was a very hard day for me, as I cannot believe that my baby is 4. I turned 34 on the 4th. My birthday was very different from years past, although much more special this year. As I sat at INOVA with Carter-Man and Jenny on my 34th birthday, I did a lot of reflecting on years past. I remembered the pool parties I used to have at my Nanny and Papa's. Boy do I miss them...they were so very special to me and I was very special to them. My Papa was a very important man in my life and I miss him each day. I can see him peaking his head out of his window yelling to my mom, "Charlotte Carol, does she have sunscreen on her nose?" He was always worried about me getting sunburned on my nose...I am now obsessed with that on my own children. I love and miss you, Papa!!! I also reflected on how birthdays have changed over the years. I looked at my teenage birthdays and how I wanted to be with my friends and oh how I look back and wish I could change some of that. I remember my 16th birthday..it was a Sunday at my house at Belle Meade Court ..it was probably the most special birthday that I can remember..spent with family and friends. My wonderful parents got me a car (COURTIE- for those that remember)and I loved it:) My Papa took me the next day to get my driver's license. What an exciting day and spent with the most amazing man that I have ever known! He was very nervous that morning but he tried so hard not to show it. Then was my 21st birthday spent with some friends that were just friends for a season..although I still think of them often. My 30th birthday was the most meaningful- Caroline was just 1 day old. I spent it with her and my family at Mary Washington Hospital. I would not have wanted to be anywhere else. And my 34th...awwww....one I will never, ever forget. I spent it with my "sister" and best friend, Jenny and my one true hero, Carter-Man. I was also blessed to spend it with some very special friends, ones that I have met along this journey. It is very ironic that they all just happened to come to Carter-Man's room at the same time..coincidence, I think not! It was so very special to me...thank you to Erin Whitmer, who brought me treats (they were sooo good) and some sparkling Lemonade that I love and that precious Baby Noah who gives us all hope, thank you to Sarah Knight for visiting with us in 520 and bringing your smile that provides hope and faith in all of us (her daughter, Sweet Julia Grace, had already been released but had come back for a minor surgery- it just so happened to be on my birthday), and thank you to Gisselle for coming by at the same time and bringing your optimism. This was definitely a birthday I will always hold near and dear to my heart, spent with people that God has brought together to provide each other with hope, faith, and strength through the most trying times. I love all of you and am so thankful that our paths have crossed:) I would not have wanted to be anywhere else but with my precious Carter-Man! Thank you to everyone for all of the gifts and the phone calls. Thank you to "my girls" for a nice dinner out..I had so much fun...I love all of you more than you will ever know. Thank you to Mom, Tom, Chad, and Skip for the gorgeous bracelet. And last but not least...thank you to my amazing husband for just being you. You are simply amazing..you are the best husband and father EVER! The bracelet and the roses were more than thoughtful. I will never take the bracelet off.. I LOVE YOU!!! Now enough of this and onto the main attraction...the incredible, amazing, tough, handsome....CARTER-MAN!!!
Carter is doing AWESOME!!!! He is well on his way to getting better and better everyday. His breathing is still great and he is getting stronger and stronger everyday. We are now back to taking walks and going outside and he is so happy about that. His last 2 physical therapy sessions have been GREAT! His physical therapist says he is ready to stand and he is showing that he is definitely ready. He has attempted to for the last 2 days and he is well on his way to doing it:) Dr. Im (he gives medical advice to the Physical and Occupational Therapists) said that when he observed Carter's physical therapy session yesterday that it was the best session he has EVER seen with Carter-Man!! Go, Carter-Man, Go!!! I do not want to jinx us but our anticipated discharge date is the 17th...yes just a little over a week away!!! We are happy but nervous at the same time. We are going to have to adjust to a new kind of normal and that may take some time but we will get there. We have a long road ahead of us but we will get there! Carter-Man has proved that he is a hero and a fighter- HE WILL PREVAIL!!
Thank you to everyone for their continuous thoughts and prayers! Thank you to all who came out to the auction to support our family- we appreciate it more than you will ever know. Please pray for the following children as some are battling the same tumor as Carter and some different medical issues....Julia Grace, Eddie, Adeline, Andrew, Luke, Tyler, Christopher, Alexis, Ella, Lily, and Nicky. Please also pray for a friend of mine, Keeva, as she continues her battle with cancer (she is doing great and responding well to her treatments)- GO KEEVA!!!!!!

Love to you all,

Courtney

The Roller Coaster ride continues......

Good Morning, All! I wanted to give everyone an update on Carter-Man. So.....he definitely had an infection. There was some bacteria in his sputum culture..the blood cultures were fine but the doctors believe that because the blood culture was done before the septic event, they did not do the culture at the right time. I did notice on Thursday afternoon that the area around his PICC line was red and inflamed. I showed the nurse and she had the resident and Attending look at it and sure enough it was infected. They took it out and placed another one. He has bounced back quicker than expected, which we are very thankful for..lots of prayer and positive thinking:) His blood counts are great!!! The EKG that was done did pick up on the irregularity of the heartbeat but it was a normal irregularity, whatever that may mean! We have not experienced that since that night. The doctor explained to us that it is like an unconditioned athlete running a marathon (which would be when Carter went septic) and then falling on the couch. The heart rate would drop and may beat irregularly. Thank goodness that his heart rate is better than it has been in weeks, his breathing is wonderful, and he has had no fever in days:) He is ready to get back to where we were before this event..going outside, taking walks, and happy! On a GREAT note, Skip and I and our team (Intensivist, Oncologist, Social Worker, Case Manager, Occupational Therapist, Head Nurse, Pulmonologist) here at INOVA had a meeting on Thursday to discuss going HOME....ahhhh......the sound of that makes my heart smile. There are some things that need to be ironed out and we need to finish this course of antibiotics (he is on 3 of them)to be sure the infection is long gone. We will have nursing at home for 16 hours per day in the beginning to help with his care. Skip and I have both learned how to change the trache and trache ties (Skip is a pro, I am still learning)!!! We have to iron out all of the medical equipment we will need and have it delivered. A HUGE thank you to Ellen and Al Sharpe for letting us use their hospital bed. We already have it placed in our family room! Gagee hung curtains to block out the sunlight in the family room so Carter can sleep and Barbara and Jenny helped me rearrange the room. We have organizers set up and are anxiously awaiting the Big Day!!! Carter is resting right now. He had a hard time getting settled last night..I truly believe that he has heard us talk about going home and now he is super anxious! WE ARE, TOO:)
As you have read, Skip and I see this journey as a roller coaster. There are twists and turns, ups and downs, long hills to climb, short hills to climb, some scary, some long, some fun, some short! We are taking each as they come. We enjoy the fun ones and dread the scary ones. We have been very blessed throughout this journey. Carter has been through some life-threatening events and each time, he pulls through..by the Grace of God. He is a fighter..he is a true hero..he is an inspiration to us all....he is CARTER-MAN!!!!!!!!!!! He is the light of our life!!! We hope to bring him home in the next couple of weeks:) Please continue to pray for him and send positive thoughts!!!
By the way, Carter loves cards...he gets one several times a week from Belva and Jay Miller and Aunt Tina and Uncle Bill. HE LOVES THEM:) Thank you so much! Many have asked about sending them and just to let everyone know he loves when I bring them to him at the hospital.
His mailing address is
Carter-Man Harris
14 Glen Oak Road
Fredericksburg, VA 22405


Love to you all,

Courtney

A Roller Coaster of Emotions!!

Well, I wanted to give everyone the latest on my Carter-Man! He is still proving to be a fighter!! Thank the Lord for that:) Sunday was another roller coaster of a day for Carter. He had been off of the vent for almost 3 days. There was mention of him moving back to HEM/ONC. As soon as that was mentioned, BOOM, another hill to climb. His breathing was fast again so...back to pressure support on the vent. After that, all was calm! Sunday afternoon, Caroline and I came up after being at home. Carter was so very thrilled to see us. We stayed at the Ronald McDonald House that night. Monday was good as he came off of the vent in the morning and seemed to be doing good. We took him outside for a walk and to the playroom (where his sister piled all kinds of toys on top of him). He stayed in his chair for about 3 hours watching movies. That was his longest stretch yet! That afternoon, we watched movies and he laughed so hard. We were watching Home Alone and I could not stop laughing and neither could he. It was GREAT!!!! Caroline and I went to the Ronald McDonald House to stay. Soon after we arrived, Skip called to say that Carter's heart rate was VERY elevated and his blood pressure was low. I WAS SHOCKED! He was so good when I left. As time went on, his heart rate slowed (after bolus's of saline water) and his blood pressure stabilized. He also had a high temperature. They told Skip there was obviously an infection and Carter had become septic- meaning something had affected his blood stream! Carter's heart rate remained ok but his blood pressure was on the lower side so they gave him a medicine to bring that up. Yesterday was a pretty uneventful day he slept most of the day and his color slowly returned to normal, as did his blood pressure. His blood counts showed his white blood cells were very high which means he was definitely fighting something- that is great for a child who is on chemo!!! His body reacted the way it was designed to do!! He received red blood cells yesterday because his were low. He had an episode last night where his heart rate was lower than normal and showed some irregularity. That has happened before when his heart rate was low. They did do an EKG (waiting on results) and a chest x-ray (that was fine). Last night he slept until about 4 am when he woke up wide awake! The nurse was very glad to see him awake and his color was great! They have taken him off of the medicine for his blood pressure and are going to wean him from the vent today. Hopefully, we are in the right direction!!! His blood counts are good this morning and we are hoping when he wakes again he will be his happy little self! Please say extra prayers for the Carter-Man today!!! He needs them:) I will post again when I know about the blood cultures that were drawn and the EKG results!!

Love to you all,

Courtney