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!