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Tuesday, May 8, 2012 11:50 AM CDT

Happy Birthday to our sweetie Carlie Raye today. Eleven years old and what a beautiful young girl I'm sure you’ve turned out to be... beaming with smiles and sassy attitude and making sure you got lots of pink on this special day.

Mommy, Daddy, Lexie and Anthony all miss you very much as I know the rest of your extremely extended family does. Look for your message balloons to come up to the heavens later today and make sure you send another big gust of wind to help them on their way like you did last year.

With all our love...
The Edgington Family

Friday, July 8, 2011 9:29 AM CDT

Sorry it’s been so long since we have updated the page… it's not that we aren’t always thinking about our sweet girl or all of you that have been so loyal to remembering her and the site. Summer is in full swing and we have had a whirlwind time so far.

Let’s start with Anthony finishing 7th grade with straight A’s and Lexie finishing year one of Med School with the same… way to go kids. That moved us right into the big event of the year… Lexie and Troy’s wedding on 6/11/11… it was an amazing event. Dad and Anthony were wearing our monkey suits as Anthony served as one of the ushers and of course I had to make that long trip down the aisle holding back the tears. She made for a gorgeous bride and her groom (Troy) really cleaned up well too. We had lots of family and friends in for the event and it could not have gone smoother. They got back from their Honeymoon just in time for Father’s Day and they both came by to visit us for the afternoon. Now Lexie is back at school and Troy is back to work… welcome to married life!!

We all just got back from Austin for a long 4th of July weekend with Dave and Jody. Anthony took his friend Bryce and we took the boat up for a couple of days on Lake Austin and Travis. It was hot, but the water was cool and we have a great time with our friends. Anthony has a tennis tournament this weekend in Pasadena (TX) and he has been hitting the courts extra hard and long to prepare. He is enjoying his time off from school with extra sleep and extra time in the pool. Charon has her girls trip this August… they are going to Nashville for some down home entertainment… I’m jealous.

Summer’s still aren’t the same without our little water monkey around the pool and lake… we sure miss her and know she would have stolen the show at Lexie’s wedding. We appreciate you all keeping her and us in your hearts and prayers… we’ll do the same for you.

Love, The Edgington Family

Sunday, May 8, 2011 9:17 AM CDT

Happy Birthday to our sweet girl today!! It's bittersweet having Carlie's birthday fall on Mother's Day this year. Our hearts are heavy missing her today and everyday, but we will celebrate by spending the day on the boat with her Rayes of Sunshine all around us. We will end the day with friends and neighbors helping us release about three dozen pink balloons in the sky, having chocolate chip cookies and drinking pink lemonade!

We are all doing good. The wedding date for Lexie and Troy is fast approaching and we are so looking forward to that celebration and welcoming Troy into our family. I got a sneak peek at Lexie in her dress last weekend and she looked gorgeous. She finished up her first year of Med School and has almost two months off before starting up again. Anthony is doing awesome in school and tennis and is getting so tall and mature! He will turn 14 next week. Mark is staying busy with work and about to make a two week trip to Asia.

Happy Mother's Day to all of the Mommas out there. Special hugs to those who are still fighting this fight or who have a hero no longer with us.

Love,
The Edgington's

Wednesday, February 2, 2011 12:27 AM CST

Just a quick note from us to everyone thinking about our sweet Carlie today... we love her dearly, we miss her greatly and we are thinking of her even more today than usual.

Love, The Edgington's

Tuesday, December 21, 2010 10:25 AM CDT

Hello all, its Mark here giving an update before the holidays descend upon us. Things are already pretty busy… Anthony is out of school for the next two weeks as is Lexie, done with 1 semester of Med School. I’ll be done with work after today and off until the New Year starts. The house is almost ready and we will be having my parents and Charon’s family all there for Christmas dinner… it should be fun. Charon has been doing most of the Xmas shopping and Anthony and I will start the wrapping process here pretty soon. He is still busy with tennis 3 to 4 days per week and recently played in another tournament. Guess there will lots of tennis gear under the tree this year.

We all had a great time at Uncle Andy’s ranch for Thanksgiving… most all of Charon’s family was there for the long weekend. We had lots of good food, plenty of time to relax and of course hunting. It’s been a good season for Anthony and me… 3 nice bucks already in the freezer. We also had a nice surprise that weekend… Lexie got engaged to her long-time sweetheart, Troy. If we thought we were busy with Christmas, you can imagine the additional activities of planning for a June (yes this coming June) wedding. Lexie only has this coming summer off from Med School in the next 4 to 6 years, so it’s going to be a short engagement and a big celebration in June. We are so happy for them both and welcome Troy into the family with open arms.

It’s a bittersweet time of year for the Edgington household. Christmas was always a favorite of Carlie’s and we miss her even more around the holidays if that’s even possible. Aunt Debbie (my sister) sent a really pretty wreath that lights up, with pink ribbons on it for us to put at Carlie’s grave-site. We were afraid it would by ruined by weather or removed, so we hung it outside her room and will keep it as part of the yearly decorations as just another reminder of our beautiful little girl’s love for Christmas.

Here’s hoping that you all have a safe and happy holiday season and that Santa brings you everything you asked for.

Love, The Edgington’s

Sunday, July 4, 2010 12:28 AM CDT

Happy 4th of July!! Hope everyone is enjoying their summer spending time with family and friends. I thought when school ended things would slow down but it’s been a busy summer so far. Anthony ended another school year with all A’s and E’s and will be moving on to 7th grade at McCullough Jr. High. It’s hard to imagine Carlie would be going in to 4th grade – when I see some of her friends or other kids her age I stop and imagine how would she be wearing her hair (because that’s what girls worry about), what type of student would she be, what would be her favorite activities, etc. I know that she would still be just as sweet and sassy as ever no matter what.

After over two years, we finally got Carlie’s bench put together…okay so I am a procrastinator! If you remember the first birthday after she passed away we had a bunch of the neighbor kids and some of our Neuroblastoma family friends over and all the kids painted a tile so we could create this bench in her memory. It turned out really nice. I will put a photo on the photo page. My next Carlie project is to have a quilt made using her clothes. That’s going to be another hard one and I can’t seem to get started on that yet. But I envision a really funky quilt using her clothes and incorporating some hot pink and animal print fabric (or as she would call it “kitty cat print”).

I am helping the Houston area Children’s Neuroblastoma Cancer Foundation with our first NB Hope 5K Fun Run/Walk. I hope some of you can join us. There will also be a 1K family walk if you are not up to the 5K. It is being held Saturday morning, August 28th, in the Bridgeland Community located Hwy 290 and Fry Road. Registration is open now all the way up to the event. Please visit the website for all the details: www.nbhopefunrun.com. If you are interested in sponsoring the event, please click on the Sponsor tab for those details. We are also going to have a raffle and will be selling tickets for that. If you have something you’d like to donate to our raffle that would be great too (gift certificates, goods/services, etc). But most of all we’d love to see some of your smiling faces walking/running by our sides supporting our cause.

Another thing keeping us busy is our new Doberman, Stanley! We got Stanley (named by the breeder but fitting of his goofy personality) about a month ago. He is already 10 months old and is 70 lbs. Just like Rocco, he has a very sweet personality.

Lexie finished up substitute teaching this past school year. Her boyfriend, Troy, just bought a house so she’s been busy helping him get that all set up. They have a number of friends getting married soon so they have been going to a lot of parties, showers, weddings. One of her very best friends, Claire, will be getting married this fall and she is Maid of Honor so she’s been busy helping her. Claire is such a great young lady, has been so supportive to our family, and we are so happy for her. One of Lexie’s friends from high school that is a few years older than her was just diagnosed with Leukemia. Her name is Ryan Kerr. There will be a blood/platelet drive held for Ryan on Saturday, July 17th, at the Spring Creek Oaks Clubhouse (Louetta and TC Jester area) if you are in the area.

Mark continues to be busy with work and home projects. We are in the processing of updating our bathroom and then Anthony asked if we could re-paint and do some things to his room.

Anthony played in his first ZAT tennis tournament in Wimberly last month. About two weeks ago he was a Jr. Volunteer at the WOW Science Camp here in The Woodlands. This past week he was away at the A&M Tennis Camp. This was his first away camp and he really enjoyed it and got lots of tennis instruction and play. Each coach got to select one of the team members to recognize and Anthony was selected from his group – once again, we are so proud of him. We have several trips coming up: We will be driving up to Norris Lake in Tennessee to hang out with our friends at their lake house and then we’ll drive over to Indiana to visit Mark’s sisters and some friends. We will also be going with Grandma Martha to a beach house in Galveston. We also have a long weekend planned with Dave & Jody at Lake Travis.

Thanks for your continued love and support. Hug your kids and enjoy your summer with them!

Love, The Edgington’s

Friday, May 7, 2010 12:07 AM CDT

Hello everyone,

Hope everyone is doing great and enjoying some warm, sunny weather. We have been doing fine and staying busy. We had a nice Easter holiday. We had lots of family and friends over for a nice Easter lunch. Anthony is staying busy with tennis and trying to keep up with all the end of schoolyear homework and projects. I think he's ready for summer. He's especially ready for his 13th birthday next week... Can't believe he's going to be a teenager! He is still such a sweet, sensitive, loving young man. I am so proud to be his mother. So, this is a tough, bittersweet weekend with Saturday being Carlie's birthday and Sunday being Mother's Day. My kids and family are the best Mother's Day present I could have ever dreamed of. I just wish I still had the joy of raising Carlie here with us. I am so proud to be a Mom and Stepmom to Lexie, Anthony, and Carlie. Give your kids lots of hugs and love this weekend. Today after school we are going to do our annual pink birthday balloon release in memory of our sweet girl. And, of course, we'll be serving her favorite chocolate chip cookies and pink lemonade. Tomorrow we'll keep busy and are going to do some fun things in Houston for the day, spend the night with Grandma Martha, and then have Mother's Day lunch at Aunt Catey's house.

Happy Mother's Day to all of the Moms out there. Special love goes out to my fellow Angel Moms.

Love, The Edgington's

Thursday, April 1, 2010 2:17 PM CDT

Well it’s been too long since I have updated the site, so here is what I know is going on… remember that we husbands usually don’t know everything and usually get it wrong, but here goes.

Since the last post I was out of town on my annual golf trip and had a great time… even managed to win a few rounds too. With the weather warming up, I hope to get Charon and Anthony out with me now to see if they still can swing the clubs. All that will have to be coordinated with Anthony’s busy tennis schedule though. He is now going to multiple practice/lessons and has his tournaments on Sundays. He will be going to tennis camp this June for a week at Texas A&M. His really looking forward to it and we think it will be an awesome experience for him… and mom too with him being gone for a week.

After that finishes, we will be going on vacation for a couple of weeks, driving through Tennessee to visit our friends at their lake house… then onto Indy to visit with my sisters and finally ending up in Valparaiso, IN to visit with Kevin, Amy and the boys. They just got transferred there about a week ago and we will be their first visitors from the South. Charon is really looking forward to spending 40 or so hours in the car with Anthony and I… is should be a hoot!

Charon continues to be busy with the Lanyard parties, bible-study, Anthony’s chauffer, and of course her work. Somehow she still manages to find home improvement projects for me to work on to keep my weekends busy. You don’t even want to know about the ceiling fan project that included our friends Dave and Jody… they were in this past weekend for a visit. Needless to say, no one was hurt and the fan looks great.

My work is busy as usual… I have lots of travel coming up, both domestic and International, so it’s going to be a busy summer with all the plans we have. Busy helps the healing, but we still miss our girl tremendously. Thanks for the thoughts and prayers… we use them all.

Love, The Edgington’s

Tuesday, February 2, 2010 2:31 PM CST

Hello everyone,

It's hard to believe two years ago today our sweet girl, Carlie, passed away. Our hearts are still heavy from missing her every single minute but we are doing okay. Thank you for all your calls, letters, emails, text messages, etc. So nice to hear from you and know that so many people continue to think about Carlie and our family.

We would also like to share the great news that Lexie has been accepted to medical school at UTMB in Galveston. We are so, so proud of her! Classes start this August. When Mark and I got married, Lexie was just seven years old - she was already saying then that she wanted to be a doctor. Talk about setting goals and working towards them! We know she will make an excellent doctor one day.

A few weeks ago we did our first family ski vacation with Anthony. We met friends in Snow Mass, Colorado. Anthony snowboarded for three days and loved it. I see more of these trips in his future.

Thanks again for checking in with us. We really love and appreciate all of your support!

Love, The Edgington's

Wednesday, December 23, 2009 8:59 PM CST

Happy Holidays to All!

We have been meaning to update the website for weeks and I’m just now taking a minute to finally do that! I hope everyone had a wonderful Thanksgiving and has been enjoying family, friends, and holiday festivities. We enjoyed spending Thanksgiving at my brother’s house with family and friends. We spent that weekend at the Kerbow’s property in Madisonville and did a little deer hunting or I should say sitting in the deer stand. I went and sat in the stand with Mark and Anthony on Saturday evening and even if any deer came they would have immediately been scared off because of Anthony’s snoring – he decided to take a little snooze and slept the whole time in the stand!

On a sad note, we had a bit of a rough time last week. We had to unexpectedly put our Doberman, Rocco, down. He had just turned three years old on December 8th. What made it even harder is that it was an avoidable mistake that should have been caught by one or two vets. He was on two different medications for a brief time that should never be given together. One was prescribed by his regular Vet and one by his Vet Dermatologist. This combination caused his stomach to rupture. It was especially hard on Anthony – he was very upset, said he already had to go through losing his sister and now he felt like he was losing his brother. He was also worried that I would now be home alone after he got on the bus each day. As a parent it just kills you that you cannot prevent these things from happening to your children – you just want them to be healthy and happy and to protect them from these types of things. After Carlie relapsed we decided it was time for a dog so we could pick a dog out as a family, Carlie would get to experience the joy of having a pet, and knowing the uncertainty of her health, Anthony would hopefully have a companion for years to come. As we know, things don’t always go as we have planned or how we hope them to be. I guess Rocco did his job here with us and it was time for him to go play with Carlie.

On a sweet note, Anthony continues to amaze us with his sensitivity. One day we walked into Borders book store and there was a table set up with a bunch of small tin foil/tinsel type Christmas trees. There was one hot pink one left and he kept saying we have to get that, we have to get that. So, of course I told him we could. He proudly carried that pink tree around the store as we shopped. When we got home he put it in the middle of the kitchen table. The next morning while I was working in the office I saw him come down the stairs. A few minutes later when I came out of the office I saw him sitting on the floor behind the dining room table. I didn’t know what he was up to but didn’t bother him. A few minutes later he came out and showed us what he had done. He had gone into Carlie’s room and got a bunch of her barrettes, hair bows, ribbons, and her pinwheel. He clipped the barrettes on like ornaments, ran the ribbons through the branches, and put the pinwheel on top. It was so cute and so sweet. I could not have thought of any better way to decorate that little tree – what a great imagination and way to honor Carlie in our home this Christmas. We miss her soooo much!

Lexie has been busy substitute teaching and working retail during the Christmas break. She has a sub job lined up for the entire months of April and May. Her high school drill team teacher will be out on maternity leave and asked Lexie to sub for her during her absence. Mark is off work all of this week and next so we’ve been doing a lot of family things. Mark and Anthony have been playing a lot of tennis and all three of us went golfing on Monday with Grandma and Grandpa Shipley. Next Monday we are going to meet Dave and Jody in Ft. Worth and visit The Stockyard area. We are going over to my Aunt and Uncle’s for Christmas Eve and then my mom and her new puppy are going to spend Christmas Eve night with us. Lexie and Grandma and Grandpa Shipley will join us Christmas morning to open gifts. Then we’ll go over and spend Christmas Day with my Dad’s side of the family. It’s good to stay very busy to help our minds and hearts from how much we miss our girl.

Our family wishes you a very, merry Christmas and Happy New Year! Thank you for your continued love and support.

Love, The Edgington’s

Monday, November 2, 2009 3:30 PM CST

Hello everyone,

Hope everyone is doing fine and is enjoying this beautiful weather we are having. We have been keeping busy. It’s been a while since we’ve updated so I’ll try to remember what we’ve been doing! Anthony’s last team tennis match will be this Sunday. He has seemed to really enjoy it and I think his skills have been improving. He has already picked out a really nice tennis racket he wants for Christmas to upgrade his inexpensive Academy racket! Lexie is doing well too. She recently collected on our college graduation gift to her and had PRK eye surgery. She is recovering from that and enjoying not having to mess with contacts any longer! She is also substitute teaching and looking forward to her first paycheck! Mark is busy with work, taking care of the family/house, and has a few business trips coming up.

I went on my yearly girls’ trip recently. Jody, Carol, and I went to Sarasota, Florida, to stay with our friend Kathy at her beachfront condo. We really had a nice time – beach, pool, shopping, spa, High Tea at The Ritz, dining out, laughed, cried, etc. Kathy was the perfect host and made our visit so special. While I was gone, Mark and Anthony enjoyed some guy time. They also golfed with Grandma and Grandpa Shipley. Last month, my friend, Lisa, and I hosted a Lanyard Workshop. We had about 40 ladies come and bead lanyards to be sold. 100% of the profits go to The Children’s Neuroblastoma Cancer Foundation. The party was a lot of fun and I plan to help with some more workshops in the future. If you are interested in purchasing a lanyard, feel free to go to www.chooseaverb.blogspot.com and place an online order. These make great gifts for teachers, healthcare employees, or anyone else who needs to wear an ID badge or keep track of keys! There is now a really cute “Swine Flew” lanyard added to the collection.. as well as Manyards and Eyeglass chains.

Some of you may remember about two years ago our family was invited to the Faust Squirrel Creek Ranch through Texas Children’s Cancer Center. We went along with four other Neuroblastoma families and everyone really enjoyed the trip. I remember Anthony and Carlie were so upset knowing that you only got one turn to go to the ranch. A few months ago we got a phone call from our beloved Childlife Specialist, Breanna. She said they were holding their very first weekend retreat for families who have a child that passed away from cancer. We had such mixed emotions about going back without Carlie but decided as a family to take this opportunity to connect with other families in our same situation. We were joined by two families we already know (Batman and Chloe Belle’s families) and we met two other great families. Along with Breanna, there were other TCH and Baylor staff as well. We enjoyed hanging out and getting to see everyone again. We ate great food, played tennis, went fishing, enjoyed a hayride through the property to see all the exotic animals, couples date night, breakout support group discussions, etc. Saturday after dinner they had planned a beautiful ceremony to remember all of our children. It was very touching. We sat by the lake and shared memories and ended it with a Sky Lantern lift-off over the water. If you don’t know what a Sky Lantern is, search the internet to check it out. It was so beautiful to see about 30 of these lighted lanterns released in the sky that night. The night was then topped off with a Halloween party – pumpkin carving, games, and trick-or-treating. Anita, from Purple Songs Can Fly, came and worked with all the kids to put together a song using memories they shared. We sure missed Carlie more than ever – there were lots of butterflies flying around all weekend to remind us of her beautiful self! Anthony had a nice time this weekend although I think it may have been more emotional than he was prepared for. I am so proud of his participation and sharing. Mark and I continually receive comments/compliments on what a great, young man Anthony is It gives us so much joy to be his parents! It is a true act of kindness what the Faust family does for supporting these children and families of the TCH cancer center.

Well, that’s all I have for now. Thank you for your continued love and support. Our love and prayers continue to go out to all of our fellow cancer families.

Love, The Edgington’s

Saturday, September 12, 2009 9:18 PM CDT

Hello everyone,

Hope everyone is doing well and all the kiddos are enjoying the new school year. Anthony is doing great in 6th grade. His Intermediate school is only 5th and 6th grade and they keep the same teachers/students for both years. So, this was a pretty easy year for him to start back since he is already familiar with his teachers and classmates. The only complaint he had was he has a bottom locker this year – not too bad! We just signed him up for an 8 week Jr. Team Tennis where they will play matches on Sunday afternoons. We haven’t been doing a whole lot out of the ordinary lately, just trying to get back into the school routine.

The Childrens Neuroblastoma Cancer Foundation held another bake sale at TCH this week and made over $2000! When you have 3-4 of these per year, it’s a nice way to make close to $10,000 for pediatric cancer. Speaking of pediatric cancer, did you know that September is Pediatric Cancer Awareness Month and today is Pediatric Cancer Awareness Day?!! It’s sad that not too many people know that. I hate that I now know that. Here are just a few ways people can show their support: Donate to a pediatric cancer foundation of your choice, volunteer at a local pediatric cancer hospital/clinic, donate blood or platelets, register to become a bone marrow donor, or dine at any Chili’s restaurant on Monday, Sept. 28, when they donate 100 percent of their profits to St. Jude’s Childrens Research Hospital (you know we’ll be there even though they discontinued Carlie’s favorite fried cheese)!!

Thank you to everyone for all of your continued support! Our thoughts and prayers continue to go out to our fellow cancer families.

Love, The Edgington’s

Thursday, August 13, 2009 4:35 PM CDT

Hello everyone,

Gosh, I don’t know where to start – it’s been almost two months since we’ve updated. I have thought about it many times, but just haven’t taken the time to do it. I think I avoid it sometimes because if I wrote how I really feel at that time it may just sound like a big pity party for myself. It has now been a year and a half since Carlie passed away. The heartache is still so strong. Sometimes the feeling is what I imagine it would be like to lose a part of your body such as an arm or leg – it is something that is always supposed to be there, catches you off guard when you find yourself looking for it and surprised by it’s absence, you feel like it is still there but can’t touch or feel it and you try to live your life without it the best you can. I hope that didn’t sound too weird! I’m just having a hard time figuring out how and what to fill that void with. A few weeks ago Anthony and I had a talk (aka meltdown) about missing Carlie. He’s found several pink balls on the golf course during his golf camp and we decided that was just Carlie letting him know she is there and wishing him well. He said he missed her and it was hard being the only child around the house and he felt bad for me for losing my daughter. It broke my heart but was happy he talked to me. OK, so I sat here and wrote like I said I wouldn’t… but that is just the way it is some of the time.

On to other things… We had two really great boating trips to Austin in July. One with our friends and the other with family. Lake Travis was really low but we were still able to do some boating and swimming. Anthony really did awesome in his golf camp earning ribbons most weeks and ending with a trophy tied for 3rd place in the tournament. He also golfed 9 holes with his friend, Kyle, at his Member/Guest and they did really great. It makes me happy to see him enjoying the sport. He also loved being a Jr. Volunteer at Science Camp this year. Due to that, he decided he wanted to use some of his saved money to get a gecko. After much research and checking around, he purchased an eyelash crested gecko and named him Spike. He has a little over a week left before he starts 6th grade. Lexie is doing good too. She was waitlisted for two med schools, but unfortunately did not get a spot. She re-took the MCat test and did better once again and re-applied for next year. She is working hard trying to find a job – lots of competition for jobs out there right now. I’m still working part-time from home and still trying to work in some golfing as well. I’m hoping when the weather gets a little cooler I’ll get out there a little more. Mark has been busy with work and did a ten day Asia trip and manages to fit in some golf as well.

Enjoy the rest of your summer! Love, The Edgington’s

Monday, June 22, 2009 2:52 PM CDT

Hey folks, just a short note to let you know we are all doing well and trying to beat the summer heat even though summer just started yesterday. It’s already busy as Anthony is still taking tennis lessons, volunteering at the Science Camp and going to Golf Camp too. This all after he managed to visit the emergency room on the very first day of summer vacation. He banged his shin up pretty good on the edge of the pool and had to get five stitches to close it up. That cost him a week and a half of pool and lake time, so he got pretty good at the Wii again.

The stitches are out, he’s back in the pool and we even got a day on the lake yesterday for Father’s day. Lexie was over for most of the weekend… we went to Don Jose’s for dinner with Charon’s dad on Saturday night and met Caty, Mike, Aubrey, Clark, Susan, Tyler and Amanda to celebrate with them. Sunday morning was my time for Dad’s day and then it was off to the lake. We met some friends on their boat and went to the new Wolfe’s on Lake Conroe for lunch… used to be Banana Bay and several other things over the years. Lexie and I had crawfish and it was good!!!

After a long day on the lake we stopped by the cemetery to visit my baby and put out a new flower arrangement. She sure was missed on the boat that day… my first mate that used to keep us all in line and jumping at her every command. It was as good a day as it could have been, but falls short of the Father’s Days of the past… we really do miss her so much.

Last weekend we helped out at a lunch put on for the families staying at TCH… we had tons of food, games and volunteers up on the 16th floor… looked like they all had a pretty good time.

July will continue to be busy for us… going to Dave and Jody’s over the 4th of July as John, Carol and the boys come to town as well. Then I’m off to Asia for 10 days and then back up to Austin for the family boating trip. Wow, I’m tired already and it’s still June!!

Blessings to all and have a great and safe summer… Prayers to those still fighting the good fight….

Love,
The Edgington’s

Monday, June 22, 2009 4:18 PM CDT

Hey folks, just a short note to let you know we are all doing well and trying to beat the summer heat even though summer just started yesterday. It’s already busy as Anthony is still taking tennis lessons, volunteering at the Science Camp and going to Golf Camp too. This all after he managed to visit the emergency room on the very first day of summer vacation. He banged his shin up pretty good on the edge of the pool and had to get five stitches to close it up. That cost him a week and a half of pool and lake time, so he got pretty good at the Wii again.

The stitches are out, he’s back in the pool and we even got a day on the lake yesterday for Father’s day. Lexie was over for most of the weekend… we went to Don Jose’s for dinner with Charon’s dad on Saturday night and met Katie, Mike, Aubrey, Clark, Susan, Tyler and Amanda to celebrate with them. Sunday morning was my time for Dad’s day and then it was off to the lake. We met some friends on their boat and went to the new Wolfe’s on Lake Conroe for lunch… used to be Banana Bay and several other things over the years. Lexie and I had crawfish and it was good!!!

After a long day on the lake we stopped by the cemetery to visit my baby and put out a new flower arrangement. She sure was missed on the boat that day… my first mate that used to keep us all in line and jumping at her every command. It was as good a day as it could have been, but falls short of the Father’s Days of the past… we really do miss her so much.

Last weekend we helped out at a lunch put on for the families staying at TCH… we had tons of food, games and volunteers up on the 16th floor… looked like they all had a pretty good time.

July will continue to be busy for us… going to Dave and Jody’s over the 4th of July as John, Carol and the boys come to town as well. Then I’m off to Asia for 10 days and then back up to Austin for the family boating trip. Wow, I’m tired already and it’s still June!!

Blessings to all and have a great and safe summer… Prayers to those still fighting the good fight….

Love,
The Edgington’s

Tuesday, May 26, 2009 8:44 PM CDT

Hello everyone,

We are doing fine. We had a nice celebration in honor of Carlie’s birthday. We had a gathering of friends and family out in the driveway for chocolate chip cookies, lemonade, and a pink balloon release. Our neighbor, Kathryn, also brought out her guitar and sang “Carlie Raye of Sunshine” for us all. It was sweet and emotional for everyone. We had a beautiful blue sky and released three dozen balloons! Afterwards, a few of us went to Chili’s and then on to bowling.

The following weekend was Anthony’s birthday – we cannot believe he is 12 years old now! He keeps reminding us that he will be a teenager next year. He invited a few buddies over for swimming, shaving cream fights, ping pong and pizza. We gave him a set of golf clubs and signed him up for a Jr. Golf camp this summer. I also played my first round of golf – I really enjoyed it and even parred one hole (and that was even after having to chip it out of the sand trap)!

Our neice, Amanda, wrote this poem for Carlie. It is really beautiful and I got her permission to share it with you all.

Love, The Edgington’s


Carlie Raye

As time went by,
It was your time to fly.
All you did was spread your wings,
And you went high.

From birth till death,
I think of your every breath.
Even though your time came so soon,
You are still with us today during every sun and every moon.

You are my cousin,
You are still mine.
Even if time came,
And you beat me to the finish line.

You are my hero,
Your halo is on.
You fought for so long,
But now your cancer is gone.

I think of you every day and every night,
And look for you in the sky on every cloud in sight.
I hope you watch i hope you see,
But please don't forget to remember me.

Friday, May 8, 2009 7:40 AM CDT

HAPPY BIRTHDAY TO OUR SWEET GIRL CARLIE TODAY!

Oh, how we wish she was here to celebrate her birthday with us. Eight years ago I proudly gave birth to this beautiful, 10 pound, 22 inch girl. She knew from the start she never wanted to be called "little"! She was in control from Day 1 and we just didn't know it yet. It's really hard making plans to honor her birthday when all we want is her here celebrating with us. But I'm sure she is celebrating in Heaven and has got the party started! We are going to do a pink balloon release with the neighborhood kids after school and then a group of us are going to Chili's (where else?) for dinner and bowling afterwards. Anyone is welcome to show up and celebrate with us. I was tempted to make everyone go to one of those "girlie" birthday party spas and have manicure/pedicures which is something she would have like to do, but I thought I shouldn't go that far!

Happy Mother's Day to all you wonderful Moms out there. Our hearts especially go out to those who will be spending Mother's Day without one of their children here by their side.

Have a nice weekend.

Love, The Edgington's

Monday, April 13, 2009 10:40 AM CDT

Hello everyone,

Hope everyone had a wonderful Easter weekend. I feel like it’s been a long time since I’ve written. This Momma Hen just misses her little chickie and it’s just been hard to write anything. Even though we still go about our every day lives doing things, having some fun, laughing, etc., there are times where I don’t want to laugh, have fun, etc, because I just want to sit and “miss her”. It’s like a form of pouting – you know, when you really, really want something you can’t have – but sometimes you can figure out a way to get it – but this is something I didn’t get my way on and there is nothing I can do about it. I have to keep in mind that she is pain free in Heaven. I was thinking the other day about her personality and how she was throughout her treatment. She didn’t want to just sit around and think about her illness, upcoming treatments, doctor’s appointments, etc. She wanted to go to school, play with friends, go to the park, dance, roller skate, swim, anything and everything a typical girl wanted to do. I am sure there were times that many unpleasant thoughts raced through her mind, but she didn’t let that hinder her. I know I am not going to stop missing her, but I need to try and learn a little more from the lessons she taught us. Even Anthony called me out on something yesterday. I think I’ve written about this before… but going through something like this can really make you lose your sense of security in life – I know no one ever knows what is going to happen at any time but this is right in your face. So, I worry a lot more about something else happening and I know that is a big waste of my time and I need to work on that. Lately, Anthony has become quite the tree climber. I keep finding him pretty high up in trees and, of course, I worry that he’ll fall and hurt himself really bad. I don’t just tell him he could break his arm or leg, I tell him he could break his neck and not be able to walk again. Yesterday after telling him to get down once again, he came over and said “Mom, you just need to get over it – I’m not going to fall and die!” Me and my friends just turned and looked at each other – What do you say to that – I guess he had my number! I still don’t want him climbing in trees – we’ve already had a broken bone this year! Okay…on to something else.

We’ve just been doing the normal stuff… Anthony continues his tennis lessons. Mark took him to the park Friday and Saturday to play and Mark said he is definitely improving his skills. He also took a Red Cross babysitting course last weekend and now says he is an official babysitter! While he was in that all day class, Mark and I, along with my inlaws, took the boat out for a spin on the lake. We had a nice Easter weekend. Lexie came over Saturday and we went to lunch, church, and then by the cemetery. We had Grandma and Grandpa Shipley, along with our friends, the Kerbow’s and their Papa and his friend Annette, over for Easter lunch. We had a lot of good food then the guys watched The Masters on TV and the girls and kids played Yahtzee.

We continue to be amazed by people’s thoughtfulness in remembering Carlie. A few weeks ago I got a message from a friend who said her son, Max, wanted to bring me something. Max was one of Carlie’s friends from school. His older brother and sister brought him by the house and handed me an envelope with money and a letter stating he was thinking about Carlie and wanted to do something for her. He told me he wrote some stories and sold them to neighbors to raise money in honor of Carlie. We donated the money to Lunch for Life on Max’s behalf. What an awesome young man and so proud to call him one of Carlie’s friends. His mom, Sarah, and some other friends are running a marathon in Nashville later this month. They asked if they could run in Carlie’s honor and are calling themselves “Carlie’s Angels”. Also, a couple we know through Mark’s work, their 12 year old son shaved his head for St. Baldrick’s foundation on behalf of a 12 year old boy with Neuroblastoma. They said Carlie’s story inspired his choice. These things are so sweet and really touch us. These are also life lessons that teach our children to continue to think about and help other people and grow into caring adults.

The CNCF is holding it’s first bake sale here in The Woodlands. It will be this coming Saturday, April 18, at The Earth Day festival at The Woodlands High School from 10am-3pm. Thank you to my friends that are able to help bake for us! Also in The Woodlands on Wednesday, April 29th, there will be a CNCF night at the Chick-Fil-A in Alden Bridge from 5-8pm. A portion of the sales will be donated to the CNCF.

Our thoughts and prayers continue to go out to all of our NB and other cancer families.

Love, The Edgington’s

Monday, March 16, 2009 8:52 AM CDT

Hi folks, sorry for so long between updates, but things have been kind of busy... so much that I'm going to do the update this time for Charon.

Busy is a bit of an understatement actually, with Charon working now her new job, Anthony churning out projects for school left and right and going to his PT appointments and me... Mark, having two traveling weeks in a row. I guess I should be doing the update. The first week was my annual golf trip with the boys and it was great... we go to Palm Springs to do nothing but golf and eat and I did both of those full tilt, the latter better than the golf. The next week was part work and part play. I visited one of my top suppliers for work and then got to play golf with them in the Sr. PGA Pro-Am golf tournament in Newport Beach, CA. It's a tough job, but somebody's got to do it.

Charon is doing well with her new job and enjoying being back into it I think. She is already up to speed and seems to be on top of it all within a few short weeks. However, if there was a question before on whether I would ever get my office back... that's now been answered! She's still busy with Bible Study, Bunco and Book Club... not to mention keeping Anthony at all his appointments and volunteering at Mitchell. All that and I'm still getting a few home cooked meals out of her too... how lucky are we?

Anthony is glad to be on Spring Break... he let us know that it started last Friday night when he wanted to stay up to 11pm. He used that excuse all weekend and I think he is going to love the week off. Charon has plans for them to go to movies and other activities and I'm going to try to get him out to the driving range now that his hand is getting better. He has already resumed his tennis lessons and is glad to be back at that as well.

Lexie is still holding out hope for a placement into Med School... she's on the waiting list right now, but has decided to re-apply for next year just in case. She's studying for the MCAT again which she will take May 1st and apply in June. She has her 23rd B-day this week and we are going to take her to The Cheesecake Factory for dinner Wednesday night with Troy. Her B-day is actually Thursday, but Charon and I have tickets to see Billy Joel and Elton John together in concert that night, so we are going early. ( I told you we were busy!)

I know I'm missing a lot of stuff to tell you, but Charon is really the social planner of the family and does a much better job of letting you all know what's going on. The one thing I can tell you for sure that I miss is our girl Carlie. I can't believe this much time has gone by and she's not here sharing all the spring-time events that she loved so much. Easter is around the corner and she loved dressing up, hunting eggs and seeing all her relatives that weekend. Please keep us in your prayers along with all our other painfully united friends of the cancer world... we need more positive endings to these stories.

Take care and God bless,

The Edgington's

Monday, March 16, 2009 8:52 AM CDT

Hi folks, sorry for so long between updates, but things have been kind of busy…. so much that I’m going to do the update this time for Charon.

Busy is a bit of an understatement actually… with Charon working now her new job, Anthony churning out projects for school left and right and going to his PT appointments and me… Mark, having two traveling weeks in a row. I guess I should be doing the update. The first week was my annual golf trip with the boys and it was great… we go to Palm Springs to do nothing but golf and eat and I did both of those full tilt, the latter better than the golf. The next week was part work and part play. I visited one of my top suppliers for work and then got to play golf with them in the Sr. PGA Pro-Am golf tournament in Newport Beach, CA. It’s a tough job, but somebody’s got to do it.

Charon is doing well with her new job and enjoying being back into it I think. She is already up to speed and seems to be on top of it all within a few short weeks. However, if there was a question before on whether I would ever get my office back… that’s now been answered! She’s still busy with Bible Study, Bunco and Book Club… not to mention keeping Anthony at all his appointments and volunteering at Mitchell. All that and I’m still getting a few home cooked meals out of her too… how lucky are we?

Anthony is glad to be on Spring Break… he let us know that it started last Friday night when he wanted to stay up to 11pm. He used that excuse all weekend and I think he is going to love the week off. Charon has plans for them to go to movies and other activities and I’m going to try to get him out to the driving range now that his hand is getting better. He has already resumed his tennis lessons and is glad to be back at that as well.

Lexie is still holding out hope for a placement into Med School… she’s on the waiting list right now, but has decided to re-apply for next year just in case. She’s studying for the MCAT again which she will take May 1st and apply in June. She has her 23rd B-day this week and we are going to take her to The Cheesecake Factory for dinner Wednesday night with Troy. Her B-day is actually Thursday, but Charon and I have tickets to see Billy Joel and Elton John together in concert that night, so we are going early. ( I told you we were busy!)

I know I’m missing a lot of stuff to tell you… but Charon is really the social planner of the family and does a much better job of letting you all know what’s going on. The one thing I can tell you for sure that I miss is our girl Carlie. I can’t believe this much time has gone by and she’s not here sharing all the spring-time events that she loved so much. Easter is around the corner and she loved dressing up, hunting eggs and seeing all her relatives that weekend. Please keep us in your prayers along with all our other painfully united friends of the cancer world… we need more positive endings to these stories.

Take care and God bless,

The Edgington’s

Thursday, February 12, 2009 10:59 AM CST

Hello everyone,

Thank you so much for your notes, calls, emails, flowers, etc., last week. We really appreciate all your thoughts and prayers for our family. Lexie came over and went to Chili's for lunch with Mark and I. Carlie would not have been happy because they removed fried cheese from their menu... it saved me some calories though! We also listened to the tape of her service for the first time. We had a few tears and laughs. It was nice to hear everyone's speeches again - everyone did such a great job capturing her personality. I stopped by the grocery store to buy some pink balloons for Carlie and ran across the mom of a girl that was in Carlie's first dance class. I had not seen her since Carlie's service so it was quite a coincidence. She ended up being in line behind me and insisted on paying for those balloons - totally not necessary but very sweet of her. Sometimes those little things that happen just remind you that we are not going through this alone - we have God and good people around us. After Anthony got out of school we went to the cemetary to leave pink flowers and release our dozen pink balloons. When we arrived it was a nice surprise to see a number of visitors had stopped by and left flowers for her!

Anthony had his pins removed from his finger last week and has started physical therapy - yes, physical therapy on a pinky finger! He is doing well and his whooping cough is also getting better.

We have a busy weekend ahead. Mark turns the Big 5-0 this Sunday! His sister, Vicki, and nephew, Zach, are coming in town for a visit as well as our friends Dave and Jody.

Hope you all have a great Valentine's weekend!

Love, The Edgington's

Monday, February 2, 2009 7:34 AM CST

OK, well I guess it’s my turn again to do the update and it’s one I have been dreading for a long time. Here it is, Feb 2nd… one of the worst anniversary dates that we will ever experience… the day we lost our beloved angel, Carlie Raye. I can’t believe it’s been a year, I’m sure no one can. We have had a year of firsts, most of them very painful as they were the first time that we had to experience something without Carlie. The first Mother’s day, her birthday, Father’s day and of course the holidays just past…. they were certainly difficult and less enjoyable without her. We also had some good firsts, Lexie finishing college, Charon and Anthony’s trip to NYC, Anthony moving into the advanced classes in school and our first family vacation to Mexico… all great experiences, just not complete without that little General bossing us all around and making sure we did things just so.

Charon has done a fantastic job keeping up the site, letting you know what we have been doing and trying to share the pain as well as the healing that our family is going through… I am truly blessed to have her as my partner through all of this. I know this day, just as all the others, will be painful for her, but even more so today. I ask that you keep us all in your prayers as we sort through this day and try to remember the good times and sweet memories of when our cute little Carlie was here with us.

We are going to try to get through a recording of the service today… it was such a beautiful tribute to her, we wanted to experience it again. Lexie is coming over and afterwards we are going to Carlie’s restaurant… Chili’s of course. I bet there are some fried mozzarella cheese sticks in my immediate future. :o) From there we will pick up Anthony and go to visit her grave site and bring some pretty pink flowers for her. I’m sure there will be many tears shed, but we will try to take comfort in the fact that our dear little girl is sitting on the lap of our dear Lord and she is forever healed, safe and loved.

God Bless you all,

Love, The Edgington’s
Mark, Charon, Lexie & Anthony

Tuesday, January 20, 2009 10:16 PM CST

Hello everyone,

I keep saying I am going to get around to posting soon and it just hasn't happened. It's been busy so I'm just going to give a quick update tonight. Anthony did end up having to have surgery on his broken finger - had two pins put in it which will stay in 3-4 weeks and then be removed. He did great for the surgery but missed the first three days of school starting back due to pain. He had to go to the physical therapist to have a splint made and that has been a lot more comfortable for him. He's also had to go back for weekly xray and check-ups. Last week he also went for his one year check-up after his broken jaw healed - the oral surgeon said it looked great. The day he broke his finger (New Year's Eve) we had taken him to the pediatrician that morning for a cough he'd been having over Christmas. The doctor gave him a decongestant and cough syrup. It seemed to be getting better but just hadn't completely gone away. He has been having some deep coughing spells that take his breath away for a moment and I just decided it needed to be checked again. Well, the doctor is pretty sure he has whooping cough! He is on antibiodics and can't return to school until next Monday. He actually feels fine, is bored, and just wants to be back in school with his friends. The doctor said children are vaccinated for this by about the age of four but they are starting to see a rise in whooping cough especially in ages of 11-18 where vaccines are starting to wear off. They are now re-vaccinating around 11-12 years old. I have to say I'm a little ticked off that 2009 is starting off this way - nothing we can't handle, but come on!!

We had a really great weekend. We left Friday morning for Uncle Andy's ranch - Mark, Anthony, myself, Lexie and her boyfriend, Troy. Andy and Uncle Clark were there also along with some other friends. The guys did some hunting, we did some shooting at the range, and lots of cooking and eating. On Monday we went up to College Station to get Lexie moved out of her apartment. I recently started doing some part time work from home. So, it's been busy around here lately. I'm hoping for Anthony's whooping cough and hand to heal quickly so we can get back on a somewhat normal schedule before too long. That's all for now.

Love, The Edgington's

Friday, January 2, 2009 5:23 PM CST

Happy New Year everyone!

We had a nice Christmas Eve. We first went to the afternoon church service which was hard for me with all those little girls running around in their pretty Christmas dresses – I really missed buying a Christmas dress for Carlie this year. I am sure she would have picked something to go with her black boots! We then went to Grandma Martha’s and then to Aunt Annette and Uncle Andy’s. It was nice seeing family and friends. We got home around 10pm and got Anthony off to bed to get ready for Santa. We got up early and opened gifts with Anthony and Lexie before leaving for the airport at 8am. We had a really nice time in Cancun with our friends. The weather was warm and sunny and the beach, pool, and resort were great. Anthony and Dominic had so much fun just hanging out together all day – digging in the sand, playing in the ocean and swimming pool, and feeding the stray cats that hang around the resort (which they named them all). We went on a zipline excursion that was also a lot of fun. There were 11 different ziplines that went from tree to tree – I am a little scared of heights so I didn’t like the part of climbing up the steep stairs and getting hooked up to the line but once I was hooked up I was good to go and it was a lot of fun. We got back home Tuesday evening. Wednesday morning we took Anthony to the doctor because he had a cough for over a week and it just wasn’t getting any better so we needed some stronger meds. We were just hanging out for New Year’s Eve and planned on stopping by a neighbor’s house for a bit but we ended up spending two hours in the minor ER that evening. Anthony broke his finger playing football. He will need to see an orthopedic doctor next week to see if he needs a pin put in place. Boys, boys, boys…!!

So, back to Happy New Year. I have mixed emotions about leaving behind 2008. I can’t say that I hope 2009 is a better year for us – what is a better year when one of your children are no longer here with you? I guess I just pray that no other horrible thing ever happens to our family again. Carlie passed away 11 months ago today – our hearts ache today just as they did then. My niece just turned 4 last weekend (Happy Birthday Aubrey!) and I was remembering Carlie was just two weeks shy of her 4th birthday when she was diagnosed. She was so young, innocent, carefree, a bundle of energy. She quickly had to learn all about hospitals, doctors, chemo, radiation, losing her hair, low counts, pokes and pain. She had to stop preschool, dance, going to church, and many other things. I know some people say they like to forget about the bad and only remember the good. I don’t plan to dwell on the bad times, but if I forget all about them I would be forgetting a lot of our time with Carlie. I think it takes some bad times to make people really appreciate what is good and important in life. I still have to remind myself of that everyday. In those bad times, there were so many good things that came from it. We had many blessings and nice things shown to our family along the way. There were many times where Carlie felt great and even got to go back to school, dance, playing with friends, etc. Even when she was in the hospital we played video and board games, did artwork, had visitors, etc. We made new friends going through the same journey we were – people who knew our same thoughts and fears. We saw different sides of friends and family that we had never seen before – and I mean that in a good way! We’ve had to learn to accept help, face fears, hear things we didn’t want to hear, do things we didn’t want to do, and still just try to live our life the best way we knew how to. So, I guess 2008 will go down as a really, really hard year for our family, one full of heartache, but one that will not be forgotten.

Love,
The Edgington’s

Saturday, December 20, 2008 5:48 PM CST

Hello everyone,

It's been a while since I've posted so I will start off by letting you know the bake sale made almost $3000 - isn't that awesome?! Thanks to all those who were able to help us. I also wanted to thank those who've stop by the website and continue to check in on us and for those who left us a note (whether by website, email, phone call, etc.) - nice hearing from you all. As I've said before we could not have endured all this without all of your support.

We've just been trying to get ready for Christmas. Finally got the tree up and some of the decorations around the house. It was just so hard to do it without Carlie but know we need to for Anthony, Lexie and ourselves. Speaking of Lexie, she is now a Magna Cum Laude graduate of Texas A&M!! We are so proud of her. She has several interviews lined up for medical school.

We are looking forward to seeing friends and family during this holiday season and looking forward to our vacation in Mexico.

If we don't post again before the holidays, we truly wish you all a very Merry Christmas and Happy New Year. To all of our fellow cancer families, we are especially thinking of you during this time as well.

Love, The Edgington's

Thursday, December 4, 2008 3:56 PM CST

Hello everyone,

We really enjoyed Thanksgiving and hope you all did as well. We had a nice day with over 20 people at our house and ate lots of good food! It was tough without Carlie, especially the days after Thanksgiving Day when it’s a little more quiet and everybody is doing things to get ready for Christmas. It made me realize that I’m glad we have a trip planned between Christmas and New Year’s… it will keep our time occupied and it will be fun relaxing in Cancun with really good friends. Mark’s family was in town for the rest of the weekend and we went to Old Towne Spring for lunch and shopping on Friday, Mark and Mike hung the Christmas lights on Saturday while Debbie and I went shopping. Vicki and Grandma and Grandpa Shipley came over to visit us again Saturday afternoon. We played Texas Hold’em and Yahtzee as well!

Tomorrow is the bake sale at Texas Children’s Hospital benefiting Neuroblastoma Research. If you happen to be in the area and want to stop by, we’ll be set up on the 3rd floor sky bridge from 10am-2pm. Thank you to those who were able to bake for us!

It’s also that time of year again for the annual Lunch for Life giving campaign. This is an organization for Neuroblastoma research that I like supporting. Not everyone has the means to donate hundreds or thousands of dollars and Lunch for Life is all about a lot of people can give just a little to help make a big difference. The idea is to skip a lunch and donate the money you would spend ($5, $10, or $20) and ask some of your friends to do the same. Feel free to check out their website and read all about their organization. They make it fun for the kids by putting a Christmas tree on their donation page and for every $5 donated they receive a Christmas ornament. Carlie used to get online every couple of days and see how many decorations she had. If you are looking for a place to make a donation this holiday season or just thinking about Carlie and want to do something in her name, please consider donating to Lunch for Life. Let’s keep Carlie’s tree lit up just like she lit up our lives!! (1) Go to www.lunchforlife.org (2) Click “Donate Now”, (3) Make donation in honor/memory of Carlie Edgington (4) Giving Tree code number is 31408 – you don’t have to have this, but it will double the ornaments on her tree. They also have the new 2008 Edition cookbooks for sale for $19.95. There is so much more research needed for this cancer – too many children are diagnosed with this and still relapsing after protocol treatments.

We hope you all have a wonderful weekend.

Love, The Edgington’s

Wednesday, November 26, 2008 10:00 AM CST

Hello everyone,

Things have been going fine here. I enjoyed my weekend in San Antonio with all the girls and I completed the 1/2 marathon - with no medical assistance needed! This past weekend we went to Austin to visit Dave and Jody.

We are looking forward to hosting Thanksgiving dinner at our house tomorrow. Aunt Debbie and Uncle Mike came in town last night and are staying through the weekend with us. Aunt Vicki is flying here today and will be staying with Grandma and Grandpa Shipley. Along with all of them we'll also have my family here - so it should be nice. Lexie will get in town this afternoon as well. She just has a few more weeks left and she'll be graduating from A&M on Friday, Dec. 12th! She has two medical school interviews lined up.

We are sure missing Carlie - especially with all the holiday things starting up. We are so thankful for all the support, love, and prayers we have received this past year from friends, family, and many others that we've never met. Although not enough, we are blessed and thankful for the time we did have with Carlie. I could not be more proud of the daughter we were blessed with. Please join us in keeping our other cancer families in your prayers as well.

Have a safe and happy Thanksgiving.

Love, The Edgington's

Wednesday, November 12, 2008 1:42 PM CST

Hello everyone,

I had all intentions of updating right after Halloween weekend - but you know how that goes. I had a nice weekend with my girlfriends. Anthony and Mark had a great weekend at the ranch. Anthony shot his first deer - a doe and a 9 point buck! He was so proud and excited. I've added a picture to the photo page. Last week I received a call from one of Anthony's teachers - they said he is a really good student, his benchmark tests were good, and they didn't think he was challenged enough in Math and thought he could handle switching to advanced classes. So he made the change and seems to be adjusting well. It's a little more homework which he's not crazy about, but I think he'll do fine. He also qualified for the Fun Run again. Some of the schools in the district get together and do a one mile race - I think it's the top 10 boys/girls in each grade level who want to participate that get together with the other schools' kids to compete together. Anyway - it was supposed to be yesterday after school but has been postponed to tomorrow due to all the rain we've had.

I'm headed to San Antonio this weekend with girlfriends to walk the half marathon we've been training for. Mark and Anthony will hang out here and do guy stuff I'm sure! We are looking forward to hosting Thanksgiving at our house again this year. Mark's two sisters and brother-in-law will be coming in town and we'll also have my family over.

After Carlie passed away, Mark's Admin, Tami, and her husband sent us a lemon tree. She attached a really sweet note mentioning how when life deals you a lemon you have to make lemonade. Check out the picture of Carlie's lemon tree filled with ripe, yellow lemons!

Have a nice week.

Love, The Edgington's

Thursday, October 30, 2008 4:50 PM CDT

Hello everyone,

We have had a pretty good couple of weeks staying busy. Anthony has started the second session of his grief support group. They are working on a memory box. Breanna, from TCH Child Life, also came to visit Anthony last week. She had him write “his story” about his feelings and things he remembers and has dealt with before Carlie’s diagnosis, during her illness, and since she’s passed away. It was hard to read but very proud of him for being able to write down his feelings – I can’t even think of the right word – amazing, unbelievable, etc. – to read/hear the different feelings, thoughts, memories, perspective, etc., that each person goes through as it affects everyone in a different way. A lot of them were the same though… disbelief, shock, love, concern, and he even mentioned how quiet our house is now. She has been on our minds so much lately – I think with the holidays approaching it just makes it even more difficult.

We have had a lot of golfing going on. There was a Sr. Tournament in The Woodlands a few weeks ago. Mark took some time off work and volunteered for a few days and then went and watched the tournament as well – he took Grandpa Shipley out there one day, took Anthony that Saturday and then the three of us went on Sunday. Anthony hung out at the scoring tent and got a lot of autographs on his hat. I signed up for some basic golf lessons so I can learn the lingo, the rules, and how to hit the ball so we can enjoy some time together on the range. Last Saturday, Lexie and her boyfriend, Troy, met us at the range and we all hit balls for a while and then went to Grotto for a nice dinner. On Sunday, we joined our friend Connie, a Lymphoma survivor, and her family/friends and participated in the Light the Night Walk in Market Street. Last weekend we also took Anthony and his friend, Michael, to The Woodlands High School football game. That was fun except I just had one of those moments where out of the blue you find yourself trying so hard not to cry – it was when the drill team girls came out to dance. I told Mark I know this is crazy because I don’t even know if she would have continued with dance – he said knowing her she may have wanted to be on the football team with all the boys! You know us Mommas start planning all kinds of things for our kids as soon as they are born – so for us Angel Moms (and Dads too) those things can be hard.

Anthony and Mark will be leaving town tomorrow for the weekend – yes, they are ditching me on Halloween! Anthony had already been thinking about not trick or treating this year and then when the family guy hunting weekend got scheduled at Uncle Andy’s ranch – that’s all he needed to hear to skip Halloween and go hunting with all the guys! I think he is ready to get his first deer although I know he has mixed emotions about that because he loves animals so much. I really want them to go and have a good time. Instead of staying home without my family, I am going to go hang out with some of my single girlfriends. Another holiday to get through without our girl. The training for walking the half marathon is going good – we’ll be doing our 9 mile walk this weekend, 10 mile next weekend, and then the 13 mile half marathon on Nov. 16th.

If you happen to be in the Spring area on Saturday morning, Nov. 1st, there will be a garage sale benefiting the Children’s Neuroblastoma Cancer Foundation. The address is 4726 Rivertree Lane. Also, the memorial bake sale benefiting Texas Children’s Hospital has been rescheduled to Dec. 5th.

I’ve changed out the pictures again on the photo page. Have a great weekend.

Love, The Edgington’s

Friday, October 10, 2008 10:45 AM CDT

Hello everyone,

It has been a while since I’ve posted… still find it hard at times on what to update about. There are some days if I were to post it would probably all be depressing! Don’t take me the wrong way – we are not spending our entire days locked inside our house – just dealing with the feelings of grief and loss as they come and go. Carlie is always on our minds and in our heart. As the saying goes… I would rather have loved and lost than never to have loved at all. I can’t imagine our lives without knowing even a glimpse of that girl! Sometimes it just feels like we were teased – I couldn’t wait to see what crazy, sassy things she was going to do as she grew up. I guess God had bigger and better things planned for her than entertaining us all here. I have the hugest lump in my throat just sitting here writing about her so I am going to move on in the update before I hit the delete key and start over!

We had a really good time last weekend. We went with the Kerbow’s to their property in Madisonville. We always enjoy a fun, relaxing time when we go (well, Mark probably doesn’t relax as much as he’s always helping Randy do work around the property – but he enjoys that kind of stuff). We rode 4-wheelers and went around and put corn in all the deer feeders, shot BB guns, played Yahtzee, grilled dinner on the fire, made S’mores, etc. And, of course, had beautiful weather! Besides that we’ve just been doing all the regular stuff…. School, tennis lessons, we enjoyed National Night Out with a neighborhood block party on Tuesday, and I spent the day with my mom shopping on Wednesday. Tonight, Mark, Anthony and I are going to go hit some golf balls and have dinner at the golf course.

I am not a person who likes to exercise very much – I really wish I did because then I could enjoy all the eating out that I like to do and not worry about gaining the weight as much. But, I did succumb to pressure and sign up to walk (not run) a half marathon in San Antonio on November 16th with a group of friends. I think I didn’t want to write about it before because then there would be no way I could try to back out of it if I actually put it in writing! For those of you who run, I know walking 13.1 miles probably seems like nothing – but for me who really doesn’t do anything in the way of regular exercise, it seemed overwhelming at first. But, we’ve been walking regularly and doing a long walk on the weekends, so I do think that I might actually be able to build up to the 13 miles. There is supposed to be rock bands playing along the route so if I need a break, not a bad thing to stop for a few minutes and listen to some good music! Anyway, wish me luck! I think I finally told myself I’ve done far more difficult things in life – I should be able to do this.

I finally put some different pictures on the photo page…. Carlie loved Halloween so I put some of her costume pictures up from previous years.

Have a great weekend! Love, The Edgington’s

Thursday, September 18, 2008 11:04 AM CDT

Hello everyone,

I hope everyone is doing okay after Hurricane Ike. We finally got our power back on last night and we had no major damage. We are so thankful we had the cooler weather since we had no electricity. We rode the storm out in our house and had our friends, The Kerbows, stay overnight with us - we thought safety in numbers! We ate, played a lot of Yahtzee, watched the TV coverage and finally got the kids to go to sleep around 11pm. And if you know the Kerbows - they have no problem sleeping - so, Randy and Alison slept comfortably in our guest room throughout the entire storm while Mark and I seemed to be awake during most of it watching and waiting!

We live in a great neighborhood and have great friends on our street. Everyone was busy helping each other out and we had lots of cookouts and driveway parties. All the kids just ran and played all day long! They are excited to be out of school all week - although they are not going to like making up the extra time and work.

Three years ago Rita struck right after we brought Carlie home from her first transplant. It was very scary because she was on IV nutrition so we needed supplies delivered, medicine had to be kept cold, she needed to have counts checked, dressing changes, etc. To our fellow cancer families I just wanted you to know our thoughts were with you during this time - we know how difficult the everyday life is without adding these worries to it.

We are just hanging out the rest of the week trying to catch up and clean up after the storm. Mark is leaving today to go to the Ryder Cup golf tournament in Kentucky with some friends - a trip he's had planned for about a year so I am happy that everything worked out for him to still be able to go. He does such an awesome job taking care of us and our home all the time, and even more so during times like this - I want him to go have a good time.

Love, The Edgington's

Tuesday, September 9, 2008 2:23 PM CDT

Hello everyone,

Just a quick update... not too much new going on. I will start by telling you something that you already know.... We really, really, really, miss our girl! It has been seven months since Carlie passed away and it just doesn't get any easier. I just miss that little bundle of energy jumping into my lap for a kiss and a hug, I miss those looks she would give with her hands crossed cutting her eyes at you, I miss her standing there with her hands on her hips bossing Anthony and other kids around that she thought were being out of line, I miss her wanting to be outside and play ball, ride her bike, and helping her roller skate around the cul-de-sac, I miss going to dance class, shopping for cute clothes and shoes, and for those horseback riding lessons she planned to take when she turned 7, and so much more. I hate that I have to organize things that she had made, pictures of her, rememberances from her services, to help keep her spirit and presence alive in our home... she will always be present and alive in our hearts.

Other than that.... Anthony is doing good and seems adjusted to intermediate school and trying to get the whole locker thing down. Mark is in Asia this week and so far our week has been uneventful which is always good. Lexie is back at school for her final semester. We did make a decision to travel this year during the holidays. We are going to go to Playa del Carmen between Christmas and New Year's. We had several people suggest that it might be good to change up your plans the first year during the holidays. Mark turns 50 next February and we talked about a trip with our friends Dave & Jody and the Pavetto's to celebrate. Since everyone is off for the holidays we thought that was a good time to all travel together so we booked the trip - something to look forward to!

Our friend, Lara, has scheduled another Bake Sale at Texas Children's Hospital this Friday with all the proceeds going directly to TCH cancer research (unless Hurricane Ike decides to pay us a visit then we'll reschedule). But, if you're in the area and in need of some baked goods we'll be set up on the third floor walkway between hospital and clinic building.

Have a good week.

Love, The Edgington's

Tuesday, September 9, 2008 2:23 PM CDT

Hello everyone,

Just a quick update... not too much new going on. I will start by telling you something that you already know.... We really, really, really, miss our girl! It has been seven months since Carlie passed away and it just doesn't get any easier. I just miss that little bundle of energy jumping into my lap for a kiss and a hug, I miss those looks she would give with her hands crossed cutting her eyes at you, I miss her standing there with her hands on her hips bossing Anthony and other kids around that she thought were being out of line, I miss her wanting to be outside and play ball, ride her bike, and helping her roller skate around the cul-de-sac, I miss going to dance class, shopping for cute clothes and shoes, and for those horseback riding lessons she planned to take when she turned 7, and so much more. I hate that I have to organize things that she had made, pictures of her, rememberances from her services, to help keep her spirit and presence alive in our home... it was always be present and alive in our hearts.

Other than that.... Anthony is doing good and seems adjusted to intermediate school and trying to get the whole locker thing down. Mark is in Asia this week and so far are week has been uneventful which is always good. Lexie is back at school for her final semester. We did make a decision to travel this year during the holidays. We are going to go to Playa del Carmen between Christmas and New Year's. We had several people suggest that it might be good to change up your plans the first year during the holidays. Mark turns 50 next February and we talked about a trip with our friends Dave & Jody and the Pavetto's to celebrate. Since everyone is off for the holidays we thought that was a good time to all travel together so we booked the trip - something to look forward to!

Our friend, Lara, has scheduled another Bake Sale at Texas Children's Hospital this Friday with all the proceeds going directly to TCH cancer research (unless Hurricane Ike decides to pay us a visit then we'll reschedule). But, if you're in the area and in need of some baked goods we'll be set up on the third floor walkway between hospital and clinic building.

Have a good week.

Love, The Edgington's

Thursday, August 28, 2008 11:16 AM CDT

OK, my turn again… need to give Charon a break this week as it’s been a tough one. School started Monday and that was a strong reminder that we don’t have a little girl starting 2nd grade like we should. Anthony got off to 5th grade with no problems though… new school, new time and lots of new adventures to tackle.
Charon and I went to meet his teachers last week… he has 4 now and moves to different classrooms throughout the day. He has a homeroom and a locker… all the big kid stuff that I don’t remember having until Jr. High. He likes all his teachers (they are very nice) and he has already started with the homework of course. Based on what he had last year, this year is going to be busy for him and us!!

Anthony is back to his weekly tennis lessons… he loves tennis and is pretty good at it too. We have been getting the ping-pong table out again, inspired by the Olympics… we both enjoyed watching that and trying to keep up with how fast the ball moves and the points are scored. I was pretty much a couch potato during the whole two weeks and had TV’s recording in three separate rooms to get it all… we all enjoyed watching it this year.

Dave & Jody were in town this past weekend to visit and to attend our old Compaq group Poker Party hosted by our friends Jim and Sandy in town. It was great to see everyone there and we had great food and drink while we watched Charon and Jody take home most of the winnings from everyone. We had a good visit with them and got a chance to go by the grave-site as well as meet up with my parents for lunch…. Lexie was there too!

Last big weekend coming up and we will be spending most of it with Grandma Martha, Clark and his family and Catey and her family, working on some projects for Grandma and having a cookout on Monday at Clark’s house. We hope to get out on the boat on Sunday, but that might be determined by the imposing hurricane that’s supposed to be on it’s way… who knows?

I have to travel to Asia again and will leave late next week for 8 or 9 days… hopefully Anthony will stay off his bike and skateboard while I’m gone and not send Charon to the emergency room again… keep us all in your prayers for that!

Please continue to pray for our other NB families and have a safe and enjoyable Labor Day Weekend…

Love, The Edgingtons

Saturday, August 16, 2008 8:57 AM CDT

Hello everyone,

Hope everyone is enjoying the remainder of their summer before school starts back up. We got the biggest parts of our kitchen remodel/new carpet completed - just a few small things left - so now I feel like I'm ready for summer to start! But, just a week left before Anthony starts back to school. He will be going to intermediate school this year - 5th grade. Anthony started orthodontics and got an expander put in the roof of his mouth on Thursday. It is making it a little difficult to eat and talk but he is quickly adjusting to it.... maybe I need to get one of those?!!

Anthony and I wanted to spend some time with Grandma Martha before school started so we went and spent the night with her Thursday. We went to play Bingo that night which Anthony thought was really fun - he said it would have been more fun had he won. On Friday we decided to go to the museum and see an Imax movie, Planetarium, and the Geopalooza exhibit. We had a nice day.

Some of the cancer patients and families we have met along the way are having some difficult times right now and then there are others who are doing really well - we continue to keep them all in our thoughts and prayers. We know how tough this road is. Have a wonderful week.

Love, The Edgington's

Tuesday, July 29, 2008 7:47 PM CDT

Hello everyone,

We had a good weekend. Mark and I went out for dinner to celebrate our 15 year anniversary! Last year we said we were going to go on a trip to Vegas or some friends asked if we wanted to join them on a wine country trip in California – those things sounded good last year, but I was just not ready to go out of town and leave Anthony when it came down to it. I know many of you may not understand my thinking, but going through this tragedy makes you feel so vulnerable and afraid that something else may happen. Your whole sense of security in life is shaken – not that we all feel secure, we know anything can happen at any time to anyone – but when you have had something like this happen it is right there in your face every day when you wake up. Okay… back to our weekend! Mark and Anthony went up to college station to help Lexie and Claire move out of their 4 bedroom apartment to a 2 bedroom (two of their roommates graduated in May – yeah Jamie and Christina!) Lexie and Claire will graduate in December. When Mark and I got married Lexie was just 7 years old – I can’t believe she is about to graduate college and hoping to get accepted into med school! When Mark and Anthony got back in town we went to see the new Batman movie – pretty cool.

I have a couple of random things I would like to mention. First, I have never mentioned Carlie’s gravesite before because it just seems unbearable to think about much less write about. We finally ordered and received her marker late June. We put some flowers and butterfly emblems on it along with “Forever our Raye of Sunshine”. It has a vase attached so we can put fresh or artificial flowers in it. We occasionally stop by for a visit and take fresh flowers. The first time we took flowers you could tell we didn’t know “the ropes”. We showed up with flowers only – no scissors to cut the stems, no water for the vase, etc. We were looking around trying to figure out where we could get some water when this nice family (Mom, Dad, Daughter & Son-in-law) came over and introduced themselves, let us borrow their scissors, and use their empty bottle to go get water. They had recently lost their college age daughter in a car accident. You immediately feel an instant connection with these families you meet and know their sorrow. On my list of things to do I have been meaning to get an artificial arrangement but have kept putting it off – first time is the hardest I imagine. Some very thoughtful person left an artificial arrangement in her vase. We don’t know who did that but we really appreciate it!

I know I have mentioned in the past about the Conquer Childhood Cancer Act – asking people to write their local senators encouraging their support. The bill passed the House of Representatives June 12th and the Senate July 16th. Today, President Bush signed it into law! The bill authorizes $30 million annually over five years for pediatric cancer clinical trial research, creating a national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for these children and their families. This is huge for pediatric cancer. Many thoughts run randomly through my mind on a daily basis (not just about cancer)! I have often thought how fortunate we are to live in a time where we have vaccines for polio, measles, mumps, even chicken pox – where many years ago people died from these diseases. Those thoughts ran through my head during Carlie’s illness but to the opposite. I thought I can’t believe there is not going to be something to help her in her lifetime. I just hope someday in the future there is a parent that can say how fortunate they are to live in a time where they have a vaccine or easy treatment/medicine for their child with cancer!

Thank you to those who signed the petition I mentioned in my previous entry. If you haven’t and still want to, here is the information again:


We have met a number of people through the hospital, clinic, etc., that are doing things to help funding and research for pediatric cancer. Just like Lunch for Life – so many of you have helped by donating to this worthy cause for Neuroblastoma cancer research. There is another effort being made that I would like to pass the info on to you.
Please consider signing a petition at the following website:

www.thepetitionsite.com/1/CureChildhoodCancer

There was a 14 year old TCH cancer patient named AJ that passed away this past January. His father is working hard to bring awareness and raise the bar on childhood cancer research. He is diligently trying to get one of the major TV networks to produce a one hour special to raise awareness and funding for childhood cancer research. He has created a petition with the goal of gaining one million signatures to help his efforts in challenging ABC, CBS, NBC, CNN and Fox Networks to produce the show. They are not asking for any donations – just signing the petition. Your contact information will not be used in any other way. I would also ask that you consider forwarding this to your contacts as well... Every signature counts, every effort for pediatric cancer counts!!

Love, The Edgington’s

Thursday, July 24, 2008 3:41 PM CDT

Hello everyone,

We had a really nice Lake Travis vacation! We rented a house on the water, in a cove so it was just perfect for boating and swimming. Anthony did just fine with not being able to get under the water because of his burst ear drum… he was still able to float in the water and hang out around the shore and on the boat. He found a lot of snail fossils on the shoreline of our house and he has become an awesome first mate on the boat. We met up with a number of friends on the lake, met some new friends, and Dave, Jody and her mother came and visited with us as well. I was immediately reminded of Carlie’s absence and a really cute Carlie story as soon as we stepped out the back door of the house. There was a hammock hanging between the trees. Twice before we rented another house on the lake with a hammock. All the kids loved playing on the hammock. One day Carlie came outside and saw Uncle Andy on the hammock reading his book. With her hands on her hip, she said “that boy is on my hammock” and asked him to get off so she could have a turn. You all probably know by now about Carlie’s spunky, outspoken, tell-it-like-it-is personality! Uncle Andy did not immediately jump up and let her have her way… I think he politely told her he would be done shortly and then he would let her have a turn. I think she respected him standing his ground with her and it was truly pure love after that! She absolutely adored him and pretty much never gave him a break from holding her, playing with her, or sitting next to her when he was around after that.

We enjoyed this past weekend as well. Our friend, John, was in town for business so he and Mark drove up to Austin to visit Dave and Jody. Anthony went and spent the night with Papa and Gram and did some fishing. Two of my friends came over and spent the night and we did some shopping and dining out!

We are back on the kitchen remodel. It is a mess this week with the new tile floor and backsplash being installed… new carpet will be next. I know we are really going to enjoy it when it’s done. Anthony has been going to art camp this week. He is creating a sea eagle – first a sketch, then a clay model, then a paper-mache version. I told him he needs to remember how much he is enjoying this camp so when next summer rolls around he won’t say No! to signing up for things he enjoys!

We have met a number of people through the hospital, clinic, etc., that are doing things to help funding and research for pediatric cancer. Just like Lunch for Life – so many of you have helped by donating to this worthy cause for Neuroblastoma cancer research. There is another effort being made that I would like to pass the info on to you. Please consider signing a petition at the following website:

www.thepetitionsite.com/1/CureChildhoodCancer

There was a 14 year old TCH cancer patient named AJ that passed away this past January. His father is working hard to bring awareness and raise the bar on childhood cancer research. He is diligently trying to get one of the major TV networks to produce a one hour special to raise awareness and funding for childhood cancer research. He has created a petition with the goal of gaining one million signatures to help his efforts in challenging ABC, CBS, NBC, CNN and Fox Networks to produce the show. They are not asking for any donations – just signing the petition. Your contact information will not be used in any other way. I would also ask that you consider forwarding this to your contacts as well... Every signature counts, every effort for pediatric cancer counts!!

Love, The Edgington’s

Thursday, July 10, 2008 5:02 PM CDT

Hello everyone,

I would like to start by asking you to please keep our friends, The Williams Family from Dayton, in your thoughts and prayers. They are a fellow TCH Neuroblastoma family. Their amazing 5 year son, Ryan AKA Batman, passed away last night with his loving parents right by his side. We have felt so blessed to have been able to get to know this sweet family these past few years. They were one of the families that went with us last October to the Faust Squirrel Creek Ranch. Carlie loved playing with his big sister, Hayley, at the ranch... they were giving TCH staff members makeovers and they made up cheers together with Breanna and Elle (Hans' big sister). Ryan had such a spunky personality and he loved the ladies!! He once told his Dad they were like putty in his hands! I feel like God gives these kids such strong personalities to be able to handle what they have had to endure. Please keep them and our other cancer friends in your thoughts and prayers.

We had a nice 4th of July. We went boating with The Kerbow's on Lake Conroe. We got out there early and beat the crowd, did some tubing, had lunch on the lake, and got out of the lake before the rain came. That evening we enjoyed a cookout at my aunt and uncle's and watched the fireworks. I just wished our little firecracker (oops - forget I said little) was there with us! Saturday morning we went with some friends to the driving range to hit balls and have lunch. We had a good time and I even hit golf balls for the first time for about an hour - I really enjoyed it as well (except for the heat!). We are headed out for Lake Travis tomorrow. We are looking forward to that. Unfortunately, Anthony complained earlier today of his ear hurting. I took him to the doctor and he has an ear infection and a burst ear drum and is really having pain this afternoon. He started antibiodics, ear drops, and motrin for the pain. Hopefully, the meds will kick in and he'll start feeling better quickly. He will not be able to get in the water though - which really stinks when you are taking a 3-day vacation to a beautiful lake! He made no complaints about it though - he can float in the water as long as he doesn't go under. Floating in the lake does sound relaxing!

Have a wonderful weekend.

Love, The Edgington's

Wednesday, July 2, 2008 8:05 PM CDT

Hello everyone,

I know I have been so bad and not updated since before Fathers Day! We had a nice Father's Day weekend. Anthony gave Mark a new baseball glove (they have been playing some games with a group of dads and kids). We also gave him the Indiana Jones DVD set and a movie gift certificate so he and Anthony could go see the latest one - which they did that week. I had mentioned on the website before that Breanna from TCH childlife had been coming out visiting Carlie and doing some art projects with her. One of the things she did was brought out some stuffed dolls and was having Carlie use markers to color them like each of her family members and then write something about them or things they liked on the back. She only got hers and Mark's done before taking a break from that project but was never able to get back to it. Although I knew it was going to be sad for Mark, I saved those to give to him on Father's Day. He did not know she had done them. On the back of hers she wrote "Cheese Bread!" - which she loved to eat! On Mark's she wrote: "I love you Daddy!, Sorry! (she loved to play the board game Sorry), and Snuggle (she loved to snuggle on his lap at night). Mark was very touched by these and they are on his night stand next to his bed. I can't believe it's been five months today since she passed away. I have to say I think the last 3 weeks have been the hardest for me personally. I really can't put my finger on one particular reason, I guess it's just the reality of her loss setting in. There is this void that nothing or no one else can fill - just trying to get through it one day at a time. I was thinking about her a lot on the plane ride home from New York knowing I was getting back to reality. I had a dream with her in it that night and she told me to tell Daddy that the house looked good! Mark had taken vacation days and did a lot of things around the house. When I told Mark about it he reminded me that she was always good about telling him how nice something looked after he did it - yardwork, etc. He also told me how lucky I am to have the dreams I have had with her in them. I actually woke myself up telling her "I love you" before she disappeared. Okay, so I have really opened up and shared those thoughts with you all so I am going to move on to something else now...

We had such a great time in New York! Anthony loved every bit of it! We saw Lion King, Yankees vs. Reds, NBC studio tour, Top of the Empire State Bldg, Statue of Liberty, Ellis Island, Natural History Museum, double decker red bus tour, lunch at Serendipity, and so much more! Lexie had a lot of fun with her friend, Brittany, as well. They even got to go to a Blondie concert.

Anthony seems to be having a good summer. I think he's getting a little bored but he won't admit it often because he thinks I will sign him up for a camp which he doesn't like to do. He is still taking tennis lessons once a week and he will be doing an art camp in a few weeks. Most evenings all the kids on the street are out playing freeze tag or hide-n-seek. Next week we'll be taking our boat for a 4 day trip to Lake Travis with Grandma and Grandpa Shipley - we are looking forward to that. Our kitchen remodel is still in progress - so far, we love it but more work is to be done!

Thanks for the nice notes on the website and for continuing to check in with us. We really appreciate all of you.

Love, The Edgington's

Thursday, June 12, 2008 10:00 AM CDT

Hello everyone,

It feels like it's been so long since I updated that I cannot remember what all we've been doing! Anthony is out of school - he had a fun last week of school with many activities and the school had a "clap out" at the end of the day for all the 4th Graders since they will be off to Intermediate school next year. Basically, the students, staff, and parents line the hallways of the school while all the 4th graders parade through the hallways as we cheer them on. It was a little bittersweet knowing that our elementary school days are over. Mark picked up a snorkeling set from Academy to give to Anthony as a graduation gift - he's been having fun with that in the pool. He went with his friend, Michael, to spend Saturday night at their townhouse on Lake Conroe. They did some boating and tubing. Mark and I got up early Sunday morning and got our boat out and met up with Anthony, Michael and his family. We hung out on the lake, watched the kids tube, and then went to a restaurant on the lake for lunch - we had a nice time.

Our kitchen remodel has started today. We have received some of our new appliances in and the granite is being installed today and tomorrow. Next up, we need to decide on new tile and backsplash. This is not necessarily my idea of a fun project, but I'll be so happy when it's done and to have a new, updated kitchen! Another thing we are really looking forward to is a trip to New York next week. Anthony, Lexie, and I are going with my friend, Brenda, and her son, Trace to New York next Thursday. One of Lexie's good friends lives and works in NY so she is going to hang out at her place and do their own NY thing (which I am sure will include shopping and some nightlife with maybe a little sightseeing!). We are going to stay at a hotel in Times Square, we have tickets to The Lion King and to a Yankees baseball game and will be hitting all the major sightseeing locations! Since I've had a couple of girls' trips to NY already, I should be able to forego shopping and fine dining to gear this trip to the kids - it is going to be awesome! Mark is going to stay home and hold the fort down. He already informed me that he's taking vacation days to do home projects and maybe some golf.

Even though we have all this busy-ness and things to be doing, we are still just at a loss without our girl. Our summer days are usually more noisy around the house with kids playing, fighting, being bored, having friends over, etc. On another NB friend's website, the mom referred to a Nike poster she saw that said "There is no finish line" and related it to this disease. I have to agree - even when you lose your child to this disease there still isn't a finish line. Your thoughts, worries, and things you deal with just change.

We are looking forward to Father's Day weekend... another milestone to get through. Lexie will be with us for the weekend. We'll be meeting Papa and Gram Carruth, Clark and Susan, Catey & Mike, and cousins for dinner on Saturday. Grandpa & Grandma Shipley and Grandma Martha are coming over Sunday for a cookout.

Thanks for your continued support. Love, The Edgington's

Wednesday, May 28, 2008 11:50 AM CDT

Since Charon always gets a chance to update you on all that goes on in our lives, I thought I should take a shot at it since she is a little over-loaded with activities this week.

Let’s start with Happy Birthday to Charon… it was last Friday and we all jumped on a plane and went to our close friends house in Wichita, KS. John, Carol, Giovanni and Dominic were all geared up for our visit and showed us a great time. Dave and Jody came up as well, arriving later that evening in time to light the candle on the cake and sing happy b-day to Charon. The boys got up the next morning for a round of golf, while the ladies disappeared to the spa for massages… what a treat for both! We had lunch and then took the boys to play tennis at their club, joined later by the ladies for a nice visit out on the deck outside their clubhouse. Dinner plans were made (ordered in pizza, we were all tired) and back to the house we went. The younger boys all played in the basement on the awesome video game setup Johnny has… it was loud and cool… while the adults sipped wine and reviewed plans for the next day.

The next day was Race Day for those of you from around the Indiana area, otherwise known as Memorial Day. The Indy 500 takes place in Indianapolis and I was just setting it up to tape when Anthony came screaming into the room. HELP… Get some rags, I think Dominic has broke his nose!! Sure enough… a swing they had been playing on had hit him in the nose and off to the emergency room they went. We had planned to go to the zoo, but instead stayed home and close to the phone to hear how he was doing at the hospital. Turns out he broke one bone in his nose and the occipital bone under his right eye. He came home a couple hours later, ready to play like nothing ever happened and it didn’t seem to bother him much the rest of the weekend. He goes back later this week for a follow-up with a specialist…. We hope all turns out fine for him.

That night we cooked out on the grill and set out in their beautiful backyard from 4pm until the wee hours… it was really nice and relaxing. The following morning Johnny made his signature breakfast, egg-in-a-boat and some sausage and we visited with Dave and Jody before they left to head back to Austin… they were driving. It was a great visit with all our friends and a truly needed relaxing time for all of us. We are so very lucky to have friends like them and we cherish it greatly.

Now back at home… Anthony is back in school for just a few more days and Charon and I are going nuts picking out materials to redo the kitchen. We have been checking on our NB friends and their progress; please continue to pray for them as we do.

Have a nice day… The Edgington’s

Wednesday, May 14, 2008 2:08 PM CDT

Happy Birthday to Anthony today!! Anthony is 11 years old today - or as he said this morning - I'm a decade plus one year today. Hard to believe my first baby is 11 - I'm feeling a little old! He wanted me to bring Taco Bell lunch to school today and cupcakes to share with his classmates. After school he invited some boys to go to Main Event to play laser tag and video games for his birthday. Last year at one of his friends' birthday party, the boy asked for the kids to bring donations for the animal shelter instead of gifts. Anthony thought that was pretty cool and said he wanted to do that for his birthday. He remembered that and told me he had a lot of toys and would like to ask for animal shelter donations instead of gifts. I thought that was awesome. He did say he would still like a gift from us... I think we can handle that! I have to say we are so proud of Anthony. He is such a good person, kind, and compassionate. I'm always told at his school what a great student he is, very well behaved, has good character and is always helpful.

We made it through Mother's Day weekend. I had already decided to skip church that day. Church can be emotional as it is already so I knew I would just be asking for trouble if I went on Mother's Day. Grandma and Grandpa Shipley came over for a visit and then we went out to lunch together. Mark had to leave that afternoon for a trip. Anthony and I took a really nice bike ride through the George Mitchell Preserve - he loved doing that and already wants me to take him again. Although I really missed my girl, I had a nice day with Anthony. Last Mother's Day, Mark took Anthony and Carlie to Build-A-Bear and had them both record "Happy Mother's Day, I love you" messages in their voice to put in the bear. I have to admit that I listened to that a number of times that day so I could hear her voice. Lexie came over Monday before heading back to school and we had a nice lunch and visit together. I couldn't ask for a better step-daughter than Lexie - she is just one of my own!

I am happy to report that the bake sale raised over $2500. Isn't that amazing for a bake sale?! We are so appreciative of Lara for organizing this and to everyone who was able to help. Lara got the devastating news that day that Hans' had relapsed but she continued on helping with the sale. Hans' is getting ready to start new treatment so please keep them in your prayers as well as our other NB families facing difficulties right now.

Thank you again for all your notes, prayers, gifts, cards, flowers, etc., that you have extended to us this past week for Carlie's birthday and Mother's Day.

Love, The Edgington's

Thursday, May 8, 2008 7:50 AM CDT

Happy Birthday to my Sweet Pea!! Mommy, Daddy, Lexie, Anthony, Rocco, and so many other family and friends love and miss you so much!! I know you are celebrating in Heaven doing all the things you love to do!

I cannot believe seven years ago I had the amazing blessing of giving birth to our 10 pound, 22” beautiful blue-eyed, dimpled girl! Sometimes it just doesn’t seem right that we don’t get to continue the blessing of having her here with us. All year she had made several plans for when she turned seven. She told me (she didn’t ask me) that she was going to take horseback riding lessons. I can’t believe she even thought she needed to take lessons – after all, she had already rode horses several times and by her standards she was already a “horse rider” and knew what she was doing. I absolutely loved her self confidence. As I mentioned last week, she wanted to have a skating party for her birthday. Last Saturday about 18 of us went skating for about two hours and then went to have dinner at Dosey Doe’s. We really had a fun time skating – we didn’t just sit on the sidelines and watch the kids skate – we all skated, we had a few falls, we had a few laughs, a few of us may have shed a tear or two, and Anthony won the race for his age group!!

Yesterday after school, we had a lot of the kids from our street over along with a few other friends. We had lemonade, chocolate chip cookies, had a pink balloon release in honor of Carlie’s birthday, and we had all the kids paint ceramic tiles so we can make a beautiful bench to put out in the yard. The kids painted such cute tiles – flowers, rainbows, sunshines, butterflies, etc. – I can’t wait to see how the bench turns out. Thanks to my wonderful friends for helping out.

This morning, Mark got a call from Lexie about 6:20am. She and some of her friends were lounging outside her townhouse watching the sunrise in honor of Carlie’s birthday – isn’t that awesome?! What, you say – college kids up at 6am?? Well, I do believe they had been celebrating finals being done and just decided to stay up, talk, and wait for the sunrise.

This afternoon we plan to stop by the cemetery and then have dinner at Chili’s. We always let the kids pick where they want to go for dinner on their birthday and I am pretty sure Carlie would have picked Chili’s. She loved their fried cheese and pizza!

Tomorrow I am helping out with a bake sale at Texas Children’s Hospital. Our friend, Lara (Hans’ mom), organized the sale. All proceeds will go to Neuroblastoma research at TCH through Lunch for Life. Thank you to friends and family who have offered to bake something for the sale… we really appreciate it! We feel it is necessary to continue raising money for NB research. Someday the treatment has got to get better to fight this cancer. Too many of our children are relapsing or losing their life to this disease. Please say an extra prayer for our TCH friends who are facing relapse and new treatment decisions and for continued prayers to those with stability and NED (no evidence of disease!).

Thank you for your continued thoughts, cards/notes, and prayers for our family, especially with this difficult week of Carlie’s birthday and my first Mother’s Day without my Carlie girl.

Love,
The Edgington’s

Thursday, May 1, 2008 7:40 PM CDT

Hello everyone,

Hope everyone is doing well. We are doing fine. We've been enjoying having Grandma Martha staying with us this past week - she had some surgery and is recouping at our house - she is doing fine. Tuesday evening we went to the final get together for the grief support group we've been taking Anthony to. They had a social get together with refreshments, music, a speaker, butterfly art project, and then ended it with an actual butterfly release in honor of our loved ones. It was very nice. Anthony really enjoyed it and said he would like to attend again in the fall.

Lately, Anthony has really been into playing ping pong and tennis. We got him a new ping pong table as an early birthday present and he's been having fun with that. Yesterday, I took him to his first tennis lesson - he really liked it and is looking forward to continuing that. He played soccer for 5 years and decided to quit about 2 years ago and this is the first time he's been interested in any kind of lesson since then.

Carlie's birthday is next Thursday, May 8th. As soon as she turned 6 last year, she started planning that her 7th birthday would be a roller skating party. So in honor of her birthday, we are going roller skating this Saturday. I am sure it will be a little emotional but I feel like she would be mad at us if we didn't go! If you knew Carlie, you could picture her with her hand on her hip giving us that look! Dave, Jody, and Lexie are coming in town and taking on the skating challenge with us along with a few other friends (hopefully there will be no broken bones).

Thank you all for your continued support and prayers.

Love, The Edgington's

Sunday, April 20, 2008 3:08 PM CDT

Hello everyone,

I know it's been a while since I've updated the website. Lately, my memory has been terrible so I don't remember what all we've been doing! I think for so long we've had to remember so many important things and details... appointments, medicines, testing, etc., etc... now my brain just needs a vacation. The good day/bad day thing continues on but we have been keeping busy.

We have had a nice weekend. Lexie came in town Thursday night and spent the night with us. She had her MCAT testing on Friday morning. Mark came home from work a little early so we could all hang out a bit before she had to leave. Mark, Anthony and I played our first game of Wii together since Carlie passed away. I think we've subconsciously been avoiding that because we all got emotional - we had a little cry and group hug and then decided to go ahead and play one game of bowling.... baby steps. On Saturday, one of my cousins that lives in Katy invited us all over for a cookout. There was a lot of family and friends and we had a really nice time. Anthony stayed there and went home to spend the night with Papa and Gram while Mark and I went to The Kerbow's property in Madisonville for Randy's 40th birthday party. We spent the night out there and had a really fun time.

Tomorrow Mark will be golfing in the His Grace Foundation annual golf tournament. This will be his third year to participate. They are the wonderful organization that sponsors the families on the bone marrow transplant floor at TCH. After Anthony gets out of school we will head up there for the end of the tournament and the dinner.

Hope you all have a really great week.

Love, The Edgington's

Tuesday, April 8, 2008 1:57 PM CDT

Hello everyone,

We had a nice weekend. Friday morning we went to the kids’ school, Galatas Elementary, for the amphitheater dedication in memory of Carlie. It was so beautiful and touching. It was more than we expected. They placed the plaque on the brick wall entering the area. We chose the following quote to be on the plaque: “Recall as often as you wish, a happy memory never wears out.” by Libbie Fudim. They had five pink crepe myrtle trees planted behind the sitting area and there was a nice wind chime hanging from one of the trees. They had made these beautiful programs with Carlie’s picture on the front to hand out to everyone along with a pink ribbon to wear. Carlie’s classmates, Mrs. Zoss’ class, sang a song for us. Our principal, assistant principal, counselor, and Carlie’s Kindergarten teacher all spoke. Most of Carlie’s time at Galatas was very normal and her teacher spoke to that. She really picked up on Carlie’s personality and reminded us that we did let Carlie be Carlie as much as we could. She reminded us although we were nervous about sending Carlie off to school, we did it anyway because she wanted to and she even went to her very first day of school on the bus! Of course, I drove up to school to make sure she made it just fine into her classroom! I was so happy she also talked about the wig Carlie got – some of you may remember the wig was named “Shania”! To me, that wig represented Carlie’s confidence and her nature of doing what she wanted to do when she wanted to do it! She was so excited to show it off when she first received it, she wore it when she wanted to, and took it off when she wanted to – even right in front of people. One of my favorite wig stories was when she wanted to put it on one day when we were about to go somewhere in the car. She asked if she could roll her window down because she wanted to feel her hair blowing in the wind. It still bothers me because no child her age should have to think about something like that. I’m often rolling my car window up because I don’t want my hair blowing in my face – I guess I might need to rethink about that and look at that as a privilege. Okay, I got sidetracked a bit. They also presented us with a framed copy of the yearbook dedication page which was also great. They had someone designated to take pictures so we could just sit and enjoy and not have to worry about that. They really thought of everything… it was perfect. I believe the parents of Carlie’s classmate, Cambry – The Duvall’s – were the ones that got this started by wanting to donate a tree in her memory and it just grew from there with the help of our friend, Tanesha, and other friends and staff at Galatas – we thank you all! Of course there were a few tears shed as well. After Carlie passed away, my friend Elizabeth, gave us the book called “Forever Remembered” and it is filled with messages of love, hope, and comfort. I have read through this book several times in the past few months and that is where we got the quote for the plaque from. I was also reminded of another quote from the book: “When you are sorrowful, look again in your heart and you shall see in truth you are weeping for that which has been your delight.” So, in other words, I will always be shedding a lot of tears because she was definitely our delight!!

Anthony had a fun time at the school Sock Hop fundraiser that night – eating Fuddruckers, having popcorn and rootbeer floats, playing Bingo, and running around with friends. We also had a really great time on Saturday at Lexie’s place for her “ring dunking” party. We enjoyed hanging out with her friends. Anthony mastered the game “beer pong” – of course, without drinking the beer! I’m not sure if I should be worried about that or hope they make it an official sport so maybe someday he’ll have a chance of getting an athletic scholarship! On Sunday, Anthony’s teacher from first grade, Mrs. Wolf, came by and picked him up to take him to her house to hang out for a couple of hours. He played with her two little ones and made cupcakes. He was in Mrs. Wolf’s class when Carlie was diagnosed and she was so kind to him and even kept him a couple times after school while we were at clinic appointments. Last year he had to write in his school journal about one of his favorite days and he wrote about one of those days he spent with her!

Hope you all have a nice week.

Love, The Edgington’s

Wednesday, April 2, 2008 4:54 PM CDT

Hello everyone,

It's been two months today since Carlie passed away. Emotionally, my heart feels like it was yesterday. Physically it feels like it's been much longer - too long since we've seen that beautiful smile or received a big hug and kiss. On Friday, the kids' school is going to plant and dedicate five pink crepe myrtle trees around the amphitheatre in Carlie's memory. Carlie's class, Anthony's class, and the kids from our street will participate. We are looking forward to this special event. We will be back at the school that night for the annual spring fundraiser. On Saturday we are heading up to College Station for the day. Lexie and her friend, Claire, are receiving their class rings and having a "ring dunking" party. Lexie will be graduating this December...where has the time gone?!

I had a fun girls' weekend and Mark and Anthony enjoyed themselves as well. I think there was some boating and steak grilling going on!

Have a good week.

Love, The Edgington's

Thursday, March 27, 2008 10:03 AM CDT

Hello everyone,

We hope everyone enjoyed their Easter. We had a nice day with our family and we were all really missing our girl. Lexie came over Sunday and spent the night with us as well. Thanks for all your notes, cards and calls this past week. Anthony got a new digital watch with alarm/timer in his Easter basket. He has loved this watch! He times himself doing silly things, sets his alarm for how much time his has outside to play, etc. The Easter bunny hid Carlie's pink camo eggs and left a note for Anthony saying her eggs were filled with some treasure and that maybe he might want to donate it to Lunch for Life from him. He thought that was really neat and that's exactly what he did. We also did driveway party/cookouts both Friday and Saturday night with our neighbors.

We have been attending a weekly grief support group - Anthony really looks forward to it. They didn't meet spring break week so he was happy to go back this week. The next morning he asked a number of questions about Carlie. I am so glad he is communicating with us and able to express his feelings and he is wanting to understand some things about it all. Anthony is such a kind, compassionate, caring young man... we couldn't be more proud of him! I am also happy to have this website so if in the future he wants to read more about Carlie and everything she, and we, have been through he has it there for him... along with all the great notes of support and encouragement from all of you.

Anthony and Mark received suite tickets to the Rockets game last night from Kids Unlimited. They had such a good time and the Rockets won! Anthony came home with foam fingers, posters, hats and he told me all about the food he ate - he said he didn't want to miss out on any of it so he tried most of everything. Hmmm... wonder where he gets that from?! I have a girls weekend planned at my friends property in Madisonville and the boys will be hanging out - I hear mention of hitting golf balls, taking the boat out, maybe some tennis, etc.

We hope you all have a good weekend.

Love, The Edgington's

Thursday, March 20, 2008 7:45 PM CDT

Hello everyone,

Hope everyone is doing okay and looking forward to Easter weekend. We are going to spend Easter with family at my aunt and uncle's home. I have to admit it is very hard right now - Easter was one of Carlie's favorite holidays (along with Christmas). Of course, I loved buying her a new Easter dress and shoes. She loved coloring Easter eggs, decorating the house with all the kids' stuffed bunny rabbits, and she especially loved hunting eggs on Easter morning. As Mark wrote in the last entry, we are really missing her and the excitement and joy she brought to our lives - it is very quiet around here right now. Anthony and Lexie are missing her as well. Anthony was decorating the house this morning and was a little down - it made him realize that he will be hunting for eggs by himself Sunday morning - really broke my heart. For the most part, he is doing a good job handling this. Breanna, from TCH Childlife, came out to visit him yesterday. They did some fun projects to help him demonstrate how he is feeling. She was really impressed with how he is expressing his feelings and his maturity.

We went to Austin last weekend to visit Dave and Jody. We had a nice time - we even took Rocco. Rocco was so worn out that he slept all day Monday. We took him to a dog park both Saturday and Sunday in Austin that had a creek running through it - there were lots of dogs running around playing - he had a good time! This week is Anthony's spring break. We have just been hanging around the house being lazy. We went to the rodeo Tuesday night and Anthony took his friend, Bryce, with us. They had a good time and Bryce spent the night as well. Today he was invited to go over his friend, Michael's, house to play. They went to their townhome on Lake Conroe for the day. At first, Anthony wasn't sure he wanted to go (he has been hanging pretty close to home these days). He decided to go and I got a call from him around 5pm asking to spend the night. I was happy he was having fun and wanted to stay.

I mentioned in a previous entry about the "Carlie" line of jewelry a friend of mine, Danon, is making and donating the proceeds to Lunch for Life. I have had some inquiries about ordering. I am putting a picture of them on the photo page. They are made of turquoise soft suede with Bali sterling silver heart and love knot beads. They are made child size but can be ordered in adult size. The necklaces are $12 and the bracelets are $11 and I think a couple of extra dollars for mailing. They can be ordered through her daughter-in-law at: jennifer_maynard@sbcglobal.net.

We hope you all enjoy your Easter weekend.

Love, The Edgington's

Thursday, March 13, 2008 8:50 AM CDT

Carlie,
I know you are in heaven dancing with our Father, but I wanted you to know how much your Daddy here on earth misses you. Things are too quiet and too slow in our lives now... we miss your excitement, your wonderful laughter and your unbelievable hugs and kisses. Not a moment goes by that I’m not thinking of you and wanting to know how you are doing it… I’m sure you are running the place by now. Know this… Daddy loves you dearly and I always, always will!!

Anthony,
I am so proud of you… you are doing so great and keeping Mommy and my spirits up all the time. You are a wonderful son, full of life and joy and I can’t tell you how much you have helped Daddy through all of this. It’s a burden you shouldn’t have to take on, but I thank you for doing it so well. I love you so much!!


Lexie,
Proud doesn’t begin to cover how I feel about you… you never cease to amaze me no matter what the task or trouble. You have been a rock for your ol’ Dad and I appreciate that so much. What you are taking on while going through all this is commendable and I pray for you the strength to keep it up. As my first “little girl”, you set the bar high for the others, yet you helped them grow into beautiful children like yourself. I truly adore and love you too!!

Charon,
Where do I start?? You have always meant the world to me, but what you have shown me over the last three years and especially the last three months is more than any man, husband or friend could ever hope for. I am truly a lucky man to have had the relationships with you, our children and our extended family and I thank you for making it so. I know how much you are hurting… how much we are hurting without our baby, but I also see a drive from you to make sure her memory stays in the forefront of our hearts, our activities, our thoughts and prayers. The work you are doing to push onward with the research funding is wonderful and so needed… the other families I’m sure will be eternally grateful. Thank you for being my life partner… I love you!! (more)

All my love to you all,
Dad/Mark

Tuesday, March 4, 2008 4:10 PM CST

Hello everyone,

Hope you all had a nice weekend. I just wanted to put a quick update on here about where I went this morning. I went to the clinic at Texas Children's, along with our Neuroblastoma friends Lara and her son Hans. We were there to help Mark Dungan from Lunch for Life present a check for $66,000 to Dr. Russell and her team for Neuroblastoma research!! Isn't that just awesome?! That money was raised from Carlie and Hans' LFL campaign, funds from a golf tournament that was done by another TCH NB family, and then LFL gave additional money. They said almost half of that was just from Carlie and Hans' LFL campaigns. YOU ALL HELPED US DO THAT.... THANK YOU SO MUCH! WE ARE SO GRATEFUL!

This money is being used to fund a clinical trial for initial treatment of Stage IV Neuroblastoma patients. I believe all of this was from money we raised in 2007 and we have had many more donations since then that will go towards the 2008 LFL campaign. I even know there are more efforts being done as we speak to bring in more contributions. To name a few: Galatas Elementary just completed a collection from the families at the school, a friend that I used to work with is making the "Carlie" line of necklaces/bracelets and giving proceeds to LFL, Boni's Dance Studio is taking up a collection, a friend's design company is showing a home that they renovated/decorated and the proceeds will go to TCH, and Mark's yearly golf trip buddies took up a collection during their trip.

We cannot thank you enough for all of your love and support. Although this fundraising will no longer help our daughter, we need to continue to fight for research for this cancer for all the other families who have been diagnosed or are yet to be.

Love, The Edgington's

Saturday, March 1, 2008 3:55 PM CST

Hello everyone,

I've been meaning to update the website all week and haven't gotten around to it. I have some time now but I have to say it's probably not the best time to be doing it. I'm in a blue, funk mood today - really missing Carlie and everything that she brought to our daily life. I need to just have my little pity party for a bit and then I know I'll snap out of it and enjoy the remainder of the weekend. Anthony woke up Friday morning with a low fever and more congestion. Took him to the doctor and they said it was either viral or cold/respiratory. When you've had a child with cancer it makes you paranoid every single time your children get sick.

I would like to ask for prayers for The Miller family. My friend since high school, Michele, her husband was killed last week in a car accident. Craig was a deputy sheriff on his way to an investigation. They have two children very close in age to Carlie and Anthony. His service was emotional and uplifting. Michele and her son both spoke and they did a wonderful job. Craig's mother and Michele's sister both shared with me a conversation Craig had with them after Carlie's service. He had told them how wonderful and uplifting Carlie's service was despite the circumstances. He went on and on with the details of her service and told them when he dies he does not want his service to be all sad - he wanted it to be uplifting like Carlie's. His mother told me had they not had that conversation they would not have known some of the things he would have wanted. It does give you some comfort knowing our circumstances can help other people. Please also say a prayer for our friend, Ryan (Batman), and his family. He has relapsed neuroblastoma and they are still searching for the right treatment to get that NB beast under control.

We joined a golf club here in The Woodlands today. Mark and Anthony went to the driving range to hit balls. The weather is beautiful and they had a nice time. We have a very old ping pong table that they just brought out of the garage. They are going to see if they can repair it so we can play some ping pong! That might be fun... I think I'll go see what they are up to and see if I can get out of this funk! Have a nice weekend.

Love, The Edgington's

Monday, February 18, 2008 9:07 PM CST

Hello everyone,

It's hard thinking about updating the website without being able to do it the way we have in the past - letting you know how Carlie is doing, what she has been up to, and what to pray for. So, I am going to try and do that right now anyway. This is something I didn't plan on sharing on the website until I sat here and wrote the first sentence and then it just seemed to fit. I had a really comforting dream with Carlie in it last week. In my dream I was sleeping and something woke me up where I found myself in the living room and saw a big mess - looked like something the dog tore up - I also saw Carlie very vividly (keep in mind I'm still in the dream, not really in my living room). She looked just as she did right before diagnosis... about 4 years old, she had her hair (with her bangs that she was wanting back), smiling, and wearing one of the swimsuits she loved. In the dream I went to wake Mark to see if he knew what the mess was in the living room. I asked him "do you see her" and he said yes. Someone else walked in the room and I asked them the same question and they replied "yes". Then I found myself really talking out loud in my sleep which woke me up and I immediately sat up in bed. My talking had also woke Mark up - I asked him if I said that out loud and he said "yes, do you remember what you said?". I did. I had said "Carlie, did you get your wings?". She said "Yes!" I was so happy that I actually remembered the details of the dream so vividly. Mark and I also noticed that the time was the same time Carlie passed away those early hours on that Saturday. I often hear stories like these and I do not know how these dreams come about, but I'd like to think it was God's way of letting us know Carlie is doing okay, she must be swimming and having fun.... and as far as prayers go, just pray for us here who miss her so much!

I am not going to end on that note! We have been doing okay. Anthony is caught back up in school, however he woke up with a fever this morning and I took him to the doctor. He tested positive for the flu so he will be home a few more days. He doesn't seem to feel too terribly bad, mostly just a slight headache and congestion and then fever again tonight. Lexie is also working hard to try and get caught up in her classes with a lot of late nights and little sleep. We went to The Kerbow's property this past weekend. We had some rain on Saturday but that didn't stop us from enjoying ourselves. Sunday was a beautiful day. There was fishing, 4-wheeling, taking walks, yahtzee, cooking out, sitting by the fire... even Rocco had a good time - he really wore himself out - he's been sleeping most of the day.

Continued thanks for all the nice notes, cards, emails, phone calls, food, and gifts from family, neighbors, friends, our Neuroblastoma families, work and church friends, etc.

Love, The Edgington's

Saturday, February 9, 2008 4:50 PM CST

Hello everyone,

Once again, I sit here trying to figure out how to start writing this entry. I know I am not going to remember everything I want to say. Our beautiful girl, Carlie, passed away one week ago today – I still find it hard to believe that this happened. We keep waiting to wake up from the bad dream. Although our hearts are aching and we miss her so very, very much and we did not have the ending that we wanted here, we know she is in Heaven with her perfect body and her beautiful hair and no more pain, pokes, or medicine.

I wanted you to know how great the staff at Texas Children’s Hospital and Cancer Clinic were to Carlie and our family these past years. They were so kind and caring her last week in the hospital as well… checking up on us every day and making sure we had everything we needed and lots of privacy and minimal disturbances from unnecessary routine medical procedures. I also have to tell you how great Mark was in taking care of Carlie the last two weeks. She was not able to move around well and she fully trusted him to move her around, get her comfortable whether it be in bed, on the couch with TV/computer, at the dinner table, or in the recliner to play Wii. I know he’s her dad and wouldn’t have expected any less, but he did it with such care and love. I am also so proud of Anthony and Lexie. The time they were able to spend with her with such love and concern and the way they handled everything was so heartwarming.

We were so overwhelmed by the outpouring of love and comfort for our family. All the cards, emails, phone calls, food, flowers, plants, donations on Carlie’s behalf, gifts, etc., were so very much appreciated. We had so many people helping with visitation, funeral services, and the gathering at our home afterwards. We cannot begin to thank everyone enough. A lot of our friends who were helping with plans also had their friends helping them with things – thank you to all of those people as well. The service was beautiful. There were so many people in attendance, and wearing pink! – we wish we would have been able to greet everyone personally.

We are doing okay – just taking it one day at a time. Anthony went back to school on Thursday, Lexie left for College Station today, and Mark will return to work on Monday. I will start working on trying to get our house back in some sort of order. We will continue to live our lives The Edgington way – with family and friends by our side. I know we will have sadness and sorrow, but our love for Carlie will outshine that – she will always be our Carlie Raye of Sunshine!

Love, The Edgington’s

Sunday, February 3, 2008 3:24 PM CST

Hello everyone,

First let me start off by saying how overwhelmed we are by everyone’s outpouring of love, notes, prayers, food, errand running, etc. We absolutely do not know how we would get through all this without all the love, help, and support we are receiving from family, friends, neighbors, church, friends of friends, etc. Even our support system has their support system helping them… it is truly amazing!

Following are the service arrangements:

The viewing will be held Monday, Feb. 4, 5:00 – 8:00pm
Forest Park The Woodlands
18000 I-45 South
The Woodlands, TX 77384
Ph: 936-273-4922

The funeral will be held Tuesday, Feb. 5, 11:00am
The Chapel at Fellowship of The Woodlands
One Fellowship Drive
The Woodlands, TX 77384
Ph: 281-367-1900

Private graveside services for immediate family only will follow.

Carlie's favorite color was pink - so please feel free to wear pink in her honor!

In lieu of flowers, please make donations to www.lunchforlife.org or Texas Children's Cancer Center (Memo: Neuroblastoma Research) Attention: Lisa Hereford 6621 Fannin St. CCC 1410 Houston, TX 77030-2399


Love, The Edgington’s

Saturday, February 2, 2008 6:19 AM CST

Hello everyone,

At 3:20am Saturday morning, our beautiful daughter Carlie passed from our loving arms into the arms of Jesus and is now resting peacefully in Heaven. One more angel to watch over us!

Thank you all for your thoughts, prayers and loving support. We will be updating the website with details of services soon.

All of our love, The Edgington's

Tuesday, January 29, 2008 3:39 PM CST

Hello everyone,

Carlie had a nice weekend at home enjoying some visitors and, of course, kicking some serious booty in Wii bowling golf.

We are sitting here trying to find the words to update the website. She was showing more signs of progression over the weekend so we decided it was time to bring her inpatient to TCH to make sure she remains comfortable and in good care. At this point, we are sad to say there are no more treatment options for Carlie’s disease. We feel strongly that we have done everything medically possible for her over these past almost 3 years to try and get rid of this cancer from her beautiful body. Unfortunately, that has not happened the way we wanted it to. We now feel it is up to God to heal her in his own way. Despite what Carlie and our family has endured, we feel like we were blessed with many great opportunities for creating extra memories, taking lots of photos, spending time with family and friends, enjoying everyday life as much as possible, and being shown so much goodness and generosity from friends, family, and even people we don’t know. We know and appreciate how much you are all there for us and even reached out to your own network of friends and family for extra support and prayers for us. Along with that, having a trust and belief in God and a heaven that someday we will all be together again with no pain or hurt is what we will lean on to get through this.

God Bless you all...

Love,
The Edgington's

Saturday, January 26, 2008 6:44 PM CST

Hello everyone,

Thanks for all the great notes on the website, the phone calls, emails, food, gifts, etc. We really appreciate all of you! I have to say it is nice to not have to cook. Carlie has pretty much been doing about the same since our last post. The pain meds are working pretty well. She has had some break through pain today in one of her legs so we've given her a little extra dose to try and help with that. I have to tell you how extra sweet Carlie has been. She has been telling Mark and I that we are good parents and we are doing a good job taking care of her. As her parents, we just wish we could do so much more to make this all go away.

We have had lots of visitors this past week and I think almost every one got dragged into a game of Wii. Several people left the house now wanting a Wii!

We appreciate your continued thoughts and prayers for Carlie's healing and comfort.

Love, The Edgington's

Tuesday, January 22, 2008 7:50 PM CST

Hello everyone,

We had a nice visit with our friends who came in town this weekend. Basically, just did a lot of eating, visiting, and playing Wii games. Carlie had a rough weekend. She was in more pain and in overall discomfort. We took her to clinic for an office visit with Dr. Russell. We increased her pain medications and it seems to be helping. I think she got a little bit better night's rest last night. She was even a little spunky again today. She is mostly playing Wii, Playstation, Computer games and watching some TV. We are pretty much just hanging around and taking it easy this week.

Please continue to pray for Carlie's healing and comfort. We will not let go of hope nor faith. We continue to appreciate all your thoughts, prayers, notes, calls, food, gifts, offers of anything we need.... thank you!

Love, The Edgington's

Friday, January 18, 2008 2:44 PM CST

Hello everyone,

Not only did we go to Chuck-E-Cheese on Wednesday we went again Thursday morning! On Wednesday she played games and ate pizza for a couple of hours. We had to get back home to meet Breanna to bake chocolate chip cookies - which were delicious! Carlie goes crazy for the cookie dough and can't hardly stand putting it on the cookie sheet for baking - she just wants to put it all right in her mouth to eat! She had tokens left from Wednesday so she wanted to go back again Thursday morning. Our friends, Alison and Dylan, went with us and then we met other friends at Chipotle for lunch afterwards. This morning we were planning to go to school so Carlie could join in the reading time with her class for a little visit. She was dressed and about ready to go when she decided she just wasn't up for it. I could tell she was having some pain and just didn't feel comfortable so I'm glad she made the decision to just hang out at home. We have more visitors coming in for the weekend - our friends from Wichita, the Pavetto's, and Dave and Jody from Austin. Also, Lexie is coming in tomorrow as well. We will have a full house - which we like and it will be fun hanging out together.

We received a thank you card from Lunch for Life yesterday for our participation in the 2007 campaign. They were able to raise over $250,000 over the holiday giving campaign, bringing their grand total to almost $1.2 million dollars. They will use this money to fund at least 4 clinical trials and will continue to support the CNCF's Junior Investigator Program. Research being done at Texas Children's Hospital Cancer Center will benefit from the funds you all helped us raise! Thank you so much for your donations to Lunch for Life on Carlie's behalf. As a token of their appreciation, they sent her a $125 Toys R Us gift card for all the donations she received. That was a nice surprise for her yesterday - not that she needs any more toys!!

Have a nice weekend. Love, The Edgington's

Wednesday, January 16, 2008 8:50 AM CST

Hello everyone,

I finally updated the photo page - it's been a while. I put some photos up that were taken around Christmas time. Carlie has been doing okay - she is still having some break through pain in her back/shoulder area and her right hip. I talked to her doctor yesterday to see about changing up some of her meds to see if we can get that a little more under control. Treatment wise - she did not end up qualifying for the clinical trial after all. Hopefully the radiation will halt growth on the neck tumor. We are not giving up hope of something else coming along that we might be able to try with Carlie. Please join us in praying for the same!

Grandma Martha came over Monday to visit with Carlie while I ran some errands. Our friend, Brenda, came over Tuesday to visit and go out to lunch with me, Carlie, and our neighbors, Alison and Dylan. Not much will stop my girl from wanting to go out to lunch! Today I promised her Chuck-E-Cheese - she wants to play games and eat pizza. Our friends, Hans and Roman and their moms, are planning to join us. After that, Breanna (TCH Childlife) is coming out to make chocolate chip cookies with Carlie... I know she will love that!

Have a great day! Love, The Edgington's

Sunday, January 13, 2008 2:40 PM CST

Hello everyone,

Everything has been going okay around here. We were able to go to Dosey Doe last Wednesday night for dinner. Carlie even sat with all the other kids at the other end of the table - which is good because she hasn't been venturing too far from Mom or Dad lately. She even got up on stage so Kathryn could sing "Carlie Raye of Sunshine" to her - and we got it on video this time! We went to clinic Thursday to check her calcium level and it was just a little low - which was to be expected - and she got her Whataburger lunch on the way home. Aunt Vicki arrived Friday. She stayed with us over the weekend and now is staying at Grandma & Grandpa Shipley's house. Our friends, Greg & Debbie, also came over for a visit yesterday. We went out to lunch at Goose's Acre, played Wii, Sorry, and just hung around and visited.

Her throat has been bothering her some but I think it might be a little sore from the radiation treatment. She is also still having some break-through pain on her right hip. We might need to adjust some of her meds to help with that. She told me she is ready for these tumors to go away and to feel better - Amen to that!

Love, The Edgington's

Wednesday, January 9, 2008 5:05 PM CST

Hello everyone,

Carlie has had a good day today. She did wake up about 3:30am and I heard her over the monitor so I went to check on her. I asked if she was calling me up but she said she was just talking to herself but now that I was there could I get in bed and cuddle with her for a bit. How can a mom turn down that invitation?! I just planned on sleeping with her til the morning - but there wasn't much sleeping going on! She would chit chat with me and then say "Okay, I'm tired, can we just stop talking and get some sleep?!" I said that sounded good - especially since I wasn't the one doing the talking!! She got up about 8am and seemed to feel pretty good and wasn't complaining of anything. So far, she hasn't had a fever or there hasn't been any mention of feeling crummy from the Zometa infusion yesterday. I was even getting some smiles from her today and she was being a little more talkative and silly... which made my day today! As you can see from her pictures, she has a beautiful smile! We went to the park for about 30 minutes and sat out on the driveway for a few minutes waiting for Anthony to come home from school. Tonight we are going to dinner at Dosey Doe's with some neighborhood friends - our neighbor, Kathryn, is playing at their open mic night tonight and she said she will sing the song she wrote for Carlie again tonight "Carlie Raye of Sunshine" - Carlie's middle name is Raye.

Yesterday Carlie had her last radiation treatment on her neck - she got to ring the bell as a sign of completing her treatment and everyone in the waiting room clapped and cheered for her. We then went over to clinic for her counts to be checked, office visit, and then they gave her the Zometa infusion. Everything went smoothly - it just turned out to be a long day - we got home at 6:30pm. Thankfully, my friend Alison went along with us to help carry Carlie, our bags, our lunch, do art with Carlie, etc., etc. - it was very helpful to me!! Once again, I want to thank everyone for their kindness and generosity. We have such wonderful family and friends. I have to tell you that we were thinking of getting a Wii for our family right after Christmas. Come to find out they are still hard to get. Through the efforts and generosity of friends and neighbors, we were able to get a Wii for us to give to the kids in a one day turnaround. We have had so much fun playing that this past weekend - even Uncle Mike, Aunt Debbie, and Grandma and Grandpa Shipley played. Carlie was kicking some booty in the bowling and golf games!

Tomorrow we'll go back to clinic to have Carlie's calcium level checked. The Zometa will cause a decrease in calcium. She has to take two Tums a day to help with that but they need to keep an eye on it. Hopefully, it will be a quick trip (which means a minimum of about 3 hours!). She has already requested lunch at Whataburger on the way home.

Please keep those thoughts and prayers coming our way!

Love, The Edgington's

Sunday, January 6, 2008 8:14 AM CST

Hello everyone,

We are doing okay over here. Thankfully, Carlie has not had any more of the pain/burning episodes like she had last Wednesday. The pain meds she is on seem to be working okay and occasionally we have to give her some "break through" morphine pills. Her right hip has bothered her a little more these past couple of days. She will go to clinic Tuesday after radiation and we are going to give her an infusion of Zometa - it is supposed to help with bone pain and be a little more longer acting. Her doctor said patients usually get flu-like symptoms for a couple of days after infusion - so she may potentially get a fever - hopefully we won't have to be admitted if that happens since this is something that might be expected.

Lexie came over Friday night to hang out and spend the night with us. Her friend, Claire, also came by for a visit before heading back to A&M. Carlie was up for going out to Los Cucos for mexican food that night. She has been taking a little higher dose of steroid since she was in the hospital which has caused her appetite to increase. She ate really good at the restaurant and not too much longer after we got home she was ready for a snack! Aunt Debbie and Uncle Mike arrived Saturday morning from Indy for a visit. We've been hanging out, playing games, and went to Chili's to eat yesterday (another one of Carlie's favorites). Today we are all going to visit Grandma and Grandpa Shipley.

Thank you again for all your notes of support, thoughts, and prayers.

Love, The Edgington's

Thursday, January 3, 2008 12:16 AM CST

Home, sweet, home! Yes, Carlie did get to come home last night! She finally got over to Methodist radiation late yesterday afternoon for simulation and treatment. We got back over to her room after 5:30pm and left the hospital around 7pm. She was doing fine but then started complaining of some pain on the ride home. She came home and wanted scrambled eggs and bacon - so she ate that while watching TV. A little later she really started complaining of a pain/burning sensation in her arm. We were able to speak with her doctor so she could let us know what meds to give her. We gave her some Ativan to help calm her and then some more morphine. She thinks it might have been tumor pinching a nerve. She settled down after a bit and then had another episode. We put her in bed with us so she could watch her TV shows and relax. She eventually fell asleep and we just gave her one more dose of morphine during the night to make sure she was comfortable. She woke up early and then we had to leave around 6:30am or so to head down to Methodist for today's radiation. She is SOOO tired from the extra meds that she couldn't stay awake for anything! She was trying to eat a donut in the car, would get it all ready, then fall asleep... then the bag fell on the floor, she'd wake up and want the donuts, but neither of us could reach them! I pulled the car over, got everything fixed back up, and she fell right back to sleep! We got home about 10:30 and she's been asleep since. I am hoping she'll get some much needed rest today and feel better later... and praying for no more of those episodes like she had last night. She will receive 5 radiation treatments - so Tuesday should be the last one.

Please continue to pray for Carlie's comfort and healing. Let's pray the radiation will shrink or at least halt growth of the tumor on her neck.

Love, The Edgington's

Tuesday, January 1, 2008 7:00 PM CST

Hello everyone,

We were able to go to our friend's property on Sunday for the day. It was a beautiful, sunny day. We rode 4-wheelers, hung out by the fire, took a nice walk, etc. We had a nice day. On the way home we stopped at one of Carlie's favorite pizza places, The Pizza Shack, in Willis.

She had started mentioning that it felt funny when she tried to swallow - she had said it a time or two a few days before but then started again on Sunday. I noticed the area near the tumor on her neck looked a little puffier towards the front. I talked to Shari, our nurse practicioner, on Monday morning and she said to bring her on in to clinic to check her out instead of waiting til Thursday for our scheduled appointment. They did an X-ray and the tumor has grown some and is starting to push against her airway a little. They wanted to try radiation to hopefully stop any more growth - the Methodist radiation department was closed for New Year's Eve and New Year's Day. The on-call radiologist came over and evaluated her and decided since she was not having any problems eating, drinking, etc, at this time they thought we could wait until Wednesday when their full team was back at work, but Dr. Russell still wanted her inpatient so we could give her higher dose of steroids to reduce swelling and just keep a close eye on her. She has been doing fine - even stayed up until 1am playing her Barbie Horse Adventure game on the Playstation (which means both she and I were a little tired today)! Both the radiation doctor came by to check on her today and Dr. Russell. The plan is to get her evaluated and hopefully treatment started tomorrow at Methodist. If everything still seems to be going fine they would expect her to be able to come home late tomorrow or sometime Thursday.

It's been a while since we were inpatient - having to get used to late nights again, your room never is dark enough to try to get to sleep, beeping monitors, night shift employees talking and laughing in the hallways while patients/families trying to get some sleep, early morning rounds, etc., but once again everyone was very nice and good with Carlie. Thanks to family and friends who have come by for visits, brought food and goodies, phone calls and offers of help, and helping out with Anthony as well. We really appreciate all of you!

Happy New Year!
Love, The Edgington's

Saturday, December 29, 2007 4:05 PM CST

Hello everyone,

Sorry for the delay in updating the website... we've either been busy or have been a little lazy! Christmas Day went pretty well. Santa left Carlie a talking parrot and when Anthony came downstairs and walked by it, it said "Hello". Carlie popped out of her room and asked "What was that?!". She came downstairs - she was pretty low keyed and sat in my lap in just took it all in for a few minutes. We woke Lexie up and after Grandma and Grandpa Shipley came over we opened presents. The kids were excited about all their gifts. Carlie received a Fashion Show tent, new outfits, Playstation 2, Barbie things, games, movies, etc. Anthony received a new bicycle, Legos, hunting rifle, games, etc.

We went to Aunt Catey and Uncle Mike's house to celebrate Christmas with my Dad's side of the family. It was good to see aunts, uncles, grandparents, and cousins! Carlie's pain was pretty well under control but she still seems to stay close by our side. After a while, she did get on the floor and play with some blocks and then went outside to watch Aubrey ride her new tricycle. We got thrown off with some of her pain meds on Wednesday night so it made for a not so good day on Thursday. We got back on track and Friday was a good day. Our friends, Dave & Jody, came back in town for the night. The boys went to hit golf balls and Jody and I took Carlie to Target to use her gift card (after much debating she finally picked out a new game for her V-Smile). We then picked up food from Sonic and went to a park and ate and she played on the swings and play equipment. She was even climbing up and down on things and sliding. Dave and Jody went back to Austin this morning and Grandma Martha came over for a visit to see what all the kids got for Christmas. We are a little tired today because Carlie woke up about 4 times during the night last night - not in pain, just needed to go to the bathroom or had a dream and wanted one of us to lay with her until she went back to sleep.

If we are up to it we may go to our friend's, the Kerbow's, property for the day tomorrow or New Year's Day. Carlie is due to go back to clinic next Thursday to check counts and office visit. We may also give her an infusion of another drug that helps with bone pain. She told us today that this pain has been taking some of her happy away and she sees that no one else has been that happy either. These kids are much smarter than we realize. I guess that's a note to self to get some happy back around here! She is outside right now watching Anthony and Daddy hit some tennis balls and she's hitting a few herself.

Please continue to pray for Carlie's comfort and healing.

Love, The Edgington's

Monday, December 24, 2007 11:02 PM CST

Merry Christmas everyone! Carlie has had an okay weekend. Her little cheeks had a lot more color after she received her transfusion on Friday! She was even up to going out for mexican food with some of our neighbor friends... she was pretty low keyed but the fact that she wanted to go was good! Saturday the kids hung out with Dad while I did some Christmas shopping. We went to our church's Christmas service Saturday night - Carlie was getting into the Christmas carols - then she fell asleep about halfway through the service. After the service we went for a quick dinner out. Our friends, Dave & Jody, came in town Sunday to hang out and spend the night with us. Grandma and Grandpa Shipley and Lexie also came over. We visited, ate food, and played UNO. Today we went over to Grandma Martha's and then to my cousin Ali's house to celebrate Christmas Eve. We had a nice time. Carlie got sleepy on the way there... she slept for at least an hour or more once we got to my cousin's house. She finally woke up, opened some gifts, ate some ham and potato chips, and helped Uncle Andy play the White Elephant game... she made out with a Target gift card - she was excited about that!

Carlie is doing okay on the new doses of pain meds - she was doing good Friday/Saturday and then Sunday she started in with being a little more uncomfortable once again. We've just given her a few more doses and it seems to help - just makes her a little more tired and not a lot of energy.

The kids are sleeping in bed waiting for Santa! It is hard seeing Carlie not being full of energy and excitement for Christmas, but I must say once some presents come out for her to open she seems to perk up a bit! We are continually grateful for everyone's kindness, thoughts, prayers, donations, offers of everything under the sun, and feel so blessed to be surrounded by such love and support. We truly wish each and every one of you a wonderful Christmas and Happy New Year!

Love, The Edgington's

Friday, December 21, 2007 1:28 PM CST

Hello everyone,

Hope everyone is getting ready for Christmas, getting all their shopping done, and ready to enjoy time with family. That is what we are hoping for as well.

It has been a busy couple of days. Carlie did go to school for half day on her last day - Wednesday. She definitely was having more discomfort this week but she was less irritable and being sweet again (Anthony may slightly disagree with that comment)! We had a clinic appointment Thursday morning and since she had her counts done Monday we were optimistically hoping to be in and out of there - especially since we had to be back downtown for the Nutcracker that night. Well, that's what I get for being optimistic! She was running a temp of 100.3 so we needed to go ahead and get blood cultures run to make sure there is no infection. They also checked her counts again and her hemoglobin dropped more so they set her up to have a transfusion today. It was obvious to her doctor that she was in a lot of discomfort - more than she would let us know about. They gave her some morphine through the IV, a steroid to help out with pain, an antibiodic since she had the fever... and sent us home with new pain med prescriptions. We got home about 5pm and turned around and left at 6pm for The Nutcracker. Carlie had a meltdown when we were leaving and I really wasn't sure if it was the right thing to do by still going - she was tired and had received quite a bit of medications and it was going to be a late night. She finally calmed down on the way there and slept a little. She perked up when we got there and really enjoyed watching the performance and seemed more comfortable - she was very chatty though - pretty much talked to me the whole time about what was going on. She fell asleep during the last 15 minutes. Our neighbors were nice enough to arrange some special things - we had our tickets exchanged out for closer seats and after the show we got a backstage tour with some of the dancers. They gave Carlie autographed ballet slippers and a Nutcracker t-shirt.

I was checking the Lunch for Life website and they are about $45,000 away from their $250,000 goal for this year's giving campaign. If you've been thinking about skipping a lunch and making a donation, now is the time to do it! www.lunchforlife.org They are also selling cookbooks for about $20 - it is a collection of recipes from neuroblastoma families and I believe there are some recipes from celebrities as well.

Mark took Carlie down to TCH today for her transfusion. They should be home shortly. We are planning a low key weekend just getting ready for Christmas. Please continue to keep Carlie in your prayers.

Love, The Edgington's

Tuesday, December 18, 2007 1:58 PM CST

Hello everyone,

Carlie had a pretty good weekend. She has still been somewhat irritable but she was moving around a lot better. She was up for going to church Saturday night. Lexie came over Sunday and the kids played Monopoly Jr. with Daddy - she loves to play that game. Later that day we had an appointment to have a family picture taken outdoors. Carlie fell asleep on the car ride there so she was a little grumpy and it was chilly outside, but I think we were able to get some good pictures. Some of them you could just tell she had this look on her face that said "are you crazy for making us do this?!" After that we stopped by and visited some of our neighbors who just moved to another house - we sure do miss Bella and Katie (and mom and dad!).

We had her counts checked locally yesterday morning and they were fine. Her leg is bothering her a little bit more yesterday and today. But she was up for going back to school yesterday - she got there around 10am and stayed the remainder of the day. I took lunch to her and checked on her and she seemed to be doing good. I think it really helped her attitude because when I picked her up she didn't complain about anything! When she came home she wanted to sit outside - then she wanted to roller skate. I didn't really want her to do this but I couldn't resist because it was nice to see her perked up - I just held her arms and she scooted around the cul-de-sac a few times. She was really pooped out by the end of the day and fell asleep on the couch after dinner. Although she was moving around a little slow this morning she wanted to go to school - she said she had something she needed to finish that she was going to give to Mark and I for Christmas and it was also her holiday party. Her party was over at 1pm and I could tell she was worn out so I brought her home to relax.

She has an office visit scheduled for Thursday morning at the clinic. Lexie, Carlie and I are planning to go to The Nutcracker Thursday night with our neighbors Alison and Morgan... so hopefully she will still be up for that. We are continuing to pray for Carlie's comfort and healing.

I just wanted to thank everyone again for all the Lunch for Life donations. Carlie has over 2600 ornaments on her Giving Tree. They are going to do a drawing on Christmas for a trip to Disney - each ornament represents a chance in the drawing - so she has over 2600 "tickets" in the drawing! That's awesome!

Love, The Edgington's

Saturday, December 15, 2007 10:54 AM CST

Hello everyone,

Carlie had a pretty good day yesterday. We did get out and go see the movie Enchanted - it was really cute and she enjoyed it. We then stopped at the park so she could play a little and she kept following this squirrel around with my camera taking pictures. She went down the street to play with her friend Caitlyn. She didn't stay too long but I was happy to see that she wanted to at least go play for a bit. She is still getting a little easily agitated with these meds plus I'm sure the lack of good sleep adds to that. She woke up quite a bit last night - not in pain or anything - that seems to be doing pretty good right now - but she'll wake up and have a hard time going back to sleep - she'll be pretty alert and just talk about this and that.

Grandma Martha is coming by for a visit today. Lexie is finished with finals and home for the holidays - she is coming over tomorrow to hang out with us. Maybe we'll try to get out and go see Santa this weekend.

Have a nice weekend.

Love, The Edgington's

Friday, December 14, 2007 8:39 AM CST

Hello everyone,

Wednesday night was a bit of a long night but yesterday and last night were much better. Wednesday night she was making a lot of noises in her sleep and her heart seemed to be beating really fast. We were a little nervous about this and were trying to wake her up just to make sure she was okay... but couldn't seem to get her awake. We called into TCH to have the on call oncologist give us a call. We checked her heart beats per minute and they were okay and they said she was probably just in a deep sleep and having dreams. A little bit after that she did wake up and looked at us trying to figure out why we were both standing over her in her bed. She seemed fine and went back to sleep. What was nice to see was she woke up about 7am because she heard Mark talking in Anthony's room - she popped out of bed herself and told me I could stay there and she was going to go see what Daddy was doing. The meds have definitely kicked in and are helping her hip pain - she really moved around well yesterday and did not want a dose of morpheine. She sat on the floor and did art for about an hour or so. She watched TV, played on the computer, etc. She was very agitated though - once again, most of what I was doing was wrong or bothering her - which is also just a part of Carlie's personality - and she has no problem telling me so. So, for me it was definitely a day of practicing my patience - but I was thankful for it. She started getting tired early last night. I gave her a dose of morpheine to make sure she was comfortable during the night - she fell asleep on Daddy's lap watching TV. She really seemed to have a good night's sleep - waking up once to go to the bathroom and Mark went up and layed with her until she fell back asleep. This morning she woke up about 7am and came downstairs. She seems to be feeling pretty good and so far doesn't seem as agitated as yesterday! She's watched some TV and playing on the computer. I think we might get out and go to see the movie Enchanted or go ride the Merry-go-Round at the mall - she seemed up for that.

We've talked more with the doctors about the clinical trial. I think we are just going to wait until after the holidays and see how she is doing and then look at that again. Right now it would be hard to get the required tests scheduled in time to start before Christmas. Also to put her through bone marrow biopsy, scans with sedation, etc., when we are still trying to get her pain under control is probably not the right thing to be doing. Right now, we are just taking it one day at a time and praying for all the right answers.

Love, The Edgington's

Wednesday, December 12, 2007 5:37 PM CST

Hello everyone,

Thankfully, Carlie remained fever free the rest of the night and today. She's definitely groggy from this medicine but at the same time she fought off falling asleep all day until about 4:30pm. Of course, every time I decide to watch a show that I taped last week, she wakes up and tells me to put her show back on.. and then she falls back asleep! She woke up a number of times during the night - I had her sleeping with me so I could keep an eye on her. She would wake up wanting a drink of water, to go to the bathroom, to just chat for a few minutes or to grab my hand to hold... I think that morpheine was making her a little wired versus sleepy. She was awake at 6:30am wanting to watch TV in bed. I tried to go back to sleep after Anthony got on the bus but she didn't really let me do that either. She's still playing boss around this house and telling me what I am not doing right or how I should be doing something - where does she get that from?

She mostly just watched TV today. This afternoon we had a visit from Breanna, our Childlife Specialist from the clinic. They started a program where they can go to some of the children's homes and do some special art projects with them. Carlie was happy to have Breanna over for the visit.

I just want to say that CANCER STINKS (and that's putting it nicely)!! So many decisions to make and so many things to take into consideration when all you really want is just one thing... for it all to go away and her to be healthy again. I'm praying the fever stays away and we can get this pain medicine making her feel more comfortable, alert, and wanting to do the things she should be doing right now... school, playing, going to visit Santa, etc.

Love, The Edgington's

Tuesday, December 11, 2007 10:34 PM CST

Hello everyone,

It's late but I wanted to give a quick update. Since Carlie is still having some more pain in her hips her doctor asked that I bring her in to clinic today so they can examine her and give us some different prescriptions. We've put her on a low dose Fentanyl patch so she will have some constant pain medication and then we will also give her low dose morpheine pill that she can take every 4 hours or so as needed. She said it may take a couple of days for the patch to fully kick in and after that we might be able to back off on the morpheine a bit. She said she may be pretty tired the first day or so but her body should get used to it after that and she should start feeling better and want to return to some normal activities. We got home about 6pm, but then around 6:30 she started in with a low fever. Gave her some tylenol and it went down. I will keep an eye on her overnight but may have to end up taking her back in to clinic tomorrow if it keeps up.

Thanks for all the continued thoughts, prayers, and notes!

Love, The Edgington's

Sunday, December 9, 2007 9:58 AM CST

Hi everyone,

First I want to thank everyone for all the great notes, emails, phone calls of prayer and support this past week. Carlie had her kidney test Tuesday and MIBG Scan on Thursday. The bone scan and the MIBG scan show some different spots but basically what it boils down to is both front hip areas have tumor, there is a spot that shows up on MIBG on the right back hip area, right armpit, an area on the left side of her neck, and possibly one of her ribs (lights up on bone scan but not MIBG but think it must be tumor based on the other growth). Her kidney function test remained the same at a 62. However, there is a clinical trial that she may possibly qualify for that only requires a 60 for kidney function. We talked about some other possible things to try. Mark and I need to read over the clinical trial information and talk about other things we discussed and make some decisions. Right now, the first priority is making sure she is not in pain. When the disease is in the bone it can become painful. The Tylenol with Codeine has been working pretty well this week until the last day or so she seems to be having more discomfort in the left leg. Last night she woke up about 4:30am and needed some more medicine and doesn't seem to want to walk on it.

She is in pretty good spirits for the most part. She did go to school this week when she was not at appointments. Friday night the kids spent the night with Grandma and Grandpa Shipley. They had a great time - they went bowling, to dinner at Outback, and got to ride the golf cart over to the park to play. Saturday was Rocco's first birthday so we took him with us to Petsmart and had his picture made with Santa and bought him a new toy. We then took him to the dog park so he could run around and play. We did go to church last night and we told Carlie she could go into big church with us, but once we got there she really wanted to go to her kids' church so we just asked the class leader to help her get around. We were glad we went to church because we really felt like the sermon was speaking to us. It was about admitting to God when you really need a miracle and that is just what we did.

Please pray for Mark and I to make the right decisions and please continue to pray for Carlie's healing and comfort.

Love, The Edgington's

Monday, December 3, 2007 8:52 PM CST

Hello everyone,

Sorry for delay in posting but we have had a rough and unexpected week. Last Monday Carlie came home from school limping again and her leg continued to bother her. Thursday was our scheduled office visit. They did an X-ray looking for possible fracture and then scheduled a bone scan for Friday. We got the call late Friday afternoon with the news we did not want to hear. Carlie's cancer has spread. It is in both of her hip bones and they believe it is in one of her ribs as well. We have a MIBG scan scheduled for Thursday to see if there is anything else - as if this is not enough. This weekend one of her underarms started bothering her as well and is a little swollen and sore to the touch - which we know can't be good either. I cannot hide the fact that we are totally devastated and having a difficult time taking this news, regaining hope, and moving forward. It is hard to hold it together for the kids.. I keep thinking I'm going to be tired of crying, but it just hasn't happened yet.

What else is frustrating is that the tumor that is on her scapula bone showed more shrinkage since her scan last month, but obviously this chemo pill was no longer holding her stable in other areas. This new cancer has grown since her scans one month ago. She will go to TCH tomorrow for a GFR (kidney test). Her kidney test number needs to be a 70 if she is at all able to qualify for a clinical trial. The other tricky part of that is typically most clinical trials require you to be off treatment for at least 2-3 weeks prior to starting. So, we had to stop giving her the chemo pill she was on just in case. We will be meeting with her doctor late Thursday afternoon to go over these test results and see what our options are. So if there is a clinical trial available that she qualifies for it may be after the holidays before she can start - which means she will be on no treatment this entire month - that makes us very nervous as well.

What we are praying for: Improved kidney function of at least a 70, a clinical trial available for her - and one that will work - and for tumor growth to halt while awaiting start of treatment.

She had an okay weekend. I can tell this is concerning her as well as she seemed a little more clingy. We are giving her Tylenol with Codeine which seems to be helping her with her leg - she is not really limping too much. She did go to a friend's birthday party on Sunday and a Sunshine Kids Holiday Party on Saturday afternoon. We got the house decorated for Christmas as well. She was pretty tired this morning so I held off from taking her to school until about 9am. I went and took lunch to her and then hung around with her for recess - she really seemed to be doing okay. She even went to dance this afternoon and the class performed the routine they have been practicing for all the parents.

Okay, so we really, really need all of your prayers and encouragement right now.

Love, The Edgington's

Saturday, November 24, 2007 10:50 PM CST

Hi everyone,

Hope you all enjoyed your Thanksgiving like we did. We had family over and ate quite a bit! The desserts are almost gone. Carlie made brownies and I have to say she's just like her mom when it comes to brownies and cookies - she has to have two with a glass of milk! Lexie and Mark made turtle pumpkin pie which was also very good. Have I ever told you how much Carlie loves Uncle Andy?! She pretty much likes all the men in our family - who could blame her, we've got some good ones! Whenever he is around, he never gets a moment to himself - Carlie is usually right in the middle of his lap. After I fixed her dinner plate she was sitting at the table and I thought she was going to break her leg the way she was sticking it out sideways saving the seat next to her for Uncle Andy. She was pretty cute. There was a conversation going on at the table that I overheard... someone asked her if she liked boys and she immediately said "No!" - then there was this quiet pause and then all of a sudden I heard her say "I love them!". Ohhh.. she's going to be trouble in her teen years!

We pretty much just hung out on Friday and ran a few errands. Our neighbor's, the Evan's, invited us over for dinner. We really had a nice time and the kids enjoyed playing together. Despite all this nasty rain, we did get out today and drove up to Madisonville to visit our neighbor's, the Kerbow's, at their property.

Carlie's leg stopped hurting earlier in the week - so hopefully it was just some muscle soreness from the trampoline - which she is banned from playing on for a while! She has a big week coming up with church choir practice - the big Christmas show is next Friday so she has about 3 or 4 practices this week.

We were sitting at the dinner table tonight and noticed her top tooth was pretty loose. About 30 minutes after putting her to bed, she ran out of her room and told us she got her tooth out. She was a little scared because it was bleeding. She had been up there twisting her tooth around to get it out! She decided she wants to hang on to it for a day or two before putting it out for the tooth fairy. Anthony was already asleep so she wanted to show it to him tomorrow. We were singing the song "All I want for Christmas is my two front teeth" to her at the dinner table - and she asked why would someone just want two teeth for Christmas??! She said she wanted 189 things... I have know idea where that number came from, but Santa better get busy!

Love, The Edgington's

Sunday, November 18, 2007 9:19 AM CST

Hello everyone,

Hope everyone is doing well and getting ready to enjoy Thanksgiving. We are looking forward to hosting Thanksgiving Day at our home with family and friends. Lexie will be coming home from school Wednesday night to stay with us but then will be heading right back Thursday evening for Friday's big A&M/UT game! I am sure Carlie will help me do some cooking! She loves to put her apron on that Grandma Martha gave her for Christmas last year and help me in the kitchen.

It was a year ago on Thanksgiving weekend that Carlie's arm started hurting her, then just about a week or two later she had her testing which revealed her relapse. Despite relapse, we are thankful that for the most part she has felt good and enjoyed a normal life this past year. As I have mentioned before, every time she says something hurts it makes us a little uneasy. In the past 4-5 days she has said that her leg is bothering her some... so as much as we try not to worry, you can't help it. So we would appreciate any extra prayers for her. Once again, she was jumping with the neighbors on the trampoline earlier in the week and they play bouncing games and do tricks so hopefully it's just some muscle soreness. We have told her no more trampoline for a while!

She enjoyed a playdate with one of her school friends this past week. She also had her class Thanksgiving Feast on Friday. It was really cute - all the kids recited some Thanksgiving poems for us parents. She is also busy practicing with our church's children's choir for the Christmas program. Daddy got back from a week in Asia Friday so we are happy to have him back home.

A couple more Lunch for Life Stories: My mom's cousins had a reunion in Arkansas and they took up a collection for LFL. As a thank you from our friends, The Nelson's, for them staying at our home during their visit - they made a LFL donation. A co-worker of Mark's (Carol) father-in-law passed away - in lieu of flowers from her church, she asked for a LFL donation. My cousin Ali's husband, Thomas, put a LFL lunchbag in his breakroom at work and is collecting donations. Ali and Thomas are also having a neighborhood holiday party and Ali is setting up a LFL information booth to collect donations. I also know many people have forwarded the LFL website to friends, family, and coworkers that have resulted in donations. These are all such awesome acts of kindness to help bring awareness and funds for research and clinical trials - thank you so much!

Happy Thanksgiving! Love, The Edgington's

Thursday, November 8, 2007 12:23 AM CST

Hello everyone,

Sorry it's taken so long to update the website this week. Everybody had a great weekend! Carlie really enjoyed staying with Aunt Susan, Tyler and Amanda. I enjoyed my girls' weekend in Vegas. Anthony and Mark had a great time at the ranch once again... I was doing laundry today and kept finding deer corn feed in the washer and dryer from Anthony's jean pockets. It brought back sweet memories when he was very young and I found my first pocket full of rocks and a plastic frog! Although sometimes I get frustrated by all the things the kids leave in their pockets, I have to admit I do look forward to what I'm going to find each time... candy, candy wrappers, money, notes, jewelry, old bandaids, etc., etc.... no telling what the teenage years will bring - let's hope for the best!!

I am part of a bible study with a really great group of ladies. This week the chapter was about courage. One of the example stories was about a child who was injured in an accident with head injuries and the parents were nervously waiting outside the Xray room. The story was not about the courage of the child or the parents who were going through this, but the courage of the lady walking down the hall towards them. They saw someone coming down the hall and realized it was the cleaning lady, so the parents really didn't pay attention to her and had just turned the other way and were trying to deal with their pain. Then the mom felt a hand on her shoulder and the lady said not to worry that her child would be fine and she would pray for him. After her child had recovered from his injuries she kept thinking back to that woman and thought about the courage it took for her to stop and say that to her - not knowing how she would have taken it. When you are going through things like this, it takes courage from all sides. I realize for some people (including myself), it takes a lot of courage to step out of your comfort zone to do things for other people - whether it's to offer support, offer prayer, or anything else like that. You never know how the people on the other end will take it or you might even think something so small won't make a difference. I want you to know all those things do not go unnoticed. They are things that have warmed our hearts and things that I have often reflected back on when I need a lift in spirits.

I will share with you one of my stories of courage from a stranger. When Carlie was going through total body radiation during her transplant, we had to ride over to MD Anderson in an ambulance from TCH. We were waiting at the desk to check in and Carlie was laying on the stretcher. I was just standing there glancing around and across the room the elevator doors opened and for some reason this lady and I locked eyes immediately. There was some distance and a half wall covered with plants between us so she didn't even know I was standing there with Carlie. I turned away and looked in front of me still waiting our turn to check in. I felt a hand on my shoulder and turned around and that lady said "I just want you to know that I just said a prayer for you and your daughter". She continued to walk out the door and stood there waiting for her car. After I checked in, I turned to look out the door before I walked away and she turned to look at us one more time as well. Although that all happened so fast, when I think about it - it all seems in slow motion and I remember that extra little boost of faith it gave me.

Hope everyone is enjoying their week and this nice weather!

Love, The Edgington's

Thursday, November 1, 2007 10:28 AM CDT

Hi everyone,

We are still so excited about Carlie's great scan results that it is made this week so enjoyable - along with this awesome weather! Carlie has not been complaining of her arm hurting anymore. She had a birthday party to go to Monday night at Pump-it-Up - she had a lot of fun with her friends - but she said she hurt her leg - I think there was some pile up of kids on one of the jumping things or something. It seems to be better now - it didn't slow her down at all during our Halloween block party and trick or treating last night! Carlie dressed up as a fairy and Anthony dressed in Camo (I'll put new pictures up next week.) The older kids on the street came up with games to play, scavenger hunt, etc... they really had a blast.

We've had another week of appointments around here. Both kids had dental appointments and everything looks good. Anthony is going to have to get braces soon. Carlie had her routine check-up with her kidney doctor yesterday. Her creatinine is holding very good and her doctor said that she is growing and based on her calculations of everything that there is probably improvement in her kidney function number as well (we don't have a reason to do that GFR test right now). Took Anthony to the doctor this morning - his allergies have been so bad so we got some prescriptions for more heavy duty medicine!

I heard of a couple of neat Lunch for Life stories this week that I wanted to share with you. One of our friends said she stops at a coffee shop every morning and the owner took a bag and put it by the register with a bowl so people can drop in money and then after a while she'll go donate it to LFL. Our 4th grade neighbor, Bella, spoke to her class and passed out LFL bags to her classmates to take home. These are great stories and if you have any you would like to share, please send me an email or leave a note on this website. I still have a lot of Carlie's LFL bags if anybody would like some to hand out - I can get them to you.

We all have a busy weekend. I am going on a girls' trip to Vegas! Mark and Anthony are going to Uncle Andy's ranch with the guys and Carlie is going to stay with Aunt Susan and cousins Amanda and Tyler. Although we are all going our different directions, everyone should have a good time!

Have a great weekend! Love, The Edgington's

Friday, October 26, 2007 5:03 PM CDT

Hello everyone,

Carlie completed her testing this week - MRI, CT Scan, and MIBG Scan. I have been gone all day today so I'm just now getting home to update the website.

It is with great JOY, that I get to write not only are her scans STABLE once again, but the MRI showed some minimal tumor SHRINKAGE!!! That's what we've been praying for - not only for stability but for shrinkage!

She has still said a couple of times that her arms hurts a little, but after her doctor examined her they think it's just something muscular - we had friends in town last weekend and the kids jumped for hours on the trampoline. We also have friends in town again this weekend. Carlie and Anthony had early release today at Noon so we picked them up and took them to meet some friends where they keep there horse and the kids got to do some horseback riding. You know how much Carlie loves that! Anthony was really enjoying it as well.

A couple of our other Woodlands Neuroblastoma friends had scans as well and also received good results! Please continue to keep our buddy, Batman, in your prayers as he is starting treatment back for his relapse.

We are going to definitely enjoy our weekend. We hope you all do as well!

Remember... www.lunchforlife.org Help spread the word!

Love, The Edgington's

Monday, October 22, 2007 7:54 PM CDT

Hi everyone,

We just wanted to thank all of you who were able to come out to Dosey Doe’s and support our fundraiser. It was truly a special evening for us. You all have been supporting us in so many ways this past 2-1/2 years and last night proved it even more! We received numerous comments on what a great group of friends and family we have and we could not agree more. We also wanted to thank those who sent donations with friends/family and those that have made donations on Carlie’s behalf to www.lunchforlife.org.

Thank you to Joan and Steve Said of Dosey Doe for letting us host our event there and for creating such a great dinner. Thank you to my friend, Brenda Hallberg, for helping me get this fundraiser started and for arranging the musicians – Doug Wooley and her daughter, Kathryn Hallberg! They were so awesome and what about that song Kathryn wrote for Carlie – really cool – Carlie loved every minute of it! Thank you to my friends Brenda Hall, Alison Kerbow, Helen Evans, and of course my husband, Mark, for handling the raffle. I also wanted to thank all those who helped get more items donated for our raffle! Thank you to our brother-in-law, Mike, for taking pictures all evening.

Now, on to the really, really, great news…. We raised $7200.00 last night! And that’s not even including the donations that have been made online to Lunch for Life. This event far exceeded our expectations and we are truly appreciative!

Remember… a little money given by a lot of people can make a big difference! Give up a lunch, spread the word, and help save lives! www.lunchforlife.org

ON ANOTHER NOTE: Please keep Carlie in your prayers... this is the week of her scans/tests. Several times this weekend she said her arm was hurting and there is a place on the top of her shoulder near her neck that is a little puffy and sore to the touch. We are holding on to our faith and praying for the best possible results.

Love, The Edgington's

Friday, October 19, 2007 10:04 AM CDT

Hi everyone,

We are looking forward to Sunday's fundraiser at Dosey Doe's. We are expecting an awesome turnout and are so thankful for donations received so far on the Lunch for Life website... you guys are wonderful!!



UPDATED FUNDRAISER INFO :

I sent a big Evite out to a lot a people that I had emails for, but if you are reading this website, consider yourself invited. Here is the information that was on the Evite. If you think you are going to be able to come, please leave me a note on the guestbook or email me with how many people plan to come. My email:
charonedgington@comcast.net


You all know the difficult journey Carlie has endured during her initial treatment and now through relapse. As a family, we wanted to do something to help raise funds for Neuroblastoma research. As we see choices for clinical trials are limited, funding for research seems even more crucial. I hope you can join us for some good food, good music, and good fellowship. Carlie’s oncologist will also speak for a few minutes about Neuroblastoma and the research they are working on. We also want to tell you a little bit about an organization called Lunch for Life. All proceeds for this event will go to Lunch for Life for Neuroblastoma research locally at Texas Children’s Hospital.

* Doors open at 4:00pm. A nice buffet should start around 4:30pm.
* Face painters for the kids!
* Live music
* RAFFLE: Tickets will be sold for a drawing of generously donated items (cash or check payable to CNCF). Tickets are $5 each or 5 for $20.

(2) $50 gas cards donated by Shell Oil
(4) $25 Dosey Doe gift certificates
(1) Chuy's gift card
(1) $50 Arbonne gift card donated by Jennifer Hilburn
(4) tickets to Houston Dynamo soccer game
Golf for 4 at Windcrest donated by Rob LaTour of Interlinc Mortgage and Dawn Ellen of Century 21 First Woodlands
(1) Tiffany & Co. crystal box donated by Galleria Tiffany Store
(1) HP/Compaq Notebook Computer donated by HEWLETT-PACKARD

ADMISSION PRICE: $30 per Adult and $10 per Child 12 & Under (cash or credit card; includes food and non-alcoholic drinks)

LOCATION: Dosey Doe Restaurant
25911 I-45 North between Woodlands Pkwy & Sawdust

Please enter the restaurant through the doors at the back of the building. There will be a cashier where you can pay your admission and receive an armband. Please be patient as the parking lot is small… there will be a parking attendant to help direct you.

PLEASE RSVP if you think you will be attending so we can give the restaurant an idea of how many people will be in attendance….Thank you!

Let’s have some fun while supporting a great cause!!

ALSO: If you cannot attend and think you would like to help our fundraiser, feel free to go to the following website to make a donation:

WWW.LUNCHFORLIFE.ORG

After you click "Donate", follow the instructions and choose Carlie Edgington to donate "In Honor of".

THANK YOU and hope to see you there!

Love, The Edgington's

Wednesday, October 3, 2007 8:35 AM CDT

Hello everyone,

Carlie had a great weekend. She and Anthony enjoyed their stay with Papa and Gram. For some reason the chicken strips at Papa and Gram’s house always taste better than ours, so she is always excited about that! Yes, there are times she’s easy to please! Mark and I had a good time visiting with Lexie and watching the Aggies beat Baylor! We even took Rocco along for the ride to visit the girls.

We are heading out of town for our Faust Ranch trip this weekend. It will be a lot of fun and I will let you know all about it when we return!

MARK YOUR CALENDARS… Before we leave, I wanted to also let you know a little more about the fundraiser for Neuroblastoma Research. I will send out more detailed information with ticket prices when I get back in town. It will be held on Sunday, October 21st, 4:00pm - 7:00pm, at Dosey Doe’s in The Woodlands. The restaurant is closed to the public during this time, but we are hoping to fill it up with family, friends, friends of friends, all the people who’ve been supporting us along the way! I know there are some that we have never even had a chance to meet and would enjoy meeting you. If you read this website, it means you are invited! I hope some of our other fellow Neuroblastoma children and their families/friends can come as well…I would like to be able to introduce these amazing children to you all. After I send more details, I will be asking for RSVP’s so we can get an idea of headcount for planning purposes (and to make sure we don’t go over firecode occupancy!!) I want to thank my friend/neighbor, Brenda Hallberg, for getting us connected with Dosey Doe owners and helping us plan this event. All profits will be donated to an organization called Lunch for Life for Neuroblastoma Research at Texas Children’s Hospital. I will tell you more about this program at the event. Basically, it’s just trying to spread the word to a lot of people to ask them to give up a day’s lunch money for Neuroblastoma Research… it can help make a difference! And if you cannot make it to the event, it's easy to go online and donate in Carlie's name.

Have a great weekend. Love, The Edgington’s

Friday, September 28, 2007 10:33 AM CDT

Hi everyone,

Everything continues to go good and normal here! So normal that Carlie gets in trouble for things she's not supposed to be doing, and she fell off her scooter and cut her finger pretty bad - "do we have to go to the ER" immediately popped in my mind - but no, it was a typical, bad finger cut that is still sore but healing, and she gets in arguments with her brother on a daily basis... that kind of normal stuff that you wish wouldn't happen but at the end of the day, I'll take it! She is doing so good in school - she has made 100's on her spelling tests so far and is so proud of that. I can see a little perfectionist in her... her writing has to be just perfect, she gets upset if she misses a word during spelling practice, etc.

Last weekend we had our girls day at the mall and then had her much requested, Los Cucos, mexican lunch with cheese dip! She was practically licking the bowl with her fingers. Her hair is growing enough so that she has bed head now. I took her to a salon in the mall and they had her sit in a chair and used some sculpting cream on her hair to give it a little texture and made it look really cute. We then went to an accessory store and she picked out some new barettes, hairpins, etc. She really had a good time with that and we fix her hair every morning, although by the time she gets home from school the barettes are usually in the backpack.

Tonight the kids are going to spend the night with Papa and Gram. They are really excited to go over their house, sleep in the Micky Mouse room, and see their turtle Ms. T.
Mark and I are going to dinner and a movie all by ourselves! Tomorrow we are going up to college station to visit Lexie and go to the Aggie football game.

I wanted to also let everyone know that we are planning a casual event to help raise money for Neuroblastoma Research. As you know, this is a horrible disease with a tough treatment plan and patients still relapse! So much more needs to be done with research and clinical trials and there is not a lot of funding for pediatric cancer compared to other types of cancers. This event will be in The Woodlands later in October. I will post more details soon! We hope you can join us! Have a great weekend!

Love, The Edgington's

Saturday, September 22, 2007 8:40 AM CDT

Hi everyone,

Carlie had a very good clinic visit on Thursday. Well, I should say the results were all good but she did have a little bit of a meltdown having her port accessed. It's really nice only having to go once a month but the more time in between visits makes her more anxious when it's time to get her poke. The clinical trial she participated in last December still requires for her to give blood samples occasionally so they had to take a little extra blood this time so it just took a little longer.. which was hard on her (and mommy too!). Her counts were all good (even her creatinine was down a point - that's the number tied to kidney function). Her hemoglobin was a little bit lower this month but could be due to a little bit of a cold - we'll check it again next month. The buzz at clinic was all about the upcoming trip to the ranch - it will be so much fun! The ladies at clinic who have been there before tell us how awesome this place is - from the activities to the food! We are so appreciative to be included in this adventure!

Carlie continues to practice riding her bike without training wheels and is getting really good - Daddy is getting a little tired running behind her but we're not ready to let her go it alone yet. We don't need any more broken bones in the house for a while! Her tooth is still hanging on... even her doctor was saying that she cannot believe that tooth is still in her mouth - everyone's offered to yank it out but she wants no part of that! I took her to the skating rink last week and she roller bladed for the first time.. she did great and had so much fun skating with friends from school. She only got about 2 or 3 bruises from falling!

Daddy and Anthony are at my aunt and uncle's ranch for the guys' big dove hunting weekend. Anthony was so excited about going - he couldn't wait to eat bacon wrapped dove and hang out with all the guys. Carlie and I went with our friends, Jodi and Landon (her friend from neighborhood and school) to play glow-in-the-dark putt putt and eat pizza last night. Today we may have a girls' day at the mall.

Have a great weekend and please continue to keep Carlie in your thoughts and prayers.

Love, The Edgington's

Tuesday, September 18, 2007 11:43 AM CDT

Hi everyone,

Well, I finally changed the homepage photo. I know it's been a while but when I find a really cute picture I love it's hard to replace it! I go to her website everyday and just take a minute to look into that beautiful face without her saying "what are you looking at me for?!". Just like everytime I help her change her clothes I try to check out where her tumor is without her noticing - trying to see if it looks bigger, the same, or possibly even smaller (I keep hoping!).

We have had a nice week and weekend. Our friend, Carol, was in town this weekend - we had fun hanging out with her. Carol and I had some girl time - dinner, movie, shopping, etc! Daddy and the kids enjoyed some time together as well doing errands, working around the yard, swimming and playing. We all went out on the boat on Sunday and Grandma and Grandpa Shipley joined us as well. It was absolutely gorgeous weather.

Daddy is helping Carlie learn to ride her bike without training wheels - she is doing so good (check out picture on photo page). She is also very close to losing her second tooth. It's hanging on by a thread and the tooth underneath is already coming in. Her school is having a skating night at the local skating rink tonight so I am planning to take her to that. Anthony had his wires removed this morning from his broken jaw. The doctor said everything looks really good. Since he had sedation, he needs to stay home from school the rest of the day - but he is already bored and wished he could go back to school. He's acting very agitated so I know the sedation has not worn off and he needs to stay home.

Carlie goes to clinic this Thursday to have her counts checked and an office visit. Her next set of scans are scheduled for Oct. 23-25. Let's pray for her to continue to feel great and no new tumor growth. We have a busy October coming up and want her to be feeling good. We are going to a ranch in the Hill Country for a weekend trip for children with Neuroblastoma and their families, our friends Craig, Gretchen, and their kids are coming for a visit, and then our friends Brent, Liz, & Danny are coming another weekend for a visit.

Have a great week. Love, The Edgington's

Tuesday, September 11, 2007 1:24 PM CDT

Hello everyone,

Carlie has had another great week. She continues to enjoy school and dance. She also started Children's Choir at church this past Sunday and said she would like to also try out for one of the dance parts for her age group. I absolutely love how outgoing she is and that she isn't afraid to try new things.

Last Christmas, me and our friend Jody bought Mark and David gift certificates to a driving school at the racetrack in Dallas. The guys, along with our friend John, met up in Dallas this weekend. They completed a instructional driving school and then got to drive 10 laps in a Nascar around the track at speeds up to 150mph. Mark said they had such a good time and it was a really great experience.

Friday night Anthony was invited to spend the night with a friend so Carlie and I just hung out together at home. I told her she could have a sleepover in my bed. The next morning she was snuggling up with me and I started singing "My Girl" to her and she just rolled her eyes and said "Oh, No, that is SO annoying!" I also love how outspoken she can be - maybe not always at the best of times or in a very nice way - I just hope that she's a lot nicer to others in school, church, etc! But we are really trying to work on the manners with her - even big brother, Anthony, tells her she needs better manners!

Jody came in from Austin Saturday to hang out with me and the kids went to spend the night with Grandma Martha. On Sunday she took them to the butterfly museum (they got to see butterflies hatch), frog exhibit, and the Imax. They said they had such a great time and that she cooked a really good breakfast! Pretty much anything Grandma cooks is good... I can attest to that! Mark got home about lunchtime and we got to spend a little time together and went to the Home & Garden show - we are thinking of re-doing some things in our kitchen and wanted to get some ideas - I think it just made me more confused! Maybe our kitchen is just fine the way it is?!

Yesterday when I picked the kids up from school and was heading to dance, Carlie said one of her friends in her class has a boyfriend named "John" in the class. I asked her if "John" was cute and she said "not to me!" I asked her if she had a boyfriend and with a sly grin she said "Trent-y". Trent is one of the triplet boys down the street that Anthony plays with - they are about to turn 9. She had a crush on Bryce (one of the other triplets) last year because he would come down and play video games with her - but he quickly let her know that he was already spoken for. Trent is her book buddy at school this year so I guess it's his turn to be the twinkle in her eye - and he probably has no idea! I asked her if she only liked older boys and she said "yep"! When we arrive at dance she hops out of car line and heads into the building while Anthony and I look for a parking space and Anthony says "It's like she's 18 or something"! What is a Mom to do?! Luckily she goes on with her day with no mention of boys!

Once again we have another week with no clinic appointments...yeah! She did have her kidney doctor check-up scheduled for this past Monday but I couldn't bear the thought of taking her out of school and driving down there just to have her blood pressure checked and some other things checked that we will be doing next week at clinic. So, I made the executive decision to reschedule it for absolutely no reason except pure laziness on my part!

Please continue to keep Carlie in your thoughts and prayers. September is Childhood Cancer Awareness Month - please keep all children with cancer in your prayers! Our thoughts and prayers also go out to all those affected by 9/11.

Love, The Edgington's

Monday, September 3, 2007 8:58 PM CDT

Hi everyone,

Carlie has had a great week. She really seems to be loving school - although on day 2 she already started in with asking to sleep longer and be a car rider. I am trying my best to keep her riding the bus with Anthony and then I leave right after that for a nice walk! I am not sure how long I can keep holding out - I know she's not much of a morning person and that extra 30 mintues sleep does seem to help her mood a little - I put her to bed earlier tonight since she stayed up a little later this weekend. It was nice to have a longer weekend after the first full week of school.

We enjoyed the weekend - last minute Friday evening we went with some of our friends on the street to another friend's house in the neighborhood. The kids had fun swimming and the adults enjoyed hanging out. Carlie was such a good helper doing yardwork with Daddy on Saturday. We went to church Sunday morning and then we had friends over for a cookout and swim Sunday evening. Carlie decided she would like to sign up for the Children's Choir at church again - practices start next weekend and they will be part of the Children's Christmas program in early December.

We have this really large, pretty cool looking spider that has made his home up high on our front porch. Anthony made this whole viewing area for all the kids upstairs on the walkway to his room. He made signs (Beware of Icky Spider) and hung them along the stairway, he had a visitor sign-in sheet, binoculars to view the spider up close, and a large stack of books to look at about spiders, nature, etc. Today I had made plans to have lunch and shop with friends and Daddy, Anthony, and Carlie went to Greg and Debbie's house so Dad could help set up their new computer - and they got some homemade hamburgers out of the deal!

We have a normal week planned - no doctors appointments (yeah!). We want to wish Lexie good luck - she will be taking the MCAT test this Friday (Medical College Admission Test). She has been working so hard all summer preparing for this difficult test - and she'd like to only have to take it this one time!! We love you Lexie - YOU GO GIRL!!!

Have a great week everyone!

Love, The Edgington's

Monday, August 27, 2007 7:44 PM CDT

Hi everyone,

Thankfully we were blessed with stable scans once again!! I really did not give it a second thought this weekend and was expecting stable results, then I got a message from the doctor this morning to call her back for the results (she said to have her paged when I called) - all of a sudden I just started to panic a bit - you know, can't breathe, heart racing kind of panic - you just never know what they are going to tell you. I always loved to go to Astroworld when I was a kid (amusement park in Houston)... my mom would take us kids and we would stay all day long riding the rides - it was so much fun - but I would never get on the roller coasters - I feel like we've been on one the last two years and can't get off!! But as long as Carlie is on this ride with us, I'll stay on forever!

Dr. Kilburn is the one who I talked to today (Dr. Russell is her main oncologist but she is cutting back her hours and taking Mondays off). Dr. Kilburn said the radiologist called the scans stable/no change from previous scan. She said when she really looks at it she thinks it might look ever so slightly smaller or a little "less angry" as she put it - but she said she might just be a little biased! So, for now, we will be happy with stable.

The kids had an awesome first day of school. They both love their teachers. Carlie is not much of a morning person, especially during the school year. She had actually woke up on her own, got dressed and her teeth brushed without any pushing along from Mom! She was smiling ear to ear wanting to get to the bus stop. I thought this is great now, but she will be tired and moody once school is out and not want to go to her first dance class. But I was wrong - she was happy when I picked her up and excited to get to dance. She was having a good time learning new things in dance and she was shaking her booty! How do these girls grow up so fast?!

Carlie will go back to clinic in about 3-1/2 weeks for labwork/office visit. Until then, let's pray for continued tumor stability and for her to just be a normal kid going to school and having fun!

Love, The Edgington's

Thursday, August 23, 2007 7:05 PM CDT

Hello everyone,

It's been busy since we got back from Lake Travis Tuesday afternoon. We had an eventful ride to the lake - it took us 6-1/2 hours for the typical 3-1/2 hour trip. We spent over 1-1/2 hours on the side of the road with a tire blowout from our boat trailer. After we finally got it fixed we were on the road for about 30 miles and then another blowout!! Obviously, the tires were no longer good. Since we didn't have a spare, we had to unhook the boat, go back into nearest town, and thankfully found a tire place that had 2 of the tires we needed and a fully equipped truck to come to our trailer and replace everything onsite! We had such an awesome time at Lake Travis - there were 20 of us - grandma, sissy, aunts, uncles, cousins, etc. We did a lot of boating - Mark even went tubing with Carlie - Lexie drove the boat slowly so Carlie wouldn't fall off. The house we rented had a pool so we did a lot of relaxing and swimming as well. Eat, drink, eat, swim, boat, eat... what could be more fun?! We picked up Rocco from the kennel Tuesday evening - he completed his 2-week obedience training and the trainer said he did really great - since he is still such a puppy we really have to work with him daily to keep it up. The kids are doing great at working with him multiple times a day. We really missed him and he was happy to see us!

Carlie had her clinic visit today. The doctor said she looked really great and her counts were good. She felt around on her tumor and said it did not feel any bigger to her which she is pleased about. Tomorrow is the MRI of her shoulder, abdomen, and pelvis and she said she is expecting good results. They will call us Monday or Tuesday with those results. If everything is fine, we will continue with our current treatment plan, go back in one month for an office visit, and the next set of scans will be scheduled towards the end of October.

The kids will start school on Monday and Carlie also starts her Jazz class on Mondays. I've taken her shopping to get a few new outfits and shoes - she is really getting into all this girl stuff - absolutely LOVES to shop for clothes and shoes and I have a hard time saying No to her... I wonder why?!! Anthony asked today why is she getting another pair of shoes - he has his brown pair and his black pair and his flip flops. I told him he just better start getting used to that early in life - girls gotta have a lot of shoes to match all those different outfits! His jaw is doing great - he got to start chewing yesterday and has one more week of wearing the bands.

Please continue to pray that the MRI results are great as we are expecting! I plan to put new pictures up this weekend - still trying to catch up on laundry and getting ready for school!

Love, The Edgington's

Wednesday, August 15, 2007 2:38 PM CDT

Hi everyone,

We had an awesome trip to Destin, Florida!! We got home last night. The kids did so good on the 10 hour drive - they watched movies and played Nintendo games... what happened to the days of playing the license plate alphabet game and travel bingo??! Destin had beautiful white sand and blue/green water. We just relaxed and swam in the pool, in the ocean, and played in the sand. The first day out on the beach we saw a small sand shark swimming up and down pretty close to shore and the kids both got stung by jelly fish... once we got past that, everything was good! They had their own private sleeping area in the room with bunk beds and a flat screen TV - so that was pretty exciting for them too! Now that we are home they are really missing Rocco. He is staying at the kennel for two weeks attending obedience training. We are unpacking, doing laundry, and re-packing as we leave Friday for Lake Travis. After that, it will be back to the real world... clinic visit and MRI later next week. Somehow going on vacation I thought maybe that would all go away - but it didn't - but at least it has been a nice break! Anthony had his check up with his oral surgeon today - he was very pleased with Anthony's progress!! He said in one week he can start chewing food again - but to start slowly. He will continue to wear the bands at night for two more weeks. In mid-September he will go back and have the wires removed.

Please continue to pray that Carlie's tumor remains stable (or shrinks - let's start thinking big here), for no new tumor growth, and continues to feel great like she does now so she can start school. My baby will be starting full day school - first grade - on August 27th - I can't believe it! I am going to miss my running-around buddy! I don't think I will have a chance to update pictures until after we get back from the lake. Enjoy your weekend!

Love, The Edgington's

Wednesday, August 8, 2007 8:00 AM CDT

Hi everyone,

Carlie has had a great week - busy playing with friends, swimming, and I took them to see the movie Underdog which they loved (and I actually stayed awake for the whole movie!). It has been so nice to not have to go to clinic... even to just go for counts is a minimum 4 hour trip.

We did our family baptism after the Saturday evening service this past weekend. It was so nice! I had went to our church's website to show Carlie a baptism video so she would know what to expect... she said she didn't want anybody to push her under the water, she could just do it herself! I told her they weren't pushing people under - just holding on to them. She was excited to have it done... what child wouldn't be excited about getting in a nice, warm pool at church?! We had so many family and friends come to church service with us and then to the baptism - there was also a rainbow in the sky - it couldn't have been any better. One of our previous neighbor's who is also the Children's Pastor, Pastor Rob, was the one leading the baptism. He and Pastor Dustin had also came to the hospital the day of Carlie's initial surgery in 2005 to pray with us... another reason that made this more special. Both Carlie and Anthony were really excited and kept saying how nice and special that was the rest of the evening. Carlie said she had so much fun that she'd like to do that again another time! Thanks again to all our family and friends who shared that time with us - whether present or in thoughts.

We were able to take the boat out Sunday for a cruise and lunch on the lake. Today will be a busy day packing and getting everything ready for our drive to Destin tomorrow. The kids are really excited and looking forward to a beach vacation - although Anthony watched Shark Week on the Discovery channel last week so we may not be getting in the ocean!

Have a wonderful week!

Love, The Edgington's

Wednesday, August 1, 2007 4:18 PM CDT

Hello everyone,

Carlie has been doing great and had a good weekend. Our friends, Dave and Jody, came in town to visit with us this past weekend. Carlie got to go to her friend, Tori's, birthday party on Saturday. The kids spent the night with Grandma and Grandpa Shipley Saturday night so we could go out with Dave and Jody. Other than that we just took it easy and the kids have also been able to do some swimming lately since we have finally been getting some days without rain! Grandma Martha also came by for a visit on Saturday and brought both the kids new Webkinz - their little Webkinz family is growing!! They were very happy and I think the excitement Carlie showed was definitely worth it... she was jumping up and down screaming!

Anthony had his checkup with the oral surgeon yesterday. He now only has to wear the rubber bands during the night. He still can't chew, but with the bands off during the day he can talk a little easier and can try some soft foods by putting them on his tongue and swallowing them down. We went to the mall today and he actually was able to get some french fries and part of a kids cheeseburger down by breaking it into small pieces and swallowing it. He was pretty happy about that but still said he can't wait til he can actually chew something! He also has to exercise his jaw four times a day which he is doing pretty well with.

We are planning to do our family baptism this weekend so that will be something pretty special for Anthony and Carlie. We are also hoping for nice weather this weekend so we can try and go out on the boat. Your continued thoughts and prayers for Carlie are truly appreciated.

Love, The Edgington's

Friday, July 27, 2007 2:35 PM CDT

Great news everyone... Carlie's test results are "stable"! This means no more tumor than before, no less tumor than before. We would have loved for the tumor to have shrunk but we will take stable for now!! Since the CT and MIBG tests are fine, her doctor felt there was no need to push up the MRI scheduled for August 24. In fact, she said since this chemo pill keeps her counts in check there is no need to come back until August 23rd for office visits and counts and then the MRI will be the next day. So that was even better news - what a nice break we will have!!

I just wanted to also thank everyone for all their thoughts and prayers for Carlie and Anthony as well. Anthony has enjoyed the notes, cards, gifts, and special attention he has received since breaking his jaw. He did say yesterday that it would have been much better if he would have broken a toe or finger! I totally agree. He did manage to eat a whole donut yesterday by picking tiny pieces off and pushing it through the opening on the sides of his mouth!

We hope you all have a great weekend!

Love, The Edgington's

Tuesday, July 24, 2007 10:34 PM CDT

Hello everyone,

We had a very nice, relaxing weekend! Mark returned from Asia on Friday afternoon. My friend, Vivian, arranged for Carlie to visit a horse farm that her nieces work at on Friday evening. They spent two hours with Carlie showing her the stables, letting her groom Coco, showing her how to ride - they lead her around the arena, put cones out for her to weave in and out of, groomed Coco some more (I think that was one of her favorite parts!), etc. At the end they presented her with a certificate and trophy... Carlie was soooo excited! She said "I have none trophies"! She was happy to receive her first trophy ever! She was showing it off for the next couple of days and telling us Coco was her best buddy ever!

We really just took it easy on Saturday. Mark and Anthony went to hit golf balls with some neighbors. Carlie and I baked a cake for Grandma Shipley's birthday. On Sunday, Lexie came over for lunch and a visit and then Grandma and Grandpa came over so we could all eat cake and ice cream. Even Anthony used his fingers and took some of the cake and icing and pushed it through the little opening on the side of his mouth - he was in heaven!

Carlie had her CT scan on Monday - we had to wait about two hours before they called her back but the scan only took about 10 minutes. Anthony had his checkup with the oral surgeon today. They took the rubber bands off and had him open his mouth a little and brush his teeth the best he could - it was painful for him. Now they put small elastic bands back on that allow his mouth to open just a little bit more. They want him to start moving it a little more to exercise it but is still not allowed to chew. Right now, it's just sore from the appointment today.

Carlie seems to be over the stomach bug from last week and she's feeling good. She will go to TCH tomorrow for her MIBG injection and then back Thursday for the MIBG scan. Please continue to pray for great results!!

I'll try to post new pictures in the next few days.

Love, The Edgington's

Thursday, July 19, 2007 10:12 PM CDT

Hello everyone,

It continues to be a little bit of a tired, stressful week but we've had some fun along the way. Tuesday night we went to a restaurant where local musicians can perform - we went to see our neighbor/kids' babysitter, Kathryn, play her guitar and sing some songs she has written herself - she was awesome as usual! It was a little rough on Anthony with all that food surrounding him and he just was able to have a smoothie. Carlie felt fine all day Tuesday so she went back to VBS on Wednesday and that night we went to the circus with Brenda and Trace. The kids absolutely loved the circus. It was another difficult start for Anthony smelling all the food, popcorn, etc., at the circus but once the show started I think it got his mind off of it (it's going to be a long six weeks!). While we were there, Carlie started saying her stomach hurt again (and, of course, mine followed shortly thereafter!). It was about 11pm when we got home and she and I didn't get to sleep until after 2am (she threw up about 4-5 times). So, I kept her home from VBS again. She seemed to feel fine this morning. I was very nervous going into her clinic appointment this afternoon but felt much better as we left. Her doctor pushed around on her abdominal area and really feels like Carlie has a gastrointestinal thing going on (felt bubbly/girgling stuff going on - should work itself out shortly). She said if the MIBG scan shows something suspicious in that area next week they should be able to get the MRI bumped up to take a closer look. Her counts were all very good and even the chemistries numbers were all back down.. so she definitely felt that the rise in numbers was due to the Celebrex. She is reluctant to start the Celebrex again - wants to protect her kidney as best as we can. She said we'll see what her scan results are next week and go from there.

Congrats to our friends Hans and Patrick who got great test results today!

It has been a long and too eventful two weeks since Mark has been out of town so we are looking forward to his return home tomorrow! Hopefully we can all get some much needed R&R. We ask for continued thoughts and prayers for great test results next week.

Love, The Edgington's

Tuesday, July 17, 2007 11:21 AM CDT

Hello everyone,

For the most part we are all doing good. Starting Sunday, Anthony started feeling a whole lot better. He was even up to going to a get together for cousin Samantha's NYU graduation. He even played with Rocco when he got home - that was the first time all week - Rocco has been starving for some attention from Anthony. Yesterday he played outside for a few minutes and then had a friend over for a little bit. Carlie started VBS at our church yesterday. Anthony stayed over at our friend, Alison's, house while I dropped Carlie off and then went to a doctor's appointment for myself. My car started shaking and a warning light came on (just had it in the shop for this same thing a couple of weeks ago) and when I left doctor's office to go get Carlie it started smoking. I called the dealer and they said not to drive it in so I went to the church parking lot and had it towed from there. Thankfully I ran into my friend Heather and she took Carlie over to Alison's house while I took care of the car situation. As I was on the phone with Roadside Assistance and they were telling me it would be an hour before the tow truck got there, he was actually already in the parking lot looking for me... I was very excited since it was so hot outside! Got to the dealer and they gave me a rental car to use. After I got back home we took Anthony to the pediatrician's office and he had his sutures removed - it is healing up really nice.

This is Carlie's first year for VBS. She was a little hesitant but for the most part she said she had a good time yesterday. Last night around 6pm she started saying her tummy really hurt - which means my tummy started really hurting (we can't help but fear the worst with every ache and pain) - I could tell by the way she was acting that it was really bothering her. I gave her some naseau medicine but that didn't seem to help. About 1am she woke up and wanted me to sleep with her - I could hear her tummy making a lot of noises and about an hour later she did throw up one time. She immediately fell asleep after that and says she feels fine today. I kept her home from VBS today just to make sure. Hopefully it was just a little stomach bug or something she ate didn't agree with her. We have tickets to the circus tomorrow night so hopefully everyone is well and up to going! Oh.. and she has another loose tooth so she is patiently waiting for it to come out!

Thank you to Aunt Susan for coming over Saturday and spending all day with the kids so I could get a lot of errands done! Carlie has a clinic appointment this Thursday and then next week is her CT scan and MIBG scan. Her MRI is scheduled later in August. Please pray that the rest of our week is uneventful and also for great test results next week!! I was just thinking yesterday that it has been 7 months since Carlie relapsed and we have to be grateful and thank God that she has been doing so well under these circumstances. We also pray for great test results for our friends, Hans and Patrick, who have testing this week and for Will who has testing coming up last week of July.

Have a great week! Love, The Edgington's

Thursday, July 12, 2007 4:02 PM CDT

Hi everyone,

Carlie is still doing great and enjoying Science Camp. Thanks to everyone who has helped out by watching Carlie and taking her places while I have had to take Anthony back and forth to the hospital and doctor's office.

Anthony had to be at the surgeon's office at 1pm today to have his jaw wired and we were back home by 3pm! They said he did a great job. He is actually sitting up watching TV - he is having a little bit of bloody drool. He is still numb so he is not really having pain yet but that should start wearing off soon. I just gave him some pain medication - he was very scared to try and take it but once he started taking it with the straw he was able to suck it up pretty quickly. He'll go back next Wednesday for a check-up.

We are just going to be hanging out tomorrow and hopefully get rested up - not sure how the night will go. I think I am getting a little tired - I tried to give Anthony Carlie's blood pressure medicine last night and today when the microwave beeper went off I opened the kitchen cabinet to get the food out!!

Please continue to send good thoughts and prayers our way.

Love, The Edgington's

Wednesday, July 11, 2007 3:09 PM CDT

Hello everyone,

We have had a very crazy week. Mark left Monday morning for Asia for 12 days. I spent 5 hours in the Woodlands ER Monday night... but not with Carlie! Anthony had a really bad fall on his bicycle Monday evening (yes, he was wearing his helmet). He has a pretty good cut under his chin bone which required 6 stitches, a contusion on his elbow, bit a hole on the underneath part of his tongue, has a slightly loose permanent tooth... and to top it all off broke his left jaw bone. He beat himself up pretty good, but he was so brave and did such a good job with everything in the ER. There was nothing they could do for the jaw during the night so then sent us home about 1:30am and soon as I got up Tuesday I starting calling insurance company, their dentist, oral surgeon, etc. I was able to get him an appointment yesterday and they scheduled us to come in at 6:30am this morning to basically wire his jaw shut. About 4:30am he woke up with a fever so I had to take him back to the ER so we missed his surgery appointment. They did a CT scan to check for an abcess and also did bloodwork. Everything was good except they said it just looked like mild tonsillitis - unrelated to accident. Gave him a shot of penicillin and sent us home about 10:00am. He is rescheduled to go back tomorrow afternoon for his jaw. His jaw will be wired shut for 6 weeks... that means everything he eats will have to be through a straw. I feel so bad for him but he is really being a trooper. He seems to be feeling a little better today - had some chicken broth and milk this afternoon and played on his computer for a little bit. Thank you to Grandma Shipley for spending the night to hang out with Carlie today and to Grandma Martha for hanging out with me in the ER.

Carlie is doing great... it feels so strange making arrangements for her while tending to Anthony's medical needs. I think she got a little pleasure out of that knowing it was not her this time having to go back and forth to the doctors! She is having fun in Science Camp this week.

Please say a little extra prayer for Anthony this week and for my sanity!!

Love, The Edgington's

Saturday, July 7, 2007 2:11 PM CDT

Hello everyone,

Hope you all enjoyed the 4th despite this crazy weather that keeps lingering around! We were able to take the kids to the 4th of July parade and fireworks here in The Woodlands. The kids really enjoyed the parade - we saw lots of fire trucks, rescue vehicles, lifeflight flew over, their dentist was sitting in a dental chair on a float, we saw Carlie's dance teacher, our neighbor's on their church's float, etc.... and the rain held out! That evening we went with our neighbor's to Market Street to watch the fireworks. Carlie stepped up on a flower bed ledge, fell off and bumped her head really hard - a knot immediately popped out and she also had a small cut. She did lots of crying but finally got past it and despite the crowd we thought we found the perfect seat for viewing the fireworks. Well, once they started they were not very high up in the air so we couldn't see them over the top of the building roofs - so everyone in Market Street quickly started moving out of the area - it was a little crazy but we quickly found a spot to stop and watch the show!

Carlie had her clinic visit on Thursday. Her blood counts were all good. Her chemistry numbers were up a bit (creatinine and BUN) so her doctor decided to stop the Celebrex for the next two weeks, let's pump up her fluids a bit and if they go back down maybe we'll try the Celebrex again with a bigger effort on increasing fluids and see where that gets us. As we have learned through this process things continually change and there are always some bumps in the road. I'll take the bumps as long as it keeps getting us down the right road!

Carlie is just so happy, energetic, and full of life - she is always nonstop playing and wanting to do things. She has such a strong, confident personality willing to try new things. She continues to amaze me and we are so proud of her. I've been lacking this summer on reviewing things she learned in school this past year - she signed up for the summer reading program at the library (where I read some to her and she reads some to me). She got out a whole lot of books this morning and started reading a Dora book to me and I was so surprised how many of the words she knew - I kept telling her how great she was doing - she finally had to tell me "stop saying that!". Ms. Cannon you would be proud of her reading too! Daddy is leaving for Asia on Monday so me and the kids will be holding down the fort! Luckily, both kids are signed up for camps these next two weeks so it will give me a little time to myself during the day. They are going to science camp this week - and Anthony will also be taking an art class this week too - and the following week is VBS at our church.

There are so many neat organizations that help kids with cancer and their families. We received an email from the Sunshine Kids organization offering us passes to the Barnum Circus so we should be going to that soon. While we were at clinic this past week we got an unbelieveable invitation for a family weekend camp out of San Antonio in September. There is a husband and wife that are involved with kids with cancer - they have a ranch where they hold weekend family camps for these kids. The kids usually have to be a little older than typical neuroblastoma kids, but our RN said she talked to them and told them all about the NB children, about their disease, and that they are usually younger children - they agreed to do a special weekend just for kids with neuroblastoma... truly awesome! Please pray that Carlie continue to feel as well as she does today so that she can enjoy that upcoming trip as well as our trips planned in August for Lake Travis and Destin, Florida - this will be her first real beach vacation.

Have a great weekend!

Love, The Edgington's

Tuesday, July 3, 2007 9:59 PM CDT

Hello everyone,

Carlie has had a really great week.... feeling good and playing hard! We left last Thursday evening for Indianapolis. Due to the weather in Houston our flight was two hours delayed leaving and with the one hour time difference in Indy it was 2:30am when we finally got to bed. Mark's longtime friend, "Uncle Greg", who also lives in Houston flew out with us to attend the high school reunion as well. Uncle Greg was getting a lot of lovin' from Carlie - it's been a while since she's been able to see him. We stayed at Aunt Debbie and Uncle Mike's house. We also got to visit with their kids (our neices and nephews, Matt and Elizabeth) and their families along with Aunt Vicki and cousin Zach. We got to see for the first time in person the newest additions to the family - cousins Garrett and Lauren and her big sis Mallory. Anthony and Carlie had fun just playing at Aunt Debbie's house - XBox racing games, swimming in the pool, riding the battery powered jeep, flying the kite, running around the yard playing with the neighbor's cat, chasing bunny rabbits, playing basketball, etc. Carlie really does love all the men in her life - if she wasn't sitting with Uncle Greg, it was with Uncle Mike, cousin Zach, Daddy, etc.

One of the most exciting things that happened was Carlie lost her first tooth!! She has been waiting so long for this to happen. Her tooth was not even loose before we left town. On Saturday she bumped her mouth into something while she was playing and she came over to us showing us it was loose and it was bleeding. Although she has been wanting to lose a tooth, she was very upset and nervous not knowing what to expect. We thought it would be another day or so before it came out. She finally calmed down and she went inside and got a Go-Tart, took a bite, and it came out. She was so excited she called both Grandma Martha and Grandma Shipley to tell them all about it. Although all our cute little tooth fairy pillows and tooth boxes were back at home, the tooth fairy did come and leave her some money! Uncle Greg and his brother who was also in town left her some additional money as well! She was so excited to get that money because she has been wanting to buy Barbie Horse Adventure game for her Nintendo DS (which I just won the bid off eBay this evening!)... anything to make this girl keep smiling!

We didn't get back home until about 9:30pm Monday night. Carlie stayed up late every night so she was pretty low key today - stayed in PJ's all day - playing computer games, watching TV, and loving on Rocco. He had his first stay at the kennel... they said he did really good - didn't bark or mess in his kennel. He had a "Jr. Suite" kennel which is an indoor private room with sliding glass door, bed, and a TV that plays Animal Planet, and four playtimes a day! What's not to love about that?

Carlie has a clinic visit on Thursday. I will try to post new pictures in the next day or two. If the weather is nice tomorrow morning we are taking the kids to the 4th of July parade here in The Woodlands and maybe to the fireworks in the evening.

Please continue to pray for Carlie - that this chemo start killing the cancer cells to get rid of this nasty tumor!

I hope you all have a happy and safe 4th of July!

Love, The Edgington's

Monday, June 25, 2007 1:59 PM CDT

Hello everyone,

Carlie is feeling fine and enjoying her summer so far...although at least once a week she asks when school is going to start because she is so excited to be in first grade! She got started on her Celebrex prescription late last week - they did decide to start her on a lower dose to see how her body handles it. The kids haven't been able to swim too much this past week due to all the rain we are having - we are ready for sunsine, but looks like we'll be waiting a little longer for that. One day last week we were out running errands and I went through the ATM drive through to get some cash so we could get lunch - well, I side swiped the short pole on the right side median and did over $1000 damage to my car - that was fun!

We had a relaxing weekend - mostly just doing things around the house. We had a sitter Saturday night for the kids and Mark and I went over to some friend's house for a nice dinner - we had to leave just as we were finishing dessert because the sitter called and said one of our smoke detectors kept beeping and then going off and on - which we knew that meant the battery was dead and it wasn't going to stop until we came home and replaced it. After church Sunday, we had signed Anthony and Carlie up for a Children's class at church in preparation for baptism. They were both dedicated as babies at our church and now they are going to be baptized. Although Mark and I have already been baptized, we are all going to do it together since our church does baptism by immersion - we thought the kids would be more comfortable all together.

We were able to book a house on Lake Travis in mid August. That should be a fun boating family trip. We are leaving later this week to go to Indianapolis to visit Mark's sisters and their families and for Mark's high school reunion. We are still looking at maybe doing some sort of beach trip. Please pray that Carlie can continue to feel well and enjoy the summer and our planned trips.

Love, The Edgington's

Tuesday, June 19, 2007 7:55 PM CDT

Hello everyone,

It's been over a week since I've updated so I hope I remember what we've been doing!! Carlie has had a good week and feeling good. One day last week we met our friends, Brenda and Trace, for lunch and then bowling. We went to clinic last Thursday for the Neuroblastoma parent support group meeting - it's really great that TCH has formed this group so we have been able to meet other families dealing with the same disease. The kids did artwork with volunteers while I attended the meeting. The topic of the meeting was fundraising. We've all talked about wanting to do something to raise funds and awareness for Neuroblastoma research... new and better treatments need to be found!! And it doesn't make the situation any better with government funding being cut for pediatric cancer research over the years. There were hospital representatives there to offer advice and other parents shared some of their experiences with fundraising. Okay... on to other things.

We had a good Father's Day weekend. Lexie came in town from school to spend the whole weekend with us! She's taking the MCAT prep class this summer and plans to take the MCAT test in September to get ready to start applying to medical schools. We are so proud of her - whether she goes to medical school or not - she really applies herself and is such a hard worker (although she skipped studying Friday night to go to the movies with me!). Saturday night we went to meet Papa and Gram Carruth at Don Jose for dinner (that's the mexican restaurant my Papa used to own).. it was good as usual! Sunday we all went to church and then met Papa and Grandma Shipley for our usual Father's Day steak dinner at Outback. I guess we did a lot of eating this weekend?! On Monday, Grandma Martha took a day off work and we went and hung out with her for a while and then we went to see the movie, Nancy Drew. It was a really cute movie for all ages.

Today Carlie had her clinic appointment. She had to have her port accessed for her labs since it had been a month - to keep the port working it must be accessed every 4-6 weeks. She wasn't too happy to have that done. Her regular labs all looked fine. Her chemistries were not back yet (lab was backed up) so her doctor went ahead and gave us her Celebrex prescription but told us to wait til they call me to give the okay to have it filled after they look at the other labs. We'll go back in about 2 weeks for another office visit and lab check and then she'll have testing again towards the end of July.

We are working to schedule some vacation time this summer. Hoping to get a Lake Travis trip scheduled and maybe some sort of beach trip (Padre, Florida or Mexico) - we'll see what might work out.

Please continue to pray for Carlie. Also, say a prayer for our Woodlands friend, Roman - he is currently in the bone marrow transplant unit about to start his stem cell transplant - he is not even two years old but he is very strong! Our other Woodlands buddies, Hans and Will, are doing very well. Have a great week!

Love, The Edgington's

Monday, June 11, 2007 3:01 PM CDT

Hello everyone,

I was happy to hear today that there was no change on her MIBG scan from the previous scan done about two months ago! So that means no new tumors... however we are still dealing with the current tumor on her scapula bone and tumor in her bone marrow so she has enough to fight with right now. We are grateful for any good news when we receive it! Let's keep praying this new chemo pill she is trying will prevent any further growth and shrinking the tumor would even be more of a blessing!

We had a wonderful weekend. The kids played with friends on Saturday and then we went to church and dinner on Saturday night. Sunday morning Mark put the convertible top down on the Mustang and we all went to the donut and coffee shop. After that we took our neighbor's, The Whitlock's, out on the boat. We had a really good time... we even let Carlie get in the lake for a little bit as long as she didn't put her head under. One reason is for the swimmer's ear and the other is because of bad bacteria that can be in the water and get through her nasal passages. She was excited that we let her do that! We took Rocco to his first dog park outing last week. He had so much fun running around playing with all the other dogs. I know we will be doing that again soon. Tomorrow, both Anthony and Carlie are going to go to a piano camp for a couple of hours. Carlie said she wants to learn to play the piano and there is a local family owned place that is having a piano "summer camp" so I thought that would give her a taste to see what she thinks about it.

She will go back to clinic next Tuesday for labwork, office visit and to hopefully get her started on the Celebrex. Have a great week.

Love, The Edgington's

Saturday, June 9, 2007 8:12 AM CDT

Hello everyone,

We've made it through our first full week of school being out! On Tuesday Carlie had her checkup with her kidney doctor and her oncologist. Everything was fine and she started her new chemo pill on Wednesday. Her doctor decided to wait two weeks after starting the chemo pill to add in the Celebrex - just to see what the chemo does to her counts on it's own first. When she woke up Wednesday morning she commented on her ear hurting when she touched or pushed on it. She didn't say much about it during the day. We went down to TCH to get her MIBG injection and then went to Hermann Park to ride the train... thought we might as well do something else while we were down there since we drove an hour to get a quick injection! She had a 9am appointment Thursday for the scan. She was pretty cranky when I had to wake her up at 7am. She always does so good with these scans - she has to lay still on her back for about an hour and she gets to watch TV. I could tell she was not herself and it might not go as well. She got fidgety, itchy, fussy, etc. and was not wanting to lay there. She did eventually start crying and we had to stop and take a break. Finally got her back on the table much to her disliking... she was still upset and I just kept trying to talk to her and try to get her mind off of it. She finally settled down about the time it was over. So, it took about 1 hour and 40 minutes this time. As soon as we walked out of the room she was smiling and talking! I decided to take her by the clinic since she still complained about her ear. They took a look at it and she has Swimmer's Ear. Although I know it's painful to her, I have to admit I was relieved that is all it was - it's easy to let your mind go to much more extremes. We have to put drops in her ear twice a day for a week and she cannot put her head under water for that time - hopefully it will be cleared up after that and this won't become a chronic issue.

I had asked her doctor to call me Thursday or Friday with the scan results but I did not hear from anyone and I did not put a call into them... so I guess I'll do that Monday. We are just hanging out this weekend. Dad took Anthony and Carlie to the movies last night and Mom enjoyed an evening out with some friends.

Have a great weekend! Love, The Edgington's

Monday, June 4, 2007 10:18 PM CDT

Hello everyone,

We had a good weekend. We enjoyed our visit with Carol, Giovanni, and Dominic - they left on Saturday morning for their 10 hour drive back to Wichita. I think I might have a young girl on my hands who is going to be a little boy crazy very young! When we went to drop Giovanni off at a friend's house to visit, all the kids started playing and Carlie really took to Gio's friend (who is 13). She kept chasing him around and would not leave him alone. Gio spent a couple of nights over his friend, Matt's, house. Carlie mentioned him several times over those two days. When Matt's mom, Christine, brought Gio back to our house all the kids were running around the street and Carlie immediately started chasing Matt around. Next thing I saw she had him pinned down on the ground. When all the kids started coming back towards the house she was walking right next to him and next thing I saw her reach up and grab his hand. She had this look on her face like "Yes, he's my guy!" He politely took his hand away and then she reached up and grabbed his shirt on the side and hung on to that. I have to say - it was so cute to watch that!! Matt was a good sport and didn't make a big deal about it.

Saturday we just hung around the house. Mark and Anthony went down to a neighbor's house to help them install laminate flooring. Anthony really enjoyed helping Mark and the guys with the flooring. That night a bunch of us grilled out on the driveway again and all the kids had a good time playing.. this is becoming our weekend routine! Sunday we took the kids to see Shrek the Third - really cute movie and then came home to go swimming. Today the kids and I spent quite a few hours outside in the pool again. Of course it's just the start of summer break and the kids are already arguing with each other... I guess I need to get some activities planned soon. Typically I would already have things planned but it's been a change over the last few years of feeling like it's hard to plan because we never know what Carlie's treatment schedule will be - so we just have to go with the flow!

On Tuesday Carlie has her 3 month checkup with her kidney doctor and then she'll have her counts checked and office visit at the clinic so we can get her chemo and Celebrex prescriptions. Wednesday she will have to go back to get her MIBG injection and Thursday we will go back for the MIBG scan.

Let's pray for nothing new to show up on the scan - we have enough to battle with right now. Have a great week.

Love, The Edgington's

Friday, June 1, 2007 7:44 AM CDT

Hello everyone,

Carlie and Anthony finished school on Wednesday - they both had end of year picnics at school. We went out to dinner at Rico's Wednesday night to celebrate end of school - beginning of summer!! We are having a good week visiting with our friends that are in town.

Mark and I went to clinic yesterday to have our consultation with Carlie's doctor. Her kidney function has improved some - her December number was 50 and now it is a 62. It is still not high enough for any open clinical trials that she may qualify for but at least it shows that her kidney is still continuing to heal itself and we still may see some more improvement. Her doctor said 70 is usually the minimum number for a clinical trial. The doctor discussed several of the treatment options that she had thought about for Carlie, gave us the reasons why she felt they were or were not good options for Carlie at this time. We have decided to start with the one that she recommends at this time which is another low dose chemo pill (cyclophosphomide - she has received a couple rounds of this via IV earlier this year) along with the drug Celebrex. Celebrex is commonly used for arthritis but studies have shown it can possibly help in fighting cancer cells. One of the main factors in driving the decision to continue low dose at this time is the fact that Carlie is feeling very good, has lots of energy and desire to play and do things, and is currently not having any pain with her disease - and it's summertime. We are hoping these drugs will keep Carlie's tumor from growing any further. If things change and she starts having pain from the tumor we can re-evaluate treatment at that time. I think they plan to have her do about 8 weeks of this treatment and re-scan again. She still has her MIBG scan scheduled for next Thursday - but if there is anything new on that scan it should not change her treatment plan right now. The CT's/MRI's from last week covered all the areas where there could have been more tumors near vital organs. She will have an office visit next week and get her counts checked and we will get the prescriptions so we can start the new medications next week.

This is still the time for big prayers for Carlie. Thank you to all the new prayer warriors that have starting checking in on Carlie's website recently! Almost every one of us are touched by cancer in some way and know what a tough battle this is so we are grateful for all the thoughts, prayers, and concern for Carlie and our family. That - and just the joy that Carlie is - is what gets us through this day by day.

Love, The Edgington's

Monday, May 28, 2007 10:25 AM CDT

Hello everyone,

Well if the picture above doesn't say it all, I don't know what does.... Carlie had such a great time at her dance recital last night. She did such an awesome job and just smiled so big. Carlie was diagnosed just about a month before what would have been her first dance recital two years ago. She ran into her teacher from that class, Ms. Carol - who still sends Carlie and our family little surprise packages and letters to this day. She was so excited to see her and Ms. Carol gave Carlie flowers and a nice little note after the dance. Ms. Carol wrote how Carlie's smile lights up the world. That is sooo true!! I look at that picture with that beautiful smile and the gleam in those eyes and just see all the promise and determination that she has.

We had a very nice weekend despite the rainy weather. We had a block party on Saturday evening and it had been raining almost all day and the rained stopped right before the time we had planned to start. So all the neighbors gathered outside and we cooked, ate, and all the kids had waterguns and just had fun playing together. Carlie and Anthony even helped Daddy all morning putting together the new grill he bought - they were very good helpers. Lexie came over Sunday and she went with Carlie and me to Carlie's dress rehearsal. We came back home and then Grandma Martha, Shirley, Clark, Susan, Tyler, Amanda, Sydney, Grandma & Grandpa Shipley, and Claire all came over to eat and then went to the recital.

The kids still have to go back to school Tuesday and Wednesday. Our friends from Wichita - Carol, Gio, and Dominic - are coming in town Tuesday evening to spend some time with us. Mark and I will go to clinic on Thursday to meet with the doctor to get the results of Carlie's kidney test and discuss treatment options. Please pray for all the people who are making decisions in treatment options and that we find the treatment that will halt Carlie's cancer from growing any further and will get rid of it!!

Happy Memorial Day! Thank you to those who have served or are currently serving in our military... best wishes to you and your families for the sacrifices you make.

Love, The Edgington's

Sunday, May 20, 2007 5:05 PM CDT

Hello everyone,

Unfortunately we did not get the news we wanted to hear on Friday. This is a tough one for us to take right now. Carlie's tumor is unchanged and there is one lymph node that is slightly larger. Her doctor thinks the radiation may just have held it to the same size and that lymph node could have been out of the radiation area. She said by looking at the bones that show on the MRI you can also tell there is more tumor in Carlie's bone marrow again - even more than last time. Her MIBG scan isn't scheduled until the first week of June - that is a full body scan that will pick of clusters of cancer cells. The CT and MRI's that she just did were for her shoulder, abdomen, pelvis, and chest. This Friday she will have her kidney test. We need to see if there is any improvement in her kidney function to determine if it opens her up for any other clinical trial chemotherapies. We have an appointment the Thursday after Memorial Day with her doctor to discuss what treatment options we have. It is time to really step up on prayers for Carlie!

We enjoyed our weekend. We hung out on our driveway Friday night with a lot of our neighbors and the kids had fun playing all together. We went out of town to visit our friends Dave and Jody Saturday/Sunday - we even took Rocco on his first road trip with us. He was a little nervous and drooled a lot riding in his kennel, but other than that he did great! He is getting so big - he is 51 pounds now.

Your continued thoughts and prayers for Carlie and our family are appreciated. We know we have a huge support group via this webpage.

Love, The Edgington's

Monday, May 14, 2007 10:16 AM CDT

Hello everyone,

Hope you've all had a good week and belated Happy Mother's Day to all the Mommas out there! Daddy took Anthony and Carlie to Build-a-Bear and they made me a cute bear all dressed up in pink (of course) and if you squeeze each hand there's a recorded message to me from each one of them - it was the best gift ever! They also gave me some handmade artwork they did in school which was wonderful too. We met Grandma Martha and Aunt Catey, Uncle Mike and Aubrey for lunch at the Downtown Aquarium. It was just a very nice day for us all. The kids had a blast at their birthday party Friday night - lots of friends came to help celebrate. We went out with a bunch of neighbors Saturday night to this little BBQ place called The Pit and sat outside and ate and danced! All the kids had so much fun dancing all around and getting us adults to dance with them. They had open-mic night and our 13 year old neighbor, Kathryn, played her guitar and sang songs she wrote herself - she was awesome and we all had such a great time.

Today is Anthony's birhtday - I can't believe my first baby is now 10 years old! He is such a great, loving, young man. Carlie and I are going to take lunch to him at school today.

Carlie's counts were fine last week. We are so happy her hemoglobin is holding up on it's own since we've stopped giving her that shot. She goes to TCH on Wednesday for counts, CT, and MRI's. She'll have her kidney test on the 25th and her MIBG scan the first week of June. Her test schedule is a little spread out this time. Please continue to pray for Carlie - no new tumor growth, improved kidney function, and for a reduction in the current tumor. I'll post the CT/MRI results after we get them later this week.

Have a great day! Love, The Edgington's

Tuesday, May 8, 2007 4:33 PM CDT

Hello everyone,

Carlie is having a great birthday today. Anthony and I woke her up by singing Happy Birthday to her. She was so excited about turning 6 today! I even caught her talking to herself in the mirror saying "I'm 6, I'm 6" while holding up 6 fingers! She helped me make homemade chocolate chip cookies yesterday so she could take them to school to share with her friends today. She was wearing the Happy Birthday Crown when she got off the bus today. She wanted to eat on the "You're Special" plate for breakfast and lunch today and she picked Red Robin to go to for dinner tonight. She can't wait til Daddy gets home so she can open some presents. We sat down and read all the nice notes on her website and some email birhday cards. She has told everyone that she has seen today that she is finally 6.... 6 seems to be a very important number for her! She and Anthony are getting excited about their party on Friday.

She also had a good weekend. Our neighbors, The Kerbow's, came over Saturday and swam in the pool and then hung around that evening and all the kids watched a movie in one room and the adults got to watch a movie as well. On Sunday The Kerbow's went with us on the boat at Lake Conroe. It was a lot of fun! Carlie started her chemo again this past Saturday and is doing fine with it. She will go to Conroe office to have labwork done this Thursday.

Gotta get back to the birthday girl....

Love, The Edgington's

Thursday, May 3, 2007 8:22 AM CDT

Thank you for all the nice notes, emails, and calls about last week's update... so I won't torture you anymore (for now!) and will update on how great Carlie has been doing this past week. She has been feeling good on her off week and her appetite has increased again. We had a really good weekend... Friday night we ordered pizza and hung out on the driveway with neighbors and the kids played. Grandma and Grandpa Shipley came over Saturday night to watch the kids so Mom and Dad could go to a party for Lexie's roommate, Jamie's, 21st birthday... they were nice enough to invite a few of us parents to the "pre-party"! On Sunday we went to church and then took our boat out on Lake Conroe with Grandma and Grandpa and had lunch at a restaurant on the water... the weather was nice and it felt so good to take the boat out for a spin. I wish so much that Carlie could swim in lake water again but there is just too much bacteria for someone with a compromised immune system.

The nice thing about the treatment she is on now is it allows her to go to school everyday and enjoy all the things she likes to do. She is such a "social butterfly"! As soon as we pull into the car line at school if she sees anyone she knows, she immediately rolls her window down and starts shouting hello to them. The other day when she got out of the car, one of the teachers who subs for her class sometimes was helping and she was so happy to see her and had a big smile on her face and went over and hugged her... that makes me smile! If Carlie had her way, she would invite every single person she knows to her birthday party. Speaking of that, Carlie will turn 6 next Tuesday, May 8th! Anthony will turn 10 on Monday, May 14th! They are going to have a dog themed birthday party together and they are getting so excited about that. She already told me she wants to go eat dinner at Red Robin on her "real" birthday because they sing Happy Birthday to you!

Carlie had her office visit at the clinic Tuesday. Her counts were fine so she will be starting the next round of chemo this Saturday. She had fun visiting with everyone at the clinic - she and Maggie (one of the nurses in the purple pod) were playing Webkinz while we were waiting for Dr. Russell. She will go to Conroe to have her counts checked later next week. Her next set of scans has been scheduled starting May 16th and then some over that next week or so. We are praying for no new tumor growth and shrinkage of the current tumor.

Have a wonderful weekend. Love, The Edgington's

Thursday, April 26, 2007 8:29 AM CDT

Hello everyone,

It was the last thing on my mind last night and the first thing when I woke up this morning.... Two years ago today our precious Carlie was diagnosed with cancer. No matter the outcome our lives will forever be changed. There are daily reminders of what she is going through as well as our whole family... with every grunt, groan, and ouch comes the worry that there is yet another tumor. There are her frustrations with all the yucky medicine she has to take, all the clinic visits to get her arm poked for counts, or the weeklong testings she must go through quite often. It's crazy enough thinking about the medicines that are used to treat cancer... your hair falls out, they make you throw up, feel bad, etc. etc. Just last night as I'm getting Carlie ready to take her final dose this round of the liquid chemo mixed with juice, the cup gets dropped and everything spills all over the floor. Put aside the expense of the medicine we just spilled, there's my concern that we don't have an extra dose, we get this medicine shipped from out of state, which means she's not going to get this last day and we want her to have everything she needs when she needs it to give it the best possible chance to work. In the big picture of things, I am sure this one dosage is not going to make a difference and she will start round two in about 10 days. We have to wear gloves to draw up and administer this medicine, I have to take the used containers and needles to the clinic to have them properly disposed of, I wore gloves to clean up the mess and threw those towels away... and this is the same medicine I have to give our daughter to drink or has to receive via IV to help her disease. While I was cleaning everything up, Anthony is sitting closely by Carlie's side. Although they arque like any other brother and sister (and I'm happy for that!)... he shows her such care and concern. After I tucked him into bed I told him what a great big brother he was - a few tears stream down his face as we give each other a big hug. Then I go down stairs and flat iron Carlie's wig "Shania" in case she wants to wear it today (it got a little frizzy after washing it!) I am not writing these thoughts today to make anyone sad or feel sorry for us because that is not the attitude we have and not the way we are trying to handle this journey.... just wanted to show a glimpse of what all cancer patients must struggle with on a daily basis.

I know over the years there have been huge leaps in cancer treatment and so many lives are being saved by it, but in my mind there is still a long way to go. Getting to experience a little bit with clinical trials and some of the thinking for future ideas, I am amazed by and thank those people who are dedicated in the medical industry to continue to treat, care for, research, be educated by the latest ideas, etc., so that are loved ones will benefit. I have not had a chance to get educated on this topic myself, but I've read information that every year budget cuts are being made to pediatric cancer research. I am planning to write my local representatives on my thoughts of this.

Through this journey we have also been amazed by how strong these young children are. Carlie is so unbelievable! She goes through so much and yet everyday she is still just being a typical girl - wanting to play, go to school, watch TV, play video games, read books, and even do her homework! We have also been amazed by the outpouring of love and support from family, friends, neighbors, and so many people that we have never even met (I have some neat stories I could share on that). This website has been the best thing we could have ever done. It has been so encouraging to read all your notes and Carlie loves when I read them to her. I think back on these two years and remember some of the horrible times we've had to go through, but I also think back and remember so many good, nice things that have happened because people just want to help and make her (and us) feel happy and good. Thank you all for that!

Love, The Edgington's

Friday, April 20, 2007 3:17 PM CDT

Hello everyone,

Carlie has continued to have a great week and has enjoyed all of her normal activities! So far, she has had no side effects from the current chemo she's on! She completed radiation on Monday and they said radiation can continue to work in your body for up to six weeks - so let's pray that it does it's job on that nasty tumor! Despite Carlie having this tumor, we feel so fortunate that she is feeling great and has no pain. At her office visit yesterday they said even if the radiation just keeps the tumor from growing that is good - but we want better - we want shrinkage! Her counts were still all fine. She is on a two day off period from the chemo and then on Saturday she starts five more days of the liquid chemo. Then she will have about nine days off before starting the next round. In early June they will do all of her testing again and decide next steps. Next week we'll just have to go to Conroe on Thursday to have counts checked.

We took Rocco to the vet today and he's gained 11 lbs. since last month's visit... he's up to 43 lbs. now! We bought him some new chew toys and dog bones so hopefully he'll stop going after Carlie's barbie dolls and Webkinz!

On Saturday we are going to Camp Woodstock in Bellville with the Kids Unlimited Organization. This organization plans activities for children with cancer and their families. This will be our first outing with this group and I'm sure it will be lots of fun for our family. They have activities planned all day Saturday and will have a campfire Saturday night and we'll sleepover in cabins and come home Sunday afternoon. Lexie is coming in town to take care of Rocco for us... we wish her luck!

A few of our Neuroblastoma friends (Hans and Patrick) are currently in the TCH bone marrow transplant unit going through their stem cell transplants - please say an extra prayer for these children along with all the children who have cancer. Have a wonderful weekend.

Love, The Edgington's

Sunday, April 15, 2007 5:31 PM CDT

Hello everyone,

Hope you have had a great weekend and enjoyed this awesome weather we are having today! Carlie has continued to have a good week. Tomorrow will be her last day of radiation... she will get to ring the gold bell after her last treatment! We got the liquid chemo prescription all taken care of and our insurance totally covered it. She started taking the new chemo Saturday night - she takes 3 chemo pills, waits one hour, and then takes the liquid chemo mixed with some cran/grape juice. She said it tasted horrible and shortly after midnight she did throw up. I gave her a dose of Zofran and she's been fine since. She will take this combination for 5 days, have 2 days off, then for another 5 days she will take just the liquid chemo. I think she then gets a week or so off.

The kids have been having so much fun playing with their new Webkinz - of course, that means they have been on the computer a lot at the Webkinz website. They used their own money yesterday to buy themselves each another one. I guess they didn't think they were busy enough taking care of their own real pet, Rocco, that they need more website pets! Rocco is doing great. He's quite the handful these days - getting much bigger and playful, wanting to chew everything. His new thing is he jumps up and puts his front paws on the kitchen island and quickly grabs something and runs with it... he especially likes the Webkinz - he must know they're his competition! We bought him another new dogbed yesterday and he already chewed a hole in it! But all that aside, he is still sweet and fun.

When I took the kids to Moody Gardens during Spring Break there was a man who came up to us and gave me his business card (he is a plastic surgeon) and said if Carlie ever had a desire to have a wig he is associated with an organization out of Michigan called Children with Hairloss. They provide wigs to children who've lost their hair for medical reasons. After talking to Carlie she was definitely interested in trying a wig out. We got in touch with the organization and they asked me to measure her head and let them know hair color - they immediately overnighted a wig kit to me and then got me in touch with someone locally who could fit and cut the wig. Did you know that wigs have names? Apparently, they give wigs names and Carlie's is "Shania"! Carlie was sooo thrilled with this wig. They said it would be best to cut bangs to help keep the hair out of her face - she wanted it a little bit longer than her hair was before. It is still a little thick but they said some hair may still fall out or we can bring it back soon to thin it out. She has been so excited and proud of her new hair! When we got home from having it cut she was running all over the street showing everybody and inviting them over for a fashion show. Her friend, Morgan, came over and helped her with a makeover, put a new dress on, got some dance music on, got some neighbors to come over, and they did a cute fashion show for us all! The next morning she wanted me to go to her classroom with her so we could show her class, tell them about it and show them how to put it on. She wore the wig when we were driving to school... Anthony looked over at her and said "it's like I don't even know who this person is"! She wanted the music cranked up, she was flipping her head all around to the music, using her hands to flip the hair around... it was all I could do not to cry from trying not to giggle!! She proudly walked into school with it on (I wish I had half of her confidence!) and took it off before getting into the classroom. She showed it to all of her friends and they thought it was really great and they also listened so nicely as we explained the whole thing to them. She said she took it off after recess because it just got too hot. We need to groom Shania a little bit and then I'll get a good picture with her wearing it and post it if she wants me to. What a neat organization to provide that to us - so quick and no questions asked - just did what it took to make it happen so fast! We have been so blessed by the kindness of so many friends and strangers.

Please continue to keep Carlie in your thoughts and prayers.

Love, The Edgington's

Wednesday, April 11, 2007 8:19 AM CDT

Hello everyone,

Carlie had radiation Monday morning and then we went over to clinic to have counts checked, office visit, and a blood transfusion... however we got a nice little surprise that her hemoglobin went up a point from last week so we passed the 10.0 mark so she did not need a transfusion after all!!

They also went over the new chemo plan and gave us all the new prescriptions. This chemo is oral and can be taken at home. The plan is to start this Saturday (she needed to start taking a daily antibiodic for 5 days prior to starting the chemo). Hopefully, we will get to start as planned... one of the drugs is in liquid form and is very expensive so we are just having a little confusion as who can dispense this drug using our health insurance. The typical everyday pharmacies do not carry this. The hospital actually has the drug, but believe it or not, the hospital pharmacy does not deal with insurance - when you get a prescription filled through hospital pharmacy you either have to be on Medicaid or pay cash - and supposedly this prescription is about $20,000! Although we do get Continental miles every time we use our charge card, we thought it would be better to try and get this somewhere using our insurance!! We have good insurance and they have been providing well thus far. Hopefully this will all get worked out today. She is also continuing her radiation each day this week... she goes to school in the morning and then we head to Methodist after that.

Please continue to pray that the radiation is doing it's job on her tumor and while she's been off chemo treatment no new tumors have developed. We are also still praying for kidney function to improve so it can open her up for possible new clinical trials. Have a great week!

Love, The Edgington's

Sunday, April 8, 2007 7:14 PM CDT

Hello everyone,

Carlie has had a very good week and had a nice Easter weekend despite the rainy, nasty weather we had Saturday! Sissy came in town and went to church and dinner with us on Friday night. On Saturday, we went to Uncle Clark and Aunt Susan's house to enjoy Easter with our family - it was fun seeing all the cousins. Then we stopped at our friend, Trace's, house and did another egg hunt there! Anthony and Carlie were so excited that the Easter Bunny left them each a Webkinz in their Easter basket - they have been begging for a Webkinz for about two weeks now and were probably the only one of their friends who didn't have one yet - so today they spent quite a bit of time playing on the Webkinz website - but did also enjoy some outdoor play with friends.

Carlie has six more days of radiation left and she will also need a blood transfusion tomorrow at clinic. Tomorrow will be a long day since radiation is scheduled to start at 8am and then we'll go over to clinic to get our place in line for transfusion. Daddy and some of his co-workers are playing in a golf tournament Monday benefiting His Grace Foundation. Their organization sponsors and provides a lot of "extras" to the families staying on the bone marrow transplant floor at Texas Children's Hospital. If we happen to get done early at clinic we'll stop by the tournament for the dinner.

Both Carlie and Anthony have birthdays in about a month so the birthday party talk has started around our household - trying to decide where they want to have their parties, the theme, etc.... Momma better get busy!

We hope you all had a wonderful Easter with your family and friends.

Love, The Edgington's

Tuesday, April 3, 2007 10:54 PM CDT

Hello everyone,

We are on the road to starting radiation! We had her consultation on Monday with Methodist Hospital, her simulation was done today, and she will start the radiation Wednesday. She will have 8 days of radiation directly to her tumor site (left scapula). They are closed this Friday for the holiday so she will go Wednesday and Thursday of this week, all five days next week, and then the following Monday. This coming Monday she will also have a blood transfusion at clinic since her hemoglobin has dropped some and it needs to stay above 10 for radiation. She did so awesome during her appointments the last two days - not nervous at all and laying still on her tummy for them. Even though it's been about 1-1/2 years ago since her last radiation (can you believe that?!) she does remember the process so she acted like it was no big deal. The people at Methodist were very nice with her and treated her like the special girl that she is. I believe the plan is still to start chemo as soon as we finish the radiation.

Please pray that Carlie's tumor responds to the radiation so we get some shrinkage of the tumor - or better yet, we'd like to see it all go away!

Love, The Edgington's

Friday, March 30, 2007 1:23 PM CDT

Hey everyone,

We finally got some good news.... Carlie's bone marrow biopsy/aspiration came back negative!! Woohoo! Although the two rounds of chemo that she just did didn't shrink the tumor on her shoulder they obviously helped clear up the tumor clusters in her bone marrow and prevented the tumor in her shoulder from growing. So, hopefully we will get to start radiation soon and can shrink that nasty tumor!

Keep those good thoughts and prayers coming our way. Have a great weekend!

Love, The Edgington's

Thursday, March 29, 2007 8:27 AM CDT

Hello everyone,

I don't really have much new to report yet. Carlie did her bone marrow biopsy on Monday and we haven't received a call with the results yet - hopefully today. However, I did receive a call from Methodist Hospital to schedule a radiation consultation appointment for next Monday... so hopefully that means we will start radiation very soon to see if we can shrink her tumor.

She has had a good week. We took the kids to the Montgomery County Fair and Rodeo on Saturday with our neighbors, The Evans'. The kids had fun riding carnival rides with Katie and Bella and watching all the fun events during the rodeo. I'll post some new pictures soon. We finally got to go to church on Sunday, she's been at school all week, she's been playing with Rocco and her friends, and she went to dance class on Tuesday... they are learning a tap dance routine that they will perform in a recital at the end of May. She's not so sure about dancing on a big stage, though!

I will update website if I receive any different news. Thank you for your continued love and support!!

Love, The Edgington's

Friday, March 23, 2007 2:32 PM CDT

Hello everyone,

I did hear from Carlie's doctor today. Although from the outside it looks like her tumor was smaller, it was not. The tumor size has remained unchanged. Just the swelling has been reduced. The positive news is that no new tumors have appeared and her doctor was surprised by this so we will take any positive news when we can get it. There may also be some bone marrow issues in her lower spine/hip area - that area shows up on the MRI but we won't know anything for sure until we get results from this coming Monday's bone marrow biopsy. Sometimes that can be a false reading due to the Neulasta they receive after chemo (the medicine that helps build her white blood cells up after chemo). Although this chemo has kept her tumor stable to this point, if it was going to shrink it at all it would have already done so by now. So the plan is to try something different. Since we are just dealing with the one tumor right now her doctor would like to look at possibly treating it with radiation and then start another chemo. She is going to have MD Anderson review her scans to let us know if local radiation would be helpful. If so she would like to get that started next week. The chemo treatment she is recommending is Irinotecan/Temodar. If Carlie can tolerate the taste, they can be taken orally... if not they can be administered IV. The side effect of one of the drugs is diarrhea. They will give her a daily antibiodic that should help slow it down and also try and control it with immodium. If it gets to be too much they can adjust the dosage of the chemo. She will not have to get the shot of Neulasta as the counts shouldn't drop too low. The chemo schedule is the first week (M-F) she takes both drugs, the second week (M-F) she will just get one of the drugs, and third week is off. She will have weekly clinic visits.

We were all hoping that the tumor would have shrunk, so of course we are let down by this news. But we are so thankful for no new tumors at this time. We are asking for prayers for good bone marrow test results. We also really need her kidney to heal more so it would open her up to qualify for some chemo clinical trials. We are also praying that her tumor can be treated and will respond to radiation along with the new planned chemo. This is such a horrible disease and sometimes the treatment is just as horrible, but Carlie is handling it like the strong girl that she is. There are currently three other children in The Woodlands also being treated for Neuroblastoma - please say an extra prayer for those children and their families as well. Enjoy your weekend!

Love, The Edgington's

Wednesday, March 21, 2007 9:40 AM CDT

Hello everyone,

Carlie is having a good week. She went to research clinic Monday to have blood drawn for the clinical trial and her counts were good. The doctor also took a look at her shoulder and he felt the tumor looked a little smaller than a week ago... you can definitely see a visible difference in her tumor since we've done the two rounds of chemo and the t-cell infusion. Let's pray the scans look good in that area as well as no new tumor development. She has been able to go to school and dance this week as well as had a playdate at the park with her friend Tori yesterday. After school today we will go to TCH to have her injection for tomorrow's MIBG scan and she will also have a CT scan. Tomorrow she will have MRI's and MIBG scan - she has to be there at 6:15am tomorrow morning so Daddy gets the honor of getting her up and taking her to TCH for the day. Her Friday bone marrow biopsy has been moved to Monday morning due to overbooking.

I am not sure if we will get a call Friday with test results or have to wait til Monday's appointment to hear, but will update when I know something.

Have a good week. Love, The Edgington's

Sunday, March 18, 2007 3:52 PM CDT

Hello everyone,

Carlie has had a very good week. Her counts were fine last Monday and we got the rest of the week off without having to go to clinic for anything... what a nice break, especially since it was spring break week! Mom, Carlie and Anthony left Thursday morning to go with our friends Brenda and Trace to Moody Gardens for a couple of nights (we left Dads home to hold the fort down). The kids had a lot of fun and did all the activities Moody Gardens has to offer plus went into Galveston to eat dinner by the bay, lunch and water ride at Rainforest Cafe, took a walk by the ocean, rode the ferry, shopped for souvenirs, etc. We kept very busy and had a great time but the kids were happy to get home and see Rocco, Dad, and Lexie. We celebrated sissy's 21st birthday on Saturday - went out for a nice dinner and took ice cream cake over to Papa and Grandma Shipley's house. Tomorrow is back to school for all three kids!

Carlie will go to research clinic Monday after school to have her labwork done. She will have her CT scan on Wednesday afternoon, MIBG and MRI's on Thursday, and bone marrow biopsy on Friday morning. Please pray for the best possible test results so we can continue on with treatment.

Have a great week. Love, The Edgington's

Monday, March 12, 2007 3:55 PM CDT

Hi everyone,

Carlie got home from the hospital about 12:30pm Sunday! She only had the fever the one time when we took her in and her blood cultures remained negative for infection. Her counts went up and she has a normal ANC. She had to go to the research clinic this morning so they could take blood samples for the clinical study she's on. We will probably get counts checked again locally on Wednesday morning. If all is fine I am hoping to take the kids to Moody Gardens later in the week for a couple of days!! She doesn't have much of an appetite right now, but hopefully that will return soon.

She had a nice visit with Ms. Lendy while she was in the hospital - thank you Lendy for taking the time to visit with Carlie Friday and Saturday! We will also be celebrating big sissy's 21st birthday this weekend - woohoo! Our new puppy, Rocco, is doing great. He is full of energy and very busy! He is doing good on his training but he still likes to get into anything he can get away with! Papa and Gram Carruth had given us rodeo tickets to see Hannah Montana and the Cheetah Girls but we decided it was best not to go due to Carlie's counts being low. However, she did get a surprise in the mail... a friend of ours pulled some strings and was able to get Carlie an autographed photo and t-shirt from Miley Cyrus (Hannah Montana) - she was excited about that - thank you Craig Miller!

Carlie will be testing again next week to see if the chemo and t-cells are helping her tumor and bone marrow. Please pray they are so we can continue treatment! Have a safe and happy spring break week!

Love, The Edgington's

Saturday, March 10, 2007 2:44 PM CST

Hi Everyone,

Well it was nice to hope for no fever, but we should have known better! She started in with a low fever Thursday afternoon and it kept going back and forth but was finally hanging around the 102.5 mark. I got her to the ER about 7pm Thursday night and I think we broke our record of how long we've ever had to stay in the ER before getting a room on the 9th floor - it was 9am Friday morning! The good thing is that after they gave her one dose of tylenol that night her fever has not returned and so far nothing has grown on the blood cultures. This morning both her platelets and hemoglobin dropped quite a bit so she is getting both transfusions today. But her white blood count and ANC came up a little so maybe, and I said maybe, she will get to come home Sunday if everything continues on the right track! She is finally a little more perky today wanting to play a few games and talk a few walks around the floor. Daddy is up at the hospital with her for tonight and they will either come home tomorrow or I will switch out with Dad tomorrow.

Please continue to pray that this chemo will work for Carlie's current tumor and keep any other tumors from developing.

Love, The Edgington's

Thursday, March 8, 2007 10:38 AM CST

Hello everyone,

On Monday, Carlie went to TCH research clinic to have her counts checked and to have her final t-cell infusion for the clinical trial. Her counts had not dropped much yet but we've been keeping her home from school this week to try and prevent her from catching any stomach bugs or colds. She has been feeling good and full of energy playing this week and enjoying the beautiful weather we've had.

I was able to take her locally this morning to have her counts checked again. Her white blood count has dropped low as expected. Her red blood count, hemoglobin, and platelets have dropped slightly. We are scheduled to go back to research clinic Monday for counts and they need to draw blood for the study. We are still hoping for no fever so we can avoid a hospital stay!! Last night her tummy did start feeling yucky so we gave her Zofran for the nausea and she did get sick when she first woke up this morning. She's feeling pretty low key today just wanting to watch TV so we will probably have a mellow weekend and keep her to limited visitors while her white count is low. Her TCH Childlife Specialist friend, Ms. Lendy, that moved away recently will be in town this weekend so she is definitely excited to try and visit with her!

Hope you all have a safe and wonderful weekend.

Love, The Edgington's

Sunday, March 4, 2007 8:08 AM CST

Hello everyone,

Carlie is doing great and enjoying this beautiful weekend. On Friday, we had a mom and daughter lunch at her favorite restaurant, Chili's! We were waiting around for our phone call from Texas Children's to say they had a room available so we could do her last day of chemo. We finally got that call at 5:20pm! So we ended up spending the night and coming home early Saturday morning. Grandma Martha spent the night and helped with Anthony and Rocco. She also watched the kids Saturday so mom could get out and get pampered (manicure, pedicure, etc). It was a much needed break. Daddy gets back from out of town today and the trip he had scheduled for this coming week has been cancelled (hooray!). He does get the fun duty of giving her the shot of Neulasta today (one time shot after chemo to help rebuild white blood cells) - she's not looking forward to that and Dad is not looking forward to giving it!

Tomorrow she will go back to the research clinic for another infusion of the t-cells from the clinical trial she has participated in. They check her counts first, give her the infusion, and then observe her for 3 hours and draw blood again. She will also have her checkup with her kidney doctor in the afternoon.

Please continue to pray for no fever this round and her counts to recover quickly so the kids can enjoy some activities during spring break the week of the 12th!

Love, The Edgington's

Friday, March 2, 2007 8:10 AM CST

Hello everyone,

Carlie's week of chemo is still going well. The last two days we've left the house about 7:15am and got back home between 3-4pm - so that was a little better! The entire clinic is closed today for a conference so she will do her last day of chemo on the oncology floor (9th) of the hospital. So, we just have to wait at home this morning until they call us and tell us they have a room available for her - we have no idea what time that will be. She will just check into the hospital for the day and back home after we're done. Grandma Martha is going to come to our house this afternoon and spend the night to help us out. Carlie is still feeling great and not complaining of an upset tummy yet. She is actually eating like crazy this week. She has been able to play outside with friends when we get home and enjoy this nice weather we're having. Her counts will probably start dropping soon though. We go back on Monday to the research clinic to have the other t-cell infusion done from the clinical study and have her counts checked.

Please continue to pray for no fever this round!!

Love, The Edgington's

Tuesday, February 27, 2007 9:25 PM CST

Hello everyone,

It has been a long couple of days at clinic, but everything is going fine and she is in good spirits and feeling fine. Her counts were good Monday so they started the 5-day chemo yesterday. We got home about 7pm Monday night and about 5:30pm tonight. The next three days we should be able to get started a little earlier and hopefully home a little earlier in the afternoon. Her doctor told us they are going to stop giving her the shot of Darbo (the medicine that has been helping her maintain her hemoblobin to prevent blood transfusions). There are studies being done that might possibly link the medicine to relapses in Neuroblastoma. There is another medicine we could give her which would mean about 3 shots a week, but for now we are just going to watch and see how she does on her own and how many transfusions she will need in between chemo cycles.

Thank you to our neighbors for helping out with Anthony after school and with his homework and also for helping out with our new puppy, Rocco - he's harder to deal with right now than a child!!

Please continue to pray that this treatment will shrink Carlie's tumor and prevent any more tumor from growing. Also pray for no fever so she can avoid a hospital stay... Momma needs a break, Daddy is out of town!!

Love, The Edgington's

Saturday, February 24, 2007 1:25 PM CST

Hello everyone,

I heard back from the clinic Friday afternoon and the plan is to start her next round of Topo/Cyclo chemo this Monday. She will go Monday morning for counts and office visit and then if everything is still a go, they will start the chemo after that. We will go back each day to clinic for the 5 days of chemo. I believe they are also still thinking about giving her a second round of the t-cells from the study we did in December - if so, I believe they will do that the following Monday. She will probably be out of school for the next couple of weeks if her counts drop quickly after this week of chemo.

Please continue to pray that this chemo will shrink Carlie's tumor and keep any other tumor from developing.

Love, The Edgington's

Thursday, February 22, 2007 9:36 PM CST

Hello everyone,

Carlie has been at school all week and is doing good. The chemo is starting to rob her of her hair once again! But she's taking it like a champ. When she gets out of the bath she says "now look at how much hair I have left!"

This week, for the first time we did her counts locally at a Texas Children's Pediatric office in Conroe!!! I can't tell you how excited I was to not have to spend a minimum of 4 hours to go down to the medical center to have counts checked. On Tuesday it took a little longer since we were first time patients, but today we were in and out of there in 20 minutes with a copy of her counts in my hand and they had already faxed them down to TCH!! Even if I only get to do that 1 or 2 weeks of the month it's still worth it - with the time, gas, parking fees, etc. that we can save - especially the time part!!

Carlie has been busy catching up on schoolwork, playing with her friends, went to dance this week, and is very busy helping with little Rocco. He is so sweet and doing so good and the kids just love him and are having a ball playing with him. They are starting to realize how much you have to keep an eye on them at this playful stage - every time you turn your back he's trying to get into something or running around with a shoe in his mouth! After they get through running around with him outside though, he's down for a good nap!

I'm waiting to hear back from Carlie's doctor to see if they are ready to start chemo next Monday. I'll post an update after I hear something Friday.

Love, The Edgington's

Sunday, February 18, 2007 1:21 PM CST

Hello everyone,

Carlie is doing well. She went to clinic Friday to have her counts checked and her hemoglobin and white blood count were up a little more - her platelets went down a bit and we'll go back this week to check counts again. Hopefully, she won't need any more transfusions this round. The plan is to do round 2 of chemo outpatient next Monday (26th) through Friday. She should be able to go back to school this whole week coming up. Her class gave her a bunch of arts, crafts, games, etc., for her to do while she's at home or at the hospital/clinic - she had a blast going through all the new stuff!

We finally got our puppy, Rocco, Friday evening. We have had a great weekend with him. He is so cute and sweet (see new pictures) and he is keeping us all very busy!

Have a great week. Love, The Edgington's

Wednesday, February 14, 2007 10:46 PM CST

Hi everyone,

Just a quick update to let you know Carlie got home late today (Wednesday - Valentine's Day!). She finally got an ANC of 300 - she will still have restricted visitation until it gets a little higher - she'll go to clinic Friday for counts again. There are a lot of viruses and flu going around so she needs to stay healthy! She received platelets again yesterday and her hemoglobin was a little lower today - so she got the shot of Darbo (spelling?) in hopes we can prevent another blood transfusion. At least she was feeling great almost the whole time she was there (except for congestion and cough) - she was her spunky, playful self and she did not complain once about being confined to her room for six days! She watched a lot of Mary Kate & Ashley movies, played video games, and we played a lot of Crazy 8 and Sorry. She even started riding around the room on her IV pole like it was a skateboard - I wished I had remembered my camera!

Thanks for all the calls, emails and notes on the website. It's nice to know you are all thinking and praying for us all - it keeps us going!

Love, The Edgington's

Saturday, February 10, 2007 3:08 PM CST

Hello everyone,

Well... how soon mom forgets to always take a packed overnight bag when going to clinic for counts! When we got to clinic Thursday for Carlie's office visit she had a low temp and they wanted to check it again before we left... and it was 102.6 so we were going nowhere! Her white blood counts had already dropped from the chemo. The good news was that they got everything going quickly - accessed her port for the first time (the first time was actually under sedation after surgery) - she didn't flinch a bit - she was so awesome and the nurses were so impressed; they got her fluids and antibiodic going quickly and took a blood culture. They also took her for a chest x-ray to make sure she didn't have pneumonia (she's had a lot of chest congestion, coughing this past week) and we were in a room by 5:30pm. Her x-ray was fine and so far the cultures remain negative. She still gets a low fever off and on but she is feeling good and is in a good, playful mood - just getting bored since she can't leave her room due to zero ANC count. She has to be fever free and negative cultures for 48 hours before they will let her go and her ANC needs to be up a little. They think she just has something viral causing the fever along with the low counts. Her hemoglobin and platelets also dropped so she received a blood transfusion yesterday and platelets today. Thanks to friends and family who helped us out - taking care of Anthony, getting our bags together and brought to the hospital, bringing food and PJ's to mom and Carlie, etc.!!

We have received all the recent scan results. Her bone scan showed nothing new - just the current tumor that we are already dealing with. Her bone marrow test did show a low amount of cancer cells in the area it was extracted from. Everything on the MIBG was basically the same (with the new tumor) except for one questionable area on the opposite shoulder area - it's shows a little darker area but it's unclear if it's tumor or not - or sometimes they just have areas that show up as false positives. Anyway, if it is some tumor starting in that area we are already treating her with chemo and hopefully it all responds to it. She hasn't complained of her arm hurting all week so we are hoping that means the chemo is doing it's job! The doctor did say she was expecting that Carlie might have had some additional small tumors on these scans... so we are extremely happy that was not the case! Keep all the prayers coming her way!

Puppy update: We put off getting Rocco until we are all back home! Dad and Anthony went to visit him this morning and he is doing well.

Love, The Edgington's

Tuesday, February 6, 2007 5:35 PM CST

Hello everyone,

Carlie's clinic visit went as well as could be expected yesterday. She wasn't looking forward to getting the shot but did a great job with it and was happy to have it over... she made me stop at James Coney Island on the way home for lunch (one of her favorites)! She actually went outside for a little bit yesterday afternoon for some low-key playtime.

She woke up with a smile on her face this morning and was ready to go back to school today - she said her tummy was a little upset and wanted some Zofran (anti naseau medicine) - but was still ready to go to school. She had a great day and the teacher wrote a note that she was happy and she did fine! She even went back to her dance class today and was happy to see all of her friends. She rode her bike for a bit and met Anthony at the bus stop this afternoon. Now she's taking it easy and watching some TV - she's had a busy day! She is looking forward to her babysitter, Kathryn, coming over tonight to watch her and Anthony while mom goes to Bunco and dad is out of town.

Tomorrow she goes back to get her MIBG injection and then Thursday will be an office visit/check up and her MIBG scan. I know we've said this before, but it's time to say it again... we are just soooo proud of her and love her to pieces! I can't even imagine what all she goes through, physically and mentally, that she can't/doesn't even express to us... and just keeps on going, wanting to play and be a kid as much as she can! I read a note on someone else's website recently that mirrored my (Mom) feelings that this disease can bring on... great pride, great love, and sometimes great rage. We just keep trying to focus on the great pride and great love and pray for her total healing!

Love, The Edgington's

Monday, February 5, 2007 8:54 AM CST

Hello everyone,

Just a quick update before we head off to clinic. Everything went smoothly with the remainder of the chemo and Carlie got home about 12:30pm Sunday. She spent the rest of the day just watching TV. She is eating well and hasn't felt any nausea so far. She goes back to clinic today to get a shot of Neulasta - this is a one time shot given the day after chemo ends to help her counts recover. During her original chemo she had to get a shot everyday for about 7-10 days so this is much better! If she feels up to it she can go back to school this week. She will have her MIBG injection this Wednesday afternoon and the scan will be on Thursday afternoon. We will also be doing clinic visits each week to check her counts.

Well, off to clinic to get our place in line in hopes to get back home before Anthony gets out of school!

Love, The Edgington's

Thursday, February 1, 2007 3:51 PM CST

Hello everyone,

Carlie and mom finally got a chance to get off the 9th floor and come upstairs to the library. Of course, she's playing computer games - I don't think she even notices she's in a room full of great books - Ms. Cannon you need to talk to her about that! :) I thought I'd give everyone a quick update. It was nice to open the website and see everyone's great notes and well wishes and thanks for the phone calls as well!

Surgery was on time Tuesday and she got into recovery about 2:30pm and we got into a room around 7:30pm or so. It was too late to start chemo that evening. She was really sore from the port placement and the bone marrow biopsies in both hip bones. But she did manage to start playing the Barbie Horse Adventure Playstation game that evening! Wednesday morning she let me take her for a wagon ride around the floor a couple of times but she still wasn't feeling very well. Finally later in the day she perked up quit a bit and she enjoyed a visit from Aunt Annette. She also won a prize for her art from Radio Lollilop (the hospital's radio station for patients). About 10:30pm she was ready to make a few rounds around the floor on the big wheel! She had her first chemo treatment yesterday afternoon and the second one today and has had no immediate reactions. She had her bone scan this morning and the MIBG scan is being rescheduled to next week. She was a little upset this morning going to the scan - I just think the port is tender and bothering her and it's been a while since she's had to be in this scenario and is not liking it so she's had some anxiety with everything. But for the most part she is being a great trooper with everything and is ready to start doing things "by herself". Grandma Martha is visiting with us today and our friend Brenda is coming tomorrow. Tomorrow evening Daddy will swap out with Mom for the weekend. The plan is that she should be able to come home Sunday afternoon.

Please keep the prayers coming... we need immediate response from chemo and we pray that there is little or no new additional tumors.

Love, The Edgington's

Monday, January 29, 2007 7:26 PM CST

Hello everyone,

Carlie had a pretty good weekend. We went and visited the litter of puppies on Saturday and decided we are going to get the little guy with the orange collar and his name will be Rocco! We almost went a little crazy and were thinking about getting a second one - there is a little girl who is the smallest of the litter and she has so much personality and gives those big boys a run for their money... but we came to our senses and thought one dog will be a handful! Carlie and Anthony's friends, Annette and Kathryn, invited them to go to the horse farm where Annette takes lessons on Saturday. They had such a great time feeding and playing with the horses! Some friends of ours watched Carlie and Anthony Saturday night and sent mom and dad out for a nice steak dinner. It was nice to get out for a bit - and the kids had fun playing at their house - thank you Mike and Lisa! Grandma and Grandpa Shipley came over Sunday for burgers on the grill.

Carlie's arm was bothering her a lot today and she just didn't seem to feel up to par - but she could also just be tired - she stayed up late both nights this weekend - too much partying! We have to be at the hospital at 11am tomorrow and she has a surgery time of 1pm to put in her port - then we should get moved to a room on the 9th floor and will hopefully start the Topo/Cyclo chemo that evening.

Please pray for everything to go smoothly with the port placement and for her to handle the chemo without any problems.

Love, The Edgington's

Friday, January 26, 2007 1:15 PM CST

Hello everyone,

Carlie had her MRI on Wednesday - it was a very long day. The MRI took 3 hours and she was very, very grumpy coming out of recovery due to the combination of drugs she had to receive for the sedation. She had also been having some tummy problems and the intestinal area did light up on the MRI - they think she has a little bit of an intestinal bug and should work itself out. She hasn't really complained much about her tummy since so hopefully that's taken care of.

However, her MRI did show that the tumor has grown. There is also indication that she may have the disease in her bone marrow as well. They will do a biopsy next week to confirm that. She will also still have her bone scan and MIBG next week to see if there are any more tumors and her doctor did mention that she could likely have some more tumor since the other one has grown. So now we need to get her back on chemo to get this under control. The plan is that she will be admitted on Tuesday, she will go into surgery to have a port put in and they will also do the bone marrow biopsy. Hopefully, they will also be able to start her chemo that day. She will have 5 days of chemo. This treatment can be done outpatient at the clinic for 5 days in a row, but they would like to do the first round inpatient so they can watch her closely to see how she does with it as far as fluids go, kidney, etc. The plan is to do this every 4 weeks on an outpatient basis. They will probably do scans again after 2 cycles to see if there is any progress. This chemo is not as "yucky" as what she has received in the past... so hopefully she won't feel too yucky herself!

If she responds to this and the tumor shrinks some they still may decide to give her a second dose of the t-cells. They do believe the necrosis from the tumor was due to the t-cell infusion which is good information for the study - and the fact that Carlie's tumor did respond some to it... It's just not a large enough dose to combat a tumor that size - that is part of the phase 1 study - just trying to find the safe dose to give to the patients.

Our prayer now is that Carlie's tumor responds to this new treatment and responds quickly! We also hope that she has minimal side effects and can maintain some normalcy in her everyday activities. Thank you for continuing to support our family with your thoughts, prayers, and just all the nice things you say and do for us - it is so appreciated!

Love, The Edgington's

Tuesday, January 23, 2007 6:01 PM CST

Hi everyone,

I finally received her testing schedule. Her MRI will be tomorrow (Wednesday) afternoon - they will MRI her pelvis, abdomen, and shoulder area. They will be able to compare this MRI to the previous one and see if the tumor has grown and/or if there is any more necrosis (dead tumor cells). Her bone scan and MIBG will be next Tuesday and Thursday. After they get all tests results they will be able to decide if they are ready to start chemo again or if they want to delay it just a bit and give her another dose of the t-cells from the study.

We are praying for no additional tumor growth and we also hope the current tumor has not grown and there is more necrosis with that tumor. We appreciate all your thoughts and prayers for Carlie!

Love, The Edgington's

Monday, January 22, 2007 2:40 PM CST

Hello everyone,

Hope you had a nice weekend... we finally had some sunshine yesterday and the kids were able to play outside for a while and Carlie had a friend from school over to play for a bit. We really have nothing new to report. I left a message with the clinic to see if her scans have been scheduled and haven't heard back yet. Her arm/shoulder still bothers her some but other than that she seems to be feeling fine.

Her kidney function test came back a few points better than last time but basically still functioning below normal. The normal range number is about 80 or so and her's came back a 50 this time - it was 45 last time and 32 earlier last year.

You can go to the photo page and check out some new pictures. Have a good week.

Love, The Edgington's

Thursday, January 18, 2007 7:21 PM CST

Hello everyone,

We canceled Carlie's research clinic appointment yesterday due to the icy road conditions. So, today we did both the clinic appointment and her kidney test. Her labwork was fine and her Hemoglobin has stayed steady so she didn't have to get the shot for her red blood cells. The clinical trial doctor gave her a checkup and looked at her back again - it sort of looks like the tumor area might be slightly puffier/larger but it is really hard to tell - and if it is we don't know if it's inflammation from t-cells or growth - her scans will determine that. They should be getting those scheduled in the next 1-2 weeks. What the doctor did say is that Neuroblastoma tumors don't usually show any signs of necrosis (dead tumor cells) and her MRI did show some necrosis - so they are still hoping that it is due to the t-cells they infused. Sometimes her underarm hurts and that's where her lymph nodes were swollen (which is where the t-cells typically go to - to do their job). So, we are hoping these next scans will show more necrosis of the current tumor and no more new growth anywhere. If that's the case, they may decide to hold off just a little more longer on chemo and infuse more t-cells if possible. We are also hoping her kidney test will show some improvement from the last test a couple of months ago... we will take anything we can get on the positive side!!

We ask that you please continue to keep Carlie in your prayers. Have a wonderful weekend.

Love, The Edgington's

Monday, January 15, 2007 4:53 PM CST

Hello everyone,

We are doing fine and there's not much new to report on Carlie right now. I did not hear any further information regarding her biopsy. She will go to the research clinic Wednesday for her check up and then Thursday she will go for her GFR kidney test. She occasionally says her arm bothers her some but for the most part is using it okay.

We went to Austin this weekend to visit our friends Dave and Jody - it was already cold and rainy there. On our way home we stopped and visited the doberman puppies. They sure are getting big and cute and we are having a hard time deciding which of the four males we want to be ours! We went shopping at Petsmart today to start getting some of the things we'll need. Anthony and Carlie picked out a dog collar, feeding bowls, and doggie toy - and Mom and Dad picked out the fun things like a kennel, potty training stuff, etc!!

Thanks for all the great emails and website notes of support. Carlie enjoys me reading them to her. Hope you all stay warm and dry and drive safe if you're out in this nasty weather!

Love, The Edgington's

Tuesday, January 9, 2007 4:24 PM CST

I just heard from one of Carlie's doctors. This is kind of confusing and hopefully I have understood it correctly! We don't really have a clear cut answer. The pathologist did say there are definitely still healthy tumor cells there (not what we want) and there is some necrosis (tumor cells that have died). He said there are some t-cells in the tumor area as well but it is hard to identify if they are the t-cells she was infused with for the study. If they are those cells he would have liked to seen a larger quantity of them - but doesn't know if that means more will come since we just infused her two weeks ago or if some of them have been killed off. They want to run some more tests on the biopsy over the next day or two to see if they can get any more information. In the mean time he wanted to know how she was feeling or if the area is more swollen. They need to get all the information and then decide if they want to bump up her scans to possibly start chemo sooner or if they feel it's okay to wait til end Jan/early February for scans/treatment. They just want to figure out what's best to do for Carlie. They are going to try and get her kidney test scheduled for next week so they know how it's functioning so they can start planning treatment.

Please continue to keep Carlie in your prayers! She's actually outside running around playing with friends right now!

Love, The Edgington's

Tuesday, January 9, 2007 1:36 PM CST

Hi everyone,

Just wanted to let you know we are still waiting to hear biopsy results. The doctor left a message this morning saying he hasn't received the results from the pathologist yet - they took samples from 3-4 areas of the tumor so they are still waiting on the results themselves. He said he will call me when they know something.

We had a good weekend. Sissy came and spent the night with us Friday and we all went out to eat dinner. We just hung out and played on Saturday. Daddy left for out of town on Sunday morning and Mom, Carlie and Anthony went to visit friends Brenda and Trace in Katy and then went to cousin Aubrey's birthday party!

Thank you for your thoughts and prayers. I'll post something as soon as I hear.

Love, The Edgington's

Thursday, January 4, 2007 8:27 PM CST

Hello everyone,

Carlie started having some pain in her shoulder area where the tumor is located late last week and over the weekend. She was pretty uncomfortable for 3 days or so but it slowly started getting better earlier this week. There is also some inflammation in that area. The doctors took a look at it yesterday when she went in for her weekly lab work. They decided they wanted to do a MRI and biopsy. She had the MRI today and the biopsy will be on Friday. They need to determine if the tumor has grown or if the
t-cells from the study are causing the inflammation before they determine next steps. Other than that, everything else seems fine and she seems to be feeling much better and back to her playful mood.

We will post the results after we hear back (it might not be until Monday). Please continue to pray for Carlie.

Love, The Edgington's

Thursday, December 28, 2006 9:35 PM CST

Hope everyone had a good Christmas. The kids enjoyed their Christmas, seeing their family and friends, and all the wonderful gifts they received. Santa surprised Carlie with a 3 story dollhouse and some My Scene Barbies to go with it! Anthony got a new scooter and bike ramp and that has been a huge hit with all the neighbor kids! We also surprised the kids and took them over to a dog breeder's house to see a litter of baby Dobermans and told them we are going to get one as soon as they are ready to part from their mommy (early Feb.). So we will be going back to visit the puppies and will be thinking of a name and getting all the things we need ready to bring puppy home.

Since Mom woke up Christmas Eve with a stomach virus that did verify that Carlie did have a stomach bug earlier that week! She was still feeling a little mellow over the weekend but finally started perking up Christmas night and was back to full energy and a better appetite the day after Christmas. Unfortunately a lot of our family members have since got the bug too... We hope everyone feels better soon!

Carlie had her one week check with the TCH Research Clinic yesterday. Her counts were good. They draw blood to track the cells they infused her with last week and check her to see how she's feeling. She will go back again next week for the same.

Aunt Debbie and Uncle Mike from Indiana are on their way here to visit us for the New Year's weekend. We hope you all have a safe and Happy New Year! I will try to post new pictures very soon (did not get a whole lot of pictures over the holidays since the photographer was a little under the weather!).

Love, The Edgington's

Friday, December 22, 2006 7:08 AM CST

Hello everyone,

We are finally settled in back home. Everything went fine with Carlie in the hospital - she received antibiodies for 4 days to get her body ready for the clinical trial infusion. On the last day she did get hives on her face, arms, tummy - but they quickly gave her some benedryl which took care of the problem. Wednesday night at home she woke up in the middle of the night vomiting but never did again yesterday. The doctor wasn't sure if she was just reacting to something or just had some sort of stomach bug or upset tummy due to sinus drainage. She went back in yesterday to receive the actual infusion for the study - everything went fine with that and she had no immediate reactions. She also had her CT, MRI's, and MIBG scans this week. Those tests did confirm the tumor on the scapula bone (shoulder blade) and the small lower spot on her spine was still on the bone scan but I'm not sure yet if it showed any tumor cells on the MIBG scan (the radiologist had not sent in the final reading yet). Other than that nothing else new showed.

She will go in for labwork once a week for a few weeks and then they will do all of her testing again in 6 weeks (scans, bone marrow testing, kidney testing, etc). She will need to be on some sort of treatment due to the new tumor... after testing the doctor will let us know her recommendations. She is hoping to put her on something that is low dose so she can continue to do her normal activities.

Carlie received lots of special attention while in the hospital this week. Jamie from 8th floor Childlife went to Gamestop to buy Playstation Barbie Horse Adventure game because they no longer had their copy on the floor - that was Carlie's favorite game when she was in for her stemcell transplants last year. As usual she stayed up til Midnight every night playing video games! She received visits from Dave & Jody, Uncle Andy, Aunt Annette, Grandma Martha, and Karen - I think she had to show them all how she could play the Playstation games. A lot of volunteers came by with bags of gifts which she was totally excited about - even Santa left a bag in her room yesterday when she went downstairs for her scan.

Anthony was also well taken care of this past week. He spent the night at Grandma Martha's and they went to the movies, Lexie watched him another day and she and her friend Claire took him ice skating, he stayed with his triplet buddies down the street another day and they went to the movies, and Thursday Grandma and Grandpa Shipley came over to watch him and they hung out and played games. Hopefully we can now all get back to normal, get caught up on sleep, and get ready for Christmas!!!!

Please continue to pray for Carlie's healing and that the study will keep this tumor from growing in this next 6 weeks. We would like to thank you all for all of your love, support, prayers, well wishes, and just for helping out in many small ways that really mean a lot to all of us. We couldn't get through this without all of those prayers and support.

We hope you all have a Merry Christmas and enjoy your time with friends and family!

Love, The Edgington's

Wednesday, December 13, 2006 12:16 AM CST

Hello everyone,

Carlie had her bone scan Monday afternoon. Due to overbooking her MIBG scan got postponed to next week. We received a call from her doctor yesterday, and unfortunately Carlie has a new tumor. It is located on her back left shoulder blade area. The small spot on her lower spine that they saw on the previous scan is also still there but remains the same size. We won't know if there are any more tumors that don't show on bone scan until after MIBG and CT/MRI's are done next week.

Earlier in the summer the doctors told us about a clinical trial that Carlie qualifies for. It is something that can be done with or without current disease and it does not involve chemo or radiation. It involves antibiodies, t-cells, gene therapy - too confusing to understand or explain! It something that we've been trying to decide to move forward with or not - but in the mean time they have been preparing her blood samples for it. It takes months to get it ready and then can be frozen ready for use. We had recently decided to go forward with it. Since Carlie's tumor is not hurting her at this time, they want to hold off radiation or chemo and do the clinical trial first. It will also just give her kidney a little more time without chemo to see if we can get some more improvement. The plan is to do the trial, rescan in 6 weeks, and the hope would be that the tumor will at least remain the same size and not get any larger - and then go from there.

Carlie will be admitted to the hospital this Saturday for 4 days of an 8 hr/day drip of antibiodies to suppress her immune system. Then she will have a day off - Wed (but will still have to go back that day for CT/MRI) - then Thursday will go in outpatient for her MIBG and then she will receive the actual infusion for the trial - it's a quick infusion but have to hang around about 4 hours or so for observation. We pray that she will not have any side effects or complications with this so she can enjoy all the Christmas fun!

Of course this is not the news we wanted to hear but we need to keep moving forward and fight the fight! Please continue to pray for Carlie... we pray that nothing else new will show up on the CT/MRI/MIBG and that she will not have any discomfort with this tumor and the trial will help this new growth get under control.

On a happier note, the kids received letters from Santa in the mail yesterday and were very excited - he even sent them an ornament for their tree! We are taking them to go see Santa tonight so they can get all their wishes in!

Love, The Edgington's

Monday, December 11, 2006 8:22 AM CST

Hi everyone,

I am sure everyone is as busy as we are getting ready for Christmas! The kids are excited and counting down the days. They had fun decorating the tree this weekend. Carlie is doing great. She did so awesome in our church's Children's Christmas program... she sang, did all of her hand motions, and was part of a group of angels during one part of the program. She was very proud of herself and so were we! Last week we also went to watch Anthony is his third grade program at school - he was dressed as a reindeer and was so cute and did a great job.

Carlie went to her first birthday party sleepover Friday night - she was sooo excited and had a great time. Yesterday I took her to see her teacher perform in the play, A Christmas Carol. A lot of her classmates were there and they really enjoyed watching the show.

This afternoon Carlie will have her bone scan and on Thursday afternoon she will have her MIBG scan. We should hear results later Thursday or Friday. Please pray for Carlie to have great test results. Thank you all so much for your love and support this past year and a half - it really means so much to our family and makes this all a little easier to get through.

Love, The Edgington's

Thursday, November 30, 2006 1:17 PM CST

Hi everyone,

Hope everyone had a safe and happy Thanksgiving. Carlie is doing good. We've had a fun, busy couple of weeks. The Sunday before Thanksgiving we went to our neighbor's property for the day...the weather was beautiful. We all had such a good time - took a ride around the property in a jeep, on 4-wheelers, fished, played, cooked out, sat by the fire and made smores!!

For Thanksgiving, we went to our aunt and uncle's ranch for a couple of days along with family. We all had such a great time there too! Dad and Anthony went hunting and got a deer. We drove around the property on the high rack truck. We cooked out, sat by the fire (Grandma Martha was good at getting the fire going for us each morning!), and went target shooting - even Carlie shot the target with big brother's rifle (she is a Texas girl!). The kids had a great time playing together and with their cousins! Carlie was definitely Uncle Andy's buddy - hanging out with him, helping him drive the truck, and pretty much not letting him out of her sight for long!

We came home Friday night so we could spend some time with Grandma & Grandpa Shipley, Lexie, and Aunt Vicki and cousins Josh and Zach who came in town from Indy. We went bowling and to eat mexican food on Saturday. We had to spend Sunday just recouping!!

Carlie went to clinic this past Monday for counts. Her counts were fine and we'll go back in two weeks for counts, bone scan, and MIBG scan. Please continue to pray for those test results to show no new growth.

Love, The Edgington's

Friday, November 17, 2006 9:33 AM CST

Hello everyone,

Carlie has been having a good two weeks and enjoying a lot of outside playtime with this nice weather. Lexie was in town working at the mall last weekend so we went up there to visit and they put Carlie in one of the makeover chairs and put lip gloss on her - she thought she was big time after that!

She had a cough and cold but has finally gotten rid of most of that. She went to the clinic yesterday to have her counts checked and all were good so she got to leave without having to get any shots! She made a lot of artwork while she was there - thank goodness for the volunteers who help with that - it really gets her out of a cranky mood from being there. (We still really miss you Ms. Lendy and Carlie is sending something to you in the mail!) She is still really enjoying school and ballet/tap class - they are doing a ballet dance called the Turkey Tango and it's really cute! She is also in our church's children's choir and will be in the Children's Christmas program on Dec. 1st. She is also very busy circling all the new toys she wants in every toy catalog that comes in the mail!

We are going to Anthony's last soccer game tomorrow and Sunday we are going to our neighbor's property in the country for the day - so she should have a pretty fun weekend.

Please continue to pray for Carlie. She will have her testing again in mid December - we are praying for no new tumor growth and continued complete healing.

Love, The Edgington's

Thursday, November 2, 2006 6:44 PM CST

Hello everyone,

Carlie has been doing great these past two weeks! She's been a busy girl going to school and playing with friends. Our friends, Dave & Jody, came to visit this past weekend and we all went to visit Papa and Grandma Shipley and after all this rain we've had we were finally able to get our boat launched in the lake - so we took a nice boat ride on Lake Conroe!

Carlie and Anthony had a great Halloween. They had parties at school, then we had a culdesac party before going off trick or treating. All the big kids made up Halloween games for all the little kids - they had a great evening and received lots of goodies! Carlie dressed up as Barbie Mermaidia Fairytopia and Anthony was a bleeding skeleton (see new pictures).

Today Carlie had her counts checked at the clinic and everything was fine - we go back in two weeks to have them checked again. Clinic is just not as exciting now that Ms. Lendy has moved, but Carlie did find a volunteer that helped her with some art projects. We are hoping for some great weather this weekend as Anthony has two soccer games scheduled.

Please continue to keep Carlie in your prayers. We are praying for no new tumor growth and that the spot on the bone scan ends up being nothing of concern. Have a great weekend.

Love, The Edgington's

Friday, October 20, 2006 1:34 PM CDT

Hello everyone,

Carlie has had testing Monday through Thursday this week. She was a trooper and did a great job with everything. The bone scan report showed a new small spot on her lower back area that was not there before. It also showed that the small spot that had been on her femur previously might be slightly larger... this small spot was treated with radiation last year and has been fine since - it still shows up in the bone scan (which means there was activity there before).

The MIBG Scan came back negative, which is great news! So, we really do not know for sure what this means at this time regarding the bone scan. Her doctor would like to do her bone and MIBG scans again in early December and go from there.

She gets a break from any treatment right now! She will go back for labs in 2 weeks. We are very thankful for the negative results for the MIBG scan are we are praying that the bone scan results do not turn out to be anything of concern. We would appreciate your continued prayers for Carlie... she amazes us every day with her strength!

Right now she is busy chasing a bird in our house! It's such a beautiful day we've been in and out of the house and two birds got in! One finally flew out the back door and she's chasing the other around with the camera trying to get a picture (so far she only got a picture of the bird poop - which means Mom has a job to go do now!)

Have a great weekend. Love, The Edgington's

Thursday, October 19, 2006 6:38 PM CDT

Hello everyone,

Carlie has had testing Monday through Thursday this week. She was a trooper and did a great job with everything. The bone scan report showed a new small spot on her lower back area that was not there before but they didn't have the results of the MIBG scan to confirm if it shows anything active in that area. The radiologist had left for the day so they will call us tomorrow with those results and their recommendations on next steps. Of course, we were hoping for nothing new to show but are trying to remain optimistic on the final results.

We would appreciate your continued prayers for Carlie and will update the website as we know more.

Love, The Edgington's

Thursday, October 12, 2006 6:07 PM CDT

Hello everyone,

Carlie is having a great week and we had a good weekend with our friends that were visiting. Carlie finished her very last chemo pill last night! This is the last of her planned treatment for right now. Her testing is scheduled for next Monday through Thursday.

The kids are excited because they have early release from school tomorrow. They are going to spend the day Saturday with Grandma and Grandpa Shipley while mom and dad go to see Lexie at A&M and go to their first Aggie game!

Please continue to pray for Carlie to have excellent test results next week! She told me the other day that she is ready for her hair to grow back brown and long down to her back and that is what we all want for her too!

Love, The Edgington's

Friday, October 6, 2006 2:06 PM CDT

Hi everyone,

It was a nice two week break with not having to go to clinic last week.. and we get to wait and go in two weeks again! Carlie's counts were fine yesterday - hemoglobin dropped a little more so they went ahead and gave her the shot again - she got to go about 6 or 7 weeks without getting one! She was a little upset getting the shot, but she was a brave girl and did good! She was missing her Ms. Lendy though!

She's been busy with school, dance, children's choir at church, and playing with friends. Our friends that moved to Austin, Dave & Jody, are coming to stay with us for a visit this weekend and we'll go watch Anthony play his soccer game tomorrow.

Carlie is on her last week of the chemo pill - this is the last scheduled month for this treatment - yahoo! Please continue to keep Carlie in your prayers - we are praying for no new tumor growth. Carlie's testing will be coming up soon - not sure of the dates yet.

Have a happy and safe weekend. Love, The Edgington's

Wednesday, September 27, 2006 8:46 PM CDT

Hello everyone,

Hope everyone is having a good week. Carlie has been doing well and staying busy with school, dance, and playing with friends. Mom and Carlie had a nice girls weekend while Dad and Anthony went to the ranch... they had a great time together hunting, fishing and even got to ride in a helicopter! Mom and Carlie spent Friday afternoon at the mall. Carlie had a Libby Lu makeover - got to dress up in a rock star outfit, had her nails polished, makeup done, and they put spray glitter on her hair - she really had a great time. She played at the mall play area, rode the carousel twice, ate Wendy's, browsed through the new Disney Store, and made several wishes in the outside fountain.

We had another girls day on Saturday - Grandma Martha, Aunt Catey and Aubrey, and Aunt Susan and Amanda came over and went out to lunch and shopped at Market Street and then Carlie and Aubrey played in the water fountain! Grandma spent the night with us and we went out for breakfast and a little more shopping the next day! So, as you can see, Carlie had a busy weekend!

You can check out new photos on the Photo page!

Have a great week. Love, The Edgington's

Friday, September 22, 2006 10:19 AM CDT

Hello everyone,

Carlie has been feeling a whole lot better - just a little tired from getting up so early to go to school! Her clinic appointment went well yesterday - her counts were all back up and her hemoglobin has held steady as well. Her creatine level was also good. She will start her last round of chemo pill today and the doctor said we could skip a week and go back in two weeks to check her counts again... yeah!! She had fun doing artwork at clinic yesterday as well as playing with Ms. Lendy/ChildLife. Ms. Lendy has accepted another job and will be moving out of state to be closer to family - we are going to miss her so much and she has made such a huge impact in supporting Carlie through her treatment - we wish her all the best!

Carlie has been busy wanting to roller skate (with Mom's help of course) and she is really getting in to doing schoolwork - she loves to print out practice/activity sheets and work on her writing, numbers, spelling, etc.

Daddy and Anthony are spending a much needed guys weekend together at our uncle's ranch... I know they will have a great time. So, Mom and Carlie are going to have some girl time!

Please continue to pray for Carlie to stay strong and well during this last month of her chemo pill. Have a wonderful weekend.

Love, The Edgington's

Monday, September 18, 2006 12:29 AM CDT

Hello everyone,

Sorry it's been about a week and a half since I've updated Carlie's website. It's been a long week with Carlie not feeling up to par and Dad out of town! Carlie's cold kept lingering around with sneezing, coughing, and a off and on low grade fever. Last Wed/Thur we finally had 24 hours with no fever at all and we went to clinic Thursday to find out her counts (white blood and ANC) were pretty low. They said to keep her home from school Friday and bring her in today (Monday) to see if her counts were up enough to go back to school. But if she got another spike in fever she needed to be brought back in for another blood culture. About 11:00pm Thursday she started back with fever and by 1:00am it was 103.5 so she had to go into the ER and was admitted to the hospital to check for an infection and to start antibiodics. We got into a room about 2pm on Friday and her fever had already gone away and has remained that way. Her counts also went up since they were taken at clinic on Thursday. They watched her blood culture for 48 hours and it remained negative. Since her fever was gone and the cultures were negative they let her go home Sunday morning! Her counts were up enough for her to go back to school today. Except for having minor cough and a little sneezing she has been feeling good and full of energy again. She kept me busy in the hospital riding the big wheel up and down the hall, going to the library, playing games, etc. With her counts being down some due to the chemo pill and her having the cold/fever/virus, they said it will just take her a little longer to get over these things.

She will go back to clinic this Thursday to check her counts again and see if they are ready to start round 6 of the chemo pill. Please pray that Carlie continue to stay strong and get her counts up where they need to be so she can continue with her treatment.

Love, The Edgington's

Friday, September 8, 2006 12:48 AM CDT

Hello everyone,

We had a nice, relaxing three day weekend. Carlie is doing fine with her fractured arm - she still needs to wear the splint another week or two. Another friend on the street fractured her same arm this past week. I took a picture of the two girls with their injured arms - I'll post on the website.

Carlie seems to have a cold this week and woke up about 4:30am Thursday morning with a fever of about 103. After Anthony got off to school, I took Carlie to clinic since we were due to go that afternoon anyway. Her counts were where they should be (including hemoglobin - which meant no shot once again!!). They examined and watched her for a while and decided to go ahead and send her home and for us to just treat the fever with Tylenol. If a positive result comes back from her blood culture then they will call us to come back in - or if she keeps getting the high temp, I'll have to take her back. She had to have the Tylenol every 4 hours to keep her temp under 103 until finally this morning it has stayed around 99.5 to 100.5. Hopefully she will feel better soon and the fever will go away. She just completed the fifth round of her chemo pill and she will go back to clinic next Thursday for counts and see about starting the sixth round.

Please pray for Carlie to re-coup quickly and stay well so she can get back to school with her friends. Dad is going on back to back trips for the next two weeks - so Mom will have her hands full!

Have a nice weekend! Love, The Edgington's

Thursday, August 31, 2006 10:18 PM CDT

Hello everyone,

Well, Carlie is still continuing to keep us on our toes! Wednesday afternoon she was outside playing in the neighbor's yard and she fell down and started crying and said she hurt her wrist - I think she must have tried to catch her fall. It was really bothering her that night. It was still bothering her Thursday so when we were at clinic I mentioned it to the nurse. They decided to go ahead and x-ray it since we were there - she did fracture the larger bone in her arm down near the wrist area. They said it is a buckle fracture and very minimal - it is one of the most common areas kids tend to fracture/break. She is wearing a soft splint on her arm for probably 2-3 weeks while it heals itself. Her counts were good, even her hemoglobin, so she got to skip the shot again this week...yeah! This evening she did say she felt warm and she had a temp of 99.5 and then checked it again before bed and it was 100... not sure what that is all about - maybe if the fever she had Sunday night was viral, it's still lingering a bit.

Anthony started soccer this week and now has two practices a week. Between all the homework, activities, ER and clinic visits - we are looking forward to relaxing this three day weekend! Please have an enjoyable and safe weekend. Your continued prayers for Carlie would be appreciated.

Love, The Edgington's

Monday, August 28, 2006 4:20 PM CDT

Hello everyone,

OK... so I guess Carlie likes to keep us on our toes! About 5pm Sunday I had to take her to TCH emergency room because she got a fever over 101. The good part is they decided not to admit her and we were home by midnight. I went ahead and let her sleep in and stay home from school today to make sure her fever didn't return. They checked her counts and since they were still high and she was looking fine and her fever did not go any higher, they gave her tylenol and sent us home. Said if it got to 102 or higher to bring her back in. They also took a blood culture to watch over the next few days to see if it turns positive for an infection. Hopefully, she just had some little viral bug. After taking the tylenol her temp went back to normal and has remained there since. She woke up full of energy and hungry and has had a good day.

Other than that, she had a good weekend. She will go back to clinic Thursday to check her counts.

Have a great week.

Love, The Edgington's

Friday, August 25, 2006 11:44 AM CDT

Hello everyone,

Carlie has had a great week. She's had a good time going to school - she's still excited each morning to get ready and get on the bus! She loved her ballet/tap class. She's been invited to go play at our friend's house this afternoon. She went to clinic yesterday to have her counts checked and her hemoglobin was even higher than last week so she got to skip getting the shot... she was thrilled about that!!

Our good friends, Dave & Jody (who have been a tremendous help and support to us this past year), are moving from The Woodlands to Austin so we are having a little going away party for them this weekend. We are happy they are still within driving distance so we can visit often!

Your continued prayers for Carlie are appreciated. Hope everyone has a great weekend.

Love, The Edgington's

Thursday, August 17, 2006 5:34 PM CDT

Hello everyone,

We received such AWESOME news today!! All of Carlie's tests came back with good results!! Even her hemoglobin and creatinine level (ties to kidney function) were improved this week! We could not have asked for any better news than what we received today. Thank you all for your thoughts and prayers.

She will start her Round 5 of chemo pill tomorrow. She will continue to go to clinic on Thursdays to check her counts and to receive the shot of medicine to help rebuild red blood cells.

Carlie started Kindergarten yesterday and she will also start taking a ballet/tap class. She was so excited to ride the bus to school. We had Ms. Lendy from TCH Child Life go to school and speak to Carlie's class about what she is going through, why she doesn't have hair right now, importance of germ control, and just how to be a good friend. Carlie really enjoyed having her come do that.

Thank you again for all the support. Have a wonderful weekend! I will post a few new pictures soon.

Love, The Edgington's

Thursday, August 10, 2006 10:00 PM CDT

Hello everyone,

In case you didn't see Wednesday's update, Carlie's bone scan came back good! She had to have a blood transfusion on Wednesday. Thursday morning she had her MIBG scan... when we had her doctor's appointment a little later, the radiologist had not yet read her scan, but her doctor took a look at it and said "unofficially" it looks good. She said if the radiologist read it any differently, she would call us. They were even commenting on how good Carlie looks and seems to be doing. We are still praying for next Wednesday's CT and MRI to have the same great results.

She has a break from going back until next Wednesday afternoon for the last two tests and then will also go back Thursday for labs and office visit to get those test results. Since her hemoglobin was so low this past week they decided to delay starting the next round of chemo pill until after next Thursday's visit to check her counts.

After a stressful week, we plan to relax and enjoy this last weekend before school starts! We hope everyone has a great weekend and would appreciate your continued thoughts and prayers for Carlie.

Love, The Edgington's

Wednesday, August 9, 2006 4:47 PM CDT

Hello everyone,

Carlie went in for her bone scan and counts yesterday. They had to poke her two times before they got a good vein so she wasn't happy about that! Her hemoglobin was very low so we went back in to clinic first thing this morning for a blood transfusion (they also had to poke her two times to get a good vein - and she still wasn't happy about that). She did say a big "YEAH" to the nurse after she was able to get it the second time - and I think the nurse was also relieved! They are going to up the dose of the weekly shot she has been receiving to see if that helps. You wouldn't even know that she had low hemoglobin - she's had a lot of energy and playing every day.

Her doctor had the results back from yesterday's bone scan and it was good! Please continue to pray for good results for the upcoming MIBG scan tomorrow and the CT & MRI's next Wednesday.

Love, The Edgington's

Monday, August 7, 2006 12:59 AM CDT

Hello everyone,

Carlie went to clinic again last Thursday to check her counts. Despite getting the shot the last few weeks, her hemoglobin was pretty low. They gave her another shot and we will check her counts Tuesday to see if it has come up enough on it's own. If not, she will get a blood transfusion this week. It was probably a little lower due to just completing a round of chemo pills.

She's had a good week playing, swimming, etc. She is now swimming back and forth across the pool using her arms and kicking her legs - she has become quite the swimmer and loves it! Carlie and Anthony spent the night with Papa and Gram Carruth Saturday night. They had a good time playing and Papa sent them home with some new plants to take care of.

Carlie has her 3 month testing tomorrow and Thursday this week and another test next Tuesday. Please pray for the best possible news we could ask for - no new tumor growth. If all is well, Carlie will start Kindergarten on Wed, August 16th. We appreciate all your continued support and prayers.

Love, The Edgington's

Monday, July 31, 2006 9:28 PM CDT

Hello everyone,

Carlie has had another good week. She went to the clinic last Thursday and her hemoglobin was a little low again so they gave her another shot of the medicine to help rebuild her red blood cells - she was not happy about getting the shot again, but she did an awesome job as usual! She has two more days of her chemo pill this cycle and then she gets a week off before starting it again. She will go to clinic again this Thursday to check her counts.

She had a good weekend. We went up to college station on Saturday to help Lexie move into her new apartment. Carlie and Anthony had a good time seeing sissy's friends again and they pulled out coloring books and markers for the kids to play with. Carlie and Anthony were also a big help with packing, moving, cleaning - funny, they haven't asked to do that since they got home!? Sunday we went to church and then the kids had a great time swimming in the pool.

Please continue to keep Carlie in your prayers. She has two of her tests next week (Tue/Thur) and one the following Tuesday (Aug. 8, 10, 16). We are praying for no new tumor growth. Have a great week.

Love, The Edgington's

Tuesday, July 25, 2006 10:18 AM CDT

Hello everyone,

Hope you have all had a nice week. Carlie has had a great week... she has been full of energy wanting to play, dance around, doing all the things a typical 5 year old wants to do! Her kidney doctor appointment and clinic appointments went well last week. She did throw a fit when she had to get the shot for her red blood cells on Thursday - she just wasn't in the mood to get a shot that day!

We left Friday for Lake Travis and came home Monday. We had an awesome time (see new photos). We did a lot of boat riding, swimming, sitting on the hotel balcony watching over the lake and watching the deer come out in the mornings/evenings looking for food. They did enjoy our apples and cinnamon rolls! Carlie had a lot of fun playing in the hotel pool - she made some new friends who taught her how to play Marco Polo.

We are just taking it easy this week and Carlie goes back to clinic on Thursday for counts. Have a great week.

Love, The Edgington's

Monday, July 17, 2006 11:07 AM CDT

Hello everyone,

Carlie is doing good. She has had weekly checkups the last two weeks. Tomorrow she will have her checkup with her kidney doctor and then we go back Thursday to clinic to have her counts checked. She will get another shot of medicine that helps rebuild her red blood cells so her hemoglobin count will remain higher without having to get another transfusion. Last Friday she started her fourth round of the low dose chemo pill. The plan is to have her take six rounds of this pill. Her testing is scheduled for early/mid August.

Carlie has been very busy. She has been swimming a lot and has become quite the little fish. She also got to go to WOW Science Camp each afternoon last week and really enjoyed that.. Anthony also went to an all day Camp Invention last week (nice little break for Mom!). Sissy came to babysit last Friday night while Mom and Dad got an evening out with friends. This weekend we are planning to go to Lake Travis with Uncle Clark and Aunt Susan. Carlie cannot get in lake water so she will be able to take some boat rides and we booked a hotel so she should be able to swim in their pool.

Please keep Carlie in your prayers this upcoming month. We are praying for all good test results with no new tumor growth. Have a great week.

Love, The Edgington's

Monday, July 3, 2006 7:30 AM CDT

Happy 4th of July weekend! Carlie went to clinic last Thursday for counts and to get a shot of the medicine that will help her body make more red blood cells. Her hemoglobin was very low and since the medicine doesn't work overnight, she needed a blood transfusion. They were busy and all booked up that day and the next morning so we had to go back on Friday at 1pm to get her transfusion - we got home about 8:30 that evening - so it was a busy two days. She will go back again this Wednesday for counts again (Mom is leaving Wed p.m. for a girls trip to New York!) Dad and Grandma and Grandpa Shipley will take care of Carlie and Anthony.

Despite the rainy weather we are having a great holiday weekend. Our friends from Wichita, the Pavetto's, are in town staying with us - and also Dave and Jody and hanging with us all weekend - they are moving to Austin soon - so we are enjoying our time together!

Have a happy and safe 4th of July!

Love, The Edgington's

Tuesday, June 27, 2006 7:03 AM CDT

Hello everyone,

Carlie went back to clinic last Thursday to have her counts checked. They were fine except her hemoglobin is still hanging around a little low so they have decided when she goes to clinic this Thursday to give her a shot of a medicine that is supposed to help her body rebuild some of her red blood cells. She will probably have to get a dose of this every 3-4 weeks but it should boost her hemoglobin and give her a little more energy.

She has been feeling good. Last Friday she went to a 4 hour Mother's Day Out at a dance studio - they did arts and crafts, some dancing/gymnastics, played games, etc. She said she had a good time and would like to go back another day. We had a good weekend - we went to church, she swam a lot and we had family over for lunch on Sunday -she got to see her cousins Aubrey, Jack, Tyler and Amanda.

Have a good week. Love, The Edgington's

Monday, June 19, 2006 2:46 PM CDT

Hope everyone had a nice Father's Day weekend. We went to visit and eat dinner out with Papa and Gram Carruth and Aunt Catey and Uncle Mike on Saturday. On Sunday, we had Papa and Grandma Shipley and Lexie over for Father's Day - we grilled steaks out and watched our video we took at Disney.

Carlie went to clinic last Monday and Thursday. On Thursday all of her counts were up from Monday except her hemoglobin dropped so they wanted us to come back to clinic today (Monday) to check again to see if she might need a transfusion. Thankfully her hemoglobin went up since then and we didn't have to stay for a transfusion. Despite the bad weather we've had today, we were home from clinic by Noon!! Carlie started her third round of chemo pill last Friday and she will go back to clinic this Thursday for counts again. The kids are excited because the summer junior volunteers are back at clinic - they always have lots of fun arts and crafts to do - so between them and Ms. Lendy, I don't have to hear "I'm bored and ready to go home" as often! Childlife Specialists and Hospital/Clinic Volunteers really make a big difference to those children and we thank them for their service!

Have a great week and stay dry! Please keep saying your prayers for Carlie.

Love, The Edgington's

Saturday, June 10, 2006 3:08 PM CDT

Hello everyone,

Well, we made it back from Disneyworld yesterday afternoon... It was an awesome trip for all of us! We went to Magic Kingdom, Universal Studios, MGM Studios, and Animal Kingdom. We were planning another park on the last full day we were there, but Carlie was pretty wiped out by then and just wanted to hang around the village for the day... so we played at the pool then we went out to eat and to the outlet mall (big sissy's request!) The place where Make-A-Wish had us stay is called Give Kids the World - it is an awesome place (www.gktw.org). It's like a neighborhood village. We had our own 2 bedroom/2 bathroom cottage with a kitchen. I believe there are about 100 cottages there. They have a restaurant, swimming pools, fishing pond, movie theatre, castle with games, crafts, play areas, carousel, train, putt putt golf, horse rides, ice cream shop that is open 7:30am til 9:30pm, theme party nights including Christmas night with Santa, and so much more. The kids were just as happy playing at the village as they were the parks. We got the royal treatment at the village as well as the parks - we didn't have to wait in line for the rides so it made it so much easier trying to do everything the kids wanted to do.

We are just recouping this weekend getting caught up on household chores! Carlie finished her second round of chemo pills this past week. We'll go back to clinic Monday and Thursday this week to check her counts.

Love, The Edgington's

Thursday, June 1, 2006 2:34 PM CDT

Hello everyone,

Carlie is doing very well. She had a clinic appointment last Thursday and today and her counts are doing good on the new dosage of her chemo pill. We've been a little cooped up with all this rain but she has managed to get some play time in and some swimming lessons! Hopefully, Lake Conroe is getting this rain and at some point this summer be able to get our boat out in the lake again. Carlie won't be able to get in the lake water but we can go for some boat rides! We leave this weekend for our family trip to Disneyworld!! We'll post a new message and photos when we get back!

Please continue to pray for Carlie .. for no new tumor growth, for her to continue to feel good and for her kidney function to improve. Take care and have a good week.

Love, The Edgington's

Friday, May 19, 2006 11:19 PM CDT

Hello everyone,

Carlie had her checkup at the clinic yesterday and everything was good. Her counts are back up and they took out her PIC line. When we left there we went straight to her preschool so she could go the last two days of class. She was happy to see her friends again. She started the next round of the oral chemo pill today at a reduced dosage - they just want to give her a low dosage so her counts don't get as low as they did this past round - it may take another round or so to figure out that exact dosage. But, for now, we can get back to a few normal things - swimming in her pool, going to church, etc.

A few months ago, Carlie got to meet with Make-A-Wish and she chose a trip to Disneyworld. So, we have a family trip planned in a couple of weeks... we even got big sissy to come with us! Her doctor said we should still be able to go on that trip and they would work with her on her chemo pill dosage so her counts won't be down during that time. Make-A-Wish puts together an awesome trip for these kids and we are looking forward to having some fun!

Take care and have a good weekend.

Love, The Edgington's

Monday, May 15, 2006 11:27 AM CDT

Hi everyone,

Hope everyone had a great weekend and a Happy Mother's Day. I know we did!! Carlie has been doing great and she will finish her IV antibiodics tomorrow and go back to clinic Thursday for her checkup. She has had to stay home from preschool these past two weeks so hopefully they will take out her PIC line and tell her she can go back Friday for her last day of school. Anthony had his birthday party Thursday night at Pump It Up and Carlie had her party Saturday at the bowling alley. She had such an awesome time and got lots of fun gifts. We celebrated Mother's Day at our house yesterday.... so we are just hanging out at home taking it easy now!

You can check out new photos on the website. Have a great week.

Love, The Edgington's

Thursday, May 11, 2006 7:07 AM CDT

Hello everyone,

Carlie got to come home yesterday afternoon! She will finish out her round of IV antibiodics through next Tuesday and then go back to clinic next Thursday to check counts and talk to the doctor about the next round of chemo pill - hopefully at a lower dosage so her counts don't get so low next time. The good thing is she felt great while she was in the hospital and her counts are coming back up too - she played hard - we played a lot of soccer in the hallway with her new pink soccer ball - even recruited a doctor and Miss Lendy to play along with us. She had a little birthday celebration last night with Mom, Dad, and Anthony - opened a few presents and had some more of that cookie cake!

Anthony's birthday party is tonight, but we felt it is best that Carlie hang out at home - don't want her rough playing with that PIC line in and want to keep her rested so she can celebrate her birthday this weekend with friends. Lexie is home from college so she's coming by to visit for a bit.

Even though we got sidetracked this week with a hospital stay, we are so thankful that all of Carlie's 3 month tests came back with good results!!! Thanks for all the prayers.

Love, The Edgington's

Monday, May 8, 2006 9:19 PM CDT

Hello Everyone,
Although we had a full and tiring week last week with all the tests, it was all good news when we got through with it, so the family went out Friday for dinner to celebrate. Well, so much for so much good news all at one time... when we got home that evening Carlie started to spike a fever and before you know it, Mark is taking her down to TCH to spend the night. They got through the ER pretty well, but it didn't appear there were going to be any beds available that night, so Dad and Carlie slept next to each other on stretchers in the ER until about 3am when they found a room for Carlie on the 9th floor. After an hour or so of getting into the room and checked by the doctors and nurses they tried to get some sleep. Between the blood work checks at 5:30am, the constant monitoring of vitals and the storm that hit early that morning... sleep was not a easy thing to find for Dad or Carlie.
The good news though was that as soon as they started the IV with fluids and the anti-biotic, the fever broke and hasn't been back since. There was hope that if 48 hours passed without a fever that Carlie could come home Sunday evening... yes the big B-day celebration was cancelled Saturday due to the fever. However, after Dad swapped out with Mom on Saturday night, the doctors came in to tell Mom and Carlie that an infection was found in her blood work and that was the cause of the fever. So now we need to have three consecutive clean reads on the cultures before Carlie can leave... best case now would be Wednesday.
So needless to say, Carlie and Mom celebrated Carlie's B-day at TCH today. Happy 5th B-day Carlie... what a big girl you are now!!! Grandma Martha made a special pink cake and brought it to the hospital on Sunday afternoon along with a princess crown and wand. Uncle Clark & Aunt Susan sent something by as well and the hospital brought in ballons, streamers and a cookie cake. Mommy's friend Jody showed up today as too to bring Carlie's present and visit with Mommy... it was really a great day all things considered.

We are just hoping and praying now for clean cultures and getting Carlie home in time for big brother Anthony's B-day on Thursday. Dad is coming down to swap out with Mom again tomorrow evening so Mom can go home and get everything ready for Anthony's big day... it's really a crazy week.

Pray with us please for Carlie's quick recovery and return home... we love you all.

The Edgington's

Thursday, May 4, 2006 2:38 PM CDT

Hi everyone!

We just got back home from today's testing and office visit with Carlie's doctor. Tomorrow morning she has her last test scheduled - it's the bone marrow test and we should have those results next Tuesday.

We are sooooo happy to tell you that we received the results of the the testing she's done these past three days and they are all GOOD!!! The spots on her spine area are gone and nothing new developed. Her one rib still showed up darker on the bone scan like last time but nothing shows up in that area on the MIBG scan so her doctor does not have any concern with that area at this time - she thinks something may have been there prior (maybe a bruise) and it's still healing. Her creatinine level is 0.8 again so that's good news too.

Her blood level and platelet counts are lower again this week due to the chemo pill. They will check those counts again next Tuesday and may adjust the dosage of the pill for the next round so her counts won't drop too low. Although nothing new has developed, they still want to keep her on this treatment for preventative measures for now.

Thank you all again for all your thoughts and prayers - we couldn't have asked for a better day today and hopefully tomorrow's test will have the same good results.

Love, The Edgington's

Tuesday, May 2, 2006 10:06 AM CDT

Hello everyone,

Carlie had her weekly checkup last Thursday. Her hemoglobin was slightly lower again so they decided to give her a blood transfusion. Her creatinine level was 0.9 (happy it was still under 1.0). Her other counts have dropped some more due to the chemo pill. She takes her last pill today for the first cycle and now gets 7 days off before starting the next 21-day cycle. She is starting to lose some of her hair - which she is not too happy about but taking it well like the trooper she is!

Today starts her 3 month testing again - so we will be back and forth to the hospital each day today through Friday. We will update the website after we receive her test results. Please pray for great results!! She is also getting ready for her birthday - she will be turning 5 years old next Monday, May 8th!!

Love, The Edgington's

Sunday, April 23, 2006 1:51 PM CDT

Hello everyone,

Carlie has had a great week. Playing hard and having fun swimming, at school, going to the park, etc. She had a good doctor's visit last Thursday. Her white blood cell count is great, her platelets and hemoglobin have dropped a little due to the chemo pill she is taking. She is doing very well at taking the daily chemo pill so far - it did upset her tummy a couple of mornings this week, but not enough to stop her from eating, playing, etc.

The level they check that ties to her kidney function is called Creatinine... the doctors (and us of course) were so happy to see improvement in that number this week!! During all of her chemo treatment her range was 0.3 to 0.5 and after the Accutane it shot up to 1.3 and then was staying at 1.0 this past month or so - it was 0.8 at Thursday's visit - we will take any improvement we can get. Hopefully it will get better or at least stay where it's at. She goes back this Thursday for her weekly checkup.

This coming Wednesday is the one year anniversary of when Carlie's tumor was found. It has been a long, hard year for all of us but it would have been a lot harder if we hadn't had all the love, support, thoughts and prayers from so many people. We feel truly blessed to have that. We are also thankful that if we are having to deal with this disease that we live in a city with such a great medical/cancer center... it took me about one day of being in the cancer center to recognize that - people travel for hours from nearby cities to come here as well as come from other countries. Please continue to keep Carlie in your prayers - her three month testing will be May 2-5.. we are praying that the remainder of those spots on her spine area are gone and that she has had no new tumor growth.

Have a great week. Love, The Edgington's

Monday, April 17, 2006 7:43 PM CDT

Hello everyone! Hope you all had a good Easter weekend. We had a great weekend with beautiful weather. We went to church, had dinner with Lexie and Grandma and Grandpa Shipley on Saturday, and Sunday went to Aunt Catey and Uncle Mike's house to visit family and celebrate Easter. The kids had a great time together and enjoyed their Easter goodies and egg hunts. The weekend before we took Carlie and Anthony to see Disney on Ice-The Incredibles... they really liked that!

Carlie has felt good and has been busy with school and playing outside with friends. Last week we had her one month checkup with her kidney doctor - her kidney numbers are still staying in the same range. The doctor is hopeful that with her taking the blood pressure medicine her kidney function could still improve some over time, but may not get back to where it was. She started taking her chemo pill about six days ago - that pill is even bigger than the Accutane was and she is swallowing it with no problems. She told me after taking the first pill that after she is all better and after the other children at the hospital are all better that she wants to mush down that building with a wrecking ball! I can't say I blame her! She goes back to clinic this Thursday for her blood level checks and visit with the doctor.

Both Carlie and Anthony are getting very excited - their birthdays are coming up in May and everyday they are talking about what kind of party to have, etc., etc.!!

Have a great week. Love, The Edgington's

Thursday, April 6, 2006 4:26 PM CDT

Hello everyone,

Carlie had her clinic appointment today. Her blood level counts were fine and the numbers that relate to her kidney function were the same... which at least means her kidney has been stable for a month. We still hope that we will see some improvement over time. Her doctor said since it has remained stable she does want to start Carlie on an oral low dose chemo pill... since she cannot take the Accutane she would feel more comfortable trying something preventative during this stage in Carlie's treatment to prevent regrowth. She will start taking that early next week - she will take 1 pill a day for 3 weeks and then 1 week off. She will go back for weekly level checks. For right now as long as she feels fine she can continue doing as she's doing - going to preschool, etc. She may have some mild nausea, may lose some or all of her hair again (each patient is different). She has her one month checkup with her kidney doctor next Tuesday and then will go back the following week for level checks. Her next round of testing (bone scan, MIBG scan, CT, etc) is scheduled for the first week of May.

Please continue to pray for Carlie's kidney function and that her body tolerates the chemo pill so she can remain on this treatment and it will hopefully be beneficial to her.

Love, The Edgington's

Thursday, March 30, 2006 9:13 PM CST

Hello everyone,

I've been meaning to update the website all week! Carlie has been doing just fine - full of energy, feeling good, playing a lot, going to preschool... she even dressed up as a barbie princess to go to her friend, Ally's, birthday party yesterday. Dad has been out of the country for the past 12 days and he finally got home tonight - so Mom and kids have been busy, but were so happy for him to come home. Carlie's blood/platelet counts were fine on her last visit about a week ago and the kidney numbers were about the same. They did decide to start her on high blood pressure medicine to see if that may help out her kidney. She will go back to the clinic next Thursday to check counts again.

The kids will be hanging with Dad this weekend while Mom gets to visit with friends, Carol and Liz, coming from out of town. Dad won tickets to Disney on Ice so we will take the kids to see it the following weekend - they are looking forward to that!

We are still continuing to pray for Carlie's kidney function to improve and for no new tumor growth. Take care and have a great week.

Love, The Edgington's

Sunday, March 19, 2006 6:55 PM CST

Hello everyone,

Carlie has had a good week. We did meet with the kidney doctor last Monday. They took some bloodwork to run some tests and examined Carlie. Her doctor said she seemed to be doing pretty good and asked that we come back in a month. She did say that it takes some time to see what the kidney is going to do - it may be a month or two before we really know. We go back Tuesday to clinic for labwork and another office visit with her oncologist.

Mom, Dad, Anthony, Carlie, and Grandma and Grandpa Shipley went to San Antonio Wednesday through Friday. We went to the Riverwalk and had lunch, did the boat ride tour, and went through the Alamo. Thursday we spent all day at Seaworld. Anthony got picked to go up on stage during the Shamu show - he got to feed fish to the whales... he was soooo excited. On Friday we went to Gruene for a while before heading home.

Today after church we went and had lunch with Grandma Betty and then went to visit Papa and Gram Carruth. Spring break is about over and the kids should be back at school tomorrow.

Please keep Carlie in your prayers... we are asking for her kidney function to return to normal and for no new tumor growth.

Love, The Edgington's

Saturday, March 11, 2006 5:49 PM CST

Hello everyone,

Carlie had her GFR kidney test on Wednesday and her clinic appointment/labwork on Thursday. Her kidney is functioning below normal. Two of the numbers they check on her labwork were slightly better than last week. We still need to wait and see what her kidney function is going to do from here. Carlie's red blood cell count was down some due to kidney not functioning properly so she had to get a blood transfusion while we were there Thursday. It takes about three hours and then they keep you for an additional hour for observation. By that time it was 5pm and when they took her blood pressure before releasing her to leave, it had gone up pretty high. They think it was due to her retaining too much fluid from the transfusion. They needed to give her some medicine to make her - okay I'll just say it - pee a lot. We ended up having to spend the night in the hospital so they could observe her. About 9pm her blood pressure went down for the first time and then again at 10pm and it stayed normal after that. We finally got to check out about 3pm on Friday (had to wait for doctor's to make rounds, etc.). Since this happened they do want her to go ahead and meet with the kidney doctors. So, we'll go back Monday for that appointment and we'll also get her labwork done again. Thank you to our friend, Jody, and Ms. Lendy for helping tired Mom entertain Carlie at the clinic/hospital.

We are planning to go to San Antonio/Sea World Wednesday through Friday - hopefully we should still be able to do that. Carlie is feeling great, full of energy, eating lots and she even got in the hot tub today with Anthony for the first time in almost a year! She was pretty happy about that. Last night we took big sissy out to dinner at PF Chang's to celebrate her upcoming 20th birthday and sissy's friend, Claire, got to join us too along with Grandma and Grandpa Shipley. Today, Grandma Martha, Aunt Catey, and baby cousin Aubrey came over and the girls went out to lunch and to the mall to play and ride the merry-go-round. I'm planning to post new pictures today or tomorrow so take a look.

Please keep those prayers coming for Carlie's kidney function to improve and for no new tumor growth. Have a wonderful weekend.

Love, The Edgington's

Saturday, March 4, 2006 9:46 AM CST

Hello everyone,

Carlie had her one month checkup this past Thursday and the plan was to start her second 2-week cycle of Accutane on Friday. However, her labwork came back indicating the Accutane is messing with her kidney and since she only has one kidney we don't want to damage it. So, she will not be able to continue that treatment. She is scheduled to have a kidney test next Wednesday and then another doctor visit/labwork on Thursday. They need to assess her kidney and see what it is going to do - get better, worse or stay where it's at before they can recommend next steps. The doctor said because Carlie did still have those additional spots prior to going into transplant she didn't feel comfortable not doing some sort of treatment to prevent regrowth of tumor.

Other than that Carlie is doing great and feeling good and we don't have to change anything we are doing right now as far as getting out and doing things. She started preschool a week ago - she goes four afternoons a week. She has been playing a lot. We are taking the kids to the rodeo today and have great weather - so it should be a nice day!

We ask that you please continue to keep Carlie in your prayers, that her kidney will be fine and they can recommend a treatment plan that will be easy on her as well as beneficial to her.

Love, The Edgington's

Saturday, February 18, 2006 4:23 PM CST

Hello everyone,

Everything is about the same with Carlie... she's doing very good. She completed her first 14 days of Accutane. So, she will go back to the clinic in two weeks for her labwork and then start another 14 days of the Accutane again. She's been doing good. She's been busy playing with friends, going with Mom to bible study, doing artwork, playing computer and video games, etc. We went to visit Daddy at work on Friday and had lunch with him. She enjoyed seeing Dora Live at the theatre last weekend. We also celebrated Valentine's Day and Daddy's birthday this past week.

Have a great week and stay warm!!

Love, The Edgington's

Wednesday, February 8, 2006 9:02 AM CST

Hello everyone,

Carlie had her appointment last Thursday with the doctor to go over the Accutane treatment. She takes four pills a day for two weeks and then she will have two weeks off. We then go back to clinic and have her lab work done and get her prescription refilled for another two weeks on/two weeks off. Then repeat the process for another month. After the three months she will have her testing done again (scans, CT, etc.). Carlie has never had to swallow pills before, and I have to say, she did so awesome in quickly learning to swallow these pills - she puts it in a big bite of yogurt and swallows it the first time - and that helps in getting some extra calories in her!!

She has had a good week. We had friends over for dinner Friday and for Superbowl. Lexie came over to watch the kids Saturday night and they played a lot of games and made Dora sugar cookies. We went to church on Sunday and Carlie and Anthony got to go to their kids church for the first time in a long time - they both really enjoyed going! Yesterday, I took Carlie to visit and have lunch with Grandma Martha at her work and got to meet all her work friends who have been praying and keeping up with Carlie's progress. Today we are going to go to The Woodlands Children's Museum to play for a bit. We received an email from Miss Lendy at clinic and she had some tickets for Carlie to go see Dora the Explorer Live this weekend at The Hobby Center - Carlie is soooo excited about that! As you can see, she's keeping busy!

Hope you all have a great week. I'm planning to post a few new pictures.

Love, The Edgington's

Tuesday, January 31, 2006 3:01 PM CST

Hello everyone,

I heard from Carlie's doctor this morning. She could tell I was very anxious so she started out by saying it is good news so she would know that I would hear everything she was going to tell me after that! The bone marrow results came back good. She said one of the numbers they check from that test (I think she said cell count - should have wrote it down) was a little low but that can happen after transplant. She also went over the scans a little bit more than her assistant told me on Friday. As of right now they are just going under the assumption that the rib is bruised. The spot that was previously on the femur is definitely gone. The spots that were previously on the spine area still show up a little bit - the area is smaller than before, but a little bit still shows up in the MIBG scan. She said radiation works over a period of time so this area may be gone at her next scan, but they will take a look at that then. A spot did show up in the MIBG scan on her liver and she felt by the size of the spot it would show up on the CT scan if it were a problem - and it did not show up on the CT. She said sometimes they get false positive readings in the organ areas because these areas can be difficult to read on the scans. She said to look at this as good news and said she was ready for Carlie to proceed with the Accutane. Carlie will go back to clinic on Thursday to have her counts checked and to get her prescription and information on administering the Accutane. She will take it for two weeks on and two weeks off and I believe they will do all of her scans/tests again in three months. She said the medicine can cause some moodiness and her skin will peel.

We asked about getting back into somewhat of a normal routine with her (i.e. taking her to church or preschool, etc). The doctor said we can start easing back into that with her for now. I think we'll see how she feels after she starts taking the medicine and go from there.

Hopefully, we can breathe a little easier for now. We know it's one day/one step at a time, but need to celebrate good news when we get it. We could not have made it this far without all the support and prayers from everyone. We would still appreciate your thoughts and prayers for Carlie's continued treatment.

Love, The Edgington's

Friday, January 27, 2006 2:19 PM CST

Hi everyone,

It's been a long, anxious week with all of Carlie's testing. She was such a brave girl and did everything she was supposed to do. Today was the last test - it was testing her bone marrow - we should have those results back next Tuesday. And we are so thankful, blessed, and extremely happy to say the the CT, bone scan, and MIBG scan all came back fine!! The spots on her femur and back were gone from the MIBG scan and those same areas on the bone scan showed lighter which means that the bone is healing in those areas. The bone scan did show a new dark area on one of her ribs and we were still waiting on the final reading of the MIBG scan to see if something showed up in that area - the doctor's office called us back on our way home from today's test saying that nothing showed up on the MIBG in that area. It could possibly even be a bruise - she did take a tumble down the stairs a few weeks ago. Anyway, we are not sure what it is, but they don't see any reason to re-scan her before they were planning to in three months. So, now we just wait for the bone marrow results and go from there. If those results are fine then her next step is to take the medicine Accutane (oral medication) - I believe it would be to take it for two weeks on, then two weeks off, for the next three months. We will get all that information pending test results.

As always, thank you all so much for your prayers and support. It felt good reading your notes and receiving calls of support prior to going into her testing - gave us a boost of strength that we needed. It feels so good that Carlie has some results to show for all that she has been through... let's pray that continues.

Love, The Edgington's

Tuesday, January 17, 2006 10:22 PM CST

Hello everyone,

Just a quick update on Carlie's past week or so. She's been feeling good and eating really well. She has maintained her weight and may have even gained a pound. We've been enjoying our time with no clinic visits... although I know she misses Miss Lendy! We've gone to the park several times, library, and we even made a last minute trip to visit our friends, The Pavetto's, in Wichita, Kansas this past weekend. It was our first family out of town trip since all this started! Carlie was counting down the time to get on the airplane. The kids had fun playing together. Carlie mostly wanted to hang out with us adults (she didn't like being in the middle of those 3 boys!) and she made Dad and John play quite a few games of Whack-a-Mole! On our flight home yesterday evening we had a little bit of a bumpy ride at the end and Carlie thought that was fun - she kept saying "Weeeeee" with a big smile on her face.

As you all know, next Tuesday through Friday will be Carlie's testing again. Please pray that all of Carlie's test results come back good so she can move forward with the next phase of her treatment. She deserves the best news possible with all that she has been through these past seven months - what a brave girl she is!

Love, The Edgington's

Thursday, January 5, 2006 8:14 AM CST

Woo hoo!!! Carlie got her PIC line taken out on Tuesday! We are all very happy about that! Her counts were also very good. We get a three week break from going to clinic. We go back for all of her testing Jan. 24-27th. She's still doing good eating - she did lose another 1-2 lbs., so we've got to keep her eating.

We all went to help Lexie move into her A&M apartment on Monday. Anthony started back to school Wednesday. Carlie and Mom met friends at the park for lunch - Carlie had a good time playing. We hope to be doing a lot more of that in the next three weeks.

We would appreciate your prayers for Carlie's test results to come back good so we can move on to the next phase of her treatment plan.

Love, The Edgington's

Friday, December 30, 2005 8:43 AM CST

We hope you have all had a Merry Christmas. We had a great Christmas and we are very thankful Carlie has remained healthy during these holidays. She had her clinic appointment this past Tuesday and her counts were very good. Next Tuesday we will see the doctor again and see if she's ready to remove Carlie's PIC line. Carlie has been doing great eating and drinking and we only had to give her the medicine to stimulate her appetite for a few days. She usually talks about what she's going to eat for her next meal while she's eating her current meal. Her big things right now are chicken nuggets, spaghetti noodles, cheese pizza - and she likes to dip everything into ranch dressing. She loves to eat at Chili's so we took her there after clinic - I ordered fried cheese which she has never tried - she loved it - and quickly devoured 3 pieces.

We spent Christmas Eve at Uncle Clark and Aunt Susan's house and Christmas Day at Papa and Gram Carruth's house. We got to see all of our family that we have in town and all the new little ones that our family has been blessed with this past 1-1/2 years. We hope that all of our out of town family enjoyed their holiday as well as we missed seeing them. The kids were so excited with all the wonderful gifts they received and were also very excited Christmas morning with Santa's visit as well. A few days before Christmas we took Carlie and Anthony to church and went to Carlie's Small World church to watch their Christmas performance. We enjoyed seeing her Small World family and thank them for the extra special attention!

Big sissy, Lexie, has been home from college so we have been able to spend a lot of extra time with her. Charon and Jody took Lexie and Carlie to their first performance of The Nutcracker. Today Dad and Grandpa Shipley are helping Lexie move all her stuff home from her Baylor apartment. They are still trying to work out details for an A&M apartment - hopefully we'll get to move her in to one this coming Monday.

Hope everyone has a safe and happy new year!!

Love, The Edgington's

Wednesday, December 21, 2005 8:01 AM CST

Happy Holidays everyone! Carlie had her weekly clinic appointment yesterday and her counts were all good. She has been eating a little bit each day for about 12 days now and the last few days it's been a little more each day. She even asked for a bag of Fritos at clinic yesterday. The doctor decided to try taking her off the TPN and see how she does. They prescribed her a medication that should increase her appetite - she will start that today. It will be so nice to not have to hook her up to that TPN every night for 12 hours! They will leave her PIC line in for now to make sure everything goes okay. Her energy level has picked up even more these past few days and her personality even seems more back to herself. She wants me to turn the radio up in the car so she can hear the music, sing, dance around, wants to play more, likes to help me cook, wrap Christmas presents, etc.

We are looking forward to a great Christmas with our families. Daddy will be off work all next week and we are looking forward to spending some nice time off together.

Our whole family wants to thank each and every one of you, many of whom we haven't even met personally, for all your prayers, support, love, friendship, help, gifts, donations, listening ear, etc., that you have given us this past year. We have truly been amazed. We hope that you all have a Merry Christmas and a Happy New Year!

May God Bless You!

Love, Mark, Charon, Lexie, Anthony and Carlie Edgington

Monday, December 12, 2005 5:24 PM CST

Hello everyone,

Hope everyone is enjoying getting ready for the holidays! Carlie has been doing really good. Her counts are fine. Her energy level has really picked up and she's generally in a much better mood most of the day - not waking up as grumpy in the morning! She is still on TPN - she is eating and drinking some when we ask her to try doing so, but she doesn't ask for anything herself yet. One day last week she did ask for 1 chicken nugget from Wendy's but got upset when it didn't taste right to her. We stopped by our church last week for a visit in her Small World building - she got to see some friends and hear about what the kids have been learning about in church. She had a good visit and was very happy to see everyone. Carlie and Anthony went to stay with Papa and Gram Carruth Saturday evening while Mom and Dad went to dinner - they had a good time visiting and playing.

Today I was planning to take Carlie to meet a friend at Chuck-E-Cheese when they opened (it's pretty empty and clean in there when they first open up during the week!). Right before it was time to leave the house, one of her PIC lines broke. I had to clamp it off and immediately take her to clinic to get it repaired. They also went ahead and did her labwork so I don't have to go back tomorrow. She was very upset at first as she's been looking forward to going all weekend - every day she asked me "how many more days til Chuck-e-Cheese". She got over it pretty quickly and was quite the trooper and had a good time playing with Ms. Lendy at clinic... we even had lunch with Ms. Lendy and Carlie ate a few french fries! So, of course, we'll be at Chuck-E-Cheese's doorstep tomorrow morning - unless something else comes up!!

Last Thursday at clinic Carlie had a check up with her doctor. Everything is going fine. For the time being we only have to go to clinic once a week and then her testing will be redone at the end of January and then we will discuss the next phase of her treatment. After she gets off the TPN they will take her PIC line out - we are sooo excited about that!!! Our prayers for Carlie are that all of her testing comes back good - we would like to see that the spot on her femur and the spots on her back are gone so we can move forward with the next phase of her treatment plan.

We'll update the website again later this week, but in the meantime everyone enjoy your week and be safe during this crazy holiday shopping time!

Love, The Edgington's

Monday, December 5, 2005 7:42 AM CST

Hello everyone,

Carlie is still doing good - slowly getting her strength back. Some days she wants to play some and some days she's perfectly content laying on the couch watching TV (sounds pretty normal to me!). She went outside a little bit each day this weekend. Watched Daddy put up the lights on the house and she got to play with a few friends on the street for a bit. She went to clinic again last Thursday and her counts have continued to go up - her white blood cell count finally moved into the normal range and her platelets were almost there. She finally finished taking her anti-fungal this weekend, but she's still on TPN. Still doesn't want to eat and we've gotten her to take some sips of milk here and there but she's not asking for it yet. She'll go for clinic checkups Tuesday and Thursday this week.

Big sissy found out this past week that she's been accepted to A&M starting January! She was not happy at Baylor/Waco and decided she wanted to transfer to A&M.. she'll be a little closer to home!

Grandma and Grandpa Shipley are coming over today to watch her while Mommy gets out to Christmas shop. She does like to have some visitors - I think she's tired of seeing just Mommy everyday! Tonight we are hoping to take her and Anthony to visit Santa and then come home and decorate the Christmas trees... Daddy bought Carlie and Anthony a tree their own size to decorate and have upstairs. You can check out some new photos on the website.

Love, The Edgingtons

Tuesday, November 29, 2005 9:17 AM CST

Good morning! Hope everyone is enjoying this cool, sunny weather we are having! We had a great Thanksgiving weekend. Spent the day with family and got to see our two new cousins that have joined our family this past year - Aubrey will be 1 at the end of December and Jack will be 1 in February. Grandma and Grandpa Shipley came to watch the kids Saturday so Mom and Dad could do some Christmas shopping. On Sunday we went to visit Grandma Betty and her puppy Daisy and then Grandma Martha. Other than that, Carlie just took it easy.... she slept in til about 10am each morning!

She's still not eating but I got her to take two sips of milk last night... hopefully she'll want to start soon. She went to bone marrow clinic for checkup yesterday. Her counts were good - all her numbers went up since last week. They said she looked good and they released her from the bone marrow transplant group and she'll be switching back to her regular oncology group/clinic for her next visit later this week. Another hurdle behind us!! I believe for now she will just be going for clinic checkups until all of her testing is redone at the end of January... I'll confirm that with the oncology clinic at one of her upcoming appointments.

Thanks for continuing to check in with us and Carlie's website... and, of course, all your prayers and support.

Love, The Edgington's

Wednesday, November 23, 2005 8:39 PM CST

Hello everyone,

Hope you are having a good week and getting ready for Thanksgiving. Carlie went to clinic on Monday and Wednesday. Her counts went up each day so everything looks good there. We are weaning her off the Methadone (mild narcotic she had to have after the Morphene) - she has to take it by mouth which she doesn't like, but she has kept the last two days doses down! She will be on the anti-fungal until Saturday, Dec. 3rd. She still has no desire to eat or drink. The radiation made her skin darker - looks like she has a summer tan - and it is starting to peel quite a bit - it's dry and itchy so that bothers her some. Hopefully, that will be all back to normal in the next couple of weeks.

She is getting some of her energy back - she helped Mommy make dinner and pie crust tonight. Lexie is over spending the night with us tonight and will be with us for Thanksgiving. Carlie finally felt like trying on some new clothes Mommmy bought for her and gave us a little fashion show. She was pooped out by 8:30pm and asking to be put to bed... even though Anthony was going to stay up later. We are planning to spend Thanksgiving Day with our family at Uncle Andy and Aunt Annette's house. Hope everyone has a safe and happy weekend.

Love, The Edgington's

Friday, November 18, 2005 5:03 PM CST

Hello everyone,

Sorry we haven't had a chance to update this week, but wanted to write a quick note to say CARLIE IS HOME!! We got home about 4pm today. She had another chest scan yesterday and it came back normal - which is awesome! The pneumonia has cleared up. Since she still is not eating or drinking she will be on 12 hour TPN each night and she will remain taking one of the anti-fungal medicines for another 1-2 weeks. Both of those are given through her new PICC line. She has another few meds to take by mouth - which she is not happy about. She is still feeling nauseated and tired which is to be expected. We have already had a few problems with her new PICC line - one of the tubes cracked over the weekend and had to be repaired and on two different days there was some bleeding from the site so they had to change the bandages and look at it - they think it's just getting pulled some and causing the bleeding. We are going to have to be really careful with this line. Hopefully she won't have to have it too long.

Dad and Anthony left this afternoon to go to Uncle Andy's ranch with Uncle Clark, cousin Tyler and a bunch of other guys for a hunting weekend - we know they will have a great weekend and they will be home Sunday. Mom and Carlie are just going to hang out and recoup, unpack, and stay warm!

Carlie will be going back to clinic on Monday for a check-up. Have a warm and safe weekend. Thanks for all the continued support.

Love, The Edgington's

Sunday, November 13, 2005 11:36 AM CST

Hello everyone,

Carlie is continuing to progress... I think all those prayers are being heard! She has remained fever free for the past 5 days and has not had to use the oxygen anymore. Her breathing is getting much better. All the blood cultures have remained negative which should mean the fungal infection is getting cleared up. Her counts fluctuate some and she may need to get more platelets soon. She has started playing Barbie Playstation again and her computer games (which is definitely a sign she's getting better). Daddy brought her Barbie fishing pole up to the hospital so she can practice casting in the hallway. Physical Therapy started working with her on Thursday. Since she's been laying in the bed for so long her legs and back muscles are weak and she needs help getting back to walking. It looks like she will be in the hospital at least through the end of this week and will probably come home still on antibiodics, TPN, etc.

Brother Anthony got to visit on Friday and I can tell he was happy to see her feeling better than when he visited last week. He spent the weekend with his friend Trace out in Katy - they went to the horse races Saturday night and Ms. Brenda warned me we might have a gambler on our hands! They had a great time.

Your continued thoughts and prayers are appreciated. We continue to read all your messages and they have been so uplifting to us, especially during this time. When Carlie is in the hospital, we relay the messages to her too - she gets a smile on her face when I tell her all the things people write to her.

Love, The Edgington's

Thursday, November 10, 2005 1:38 PM CST

Things continue to progress in Carlie’s recovery, some good and some bad, but they are moving mostly in the right direction. The fevers have subsided as of Tuesday evening and the procedure to place the PICC line went well on Monday, although Carlie is not sure about the new pain in her arm. She had an Echogram on Tuesday morning and everything looked good on that. Later that day she had a full body CTI scan to look for other areas or pockets of infection as the fevers were still happening. That scan showed fluid in Carlie’s lungs and she was diagnosed with Pneumonia. She has been on O2 some, but that stopped last night and she is starting to sit up more in bed, which helps her breathing and will in turn, help the Pneumonia.

Our hopes of coming home this week some time have since been lost… we now know that she will be in most, if not all of next week. Mark cancelled his trip to Europe and will be here still to take turns with Mom at the hospital. We hope now that she will be home by the 19th weekend so we can have a nice Thanksgiving week.

Fellowship of the Woodlands, our church had been praying and thinking of Carlie, so they made a basket with some activities, a stuffed bear and a DVD for Carlie. Mom just said that Carlie was watching the DVD and when the folks on it waved and talked to Carlie, she waved and said hi back to them. It’s the most activity and best response we have seen from her in nearly two weeks, so we thank all of you who were involved in the project, it’s just wonderful!! We pray this is the start of her comeback.

As far as her counts go, she has been making steady progress, but the infection took it’s toll on her Platelets and they are just now starting to hang on. She was receiving transfusions nearly everyday since the fever took hold. She will be on the meds for the infection through all of next week and probably even after we come home to make sure we have it all knocked out… your prayers for her will be greatly appreciated as always.

Love,
The Edgington’s

Saturday, November 5, 2005 9:05 AM CST

It's continued to be a tough week for Carlie. She had another bad night on Wednesday - her temp reached 105.4 - it stayed at the 104.5 - 105.4 range for quite a while. They were giving her tylenol and using a cooling blanket and nothing was working. Although they don't like to give Motrin products to cancer patients (it interferes with their platelet production), they decided to give her a dose since she received platelets that day. After a dose of that, another dose of tylenol, cooling blanket, and cool rags over her body, her temp finally started going down around 3am. They also switched her antibiodics that night to see if she would respond better to that. Her temp started going up again Thursday morning to 101/102 so they gave her more Tylenol - it stayed down most of the day. She also received more platelets and also red blood on Thursday. Late Thursday afternoon the doctor came by and said the blood culture taken on Monday had grown positive for a type of yeast infection in her body. Since this is a type of fungus, they immediately want to remove the central line. So at 8pm Thursday night she went into surgery to have her central line removed. They put an IV in her hand and another one in her foot to use for now. They need to start clearing up the infection before they can put another line in. Right now the plan is to put a PIC line in her arm on Monday and remove the two temporary IV's she is currently using. Since her two transplants are done, there is no need to put in the same type of central line she has been using - a PIC line in her arm should be sufficient and is less invasive to her body. We held a mirror up to her so she could see her line was out of her chest and showed her the two IV's - she asked if she could still ride her bike and also wanted to know if Daddy would help her skate when she got home!

When she got out of surgery and back to her room she did have a temp of 104.5 again, but they gave her Motrin and it went down and stayed normal all day Friday. They have started her on a once a day anti-fungal medicine - which is a harsher medicine and they will need to watch her kidney function closely. After they ID the exact type of yeast infection they will be able to tell us how long she will need to take this medicine - it could be 10 days or longer and it's not a medicine that can be given at home - it's about a 4 hour drip and has 3 premeds that have to be given first. She received platelets again on Friday and will receive them again today. Last night she started in with a temp again of 102.5 and they gave her Tylenol - it never got higher and after giving another dose of Tylenol it eventually went down. She is very tired, grumpy, and agitated... as to be expected with everything she's going through!! She is asking to drink water again and she has not vomited in the last 1-1/2 days. Also, her white blood cell count is going up each day so that is great news and should start helping the healing process of her mouthsores. Hopefully we won't have to give her Motrin again so her platelets can start coming back up.

We ask that you please continue to keep Carlie in your prayers.

Love, The Edgington's

Wednesday, November 2, 2005 12:36 AM CST

Things are going a little more difficult right now for Carlie as well as mom and dad. The mouth soars and mucuscidous have really taken over and Carlie has had fever since Monday afternoon. The fever reached near 104 last night while dad was staying with her and they were both up most of the night with vomiting, constant bathroom trips and ice packs for Carlie's head and neck. This is all part of the process and Carlie is taking it as best as anyone could, but it's still hard for all of us.

Mom came back down this morning with fresh games and the "Big Toy Book" from Toys-r-us. Carlie grabed a pin and started right in to identify all those things that Santa needs to know about. So much for Thanksgiving!! She's getting platletts again today, she also got them Monday and of course all of her counts are at the bottom of the chart.

Although she is in some pain (she's on the morphine drip now), she still wants a daily visit to the playroom and for dad to give her a few horsey rides. Carlie had a great time Monday at the Halloween party on our floor. She dressed up again as Dorothy and got lots of treats while trick-or-treating. Dad was home with Anthony and although the weather didn't really cooperate, they went out trick-or-treating as well. Anthony was a Ninja!!

Hopefully things will be better by the weekend, but we will keep you posted... thanks for all the thoughts and prayers. If you know a "Fever God", please give him a shout too!!!

Love,
The Edgington's

Friday, October 28, 2005 11:08 PM CDT

Hello everyone,

Here's an update on Carlie's week (it's a little long!):

Carlie finished out her total body radiation on Wednesday. We decided it would be best to give her sedation for the last round on Wednesday due to the treatment being a little longer that day because they have to take X-rays when trying to line up the machine to block her lungs - she has to lay still during the time and it takes a bit longer than the other treatments. They had me (Mom) hook up the anesthesia line to her tube - while I was doing that blood started coming out - she had a crack in her line. It was a little scary at first since that is the first time that has happened to her line, but found out it's not unusual and they clamped it quickly, used the other line, and we had it repaired when we got back over to TCH (just a quick 10 minute repair).

Carlie had actually been looking forward to getting her last treatment and ringing that gold bell one more time! I was worried that she would be so out of it that she would not remember. When she started waking up they got her back on the stretcher for the ambulance to take us back - she was very fidgity and wouldn't lay still so they had me lay on it with her. They took us over to the bell and all the nurses/techs were there along with another family that we know from TCH waiting for their treatment - Carlie was still very out of it, so I gently rang the bell for her and everyone clapped and cheered. So, the guys took us and loaded us into the ambulance - they were getting into their seats and then she looked at me and realized we were going back and said "I did not do my radiation". I told her she was already done and that she had fallen asleep. She was very upset saying "But, I didn't ring the bell!!". I knew she wouldn't remember doing it and I could tell she was already more alert, so I made those guys unload us back out of the ambulance and take us back to that bell so she could ring it!! She still wanted me to help her with it, but she rang it and she remembered doing it!! It got a little crazy after that... she had a reaction to the medication they gave her for sedation. By the time we got back to TCH she was screaming, crying, kicking and hitting (me and herself). Jaimie, from ChildLife, came in our room and helped me restrain her so she wouldn't hurt herself - it took almost an hour for her to get through it and calm down. I'm so glad she didn't have to do that for all the treatments!

She had her stem cell transplant Thursday morning about 10:30am. She woke up in a good mood but started getting a little fussy for transplant - she doesn't like the round sticky things they put on her for the heart monitor. She has to stay in her room for 5 hours afterwards for monitoring. The transplant went fine and it's very quick. The benedryl they gave her prior to transplant made her sleep for about two hours. She woke up very cranky and stayed that way all day. Fortunately, she has not been sick to her stomach for the last couple of days so she was really hungry and wanting to eat - but everything she tried tasted bad to her. She wanted to order food in - she IS her Mama's girl - (from Taco Bell, Chick-Fil-A, or Pizza) - but she cannot have food from the outside right now (unless it's prepared by us at home). So I think that added to her agitation yesterday - also I think she was just feeling pretty good and wanted to be out of there - she was bored - we had lots of things to offer her to do, but it just wasn't what she wanted to be doing. Today she did get to play with a couple of other girls - they played ball in the hallway and the older girl took the other two for wagon rides - and they played video games together. That seemed to really perk her up.

Her white blood cell counts are dropping as expected so she will probably start with the mouth sores soon and feeling yucky. Dad is hanging out with her this weekend and when I talked to them earlier she was keeping him pretty busy. She said she was bored and wanted to do something out of the room - I think he was giving her horseback rides up and down the hallway before we spoke. He was hoping she would pass out early so he could rest too! I plan to post a couple of new pictures in the next day or two.

Please keep the prayers coming!! Love, The Edgington's

Monday, October 24, 2005 9:56 AM CDT

Brrrr... pretty chilly morning to be riding in an ambulance at 7am, but that’s what Carlie did this morning. She started her full body irradiation (FBI for short) this morning and did pretty well considering the early time slot. Mom had to wake her up around 6:45am and bundle her up for her transport over to MD Anderson. She got through it alright and it only cost mom a promise to go to the playroom to play video games when they got back to TCH.

Carlie checked in Friday around noon to start the crazy waiting game for a room which came about 9:30pm that evening. Dad stayed with her this weekend so he played games, watched movies and chased Carlie around the hospital floor on a big wheel until they got us checked in. The Chemo didn’t start until 12:30am, but at least it was a short one of only 15 minutes. She had that again Saturday night and last night and that’s it for this round. She does the FBI twice a day, today, tomorrow and Wednesday, and then the Transplant is Thursday morning.

Carlie had a great and busy weekend and I think Dad had to go back to work for some rest. Carlie played hard all weekend and even stayed up to watch our beloved Astros loose a tough one Saturday night. I think Mom got to see some of the 2nd in a tough game series last night, between Carlie playing Barbie Riding Stables. She did well with the Chemo, only getting sick a couple of times so far, but of course the tough part for her is still yet to come. The room is loaded up with all the usual mouth soars medicine and TPN will probably start this week, although Carlie has managed to ear pretty well so far.

TCH will do some activities starting this week/weekend to get ready for Halloween and then they will have a parade and let the kids trick-or-treat on the ward. Hopefully Carlie (Dorothy on that day) will be up to it.

Thanks again for all the thoughts and prayers… have a good week!!!

Love, The Edgingtons

Thursday, October 20, 2005 5:04 PM CDT

Hello everyone,

You can check out some new photos under "view photos".

Carlie has had a great week. She has played very hard this week. We went to the park three times and played with friends and had lunch out a lot (Taco Bell is her new favorite).

Since she will be in the hospital on Halloween our neighbor friends happily agreed to have an early trick or treater last night. She dressed up in her Dorothy costume from Wizard of Oz (see photos) and we took her trick or treating last night - she had a great time and received lots of extra special goodies. Big Brother, Anthony, was a big help in pulling the wagon to load up all the extra things and helping her knock on doors! She was so worn out that she actually asked to go to bed at 8pm.

Big sis, Lexie, is on fall break from school and is coming to spend the night with us tonight!!

We are set to check into the hospital tomorrow, Friday. I just got a call telling us we don't need to come until Noon since a room won't be ready until the afternoon time -we're happy to have a little extra time in the morning since Mom hasn't started packing much yet!! She is set to start 3 days of chemo tomorrow, 3 days of total body radiation Mon/Tue/Wed and then her stem cell transplant on Thursday. We would appreciate your thoughts and prayers for Carlie's upcoming treatment.

Love, The Edgington's

Sunday, October 16, 2005 9:52 PM CDT

Hello everyone,

(You can check out some new photos added to the website.)

Hope everyone is enjoying this awesome weather we have been having here in Texas! Carlie had a great week... she finished up her spot radiation on Friday. She did awesome all week long - laid still for her treatments - just got a little fussy when they wanted to mark on her. She pretty much had the three technician ladies wrapped around her finger by day 2 - they were bringing her candy and sticker surprises each day! On the last day of treatment they have the patient ring a gold bell that they have hanging on the wall.. they open the doors to the waiting area so everybody can hear. The waiting room was full of people and they were all clapping and cheering for Carlie and Mom was trying not to cry!!

She has felt great and played a lot this week. Grandma and Grandpa Shipley came over Friday night to watch Anthony and Carlie while Mom and Dad went to Aunt Susan's 40th Birthday Party!! They spent the night and we all went to Anthony's soccer game on Saturday and then went and spent the rest of the day at Grandma and Grandpa's house on Lake Conroe. Big Sissy, Lexie, came to visit Sunday and Carlie had her playing games and coloring. Then we had friends over to watch the Astros win another game this afternoon!!

This week Carlie goes to clinic on Tuesday for a regular checkup/level checks and then she will check in Friday for her second high dose chemo/stem cell transplant along with 3 days of total body radiation. She will most likely be in the hospital for another 3-5 week stay. So, our plans for this week are for her to be able to play and have some fun before going in again!

Love, The Edgington's

Sunday, October 16, 2005 9:52 PM CDT

Hello everyone,

(You can check out some new photos added to the website.)

Hope everyone is enjoying this awesome weather we have been having here in Texas! Carlie had a great week... she finished up her spot radiation on Friday. She did awesome all week long - laid still for her treatments - just got a little fussy when they wanted to mark on her. She pretty much had the three technician ladies wrapped around her finger by day 2 - they were bringing her candy and sticker surprises each day! On the last day of treatment they have the patient ring a gold bell that they have hanging on the wall.. they open the doors to the waiting area so everybody can hear. The waiting room was full of people and they were all clapping and cheering for Carlie and Mom was trying not to cry!!

She has felt great and played a lot this week. Grandma and Grandpa Shipley came over Friday night to watch Anthony and Carlie while Mom and Dad went to Aunt Susan's 40th Birthday Party!! They spent the night and we all went to Anthony's soccer game on Sunday and then went and spent the rest of the day at Grandma and Grandpa's house on Lake Conroe. Big Sissy, Lexie, came to visit Sunday and Carlie had her playing games and coloring. Then we had friends over to watch the Astros win another game this afternoon!!

This week Carlie goes to clinic on Tuesday for a regular checkup/level checks and then she will check in Friday for her second high dose chemo/stem cell transplant along with 3 days of total body radiation. She will most likely be in the hospital for another 3-5 week stay. So, our plans for this week are for her to be able to play and have some fun before going in again!

Love, The Edgington's

Sunday, October 9, 2005 10:22 PM CDT

Hello everyone,

We have been enjoying this beautiful weather so I've been a little delayed in updating the website. Carlie has done great since coming home from the hospital last week. She finished up her antibiodics tonight, has kept eating well, and has been very active. She had her scan on Thursday and everything remained the same since her last scan and her counts are also still up. She had her first spot radiation on Friday - she did sooo well - she had to lay still for about 40 minutes (the doctor was very impressed!) - the only thing she fussed about is when they drew on her with the marker. They are doing 6 days of radiation (Friday and all this week) on her abdominal/spine area and a small area on her right femur. She was a little sick to her stomach right after we got home but she still wanted to go eat cheese pizza at Chili's like we had already planned... so we did and she ate very well. We went to Anthony's soccer game Saturday morning, a birthday party afterwards, and then enjoyed the rest of the day outside playing with friends. She hung out at home with Daddy on Sunday while Anthony spent the day helping Grandma Martha in her yard and Mom went shopping with friends. As from the beginning... Carlie has just been an amazingly strong, fiesty girl during all of this.. she just keeps doing what she needs to do and at the same time is just being a normal 4 year old girl who likes to play and have some fun!!

Our specific prayer requests for Carlie at this time would be that the radiation does what it is supposed to in shrinking the spots in her spine area and the femur and getting rid of any cancer cells that remain in those areas. As always, we appreciate all your thoughts and prayers. I run into people often who are concerned and ask about our situation and say they will pray for us... I receive notes from so many people stating the same... I just feel like we have an army of people pulling for Carlie and our family. Thank you!

Love, The Edgington's

Wednesday, October 5, 2005 7:47 AM CDT

Hello everyone,

Well, we finally made it home yesterday afternoon... we are happy to finally all be home together - and so is Anthony!! She had another positive culture on Friday and then the cultures starting coming back negative on Saturday, Sunday, and Monday.... thanks for all the prayers!! She has been feeling good, active, and eating! She is now off the TPN as long as I can keep her eating. Her counts have also remained up. We have to finish the last 5 days of antibiodics at home. She has an MIBG scan scheduled for Thursday and I believe she will get to start her 6 day spot radiation on Friday. We had her radiation consultation/simulation at MD Anderson Outpatient Radiation Center on Monday - we got to take a ride in an ambulance over there - she did awesome at her appointment and was able to sit still during her simulation/CAT scan so they did not have to use anesthesia. We have to go to TCH today to get her injection for tomorrow's scan... other than that, we are just taking it easy around the house! Take care.

Love, The Edgington's

Thursday, September 29, 2005 7:40 PM CDT

Hello everyone,

It's been a long week... getting through Hurricane Rita, dealing with power outages, etc. Hope everyone got through the hurricane with minimal damage. We were fine here in The Woodlands and very fortunate to not have any damage but a lot of leaves, limbs, etc. We have been part of the rolling power outages all week so we've been losing our power multiple times every day - today is the first day it's been on all day (so far!!).

Carlie had been doing well all week, counts were up when we were at clinic Tuesday, and she was slowly eating a little more each day. However, Tuesday about midnight I got up to take her to the bathroom and she was very hot. She had a temp of 104 so we took her in to the ER at TCH. As usual it took a while to get through the ER process of checking in, getting a room, drawing blood, starting fluids and antibiodics. Due to her high temp, high heart rate, and low blood pressure they decided to send her to ICU to keep a close watch on her. She was also complaining that her neck was hurting and she was sick to her stomach some. Finally, about 7pm Wednesday night her fever broke and it has remained normal since then. She slept all night and all day yesterday and all morning today. Her heart rate went back to normal as well as blood pressure so they were able to move us out of ICU to the bone marrow transplant floor. Her blood culture did test positive for bacteria. They will keep her on all three antibiodics until they get the bacteria typed and then can narrow down the meds. She had a lot of nausea this morning so they have got her back on some medicine to help with that. She perked up a bit this afternoon and wanted to color and play Nintendo in the room. We even met the actor/comedian Chris Rock on the 8th floor this afternoon - he and his wife were visiting the floor. At a minimum she will be in the hospital through the weekend. Our hope is the antibiodics are working and the remaining cultures will come back negative - she has to have 3 days of negative cultures before she can come back home. They told us there are some instances where the antibiodics don't kill the bacteria in the central line and they have to look at the possibility of replacing the central line. I would ask for your prayers to be that this infection be cleared up quickly without having to replace her line so we can get her over this and back on her treatment schedule. We appreciate your support and concern. Have a great weekend.

Love, The Edgington's

Thursday, September 22, 2005 10:08 PM CDT

Hello everyone,

Just a quick update on Carlie for this week... we are staying at our home to ride out Hurricane Rita! Carlie went to clinic Monday and Wednesday - counts were good, platelets have gone up great on their own - her ANC number had dropped some so they gave her a dose of GCSF to get her white blood cell count going back up and hopefully get us through the weekend with no problems. She is still on a nightly 12 hour TPN. She has started eating a tiny bit each day this week - just a handfull of pretzels or goldfish each day - today she actually ate half of my banana I was eating, some pretzels, and some milk! She has been getting her energy back - rode her scooter several times today and gave us a show of some back flips off the couch (not air bound!) this evening and then requested that we all clap for her!!

I hope everyone fairs well from the hurricane and take care of yourselves and your families. We are praying for everyone's safety.

Love, The Edgington's

Saturday, September 17, 2005 5:43 PM CDT

Hello everyone,

Be sure to check out new photos....

Carlie has been home since Wednesday! Took her to clinic on Friday and her counts are fine. She will probably be on the TPN nutrition through her IV for 1-2 weeks. It runs for 12 hours through the night time. She still has no desire to eat anything yet.. the doctor said this is normal - takes them a while to get their appetite back after this procedure. She has been mostly taking it easy watching TV. We did get her out a bit this morning to watch Anthony's soccer game and she went on the slide and swings at the playground, then went out for a quick lunch afterwards. She will go back to clinic again on Monday to check counts again. I think that is all she will be doing until her bone scan at the end of the month and then I believe radiation will start right after the scan.

Have a great weekend!

Love, The Edgington's

Wednesday, September 14, 2005 2:09 PM CDT

Woo hoo.... Carlie is home!!! We are so excited to be back home today.... she was in 2 days shy of 3 weeks so we are so happy we were on the short end of the expected stay. The only thing she's asked to do so far was to water her plant on the back patio, then wanted to throw some ice into the swimming pool (she played that game with Grandma Martha over the summer), now she's relaxing and watching some cartoons. Her ANC number was up enough so we do not have to do the shots at home (another Woo Hoo!). She will have to do the nutrition through her tubes at night until she decides she's ready to start eating. She will just be at home recouping today and tomorrow and then we go back to clinic on Friday to check her counts.

I'm still amazed every day about all the nice acts of kindness, thoughts, prayers, notes, etc., from so many people. We are so blessed and grateful. Thank you!

Love, The Edgington's

Monday, September 12, 2005 11:40 PM CDT

Hello everyone,

It's very late Monday night but I wanted to write a quick update and let you know the doctor said that Carlie should be able to go home this Wednesday!!! We are all very excited and hope that it really happens that day! They took her off the morphine this past weekend, her mouthsores and sores in her throat have healed, she is still having some nausea. Her counts are starting to come up and she hasn't had a fever in several days - she is starting to drink water but not eating yet. She usually won't start eating again until she gets home. When I got there Sunday to swap out with Mark she had a big smile on her face - which I hadn't seen all week. Thanks for all your thoughts and prayers and we'll give you an update again in the next day or so. Take care.

Love, The Edgington's

Friday, September 9, 2005 9:56 PM CDT

Hello everyone,

Carlie is pretty much doing about the same as earlier this week. Still having nausea, a few nose bleeds and she now has mouth sores which are also in her throat. They started her on low dose morphine for the pain a couple of days ago. The doctors did say everything she is going through is what is to be expected and probably after 2 or 3 more days she will start feeling a lot better. She had a platelet transfusion this morning. She is still trying to make one trip a day to the play room - even if it's just for 10 minutes - she's not going to give up going to that playroom! She got a hold of a Barbie game for the Playstation in her room and she even started playing that last night and today... and she's started bossing Mommy and Daddy around some again, so I know we are about to start on the upside of this stay very soon! She said she's ready to go home and she misses Anthony and Sissy.

We appreciate so much everything that is being done for us... food, errands, lawn, taking care of Anthony, words of encouragement, and your thoughts and prayers for Carlie and our family.

Love, The Edgington's

Tuesday, September 6, 2005 9:09 PM CDT

Hello everyone,

Just a quick update on Carlie since last Friday. She received a platelet transfusion early Sunday morning and a blood transfusion this afternoon. She has still been throwing up some from the chemo so she is having some days where she is feeling a little yucky and just wants to take it easy and watch TV. She has attempted to go to the playroom once a day the last couple of days... but just plays about 15 minutes and is ready to go back to her room or take a rock in the rocking chair... so she really wants to play and hopefully she'll get some energy back in a few days and be ready to do that again! She is getting a lot of different meds right now and thankfully they have all been by IV so she is happy about that. The only thing she is taking by mouth is an oral mouthrinse for mouth sores. She has been so brave and amazing during all of this... we are so proud of her!

Love, The Edgington's

Friday, September 2, 2005 10:30 PM CDT

Hello everyone,

I took Carlie and Anthony to have their pictures taken before Carlie went into the hospital last week... click on View Photos to see a few of them.

Carlie has been doing pretty good the last couple of days. She finished up her chemo on Tuesday. She just took it easy on Wednesday and they also started her on TPN (nutrition through her IV). On Thursday morning they did her stem cell transplant... about 9am or so they started getting her ready - giving her some pre-meds, hooking her up to the monitor, taking temp and blood pressure... she wasn't sure what was going to happen so she was quietly watching TV and asked me (mom) to come lay next to her on her bed. They started the infusion about 10:20am and it was done before 10:30am! The stem cells are in two small bags...they bring them up to the floor in a cooler, thaw them out right outside the room, hang them from her IV pole, hook up to her tubes, and it quickly flows right it and then they flush the line and it's done! They monitored her for 5 hours afterwards so she had to stay hooked up until 3:30pm. Grandma Martha kept us company for the day. After she was unhooked we all went to the playroom and played volleyball with a beachball for quite a while... she even had her nurse playing several rounds with us. She had so much fun she said "this is a wonderful time". She insisted on taking the ball back to her room and we played a few more rounds that night. She was wide awake watching movies and playing with her pony set until about 11:30pm or so... I fell asleep before her! She was very tired this morning and took it easy today - she got a little sick this afternoon and was feeling a little hot and clammy but did not have a fever. Dad and Carlie called me about an hour ago and said she was a little more perky and was playing with some new toys Daddy's work friends sent over...she couldn't wait for Mommy and Anthony to come see them and had some to give to Anthony too. We also found out today that when we have to start the GCSF shots again (next Tuesday) that they give them through the IV when your inpatient for transplant patients.... we were all thrilled to hear that!!!

A couple of days ago, the Bone Marrow Transplant floor that we are on at TCH received two new patients that were currently undergoing treatment in Louisiana and had to be moved due to the hurricane. It was my understanding that those two children had to travel here via helicopter with medical personnel only and their families had to then try and get here. I have not seen or talked with these patients or families, but hope you join me in praying that their families have arrived here safely and I know they will get the best care here as we are also receiving.

Have a happy and safe Labor Day weekend.

Love, The Edgington's

Tuesday, August 30, 2005 5:39 PM CDT

Hello everyone,

Just a quick update on how Carlie is doing since we checked in on Friday. She got sick once on Friday night and once Saturday, but was still in good spirits and played a lot. She felt good most of the day Sunday - her nurse even brought two other nurses in to meet her - said she wanted them to meet "sassy" Miss Carlie (I think that was the term she used - or "spunky" - both apply)! Then she was sick again most of the late afternoon/evening on Sunday. She had a blood transfusion Sunday night which they said is common to need one early on and then probably not again til later in the week or early next week. She had a good day on Monday - no sickness or saying her tummy hurt. We played a lot in the playroom that day... her Childlife pal from clinic, Ms. Lendy, came over for a quick visit and brought a big smile to her face. They increased her fluids last night so she was up every 1-1/2 hours going to the bathroom so, needless to say, we were both tired this morning. Dad got there to swap out with me this morning - she got sick once before I left - and then spent most of the day watching movies and resting. Today is the last day of chemo, Wednesday she will just be on fluids, and then the stemcell transplant will be on Thursday. She hasn't been eating and drinking for the last couple of days so they will probably put her on TPN (nutrition through her IV) soon.

Lexie is back at Baylor and back into her classes and getting her new apartment set up. Anthony seems to be doing well with the schedule, likes school and his teacher/new friends, and started soccer practice last night. We have friends and neighbors taking care of Anthony after school and Mark's co-workers are making dinners for us so we are very well taken care of.

I don't have a computer at the hospital, but Mark or I will try to update the website again in a couple of days. Your heartfelt thoughts and prayers are appreciated.

Love, The Edgington's

Saturday, August 27, 2005 2:31 PM CDT

Hello everyone,

We took Carlie to TCH on Friday morning around 10am to check in to the bone marrow transplant floor for this next phase of treatment. They did her bloodwork, checkup, etc., and we got into our room about 1:30pm. All the doctors, nurses, staff, volunteers, etc., were very nice and welcoming - it made for a good start. There is an organization called His Grace Foundation that sponsors this floor - they are an awesome group. They brought Carlie a new, soft blanket and a big welcome basket filled with all kinds of goodies - art things, movie, books, snacks, flip flops, shirt/hat/socks, disposable camera, puzzles, too many things to list! There were even some goodies for mom and dad - toiletries, phone card, soap/detergent, calendar, etc.... they even gave us a parking pass to cover our entire stay. They also offer other services to the families during our stay. Carlie had a good day going through her basket, playing in the playroom, and playing with the Playstation that is in her room (we are in trouble now that she has her own Playstation assigned to her room!)

I (Charon) left about 5pm to spend the weekend at home with Anthony... I think he's enjoying some one on one time with Mom. They started Carlie's chemo Friday evening. Mark said she got sick one time already but is eating and in good spirits. One of the chemo drugs runs continuously for the first 72 hours. Her chemo will go through Tuesday, Wednesday will be a day off, and then they will do the stem cell transplant on Thursday which is just a half hour infusion. The doctor said to expect mouth sores to probably start around next weekend.

I called just a bit ago to check on her and she was talking to me on the speaker phone and sounded very good and I could hear all the video game noise in the background!

Please keep praying for our baby girl!

Love,
The Edgington's - Mark, Charon, Lexie, Anthony & Carlie

Wednesday, August 24, 2005 7:04 AM CDT

Hello everyone! I had all intentions of updating the website Monday evening or yesterday, but it's been a busy week. Carlie ended up needing platelets again Monday so we didn't get back home until after 7pm Monday. Other than that, all of her other counts were back up. We go again to clinic this morning to check to see if her platelets are going back up and then she will also have an eye exam. Her dental exam went well yesterday.

On Monday they gave us the results of her testing last week. Her pulmonary function test, echo gram, and CAT scan were all fine. Her hearing test shows mild loss in the high frequency range which isn't an issue at this time. Her kidney test numbers dropped a little, but nothing significant... the doctor said they may change up chemo dosage very slightly to accomodate it, but didn't seem very concerned about it at this time. When we did the MIBG scan prior to treatment there was a very small spot on her femur/hip area, that spot is still there but has not grown. The doctor said there were also 3 small spots in her spine area... she does not believe these are new, she said they were probably hidden behind the liver in previous scan - sometimes the organs are lit up brighter on scans and may hide things. She felt if they were new that the other spot would have grown. She said this doesn't change anything, but they will do another scan after she recovers from this first stem cell transplant and if they still show up they will do direct radiation to those spots as well as the original tumor site. She said it was not uncommon to still have small spots going into this phase of the treatment. Of course, we would have liked for those spots to not have shown up at all.

So again we are asking for all your thoughts and prayers for this upcoming treatment that is due to start this Friday, Aug. 26th. It has been so nice reading everyone's messages... we have received so many notes from so many people from different areas of our life.. family, old high school friends, co-workers from current job and previous jobs, church friends, kids' school/activity friends, neighbors, friends of friends, new acquantices, and some that we don't even know. It is very uplifting to read all of these! We appreciate your support.

Love, The Edgington's

Friday, August 19, 2005 10:20 AM CDT

Hello everyone! After a long week, Carlie finally has a day at home today with nothing to do but relax and play. She did an awesome job this week with going to the clinic/hospital everyday having to do multiple tests daily along with a blood transfusion on Monday and platelet transfusion on Wednesday. Her counts are going back up but they are not up enough to stop her GCSF shot just yet. We take her back on Monday to do her level checks again and to go over test results from this past week. Tuesday she will have a dental exam at her dentist in The Woodlands, Wednesday she'll have an eye exam at TCH... hopefully Thursday will be a day at home, and she will check in Friday, Aug. 26. There will be 5 days of high dose chemo first and then she will receive her stem cell transplant... they said it usually takes 10 days to 4 weeks for their system to recover enough to be able to go home. So, she will most likely be in the hospital for 3-5 weeks or possibly longer if there are any additional complications. Then, we have a short time at home and we'll do that whole process over again.

Brother Anthony started 2nd Grade this week and he is doing good, likes his teacher and classmates. Big Sissy, Lexie, went back to Baylor this week and starts classes on Monday.

I took a few pictures of Carlie at clinic the other day while she was playing and hanging out with her favorite pal there - her ChildLife Specialist, Ms. Lendy. I'll try to post a few new pictures today. As always, we appreciate your continued thoughts and prayers for our family. We have a tough 3 months ahead of us and we appreciate all the support from our family and friends... we couldn't do it without you.

Love, The Edgington's

Thursday, August 11, 2005 3:02 PM CDT

Hello everyone,

Hope this finds you all doing well. Carlie got home from her Round 5 of Chemo last Saturday afternoon. We've been to clinic Tuesday and Thursday this week and her counts are dropping as expected to do. She did not get sick from this round but had a few tummy aches and some moodiness. She's been eating and drinking back to normal as soon as she got home... she no longer has any desire to eat or drink anything that comes from that hospital tray!! Even the can of Sprite or carton of milk "is different than ours at home"! Next week will be full of tests.... we will have to take Carlie in each day Monday thru Thursday next week for testing - Kidney test, Cat Scan, Bone Scan, MIBG Scan, Pulmonary Function test, Hearing test, EKO Gram, Dental Eval. and Eye Test. We will also be meeting with the Bone Marrow Team regarding her upcoming high dose chemo along with stem cell transplant. As of right now we are on the schedule to check in for that on Aug. 25 - the expected hospital stay is 3-5 weeks, then there will be a short time at home, and then have to do it all over again.

Please keep our family in your thoughts and prayers. We are praying that Carlie's upcoming tests show no changes in hearing, sight, kidney function, etc., and no new growths on her scans. Take care and have a wonderful weekend.

Love, The Edgington's

Thursday, August 4, 2005 11:35 AM CDT

Dad dropped Carlie and Mom off at TCH this morning to start round 5 of the Chemo and already by 10:30am they have her assigned to a room and getting her orders processed for the meds. She has had a pretty good week since getting back last Friday... the every 8 hours antibiotics didn't seem to slow her down at all and just managed to keep Mom and Dad hoping to keep up with the task... those 1am rounds were the worst. If all goes to plan, she should be out late Saturday and back home to get a week's rest before the barrage of tests that Charon mentioned in her last update.

Although this is all good news, the family did get another blow as Carlie's great grandpa (Papa), passed away this morning after his long battle with Cancer. He was 82 years young and lived a long wonderful life, that he loved and everyone in it as well. He was a great man and we will all miss him dearly.

Again we thank you for all your thoughts, prayers and messages... please add Papa's loved ones to that list over the next few days/weeks as we all cope with the loss.

Sincerely,
The Edgington's

Friday, July 29, 2005 2:39 PM CDT

Well, after a long unexpected week in the hospital we finally made it home earlier today! Carlie has been feeling good for the last several days - we've just been waiting for them to identify the type of bacteria of her infection. They were able to do that yesterday evening so they were able to send us home today. We still have to give her 2 antibiodics every 8 hours for the next 5 days. We will have to administer it through her central line so the home health care company will be out this afternoon with the pump and meds and show us how to do that. Her mouth is all better so we can stop the Thrush medicine and the mouth sore medicine. Her counts are also up so we can stop the GCSF shot until after next round. That is 8 doses of meds/day that we've been giving her for the last 10 days that we can stop... We are all happy about that!!

Since her counts went up yesterday, she finally got to leave her hospital room for the first time - we went to the playroom yesterday morning and then up to the 16th Floor last night to Radio Lollipop (TCH's radio station) - she got to listen to music, do arts and crafts, play foosball and pool with some of the "big kids" - she had a few of those teenage girls wrapped around her finger when she flashed her big dimple smile and those baby blue eyes at them! And they loved her Dora PJ's and Barbie slippers she was wearing. I need to remember to bring my camera next time.

We are hoping to have a relaxing weekend and catch up on some much needed sleep before she goes back next Thursday for Round 5 of chemo. Thank you again for all your support and prayers. We ask that you please continuing praying for Carlie and for her strength and total healing. After Round 5 they will do all sorts of testing again and then we'll be getting ready for the first round of her stem cell transplant along with high dose chemo. Please keep Anthony in your prayers also as this long unplanned trip to the hospital was hard on him also.

Love, The Edgington's

Tuesday, July 26, 2005 10:22 PM CDT

Hello everyone,

Just a quick update on Carlie. She has been without fever since about mid morning on Monday. She does have an infection in her central line so they are treating her with antibiodics. They are trying to identify the type of infection so they can narrow down the antibiodic they are giving her. Once they determine that we should be able to go home and finish out the antibiodic there. Sometimes they say it can take a few days to determine the type and sometimes it starts clearing up before they can even do that. Hopefully, we will go home Wednesday or Thursday at latest. She also had to have another platelet transfusion today. She is feeling much better and played on her computer today, painted a picture, and watched movies. Her thrush and mouth sores seem to be getting better and she is starting to eat a little. She is giving me (Mom) a hard time with taking all the doses of medicines that I've resorted to bribery with nickles, dimes, and quarters! One of the nurses even gave her a dollar so she would let her take her temperature under her tongue vs. under the arm... she was even able to squeeze a dollar out of her Dad for taking her shot tonight without Mom holding her hand. We may have wished we hadn't started that!! Take care.

Love, The Edgington's

Sunday, July 24, 2005 8:37 PM CDT

Well our luck finally ran out and the dreaded fever caught up with Carlie this weekend. She started getting warm on Saturday afternoon while the family were all visiting up at Grandma and Grandpa's house on Lake Conroe. Aunt Debbie and Aunt Vicki were here to help celebrate Grandma's b-day and we were all going out on the boats with friends the Pavetto's and Dave & Jody. It was good while it lasted, but by early evening Mom and Dad were headed to TCH with Carlie to check in for what will most likely be 3 or 4 days.

Agter checking in and getting all the necessary paperwork and vitals taken, Carlie got a room around 3:30am Sunday morning. Mom and Dad both stayed the rest of the night as they were celebrating their 12th wedding aniversary today. Although it was a cute little room with maid-service and breakfast in bed... hotel TCH was not what they had planned for their celebration, but it turned out ok after all.

Carlie's fever has come down some, but still is floating around 101 degrees, so we are hoping to see it break overnight and the medicines do their job for her. She is still fighting the mouth soars, so drinking and eating are still a problem for her as well.

Thank for you thoughts and prayers and please keep them coming for her quick recovery from this (hopefully minor) set-back. Thank you all and we love you all...

M,C,L,A&C

Tuesday, July 19, 2005 10:18 PM CDT

Hello everyone,

Just wanted to give a quick update on Carlie since returning home from hospital Saturday evening. For the most part she is doing well, energy level is good, and she has not been sick. The inside of her mouth has been hurting her so she has not been sleeping well the last few nights. We thought she had mouthsores which can be a side effect of the chemo. After going for her level checks today, the nurse believes she has an infection called Thrush. So... she now has another new medicine to take 4 times a day for 10 days! Of course, she's not thrilled about that. Hopefully, this will take care of the problem quickly. Other than that, everything seems to be going okay.

We've enjoyed visiting with our friends, The Pavetto's, this week.... Carol and the boys even went to clinic with us today and they got to meet all of Carlie's new friends, nurses, childlife specialists... they were quite impressed with how popular and social Carlie is in the clinic! We are also looking forward to Aunt Vicki and Aunt Debbie coming in town this weekend for Grandma Shipley's birthday. Carlie will be going back to clinic on Thursday for level checks again.

Please continue to pray for Carlie that she keeps tolerating the treatment as well as she has, that the treatment is doing what it is supposed to, that her mouth heals quickly, and that she maintains a fighting spirit. I would also ask that you please keep Anthony and Lexie in your prayers as well to keep them strong in dealing with this also.

Love, The Edgington's

Saturday, July 16, 2005 9:17 AM CDT

Good morning everyone... it's Saturday and Carlie will be coming home this afternoon from round 4 of her Chemo. She did fine with this short round as before and has kept mom pretty busy down at TCH. She discovered the library on the 16th floor now and has mom taking her up there at least once a day. She informed dad that he couldn't come pick her up today before she got a chance to go there again.
Anthony got to spend most of Thursday and all day Friday with his friend Trace and they went to Galveston and NASA. He had a blast and won some more stuffed animals for Carlie. This morning he's going to take dad to see Fantastic 4 at the movies... he's already seen it, but is humoring dad!!
John, Carol and the boys arrive this evening from London... we can't wait to see them and visit. We have missed them and are glad to have them back living in the states, even if it's not the right state yet... Texas.

Everyone have a great weekend and we will check in with you later... thanks always for the love, thoughts and prayers. Please say a special prayer for Carlie's great-grandpa... he's back in the hospital fighting his own battle with the Cancer demons and we pray for his quick recovery.

Love to all...
M,C,L,A&C

Tuesday, July 12, 2005 10:19 AM CDT

Hello everyone, We don't have much new to report - which is good news in itself! Thank you all for your continued prayers and support. Carlie and Anthony spent the day Saturday with Grandma Martha while mom went to lunch and shopping with her friend, Brenda. Everybody had a nice day! The kids stayed up a little later to wait for Daddy to get home from Indiana - they were happy to see him and mom was passed out on the couch when he got home! Lexie is also back in town and trying to finish up her summer classes and getting back to her summer job.

Carlie has been feeling good, full of energy, and tormenting/fighting with her brother just as normal! It's nice to have a 5 day stretch without going to clinic or the hospital. We'll go back on Thursday for check in for Round 4 of her chemo. It will be a short stay - should be home Saturday or Sunday. Our friends, the Pavetto's, will be coming for a visit next week between their move from London to Wichita, Kansas - what a change of scenery for them! We are looking forward to seeing their family. Take care.
Love, The Edgington's

Friday, July 8, 2005 2:53 PM CDT

Hello everyone! Carlie is doing well. Our schedule this week changed a bit. We took her to clinic on Tuesday as planned. She needed a blood transfusion but it was so busy due to Monday being a holiday they asked us to come back Wednesday morning to do it. So then they changed our Thursday appointment to today. Everything went fine with the transfusion - it took about 4 hours and she played I Spy on her computer the whole time (she's getting addicted to it!). Went in this morning and her counts are where they need to be so we can stop the daily GCSF shot until after next round.. She was happy about that! They told us to have a good weekend and not to come back until next Thursday when we are due to check in for round 4 of chemo.

Dad is out of town for the night - he went to Indy to be with Lexie for her grandmother's funeral (on her mom's side) and will be flying back home with her tomorrow evening... Lexie has been there for a week - we miss her and are thinking about her during this time. Carlie has been asking to go to Grandma Martha's house for a visit, so we are going to go hang out with her tomorrow. Take care and have a wonderful weekend.

Love, The Edgington's

Monday, July 4, 2005 12:14 AM CDT

Happy 4th of July everyone! Hope everyone is having a safe and fun weekend. Mark upgraded our home computer so I've been off of it for a few days. Carlie did awesome last week... she had a little nausea for a few mornings after we got home and she does get some mood swings, but other than that she was good. Her energy level has remained the same and she's been active. One example of Carlie's fiesty personality combined with her mood swings: Last week she would easily get upset about something or maybe her feelings would get hurt and I would tell her "Sorry, baby" and she told me "Sorry, baby ain't gonna cut it!!" It's hard to decide whether to laugh or tell her that's not a nice way to talk to Mom!

Thanks again for your support of the blood drive. Thursday night, Lexie and some of her friends went with Mark to go make their donations! Last Friday Carlie got to go over her friend Caroline's house to play a bit and see her one last time before she moves back to Tulsa. We will miss her and her family! Carlie's levels should be dropping so she has to have limited visitors. Grandma and Grandpa Shipley babysat Saturday night so we could go to our friends' wedding. We spent Sunday night with them at the lake - went out on the boat last night to watch the fireworks. This morning, Daddy, Anthony and Carlie woke up and went fishing off the dock - Carlie got bored and went to play with her Polly Pockets and then Dad caught a catfish!

Carlie will be going back to clinic this week on Tuesday/Thursday for level checks and possible transfusion if her counts are too low. Thanks for all the love and support.. we enjoy reading all the messages from everyone!

Love, The Edgington's

Tuesday, June 28, 2005 3:10 PM CDT

Great news... everything went well with the 3rd round of Chemo and Carlie and Mom will be on their way home from TCH this afternoon. Carlie maintained her upbeat (bossy) attitude through the whole stay and took on a new sport during this visit. She has started riding big wheels and wagons around the 9th floor and that means Mom and Dad have to chase her with the IV pole. She thinks it's quite amusing to see how fast she can go with us trying to keep up and she also loves to take short cuts and tight squeezes just to see if we can follow her.

Unfortunately she knows with coming up comes the GCSF shots again, but we have gotten a reprieve on the Potassium medicine and at least reduced the dose on her sodium intake. She also has gained back all of her weight from before the surgery and looks much better for it.

She just received a pink Dora baseball cap... something she has been wanting from her wonderful friend Carol... she will be wearing it on her departure this afternoon.

We will probably have a few level checks to get through this week, but hope that we can enjoy the 4th of July weekend without incident... keep your figures crossed please!!

Thanks for all your prayers and for giving blood this week if that's what you are able to do!!!

Love,
M,C,L,A&C

Friday, June 24, 2005 9:36 PM CDT

Hello everyone... we took Carlie in to TCH clinic Thursday morning about 8am.... we finally got checked into a room at 9:30 PM!! It was a long day of waiting for a room, but Carlie was awesome and played great all day. Anthony went to Astroworld with my aunt and then back to her house to swim... he had a great day. Carlie is getting two chemo meds for 5 days this treatment - each one is a one hour drip. She slept right through it last night since they didn't get started until almost 11pm. She seemed to feel fine today so far and played a lot. My friend, Brenda, came to visit and Papa Carruth also came to visit today - both bearing new color/sticker books - which thrilled Carlie (she's getting a little spoiled!). Mark and Anthony came up this evening to visit and Mark is staying with Carlie tonight and I'm back home with Anthony.

It is so nice to see Carlie's strong, outgoing personality back after getting through her initial surgery and treatments. She's been full of energy and she's been amazing. We are praying for her strength and total healing. Your continued thoughts, prayers, and notes are very much appreciated!!

Love, Charon, Mark, Lexie, Anthony, and Carlie

Monday, June 20, 2005 9:29 PM CDT

Carlie had a great weekend. We went and spent the day Saturday with Papa and Grandma Shipley at Lake Conroe... went boating for a while and had lunch on the lake. Went back to their house and Carlie and Anthony played with her new Polly Pockets. Sissy spent the night with us and we had a lazy Father's Day morning Sunday before going to Charon's cousin Ali's house to celebrate the baptism of Ali and Thomas' son Jack. We also enjoyed getting to see Grandma Martha, Catey, Mike and baby Aubrey; Aunt Annette and Uncle Andy, Papa Clark, and Thomas' family. Carlie has been feeling great and full of energy. Mom promised to take Carlie and Anthony to Shipley Donuts Tuesday morning with our neighbor friends so they are looking forward to that tomorrow! We are still set to go to TCH on Thursday to check in for round 3 of chemo.

BLOOD DRIVE INFO:

Interfaith Child Development Center is organizing a blood drive on behalf of Carlie Edgington to replace the blood supply she will be using during her treatments at Texas Children’s Hospital. You do not need to be the same blood type as Carlie to donate. If you wish to donate, following is the scheduled dates/times:

Tuesday, June 28 12noon – 8pm Woodlands Blood Donor Center
Tuesday, June 28 1pm – 4pm Interfaith School Parking Lot
Wednesday, June 29 10am – 6pm Woodlands Blood Donor Center
Thursday, June 30 12noon – 8pm Woodlands Blood Donor Center


Please call Interfaith Child Dev. Center at 281-292-3617 to schedule an appointment (for either location).

The Woodlands Blood Donor Center is located at 3091 College Park Dr.(SH242), Suite 130.

Interfaith Child Dev. Center is located at 5630 Rush Haven Drive.

Thank you to anyone who wants to give and if you are our friends at HP, the HP Blood Drive is this week and if you want to donate in Carlie's name, that would be great too. The coordinators know about it and you just have to give her name to them.

Thanks for you love and prayers... The Edgington's

Wednesday, June 15, 2005 5:31 PM CDT

We took Carlie to clinic today to have her levels checked. Everything was good and we are able to stop the daily GCSF injection until after next round of chemo... She was happy about that! Her platelets are still low, but those are usually the last thing to come back up. The plan is to go back Monday to have that checked again and then go back the following Thursday to check in for round 3 of chemo - this will be another 5 day round of chemo. She is in good spirits and has lots of energy and still wants to argue with her brother!! Hopefully we'll get to go boating for a bit this weekend.

BLOOD DRIVE INFO:

Interfaith Child Development Center is organizing a blood drive on behalf of Carlie Edgington to replace the blood supply she will be using during her treatments at Texas Children’s Hospital. You do not need to be the same blood type as Carlie to donate. If you wish to donate, following is the scheduled dates/times:

Tuesday, June 28 12noon – 8pm Woodlands Blood Donor Center

Tuesday, June 28 1pm – 4pm Interfaith School Parking Lot

Wednesday, June 29 10am – 6pm Woodlands Blood Donor Center

Thursday, June 30 12noon – 8pm Woodlands Blood Donor Center


Please call Interfaith Child Dev. Center at 281-292-3617 to schedule an appointment (for either location).

The Woodlands Blood Donor Center is located at 3091 College Park Dr.(SH242), Suite 130.

Interfaith Child Dev. Center is located at 5630 Rush Haven Drive.

Thank you to anyone who wants to give and if you are our friends at HP, the HP Blood Drive is this week and if you want to donate in Carlie's name, that would be great too. The coordinators know about it and you just have to give her name to them.

Thanks for you love and prayers... The Edgington's

Tuesday, June 14, 2005 7:51 AM CDT

Hurray... we were able to do Carlie's stem cell harvest yesterday and we got the call last night that it was very successful and we got everything we needed in the first try. Carlie was super during the whole thing and kept the doctors and nurses all entertained with her many faces, sticker books and coloring them pictures. It took about 4 hours once we started the process and Carlie had to stay in a specail chair hooked up to the machine the whole time... what a tropper!!

She goes back to TCH Wednesday to check her levels in hope that we can stop the dreaded GCSF shots... I know that will make both Carlie and Daddy happy.

Carlie has started administering her own medicine now... she gives herself her daily dose of Sodium, Potassium and the Bactrim on the weekends, and Mom made her a chart where she gets to cross them off throughout the day as she does them. It's really helped us all.


Interfaith Child Development Center is organizing a blood drive on behalf of Carlie Edgington to replace the blood supply she will be using during her treatments at Texas Children’s Hospital. You do not need to be the same blood type as Carlie to donate. If you wish to donate, following is the scheduled dates/times:

Tuesday, June 28 12noon – 8pm Woodlands Blood Donor Center

Tuesday, June 28 1pm – 4pm Interfaith School Parking Lot

Wednesday, June 29 10am – 6pm Woodlands Blood Donor Center

Thursday, June 30 12noon – 8pm Woodlands Blood Donor Center


Please call Interfaith Child Dev. Center at 281-292-3617 to schedule an appointment (for either location).

The Woodlands Blood Donor Center is located at 3091 College Park Dr.(SH242), Suite 130.

Interfaith Child Dev. Center is located at 5630 Rush Haven Drive.

Thank you to anyone who wants to give and if you are our friends at HP, the HP Blood Drive is this week and if you want to donate in Carlie's name, that would be great too. The coordinators know about it and you just have to give her name to them.

Thanks for you love and prayers...

Love,
M,C,L,A&C

Friday, June 10, 2005 12:25 AM CDT

So Carlie is at TCH today for level checks and a blood transfussion and we are still on track for the stem cell harvest on Mnoday. Her levels are down pretty low, so we will be keeping her pretty issolated this weekend to make sure she stays ready for next week.
She's in good spirits and has been doing all of the procedures we have to do to her on a daily basis to her doll... the doll has a Central Line now, gets her tubes flushed and last night Carlie made daddy give her doll a shot. Sorry Lexie, but she named her doll Sissy after you, so I guess she wants you to share in the fun.

As promised, here is the info for the upcoming Blood Drive.

Interfaith Child Development Center is organizing a blood drive on behalf of Carlie Edgington to replace the blood supply she will be using during her treatments at Texas Children’s Hospital. You do not need to be the same blood type as Carlie to donate. If you wish to donate, following is the scheduled dates/times:

Tuesday, June 28 12noon – 8pm Woodlands Blood Donor Center

Tuesday, June 28 1pm – 4pm Interfaith School Parking Lot

Wednesday, June 29 10am – 6pm Woodlands Blood Donor Center

Thursday, June 30 12noon – 8pm Woodlands Blood Donor Center


Please call Interfaith Child Dev. Center at 281-292-3617 to schedule an appointment (for either location).

The Woodlands Blood Donor Center is located at 3091 College Park Dr.(SH242), Suite 130.

Interfaith Child Dev. Center is located at 5630 Rush Haven Drive.

Thank you to anyone who wants to give and if you are our friends at HP, the HP Blood Drive is next week and if you want to donate in Carlie's name, that would be great too. The coordinators know about it and you just have to give her name to them.

That's it for now... everyone have a great weekend.

Love,
M,C,L,A&C

Wednesday, June 8, 2005 10:13 AM CDT

So not too much to update other than Carlie had her blood work done yesterday and everything is where it should be. We are just hoping that she doesn't bottom out too much this time and we get another fever visit to the hospital over the weekend... only time will tell.

Carlie's appetite is still strong, although altered somewhat. Her new favorite foods are ham and cheese... thin sliced pieces of ham along with marbled colby and jack cheese. She wants it all day long now... but as long as she's eating, who cares.

She goes back again for more blood work tomorrow and Friday and we hope we stay on track for the stem cell harvest on next Monday... keep your fingers crossed.

The folks at Interfaith have helped to set up a blood drive in The Woodlands area where we live... it's planned for the end of June and we will put the details out before the end of this week.

In the mean time... thanks for the thoughts and prayers...

Love, M,C,L,A&C

Sunday, June 5, 2005 12:36 AM CDT

Hello everyone... Carlie's counts were fine last Thursday and we were able to get into a room by 1pm and started round 2 of chemo that afternoon. She is starting to warm up a little more to the doctors and nurses - she even cracks a little smile every now and then to them. This cycle was a 2-day chemo and so we were back home by Saturday late afternoon. She is feeling a little yucky, but doing pretty good. We were out on the driveway blowing bubbles at 8am this morning with our neighbors Dylan and Morgan! We have outpatient visits to the clinic this week to check her levels. Big Brother, Anthony, stayed with his friend Trace this weekend and they are going to today's Astros game - sitting behind home plate! Big Sissy, Lexie, is coming by for a visit today!

Ms. Rosemary at Interfaith Child Development Center (Carlie's preschool)is scheduling a blood drive later this month in case anyone would like to donate to replace the blood Carlie will be using during her treatment. You do not have to be the same blood type as Carlie to donate. We will put the detailed information on the blood drive on this website soon. Or if you are donating blood at any other location and wish to cover Carlie, you can tell them you are donating for replacement on Carlie Edgington's behalf at Texas Children's Hospital.
Again, our thanks to everyone for their support, love, and well wishes. We have been receiving notes from so many people and reading them all!

Love, The Edgington's

Tuesday, May 31, 2005 2:28 PM CDT

Wow... where did the weekend go? It was quick, but it was also very fun for Carlie and the whole family. The weather cooperated and we got to spend Saturday and Sunday at Mark's parents' up on Lake Conroe. Carlie rode in the boat, fished and worked on several craft projects. At one point she had her Sissy and two of Lexie's friends all coloring Barbie pictures at the kitchen table.

She helped Daddy drive the boat and pulled her big brother around the lake on a tube as well as Sissy and five of her girlfriends. (Thanks to all you girls for making it a special day for Carlie!!)

Carlie has started wearing some of her hats... see the updated photos for her new look... and she even had on her bathing suit for awhile.

Yesterday Carlie's Grandma Martha came over, along with Aunt Catie, Uncle Mike and baby Aubrey. We all had lunch and watched Anthony and Carlie play with Anthony's new driveway tennis game. Carlie is a real natural!!

Thursday we go back in for what should be the start of round two of Chemo... we will know after they check levels in the morning, but if things continued to progress since last week, we should only be worrying about getting a bed to get the process started.

Thanks for all the continued love, support and food!!!

Love,
M,C,L,A&C

Thursday, May 26, 2005 7:44 PM CDT

So a little more good news from today's visit to TCH... Carlie's levels are coming back up and daddy doesn't have to give her the daily GCSF shot until after the next round of Chemo. Carlie was happy to hear that, but so was daddy as he hates being the bad guy giving "the pinch" to Carlie. The nurses told us to go have a good holiday weekend and they would see us next Thursday June 2nd to start (hopefully) round two of the Chemo.

The tests that Carlie went through yesterday and today didn't go quite that smoothly though... Carlie didn't care for them and was very upset during them and consequently we will be doing them again in the future...hopefully that will go better too.

Dad gave Carlie a haircut last night as the rats nest had gone quite out of control. She's losing it pretty fast now, so it won't be long and she won't have to worry about tangles. Mom and Carlie are trying on several hats to be ready for when the process is through... we received some lovely hats from Interfaith and mommy's friend Rhonda for Carlie to wear over the next several months until her hair grows back. I think she's hoping it will grow back more like mommy's and less like daddy's!!

Everyone have a safe and happy holiday weekend... thanks again for your thought, prayers and good wishes...

Love,
M,C,L,A&C

Thursday, May 26, 2005 4:19 PM CDT

Today we went to TCH clinic to have Carlie's blood work checked out. Her numbers were up so they told us to go have a good, "normal", holiday weekend with friends and family. As of right now, we don't have to go back until next Thursday. If all her counts are right that day, we will check in for the next round of chemo - we should be in the hospital for about 3 days then. Carlie got up a little early this morning and we were gone all morning until about 1:30pm this afternoon, so she's a little tired and fussy - wearing mom out a bit! Hopefully, she'll have a good nights sleep and be ready for visiting on Lake Conroe with her Aunt Debbie and Uncle Mike from Indy and with Papa and Grandma Shipley and big sis Lexie - along with Mom, Dad, and Anthony. Have a nice Memorial Day weekend!

Love, The Edgington's

Thursday, May 26, 2005 4:16 PM CDT

So a little more good news from today's visit to TCH... Carlie's levels are coming back up and daddy doesn't have to give her the daily GCSF shot until after the next round of Chemo. Carlie was happy to hear that, but so was daddy as he hates being the bad guy giving "the pinch" to Carlie. The nurses told us to go have a good holiday weekend and they would see us next Thursday June 2nd to start (hopefully) round two of the Chemo.

The tests that Carlie went through yesterday and today didn't go quite that smoothly though... Carlie didn't care for them and was very upset during them and consequently we will be doing them again in the future...hopefully that will go better too.

Dad gave Carlie a haircut last night as the rats nest had gone quite out of control. She's losing it pretty fast now, so it won't be long and she won't have to worry about tangles. Mom and Carlie are trying on several hats to be ready for when the process is through... we received some lovely hats from Interfaith and mommy's friend Rhonda for Carlie to wear over the next several months until her hair grows back. I think she's hoping it will grow back more like mommy's and less like daddy's!!

Everyone have a safe and happy holiday weekend... thanks again for your thought, prayers and good wishes...

Love,
M,C,L,A&C

Wednesday, May 25, 2005 7:36 AM CDT

Just a quick note to let you know what a great day Carlie had yesterday. She was in great spirits. She ate really good and hasn't gotten sick in the last three days. She still puts up a fight with all the medicines she has to take! She did more than watch cartoons... played with dress up dolls, colored, books, and made two bracelets - one for her and one for mommy! We even spent a little time outside - she wanted to hit a few balls with her new teeball set she got for her birthday from our good friends Randy, Alison, Morgan and Dylan. She was worn out after that and had to sit in her pink chair and eat some cheetos! Today and tomorrow she has some outpatient appointments at TCH but we are still hoping that she stays feeling well and can have a good holiday weekend at home. Everyone have a happy and safe Memorial Day!

Love, The Edgington's

Tuesday, May 24, 2005 9:48 AM CDT

So some good news came our way yesterday evening... Carlie got to come home. She had to have both a blood and platelet transfusion yesterday before they would let her go, but she did fine with both. She's tired, but glad to be sleeping in her bed at home.

If things stay on track at this point and we don't have anymore fevers, then we should be home until June 2nd when the next Chemo round starts. We did find out that this session is only 3 days vs. 6 days last time... that will hopefully be easier on all of us.

Mark's sister Debbie and husband Mike will be coming in for the long weekend and we hope to spend time at Mark's Mom's house up on Lake Conroe and watch the Indy 500 on Sunday... we are from Indianapolis ya know??!! :o)

Thanks again for the lovely messages and prayers... we hear them and we think they working.

Love,
M,C,L,A&C

Sunday, May 22, 2005 8:21 PM CDT

Sorry that it's taken us so long to update the site... we have had a busy weekend. Carlie spiked a fever late Friday afternoon and that sent her back into the hospital that evening. We finally got a room about 1am and Carlie and Mom finally got some sleep. She's on fluid drip and anti-biotics and her fever has been down since Saturday afternoon.

She's in pretty good spirits, but until her levels come up and she starts eating and drinking some more on her own, she has to stay in the hospital. We are hopeful that she will be home tomorrow night or at least Tuesday morning.

Anthony and dad got some needed things done around the house and they got to put the boat in the water for the first time with their friends Dave and John. Anthony did some fishing and almost caught a big one. Mom's friend Jody and Grandma Martha spent the day yesterday with Carlie and kept her in good company.

Carlie has another test this Thursday, but hopefully will be home for the holiday weekend... I know she and her whole family are looking forward to it.

That's it for now... thanks for the calls, notes and letters.

M,C,L,A&C

Wednesday, May 18, 2005 3:41 PM CDT

Hello everyone,

Just wanted to give a quick update on Carlie since we've been home. She's doing well and has not had a lot of sickness. She is watching a lot of cartoons and occasionally wants to play with all the new cool things she has received... puzzles, art projects, dolls, etc. She is eating, drinking, and sleeping good. She is still trying to get used to this whole new routine of medicines, etc., but is being a brave girl. Can't seem to get her out of her PJ's - finally had to pry the pink Dora PJ's off of her today! We went outside for a few minutes yesterday so she could see her friends on the street. Mommy's friend, Karen, spent the day with us yesterday and we had fun playing some games together and Karen finished knitting her a special purple blanket. Big brother Anthony seems to be doing better since we are all home together for now. Again, thanks for all the notes, prayers, gifts, etc... we appreciate everything and all of your support!

Love, The Edgington's

Monday, May 16, 2005 8:54 AM CDT

Hi everyone... sorry so long till an update, but things have been pretty busy. Carlie is home now, got home Sunday evening and very happy to be there I might add and so is her family. She did very well with her first Chemo session, only getting sick a few times and in pretty good spirits thoughout... at least when she was inbetween drips. Mom and Dad aren't thrilled about the daily shots we have to give Carlie now that we are home, but it's probably harder on us than it is on her. It's a good thing we have computers to keep up with the schedule and medication regiment... what did we do before we had them?

Anthony had a great B-day party on Friday, mom and big sis Lexie went with him to Pump-it-up and he had a blast. Dad and uncle Dave (Lear) took him to grandma and granpa's on Saturday and we went boating and out for dinner and ice -cream.

Carlie will be home with only out-patient visits to check levels until June 2nd and then we go back in for round two. She will be weak the next few days and maybe longer, but she is showing a few smiles and bossing her big brother around already from the couch.
Carlie & Anthony's Aunt Debbie and Uncle Mike from Indiana are going to come visit her over the Memorial Day weekend, we hope her strength will be back and we can have a nice weekend before we go back in the hospital.

The outpouring of support, letters, gifts and messages on the webpage have continued and we are forever grateful. Some of the neighbors have set us up for dinners at home so that Charon doesn't have to bother with it while she is taking care of Carlie this week. That's very much appreciated as well. Thank you all for your thoughts and prayers... we feel you out there.

Love,
M,C,L,A&C

Thursday, May 12, 2005 11:23 PM CDT

Well we just finished day three of our first five day Chemo set and so far so good. Although our sweet, precious, little girl dissappears for a few hours each day when she goes through the treatment, she has yet to become sick from it. (knock on wood here) She is less tolerable of the nurses when they keep bringing new doses of drugs and treatments, but thank God they understand and never seem to mind.

Mark was able to sneak into work for a few hours yesterday for the first time in weeks and it seemed very weird to be away from the hospital for awhile. Charon is home tonight taking care of Anthony and getting things ready for his B-day party Friday evening. He is very excited and doing better with trying to understand where Mom, Dad and sister Carlie are again. He is quite a great "big brother" through all of this!!

If things stay on plan, we should finish this round Saturday and be able to come home for a couple of weeks starting Sunday afternoon. We continue to pray that the drugs are doing what they are supposed to and don't do what they are sometimes known to do... I'm sure Carlie hopes that as well.

We continue to be amazed with the outpouring of messages and support from the letters in the guestbook. Charon and I read them all everyday and read them to Carlie too! Thank you sooo much...

Love,
M,C,L,A&C

Tuesday, May 10, 2005 10:03 PM CDT

So after a couple of really great days at home this weekend, Carlie is back in the hospital today to start her Chemotherapy treatments. We met with her doctors this morning to review all the tests from the past several days and we now have a final diagnosis and treatment plan.

Carlie has been diagnosed with a Neuroblastoma tumor that had grown onto her right kidney (which was removed on April 29th) and onto a small portion of her liver and diaphragm. The tumor was about 11cm long and weighed about 2lbs. She has recovered very well from the surgery and has been in great spirits leading into this treatment session. (See the latest photos from her new digs!)

The treatment plan will be long and harsh… she will have bad days where she will feel very weak and sick, but we are sure she will come back strong each and every cycle that we go through. The first part of her treatment will take approximately 15 weeks and that will lead into the next phase that will last about 12 weeks. That will get us through to the Thanksgiving holiday at which time we hope that she will be at a point where she will get a 30day rest period before we start the last 6 month stretch. That will be nice for Christmas!

I know this may come as a shock to some of you as you were hearing and reading good news prior to now, but this is what we were waiting for… the final diagnosis and recommendation for treatment. We now have that and so we are letting you all know. It’s tough to take for you as it is for us, but the Lord teaches us to face the devil straight on and He will guide us through and that’s what we are going to do.

The Doctors and Nurses are helping us to understand as well as treat Carlie and they are truly God’s workers. Thank you for your continued prayers and please include the staff as they bring Carlie through this process. If all goes as planned, we will be back home next Monday and start the recovery process from the Chemo.

One last note… although if you are reading this you undoubtedly understand what we are talking about even though we haven’t used the “C” word. At this time we are refraining from that reference as it’s not something we want to use yet with our son Anthony. He is trying his best to understand why his beloved little sister and favorite person to tease is not home with him again. That’s enough for him to deal with at this time and we will work him into the rest of it on our/his schedule. We hope you all will understand and respect that point and be careful if you are around him when discussing Carlie.

That’s it for tonight… we feel your support and thank you for it…

M,C,L,A&C

Sunday, May 8, 2005 9:21 PM CDT

Wow... now that was a birthday party!! Carlie had a great day and had family and friends stop by for a visit throughout the day. She got lots of presents and had a delicious ice-cream cake with pink icing and a big #4 on it. All morning she said she was still 3 years old, and as soon as we sang happy birthday to her, she said she was officially 4 years old now.

Mom had a great Mother's Day too... a treat to be home with her kids. Sissy (Lexie) is back from Baylor and was here too. Both Grandmas were here and they had a good Mom's day too.

We go in bright and early to TCH for our test and hope to be back by the time Anthony gets home from school... we will touch base with you all then.

Thanks for all the beautiful notes...

Love, M,C,L,A & C

Saturday, May 7, 2005 9:30 AM CDT

Well we are home today... and Carlie is in her favorite chair watching Saturday morning cartoons. Seems like it was all just a bad dream, but then we remember that we are already awake. The hospital released us last night and we got to come home and sleep in our own beds... it was great and Carlie slept straight through... as did Mom and Dad :o)

We finished the bone scan and bone marrow tests yesterday and we will know the results when we go in on Tuesday. Monday we go in for a GFR, a test to see how well Carlie's remaining kidney functions and her ability to take on the upcoming treatments. It's out-patient, so we will be back home Monday night again.

We have a nurse coming by in a while to check Carlie's central line catheter... the method we will use for administering her medications and treatments. Right now Carlie is digging through the countless bags of "stuff" we brought home from the hospital... all the gifts and toys, books and crafts... it's turly amazing the outpouring of love you all showed while she was in the hospital.

For Mark's work friends... we understand his office is full of love as well and he hopes to be able to return soon to get some work done and bring home the goodies to Carlie.

We plan to celebrate Carlie's B-day tomorrow... it is actually tomorrow on Mother's day, so that will be a treat for all of us. It's nice to be home, even though it's only for a short while, but for now we will take it.

Thanks again for all the lovely notes and wishes and all the prayers...

M,C,L,A & C

Friday, May 6, 2005 7:44 AM CDT

So Carlie had a good night last night and slept all the way through until the parade of doctors and nurses started about 4:30am this morning. She's watching Elmo, Cookie Monster and the rest of the gang in her bed, waiting for our trip to the OR for her next test procedure. That should be around 10:30am this morning.

Yesterday was a busy day for her as she completed a bone scan test and had some visitors, played in the play room, made crafts with her dad and watched a few movies. She was even able to catch the last few minutes of Survivor so she knew who got kicked off the island. (I think that was just so she could tell Mom!)

The Doctors did tell us we could go home for the weekend, but we will be back here on Monday and probably for another week after that. We hope to normalize Carlie with her brother Anthony and her big Sissy, Lexie and celebrate Carlie's B-day on Sunday... which falls on Mother's Day this year too. What a great gift for Mom!!

Sissy is coming home from her first year at Baylor Saturday, so they are both anxious to see each other and we will be glad to have her home for the summer too.

Thanks for all your messages and prayers... we are reading them all and Carlie is so blessed to have so many people thinking of her. That's it for now...

M,C,L,A & C
(Mark,Charon,Lexie,Anthony and of course Carlie)

Thursday, May 5, 2005 10:46 AM CDT

So we decided to start a web page for Carlie since the outpouring of questions and concerns have overwhelmed us. We can't tell you how much we appreciate all the prayers, well wishes, flowers, balloons, stuffed animals, etc. that we have received over the past 10 days.

Carlie is doing well and recovering from her surgery last Friday where her right kidney was removed. She is up walking around, eating pretty well and coloring up a storm in all the great coloring books she has received. She spends lots of time on the couch with me and mom and a lot less time in the bed these days.

The early information that it was a Wilm's tumor was not correct... they warned us that nothing was certain until the Pathology report came through and we got that yesterday. So... back to the drawing board with more tests and we hope to know more by this weekend.

If things go well, we should get to come home this weekend for a visit, but will need to be back here Monday for more tests and starting the treatment.

Again... we appreciate all the calls, emails, etc. from everyone, sharing their concerns, offering to help in countless ways and for that we are eternally greatful. However, with Carlie's current condition, visitors will not be a luxury we can afford with the concern of infection under her treatment. I trust you will all understand and respect our concern.

There is a guestbook that you can sign and leave messages, etc. on the web page and we will try to check it daily and read the notes to Carlie. This should help you all stay informed and give the family a little break as well. We hope you understand and respect that perspective as well.

Thank you for you support and understand...

Mark, Charon, Lexie, Anthony and of course Carlie!!

Thursday, May 5, 2005 10:09 AM CDT

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