History

Friday, December 30, 2005 4:20 PM CST

I forgot to update yesterday. Yesterday was the anniversary of Caroline going to the hospital to begin her first stem cell transplant. This was the one where she had to have 4 baths daily to take care of the chemo that could burn her skin. She developed the best tan that lasted through the summer due to that chemo. Jan. 4th is the anniversary of her first Stem Cell transplant. That is technically considered a new birth, since it is a replacement of her cells that create her blood. Of course, she had those replaced when she had her second transplant in February. Her immune system is still not at 100nd we still have to have all of her immunizations redone.

We found out today that her CT will be done on February 28. This will be done to recheck her spot that appeared on her last CT on her right lower lung. We are hoping that is was some sort of anomaly and will not be there when we go back. Make sure that you continue praying that this goes away. I am not sure what steps would be next if it turns out to be something we don't want. But I have faith that things will be good. We must believe.

Yesterday, we cleaned up the girls' room and emptied out a box that was left from last year's packing up. Katherine found some money that was given to her and we still have other boxes downstairs waiting to be opened.

The girls have been playing together today while Nancy went to the Mall to exchange some gifts. The girls really enjoyed the movie on Wednesday and they have been playing the soundtrack today. Caroline even bought a new lion and named him Aslan.

Don't forget to watch Channel 11 (NBC) on Sunday afternoon. The Brian Boitano Skating Spectacular will be on at 4 pm. This is what Nancy and Caroline went to Las Vegas for. They filmed the girls skating with the skaters on that Friday, so it is possible that you may see Caroline on TV (no promises).

Continue to pray.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, December 27, 2005 10:06 PM CST

Well, Christmas has come and gone. We have had a wonderful Christmas this year. The girls are not lacking for things. Both of the girls seem very pleased with their gifts. We have been taking it easy the last few days since Christmas. Today, we met up with some of my college friends and ate together at the Lazy Donkey in Carrollton. Donna Lichtenwalner and her husband and three boys were down from North Carolina and also Renae Kiger and her daughter were also here. We try to get together as much as possible. We last were together as a group a couple of weeks before Caroline was diagnosed with Cancer in 2004. Our friend who is always missing from this group is Jon Usher, who is flying for FedEx. We were all pretty tight back 19 years + ago.

We are taking the girls to see "The Chronicles of Narnia" tomorrow. Katherine and I went to see the movie the day Nancy and Caroline came back from Las Vegas. Nancy and Caroline want to see it. It will also be a good time for me to spend some of my gift cards at the mall.

The girls will be off from school for another week or so, while I go back to work on Monday, Jan. 2. I don't know how I am going to watch football games in my office. I guess I will have to TIVO them.

Thanks to all of the prayers for Caroline and our family this past year. Continue to pray for her as we have to have 3 teeth pulled on Jan. 11 and we still have to have new scans done in a few weeks to check the spot that was on the last CT scan. Pray that it will be gone.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, December 22, 2005 10:46 PM CST

Please note the new picture at the top of the page. This is Caroline's friend, Kimi, from the Las Vegas trip. She and Caroline hit it up big and even though she is 14, they were best buds on the trip.

We just got home from the Thrasher's game. Boy was it exciting. A big thanks to Kristin Conner and Curesearch for the free tickets. The girls had a great time and they now are budding hockey fans. The seats were great and the only thing that could have made it a better night would have been if they had won (they lost in a shoot out). Katherine now wants a jersey to wear. I guess that will have to wait till after Christmas.

I was thinking today how this Christmas will be so much better than last year. In addition to having Caroline here another year, we will not be in a rush to play with everything in a day or two like last year. We went in the hospital 2 or 3 days after Christmas for Caroline's first stem cell transplant.

We are off to my parents for Christmas eve, before we return home for Christmas at home. We will have Christmas with Nancy's family on Christmas evening.

Again, our best wishes for you and your family. Thank you for all of your prayers this year.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, December 20, 2005 10:00 PM CST

We hope that you are enjoying this Christmas season. I apologize for not updating since Saturday. Caroline and Nancy got home on Sunday night at about 6:30. They had a wonderful time and Caroline got to do some amazing things. She met and befriended a 14 year old girl from Ellaville, Georgia named Kimmy. Nancy said that Caroline was a cut-up the whole time. They said that the skating show was great and it will be on NBC TV on New Years Day from 1 to 3 pm. The day that Caroline got to skate with the skaters on Friday was filmed and we guess that there will be something about this on the telecast. So, make sure you watch the show that day (no big football games that day). I am going to try to get a picture up on the web tomorrow.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, December 17, 2005 10:38 PM CST

Caroline and Nancy are still in Las Vegas and should be back in Atlanta sometime after 6:30 tomorrow night. As I am writing this, they should be attending the Brian Boitano Skating Spectacular at the Mandalay Bay Resort. I spoke with Nancy and Caroline earlier today and Nancy said that Caroline was having a wonderful time. She has made friends with all of the other girls that are on the trip and she mentioned one girl who was her special friend and she is 14. The girls on the trip range in age from 7 to 14. They have been taken all around town and shown a lot of different sites. I know that they saw the white tigers and dolphins at the Mirage Hotel on Friday and they went to Hard Rock Cafe last night. This morning they went to Madame Tousaud (sp.) Wax Museum and then to the largest M & M Store. The last two nights, Caroline has fallen asleep at dinner due to being so tired. This afternoon, they did not have anything, so Nancy was going to let Caroline take a nap. That way she would hopefully not fall asleep during the show. Yesterday, they also got the opportunity to watch the practice for tonight's show and also got to skate with some of the skaters. Caroline skated with Nancy Kerrigan (Olympic Silver Medalist, Tonya Harding's nemesis) and with one other former Olympic skater. Caroline enjoyed it, but would not let go of their hands though. Today, Katherine went with her friends to the Mall and I stayed at home to wash some clothes and straighten up the house a little. I have had ball games to announce at Temple High, both last night and tonight. We will both be glad when the rest of the family comes home. After church tomorrow, I am taking Katherine to go see the "Chronicles of Narnia" movie, before we pick up the girls. I hope each of you have a Merry Christmas. I hope to put up some new pictures from Caroline's trip soon.

Charles and Katherine (Nancy and Sweet Caroline in absentia)

Thursday, December 15, 2005 12:05 AM CST

Just a quick note about Caroline. Erika, Dr. George's nurse, called yesterday and told us of an area of concern on her CT scan from last week. He found a small area on the lower part of her right lung that appeared that it could be a nodule, but not sure. He wants to do a scan in 6 to 8 weeks to re-examine the area to see if it goes away. Please be in prayer that it is not the cancer coming back. We are going to have faith that God will take care of it. Otherwise, Caroline's doing great. They are on a plane right now (I hope) flying to Las Vegas. Her and her mother are guests of AFLAC for the Brian Boitano Skating Spectacular Saturday night. There were 10 girl cancer patients and a parent chosen to go. Katherine and I are staying at home. Be in prayer for me (keeping up with a 12 year old) in watching over her for 4 days. Also, pray for Caroline in that she decided that she didn't want to go (wanted to know how she was chosen since she did not raise her hand). I am sure she will have a good time.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, December 10, 2005 6:50 AM CST

We had a good visit to the Dr.'s office yesterday, except that we didn't get to see our doctor. Dr. George was supposed to meet with us, but got called to a meeting. We saw the PA (Physician's Asst.). She checked Caroline out and said that she looked good. She told us that the bone scan and MIBG both came back negative. She said that was the report from the Radiologist, but Dr. George would also review them and double check. She told us that the CT had not come back and that we should hear from that soon. I don't understand why they didn't have those results since that was on the same day that the bone scan was taken. We talked about some of the pains that Caroline keeps experiencing, such as pains in her knees and a constant stomach ache. She said that she did not feel any mass in her stomach, but that Caroline's insides did not match what a normal child should look like. There is a good reason for that. When she was born, she had an omphalacele. That is where there was a hole in her abdominal wall while she was in the womb and some of her organs developed in a sack on the outside of body. The day she was born, she had surgery to start the repair and for 7 days she had a plastic bag over her opening so they could push the liver and part of her stomach back in. On her 7th day of life she had her second surgery to close the hole and stuff everything back in. She was at Scottish Rite for the first 23 days of her life. So Scottish Rite has been an important place for Caroline for many years (well at least the last 7). So when they say that the Radiologist and the Doctors have a hard time reading her scans, we understand. God has blessed us several times over. Caroline will finish her last dose of the SSKI (iodine yukky medicine). We have 3 months off of visiting Scottish Rite. It will be nice not to have to worry about Dr. visits each month. When we go back we will have another CT and bone scan.

Continue to pray for all of our friends. Remember the family of Ethan Alain. Ethan was the 4 year old boy who died this summer from Ewings Sarcoma and was our neighbor during both of the transplants at Egleston. Ethan's dad and I communicated by email and this will be a difficult Christmas. The big thing they have going for them is a strong belief in Christ and that will help them get through. In fact, that is what get us through to.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, December 7, 2005 10:29 PM CST

I apologize for not updating since Sunday.

Boy, it has been a busy week for Caroline so far. We went to Scottish Rite on Monday for the bone scan and the CT. We got there at about 11 am and did not get out of there till after 5 pm. She had to have an IV line started and then she had to be injected with the contrast for the bone scan. She then had to drink the Contrast for the CT and boy was that a chore. She has to drink two large cups of the contrast mixed with apple juice (they came in with it mixed with Gatorade and she said "No"). My job was to make sure that she would drink the stuff. I had to play games with her and then would take a couple of swallows and then another short game and then more swallows. We were supposed to be through with the Contrast by 1:55, but we didn't finish all of it till 2:15. They finally got us in for the CT at about 2:45 and by that time she had fallen asleep. I carried her into the room for the scans and she did not wake up at all. That is probably the best way to handle scans. After finishing the CT, we went over to Nuclear Medicine to have the bone scan done. We had to wake her up so that she could empty her bladder. When she got back up on the machine for the scan, out she went. When we finally got out it was after 5 pm and none of us had had any lunch that day. We stopped at McDonald's and came straight back to Bremen. While we were in Nuclear Medicine, they mentioned that we were supposed to come back on Tuesday for her MIBG injection. We told the technician that we had been told we were scheduled to come on Thursday for that. We found out that they had goofed and that we had to go back over for the MIBG injection on yesterday. Well that posed a problem for us. Caroline has to take a dose of SSKI (Iodine) the day before the injection and then a dose for each of the next 5 days. We had to call over to AFLAC and they told us that Caroline needed to take a dose on Tuesday morning and then an hour before she was scheduled to be there, she had to take another dose. That is easier said than done. Imagine the worst tasting thing you have ever tasted and think about having to take two doses of that in the same day. We knew that Caroline was going to miss some days of school this week, but after trying to force the medicine down her yesterday morning and this morning, she did not make at all on these days. We had worked it out for them to draw blood while they had her an IV in yesterday, but they forgot to do it. When they went back over today for the MIBG (soft tissue scan) they said they found where they were supposed to have drawn her blood. She had blood drawn a couple of weeks ago for some blood work at her pediatrician's office and Erika in Dr. George's office said that the pediatrician could fax it over and it should work. Things went real smooth today and hopefully our visit to see Dr. George on Friday should be uneventful. Hopefully with the 3 scans done this week, they should be able to see everything inside Caroline except for her soul.

A big thanks to Caroline's teacher, Ms. Williamson. We called today for some of Caroline's makeup work for her being out so much this week and she sent the work, but with a message. She said that Caroline should not work on any of it till the Christmas break. She said that Caroline is so smart that she is doing the work of 2 school years in one. She said that in the first grade that they should be at level 9 in reading by Christmas break and that Caroline is already at level 13 (tonight she read a level 14 book). The Lord blesses us continually. That is not bad for a girl who missed over half a year in school for Kindergarten.

Please continue to pray for us.

Charles, Nancy, Katherine, and Sweet Caroline.

Sunday, December 4, 2005 9:57 PM CST

I hope that you have had a good weekend. We here at the Johnson house have been in celebration mode over the weekend. Friday was Katherine's 12th birthday (hard to believe) and then we had her birthday party at the mall on Saturday. She and her friends did a scavenger hunt that Nancy came up with and they seemed to have a blast. We put up our Christmas tree last night and Nancy spent the evening putting all the ornaments on and then putting up her village in the living room. Today was kind of a slow day, with me missing church this morning due to my cough and cold getting worse overnight. I woke up this morning with my chest hurting and then I was very stopped up. Things finally seemed to get a little better by around 2 or 3 this afternoon. Nancy, Katherine, and Caroline went to church as they had the new member luncheon after the service. We were invited since Katherine joined the church a few weeks ago. Nancy brought me some food home so I wouldn't have to go hungry.

Tonight I spent the evening putting together a new DVD of Caroline's Make-a-wish trip. We have a new digital video camera that has a hard drive and I had to transfer over the video to my laptop and I finally finished it a few minutes ago. Now, I just have to burn it onto a disc (gotta buy one first). It was fun to watch all of those images of Caroline grinning. The girls had some great experiences and I am so glad that we got to share them as a family.

Tomorrow is a big day. Caroline is scheduled for a Bone scan around 12 tomorrow and then is scheduled for a CT scan around 2pm. We have to be at the hospital by 11 so she can get her injection for the bone scan and then she has to drink contrast for 2 hours starting around 12. On Thursday, she has to come back over for the injection for the MIBG scan and then she has to have the MIBG scan on Friday. The bad part about the MIBG is that she has to start taking the SSKI (iodine) on Thursday. That is the most disgusting tasting stuff man has ever created. Please pray that she will be able to swallow that stuff easily. This is the beginning of a routine we will follow for the next five years. Having scans to make sure that the cancer is not coming back. God has been gracious to us and we thank him for that. We count each day with Caroline as a blessing. I have been blessed to have two wonderful daughters.

May God Bless you!

Charles, Nancy, Katherine, and Sweet Caroline

PS - Check out 3 new pictures I added tonight.

Wednesday, November 30, 2005 9:34 PM CST

We arrived back in Atlanta shortly before 7 pm this evening. Boy did we have a great time and a tiring time. We arrived in Orlando before 10 am on Friday and then arrived at Give Kids the World Village by 11 am. Boy, what a great place that is and how they look after the wish families. We had a beautiful 2 bedroom - 2 bath villa. The girls bathroom was the nicest, with a Jacuzzi tub and a walk in shower. They told us, and the girls kept reminding us, that it is Give "Kids" the world. We stayed around the village on Friday and did things there. On Saturday, we spent the entire day at Disney World Magic Kingdom. We got there at about 10 and stayed till about 10 pm. On Sunday, we spent the morning at Disney's Animal Kingdom and then went in the afternoon to Epcot and then on to Downtown Disney that evening. On Monday, we went to Disney-MGM Studios that morning and then returned to the Magic Kingdom that evening. It started raining on Monday evening and while we were getting ready to go, the bottom dropped out. It rained for the first part of the day on Tuesday, so we stayed around the Villa for most of the day and then went back to Downtown Disney to do a little shopping. This morning, before we checked out, the girls got to ride horses and then after checking out we went to Sea World till it was time to go to the airport. There are so many stories that I want to share - such as the Mayor of the Village coming and tucking Caroline into her bed on Tuesday night. I need to mention that the Mayor is a 6 foot tall rabbit. I went to read her a story after he left and was going to crawl in bed with her, but she told me I couldn't mess up the bed after Mayor Clayton had tucked her in. I am putting in some new pictures and hopefully will add a few more in the next few days from our trip. I will also try to tell some of the stories of the week.

Please check out the website for Give Kids the World at the bottom of the page. I am glad that we arranged with Make a Wish for us to stay there. We could have stayed on one of the Disney Resorts, but oh what we would have missed out on.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, November 23, 2005 9:50 PM CST

Twas the night before Thanksgiving and what could be heard were the sounds of the family packing suitcases all through the house. Oh well, enough of the poetry. We are in the midst of packing for our Make a wish trip to Orlando on Friday. Caroline has been running a slight temperature for the last 3 mornings and so off to the doctor we went this afternoon. The doctor could not find anything going on with Caroline's ear and throat. She did a mono test, which came back negative. They dis some blood work to make sure her white count was not showing something going on. Her WBC was a little around 4.9, which Dr. Brown told us was a little low, but not too low that it would show something active. They plan on doing a blood culture and see if anything shows up. Her pediatricians have always been pretty helpful with her. Dr. Brown said they wanted her to feel good for her trip. I have been sneezing and having a runny nose today, so I hope that I am not getting something.

Tomorrow, we are off in the morning to my sister Terri's house in Fayetteville for the annual Johnson Thanksgiving lunch. We will come back to Bremen for the dinner with Nancy's family. Then come home for a good night's sleep and get up on Friday morning at about 4 am.

If I have a chance, I will update from Florida. If not I will update when we return next week.

Thank you for keeping up with us and continuing to pray for Caroline and our family. May you have a blessed Thanksgiving.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, November 20, 2005 10:02 PM CST

Well Thanksgiving is almost here. We were looking tonight at how busy we will be over the next 3 to 4 weeks. It will be a short week of school for the girls (Carroll County schools have the week off this week, except us 12 month employees who must work thru Wednesday). On Tuesday morn, Caroline has a physical therapy evaluation in Carrollton. She was evaluated at school, and the PT said that he thought she might need to be seen on a consultative schedule, concerning her running. He said as far as school goes, she did not have any problems that would hinder her from being successful. On Thursday, we go to my younger sister's house for our annual Johnson family Thanksgiving lunch and then return home to finish packing for the Make-a-Wish trip. We fly out Friday morning to Orlando and return home on the following Wednesday. Katherine's 12th birthday is on Friday, Dec. 2nd and her party is on the next day. On the next week, Caroline has her bone scan and CT on Monday the 5th, the MIBG injection on the 8th and the MIBG scan on the 9th. I have to go to a conference away from home on the 12th - 14th, Nancy and Caroline fly go to Las Vegas on the 15th - 18th and then Christmas on the 25th. What a busy schedule we have. Please pray that we survive these next 4 weeks.

We want to say how Thankful we are of having Caroline do so well this past year and of how all of you have supported us. God has been great and has taken care of us. May you have a blessed Thanksgiving.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, November 16, 2005 10:19 PM CST

What a great day for Caroline. We went to the Univ. of West Georgia this evening and had a great time with the girls of Chi Omega sorority. They were the nicest girls and the girls had a great time. It started a little slow with Caroline being shy, but when she came out, she came out. They had a cake for her and a backpack of things to take on the trip next week. Our wish volunteers, Pam and Tommy Gaines, were there from Alabama and made sure we had everything we needed. It looks like we are going to have a blast. I will try to get some of the pictures up from the party.

When we got home from Carrollton, Caroline took her last two pills of accutane and we are now officially off treatment. We have scans scheduled for the week after we get back from Orlando. She has a bone scan and CT scan on Monday, Dec. 5 and then she has her injection for the MIBG on Thursday, Dec. 8 and the MIBG scan on Dec. 9. We made it official today by agreeing for Caroline and Nancy to go to Las Vegas on Dec. 15 - 18 as a guest of AFLAC. They are picking up the tab and a couple of the things she will get to do is see a dolphin show and also go see Brian Boitano skate and get to go skating also. I heard that the girls have a great time. Caroline was nominated by one of the ladies with the Children's foundation who worked with us at the Care-a-thon. Caroline is making up for all the time that she was not feeling good earlier in the year.

We just thank the Lord for his blessings. Please continue to pray that the Cancer is gone and pray for those who are still fighting the disease.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, November 16, 2005 5:06 AM CST

Things are getting better around here at the Johnson house. Today is Caroline's last day of taking accutane. Thank you Jesus! It has been a long ride with treatment over the past 16 months. Her skin really is taking a hit from this round, with more cracked skin and bloody spots on her face. To us, they are beauty marks. She asked last night if we were going to celebrate this and we told her of course. We will probably take her out to eat Saturday night.

We have a sorority party to go to tonight for Caroline. The Chi Omega sorority at West Georgia are the official sponsors of Caroline's Make a Wish trip next week. I joked to some of my staff at school that it took my daughter to finally get me an invitation to a sorority party. We are supposed to fly to Orlando a week from Friday and be back the next Wednesday.

We got a call from the AFLAC cancer center yesterday and they told us that Caroline has been nominated as one of 10 girl cancer patients to go to Las Vegas in December on an all expense paid trip. Only one parent gets to go (Katherine and I will stay home). I have to call them back today and tell them that we will do it. All I know is that the trip is in December and will let y'all know more details after I call them back today. I guess Katherine and I will just go to the new aquarium while they are gone.

Thank you for all of your prayers for Caroline over this past year. Prayers do work and Caroline is best example I can think of. If you hear a loud noise tonight, around about 9 or 9:30, that will probably be all of us having a party celebrating the downing of her last pill.

Charles, Nancy, Katherine, and SWEET CAROLINE

Saturday, November 12, 2005 8:35 PM CST

My apologies for not updating the last few days. Things have been kind of hectic around here. Caroline is on antibiotics for 21 days trying to get rid of her sinus infection. She is also on the last few days of her accutane. Wednesday will be the last time she has to take this medicine. It saves her life, but boy does it take a toll on her skin and her face. Nancy is now down with her sinuses aggravating her. She started on an antibiotic on Friday. I went to Macon for a meeting yesterday and got back late this afternoon.

News concerning the Make a Wish trip - We found out the other day that the Chi Omega sorority at the Univ. of West Georgia is sponsoring Caroline's wish. They are throwing a party for her this next Wednesday night on their hall at the college. We find out the details here. It is nice that these girls have worked so hard and we feel honored. We'll keep you informed about the details.

Please pray that the sick bugs will leave our house. We want to make sure that we are well when we leave for Florida.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, November 8, 2005 9:12 PM CST

A big thanks to all of you who have written in the last few days on Caroline's guestbook. If you haven't written, please write a little something to know that you stopped by. It is encouraging to her and to us as a family to know that you are thinking about us.

Caroline is on the sick side. She has a sinus infection and is having to take some antibiotics to help fight the sickness. She is also taking some decongestants. I went to the doctor this afternoon and have the beginnings of a sinus infection. Dr. Parrish gave me a shot and then prescribed an antibiotic and something to help with whatevers is brewing in my lungs. Katherine is doing good and is back at school, after having to take a couple of days off last week. Everybody in the family got their flu shots, but my doctor told me that I cannot get a flu shot till next week. Something about the steriod shot not working together with the flu shot. Katherine is enjoying soccer practice. They practice everynight during the week, except for Wednesday. Last night, I got out and helped with the practice and even got a chance to play against the all star team. I was out of breath and my smooth bottomed tennis shoes allowed me to make some interesting slides and falls. My jeans were all covered in grass stains. I hope it all comes out. Katherine said I ran a whole lot more than her and she was not tired.

Please pray that Caroline will get better in the next day or so and that she can go back to school.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, November 8, 2005 9:12 PM CST

Saturday, November 5, 2005 9:33 PM CST

My apologies for not updating since Tuesday night. It has been a pretty busy week.

I forgot to write on Wednesday and mention that it has been a year since Caroline's surgery to remove the majority of her tumor and a year since we spent those 18 or 19 days in the hospital trying to recover from the surgery. Boy how time really flies. God is so wonderful and has blessed us in so many ways.

A big thanks to both Pine Grove Baptist Church and the Bremen First Presbyterian churches for giving such wonderful gifts for Caroline. Your love and prayers for her are so great and we appreciate all that you have done for us as a family.

A big congratulations to Temple High. Temple won their first playoff game Friday night. Temple was the #4 team from region 6A and we beat the #1 team from 5A, Landmark Christian. The score was 14 - 13 in overtime. I remember when Temple started football in 1988. Next year Temple moves to AA and hopefully this is the start of many successes for our program. (PS - Congrats to my friends in both Bowdon and Bremen for winning Friday night also).

Caroline is in the middle of her last round of accutane. So far, so good about the side effects. I know they are coming (skin and irritability). Please pray that Caroline will have an easy time with the side effects and that this will be the last treatment for the Cancer that she ever has to have.

Please write us a note if you visit the page. It encourages us when we know that you stopped by and read about us. It lets us know that you are still concerned and we enjoy reading these messages to Caroline.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, November 1, 2005 10:11 PM CST

Caroline had a doctor visit and saw one of the PA's (physician assistants). They said that she looked good and her counts were great. She did wonderful when it came time to getting her blood drawn. They found a good vein in her arm and Nancy said that she was very brave and took it with hardly any effort. They scheduled her for an MIBG scan and a CT during the first week of December. She starts her last round of accutane on Thursday and after 2 weeks of taking 2 pills in the morning and 2 pills at night, she will be through with her cancer treatment. Thank you Lord!!! I met up with Nancy, Caroline, and Alice for lunch at Red Lobster on Hwy 41. I was at a training in Smyrna and at the same time that I was out for lunch, they were getting out of the Doctor's office. Caroline liked looking at the lobsters and kept going up to see them in their tank. After I left to go back to the training, the manager came over and said he noticed how she liked looking at the lobsters and he brought her a red necklace with a lobster on it and he asked her if she wanted to pet a lobster. At first she didn't say anything, but when it got time to go, she told her mother that she wanted to pet it. The manager got one out of the tank and he turned it around so that Caroline could pet its tail. She told me that its tail just started to curl under when she touched it and then when he put it back in the tank, she said that its tail moved up and down like it was waving bye to her. She has had some interesting experiences over this last year.

Katherine went back to school today, but she said that she felt terrible. She complained of her face hurting and said it felt like she had a tooth ache. We believe that she must have a sinus infection. She is going to see her doctor tomorrow after school. Nancy called her soccer coach to tell him that she couldn't make it again tonight to soccer practice. Please pray that she will start feeling better. She has had some math problems that she has been working on and does not understand how to do them. She asked me to help and after trying to help her, I now know why I taught history for 13 years. I think I will take the problems to some of my teachers and get them to explain them to me. It gives me a better understanding of what students need to know.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, October 30, 2005 9:42 PM CST

Please pray for the girls this week. Caroline has a doctor visit with Dr. George on Tuesday morning. She will get her last prescription for accutane and she will start taking the pills on Thursday morning. This will be the last 14 days of having to take these pills. It is amazing how well she has done taking the pills. When we were at Eggleston, during the transplants, we tried everything to get Caroline to swallow a pill. She has amazed us at how well she can swallow those pills. She takes two in the morning and two at night. She now just pops both in her mouth and they are gone. She also helps me in taking my blood pressure medicine in that we race to see who can swallow them first. When she finishes this round, then she will have finished her treatment for Neuroblastoma. Boy we will have a celebration on that last day. Of course we will celebrate in Florida at the end of the month with our Make a wish trip after Thanksgiving. I guess we will find out about the next round of scans when she goes on Tuesday. On Thursday, Caroline is going with her class to see "The Incredibles" on Ice.

Katherine is not feeling too well tonight. She has been stopped up all day and has been complaining of aching and just feeling awlful. She will probably stay home tomorrow from school. She was scared that she was not going to be able to go Trick-or-treating tomorrow night, but we told her we would see if she got better in the day, we might lete her go. She also wondered about her soccer practice, and we said we would see.

Well I survived another birthday. I got more Georgia Tech stuff, especially from the girls. I don't see much difference in 41 than I saw in 40. Maybe it is when I get a little older that I will see a difference. At least I am still alive. One of my school parents told me that she was impressed at how much I have done in my age. I am not sure what she means, but I will take it as a compliment.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, October 27, 2005 9:31 PM CDT

Well the big news at the Johnson house is that Katherine made the All-Star team for Soccer. We got a call tonight from the coach and they start practice tomorrow. One of Katherine's best friends, Karen, also made the team. I got the call this evening and Katherine was scared that Karen wouldn't have made it. She is spending the night tomorrow night with her and was worried about how that might work out if Karen didn't make the team. A little later Katherine got the call from her friend and they both were screaming. This was such a great honor for Katherine and we are so proud of her. With all that she has gone through herself over the past year, it is nice that something good happens for her.

Caroline is going to school tomorrow dressed up as some sort of "Spider Queen." It is the last day of their Red Ribbon week celebration. She has had a blast doing the different days. When I got home this afternoon, I called out for Sheriff Johnson, and she hollared back, "I'm here."

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, October 25, 2005 10:06 PM CDT

Well Katherine finished up soccer last night. They lost to the blue team and that finished them up. She had a great time this year and the team had their get together tonight at Zaxby's. She got her trophy for playing this year. Last fall she did not even get to play, but the team gave her a trophy anyway. Oh, what a difference a year makes.

Caroline has been participating in the dress up days for red ribbon week at school. Today was twin day and she and one of her friends at school wore the same clothes, except for a different color shirt. Tomorrow is crazy sock day and she has on the socks she plans to wear tomorrow (even in bed, I guess she did not want to forget). She is wearing two different socks. On Thursday, they are have cowboy day and she has an outfit that her grandmother picked up at the dollar store. It is a western outfit with a hat, a sheriff's badge, and some other paraphenalia. She is having a wonderful time at school. I asked her tonight if she enjoyed going to school and she said that it is always fun. I hope she will keep this enthusiasm. Again, what a difference a year makes. At this time last year, we were getting ready for her to have her surgery. Keep on praying for her. This last round of accutane has really messed up her skin. She is not bouncing back and she starts her last round next week. But, she will be fine.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, October 23, 2005 9:50 PM CDT

Friday night was a special night for Caroline. She and another boy, Ethan Blank, were honorary captains for the Bremen Blue Devil Football team. They walked out with the Referee and the football players. It was so sweet when Caroline held the hand of this tall official and went to the center of the field. Ethan, who has a degenerative brain disease, was not able to walk out and was carried by his father. Nancy and I stood on the sideline watching. When they announce that they were the honorary captains, the whole Bremen side of the stadium eruped with applause. It was so heartwarming. They stood to the side while the toss took place. In fact, Caroline complained when she came off the field that she didn't do anything. I guess she thought she was going to get to do the actual coin toss. Both her and Ethan were presented with a signed football and a signed program. The Bremen head coach, Ricky Tolleson, wrote a sweet letter to Caroline and talked about the courage that she has displayed and mentioned several passages from the Bible about courage and be strong. We appreciate him and the entire coaching staff of Bremen High. The game was very good and went back and forth. I have to admit that I was pulling for Bremen that night (I know what I said the other day and I did not wear blue that night, a yellow shirt - close to gold). Bremen and Bowdon both played tough and Bremen was not able to pull it out in the end and lost 17 - 13. I was proud of my Temple Tigers. They beat Trion and won their first region game in a long time and will get to go to the playoffs as the #4 team for region 6-A. Go Tigers!!!

Nancy's class reunion was on Saturday. The Bremen High class of 1985 had a lunch for families during the day and then a couples gathering that night. It was a fun day, especially for Nancy. She got to see a lot of her old friends and even did some dancing (not me). Some of her old Drill Team members were dancing around like they were in high school and she had to join in for a few high kicks.

Tonight Caroline sang with the children's choir at church. They sang a couple of numbers and she looked so cute up there. I am so thankful of where we have come in this past year. Continue to pray for her and us. Also remember to pray for other children as well.

Charles, Nancy, Katherine and Sweet Caroline

Thursday, October 20, 2005 9:26 PM CDT

Another day at the Johnson household.

Caroline brought home her report card today and she had all S's and the teacher wrote that she is on grade level. We are so happy for that. She brought home a spelling test that had a 90 on it. Not bad for a short week where they have only had a couple of days of schools so far this week. Caroline enjoys school and is doing wonderful. She finished her accutane yesterday and her face has several sores on them. This has been the worst that her face has been since she started the accutane. Thank God that she only has one more round. She is off of the accutane for the next two weeks. So in less than a month, Caroline will have completed her treatment for cancer. We will definitely celebrate on that day.

Katherine's soccer team played a really great game tonight. They tied the team that has not lost any games in their league. This team that they tied has had victories with usually a large point differential. The last time they played this team, Katherine's team was beaten by a score of 10 to 1. She was very excited about how they played. Katherine's team was actually leading in the 4th quarter by a score of 3 to 2.

Tomorrow night, Caroline will be an honorary team captain for the Bremen football team. She will share this honor with the little boy named Ethan, who has a degenerative brain disease. I am actually going to miss the Temple v. Trion game. At least the Temple game is an away game. We appreciate this honor. She will get to go out for the openion coin toss.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, October 19, 2005 5:28 AM CDT

Well today is Caroline's 7th Birthday. Hooray for Caroline. I wondered last year if we would even be at this point. It has been a long and winding road (Sorry Beatles). Today Nancy will take cupcakes to Caroline's class and also some goodie bags that Caroline and I put together last night. She had a wonderful surprise party on Sunday. We went to the Japanese restaraunt in Carrollton after church Sunday and then then did the Happy Birthday song and brought out their cake for both Caroline and me (Oct. 29). We then went back to Nancy's parents house and when we drove up, she saw that there was a Moonwalk in the back yard and streamers out front. She asked what that was for and we told her that we were celebrating Steve's (Nancy's sister's boyfriend) birthday that day. Caroline remarked "He getting a better party than I am." We walked in the house and as soon as we came in the kitchen, everyone there screamed "Surprise." Caroline's face just beamed and then she hid it in Nancy's shoulder. She had a blast getting presents and all of the kids there jumping continuously on that big thing. Caroline remarked that it was a great day. That is all we wanted it to be, a great day for a great girl.

The girls have had the last two days off and have had a good time. I have been slowly putting together Caroline's new swing set. I may have it completed by next summer. Katherine had a soccer game last night and her team won. She only has 2 games left for the season.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, October 15, 2005 10:07 PM CDT

My apologies for not updating since the first of the week. I have been out of town the last half of the week. I was at a seminar for principals at Stone Mountain on school improvement. IT IS GOOD to be home. They have the most comfortable beds, but I did not sleep well. I needed Nancy beside me (in fact I never sleep good when I am here alone either). When I go to any conference that is within driving distance, I always come home to sleep. I would rather be with the family.

The girls are doing good. Katherine had a soccer game on Thursday night and came up a little short and were beaten 2 to 1. Caroline will finish up her 5th round of Accutane on Wednesday (her birthday). Her mouth is hurting her now, with large sores on both sides of her lips. Thank God that we have only one more round to go. Katherine will be baptized in the morning at the 11:00 service, along with her cousin Tyler. PLEASE DO NOT READ THIS NEXT SENTENCE TO CAROLINE BEFORE SUNDAY AFTERNOON: We are having a surprise birthday party for Caroline tomorrow after lunch. We are going to eat Japanese for lunch and come back to Bremen. We have rented a Moonwalk for the afternoon. One of the things that Caroline said she always has wanted was a surprise party. I will update you tomorrow night about the party.

The girls are out of school this next week. We had a message from the Bremen High football coach earlier this week that they want Caroline to be part of the coin toss for the Bremen-Bowdon football game this next Friday night. Nancy has already told me that it means that I cannot be at the Temple game against Trion (in Trion). She also told me that I cannot wear Temple colors to the Bremen game. What I must sacrifice. (I asked her about Bowdon colors - since I worked in Bowdon for 2 years - she said no the that also). I think I will wear Khaki and white (pretty neutral).

Charles, Nancy, Katherine, and Sweet Caroline

Monday, October 10, 2005 9:55 PM CDT

We have been away for a couple of days, with the girls staying with Nancy's parents. Nancy and I went up to Pigeon Forge for the weekend for a little together time. We had a good time, despite the wet weather. Nancy got to do one of her favorite activities, shop. We ended up buying the girls a lot more than we bought for ourselves. In fact, I think I ended up missing the girls more than they missed us. On Friday morning, I drove the girls to school and Caroline gets dropped off last. When we got up to the school, I told Caroline to get out of her car seat and come up to the front seat. When she crawled up front, I looked over and she had tears in her eyes. I asked her if she had been crying and she said that she was going to miss us. She then started crying more. I got her to stop crying and told her that she would be fine. On Friday night, Nancy's mom took the girls to Walmart and when they were going, she got tears in her eyes again. When Katherine asked her what was wrong, she said she missed us. Well, that was the last time she mentioned us being gone for the rest of the night. I guess maybe she and Katherine missed us too.

We got back last night in time to see Katherine sing with the youth choir at church. Our new minister of music, Andy Fowler, is really doing a great job with all of the music program. Katherine's cousin, Tyler, came forward and made a public profession of his faith. My dad will baptize him on next Sunday morning when he does Katherine. It will be a special morning.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, October 6, 2005 10:20 PM EDT

JUst wanted to post that things are going well today for the girls. Caroline has been having a little pain in her leg muscles today. Nothing to worry about (I guess). It is probably from being more active. Nancy and I had a discussion at lunch today with Nancy's parents about how anytime that she has a pain now, we are wondering in the back of our minds if the cancer is coming back. We'll make it through this. Please pray for the girls this weekend. Nancy and I are going out of town for a little time together. The girls are staying with Nancy's parents. Katherine will be responsible for coming and feeding the pets. The girls did not get to play soccer today as the weather cancelled all games. Hopefully they will get to play on Tuesday. Pray for Caroline and her spelling test in the morning. She has been struggling a little with spelling (doing great with math).

I decided to leave the post from Tuesday up so that people who have not had a chance to see the good report on Caroline can see it.
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Tuesday, October 4, 2005 9:13 PM CDT

We had a good visit with Dr. George today. We got there a few minutes late and things were going great till it got to the time to draw Caroline's blood. She does not have any lines anymore, so they had to take the blood from a vein in her hand. Her veins in the arms like to roll, so the hand it comes from. They put the numbing cream on her hand and she didn't have the blood drawn till after we spoke with Dr. George. After looking her over, he told us that she looked "perfecto." A word like that from the Oncologist is like a piece of sweet music. We had a discussion with him about the future and what we could expect. He told us today that the most dangerous time for a neuroblastoma patient is the 18 months following treatment. He said if there is a return of the cancer in the first 6 months then it is usually aggressive and means we have a lot to worry about. If it comes back after this, then it can be treated, but is still worrysome. He said that she will never be in remission, but can be "no evidence of disease." He said that remission is a term usually meant for leukemia patients and he said that truly remission means that the cancer is not active. Technically, the two terms mean basically the same thing. He told us that we will have scans for the next 5 years and if there is no sign of return she will be through with scans for the rest of her life (unless she starts having symptoms).

We start the next round of accutane on Thursday. This will be our 5th round with only more round to go. Dr. George said that this drug helps to destroy any remaining cells. It is amazing the effects that it has on Caroline's body. She is cranky (she is that off of accutane also), her hands and her feet peel huge chunks of skin, the edges of her mouth crack and sometimes bleed, and she is so sensitive to the sunlight. Dr. George said today that she has done very well compared to a lot of others who take the drug. The Lord continues to bless us.

Caroline played in her soccer game tonight. This was the first one that I have gotten to see. It is a lot different from the ones that Katherine plays. There are no losers and they don't even have a goalie. She has a good time and that is what is most important.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, October 2, 2005 9:30 PM CDT

Well it has been a fast paced couple of days here at the Johnson household. On Friday, we went to the Temple � Bremen football game and it felt funny to be walking the girls into the game with me wearing all of my Temple garb and the girls wearing their Bremen Blue Devil Shirts. I even walked Nancy and the girls to the visitor side. Nancy said that Caroline wanted me the whole time they were there and it would have been kind of hard for her to be with me on the sideline. I saw them right after halftime and they decided to leave. It was a close game till the fourth quarter and Bremen won.

Yesterday, we had a reunion to go to in the morning and early afternoon and then we went to the West Georgia Fair pageant in the evening. The pageant was a really nice event. Our family was given seats on the front row and then both girls were crowned as honorary queens. They both got tiaras and a scepter and a ribbon that said �Queen.� They helped give out the awards to the girls and when they were crowned, they got a standing ovation. They also had a competition called the �People�s Choice Queen.� In this competition, the parents and audience could vote for their choice and it cost $1 to vote and you could vote as many times as you liked. The neat thing about this was that they donated all the money to Curesearch in honor of Caroline. They raised over $300 through this and the girls got to help crown the girl who won this. After the pageant the girls wanted to go to the fair and all of us walked around all dressed up. We rode a few rides (Ferris wheel, bumper cars, a small roller coaster, and a couple of other things). Caroline wanted to stay till it closed (midnight), but we finally had to say we were tired and hungry. We got home a little after 11 pm.

Today was fairly uneventful, with going to church both morning and night. Katherine got to do her first Lord�s Supper tonight. Her cousin, Tyler, decided tonight that he wanted to talk with our pastor, Brother Herman, about becoming a Christian. Katherine is going to be baptized by my dad on Sunday, Oct. 16. It will be done in the 11:00 service and it looks as I might sing a solo that morning. We are blessed in so many ways. I thank God for giving me my family.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, September 29, 2005 9:39 PM CDT

Well both the girls had their soccer games tonight. Of course in Caroline's game there was not a loser. I kind of like the idea in where you play your heart out and you don't lose. She told me tonight that they were all winners. Katherine's team did not have such luck tonight. They got beat by a big score. She was not as down on herself tonight and was pleased with the way she played. We are pleased if she is pleased. Learning to enjoy a game for its own sake is a life lesson.

Well we finished up our 9 weeks today and have a teacher workday tomorrow. The students and teachers have next week off for fall break. It will be me and my custodians at school next week. Tomorrow night is the Temple vs. Bremen Football game. My children have told me they intend to go and sit on the Bremen side (even though we have reserved seats on the Temple side). I guess we are house divided tomorrow night. The perils of living with a bunch of Bremen fans.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, September 27, 2005 8:52 PM CDT

The girls have been busy the last couple of days. Katherine sang with the youth choir on Sunday night. This was the first time they sang this year and we're proud that she has been getting active with the youth program. Caroline is doing better sitting in church (of course falling asleep in Nancy's arms didn't hurt). Yesterday, Caroline was the grand marshall for the West Georgia Fair parade. She and Katherine rode on the back of the seat of the convertible and they had the best time just throwing candy to the kids lining the streets of Carrollton. Mom and Dad came up and then we went and ate at the Japanese restaurant in Carrollton after it was over. They had a great time. Today, Nancy and the girls went to the Mall and bought Katherine some new clothes. She is getting so grown up and just needed new clothes. I went to the school and did a little work. The girls came home and went to soccer practice and then got ready for school tomorrow. It will seem strange having such a short week. The girls have 3 days, while I have 2 with Kids and a teacher workday. Carroll County students and teachers have the week off next week due to fall break. I on the other hand have to work (the fun of being a 12 month employee). The one thing that I will get to do next week is take the girls to school. Caroline asks me every morning if I will drive her to school. I promised her that I would do it each day next week. She asked me one day last week on a day that my AP was going to be coming in late and I told her I couldn't. Tonight, she asked me if I could take her in the morning and I told her I couldn't. She then asked me if my manager was not coming in. It took me a while to connect that she was talking about my Asst. Principal.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, September 25, 2005 6:21 AM CDT

Good morning. I thought I would update the page this morning, since we have had so much going on the last couple of days.

The girls did play soccer on Thursday. Caroline got to play in her first game that afternoon and really enjoyed it. In her game, there are no losers and so both teams won. Neither team has a goalie. Katherine did not have such a good afternoon, as their team came up short, 4 - 2. She took it a little hard. Her team in the spring won all of their games, so she has to learn that you don't always win. This is the value of atletics in helping to teach life lessons.

On Friday, after learning that we all get a couple of days off next week (thanks to the Governor), Katherine and I were playing around and she was trying to hit me in my chest. I moved and she ended up smashing her hand into the edge of the counter top. She was in agony for a while and we even wondered if she had broken her finer. We talked with Nancy's sister Jodi, who is a nurse, and she said that if the finger was broken, there was nothing to do but splint it. I had to go to a wedding rehearsal, so we took the girls to Nancy's parents house. Alice splinted Katherine's finger for us. After we ate the meal, Nancy came back and took the girls home. When I got home, she was not complainig anymore. By last night she said that her finger was not hurting and even was bending it. It probably was just jammed, but oh it scared us a little.

Yesterday, we ate with the organizers of the West Georgia Fair at the Lazy Donkey. Caroline is going to be the Grand Marshall of their parade on Monday evening. She also will get to help crown the winner next Saturday night. The lady in charge, Lawanna Musick, chose Caroline because of what she has gone through this last year. We feel it is an honor to be recognized and hope this will help bring attention to childhood cancer. Courtney Saxon, last year's winner and the daughter of one of my friends, came and ate with us yesterday. She brought both girls a stuffed dog and they gave Caroline a bouquet of balloons. When we were finished, Caroline decided that she wanted to give everyone that was at the table one of her balloons. We all tried to tell her that they were for her, but she insisted that she wanted everyone to have something. She always wants to make sure everyone has something and always wants to give people things. In fact, after the wedding last night, she wanted to give the bride, Haley Coats Lewis, a flower. She was very insistive on this and finally I gave her my boutonniere from the wedding. Haley held that with her even as she drove away in the car from the church. I think that made Caroline very happy. The girl that caught the bouquet from Haley, brought them over to Caroline and gave them to her. We are blessed to have such giving children. The guests threw rose petals at the couple as they left and Caroline insisted on bringing some of the home. When we got home, she put the bouquet in a vase and found a candy dish and filled it full of the rose petals and put a picture of Haley in her wedding dress on top of them.

I just wanted to share all of this now, instead of waiting till tonight. Hope to update tomorrow.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, September 21, 2005 10:15 PM CDT

Please check out the Photo Album. I just changed the pictures to show some from the Quiet Heroes Luncheon a couple of weeks ago. I know it took a while, but I finally got them in.

Caroline has a sinus infection. Nancy carried her back to the doctor this afternoon and her ears have cleared up, but now she has a sinus infection. She has more stuff coming out of her nose that should be in her nose. It is that nice yellow color (at least it is not green). Both of the girls have a game tomorrow and I have another football game at school, so I will probably not get to see Caroline play, but hopefully I will see part of Katherine's game. Last week Caroline did not play due to getting sick before the game. Hopefully this sinus infection will not keep her out.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, September 20, 2005 9:04 PM CDT

Well today was soccer practice for Caroline. I went with her today and Nancy took Katherine to her practice. I don't always get the chance to go with the girls to their practice or their games. Caroline worked real hard in her practice, but I noticed tonight that she just doesn't have the energy that a lot of the other kids have out there. She also does not run that well, or as she puts it she runs rather slow. Please pray that she will do good in this. She came off the field several times saying that she was hot. I pumped water into her and on top of her head. The best time she had tonight was when several of us parents went on the field and played against them. I was the only parent wearing a long sleeved white dress shirt and dress shoes on the field. I think next time I go with her, I will put on something that I can sweat in.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, September 18, 2005 9:51 PM CDT

Well the next couple of weeks are going to be busy around the house and around school. The girls continue with their soccer this week. Katherine has practice tomorrow and Tuesday and has her next game on Thursday, while Caroline has practice on Tuesday and a game on Thursday. Caroline finishes up her fourth round of accutane on Wednesdsay. It seems as though I have something everyday at school (either during or after). I am singing in a wedding on Saturday, so I have to go to the rehearsal on Friday night (means i'll have to miss a Temple football game) and then sing on Saturday. Courtney Sellars and I are doing a duet, "The Prayer." It really has some high tenor parts in it.

Caroline has been chosen as the Grand Marshall for the West Georgia Fair Parade on Monday, 26th. The parade is in Carrollton and begins around 6 pm. She is being taken out to eat on this Saturday by the winner of last year' pageant, Courtney Saxon. Courtney is the daughter of one of a friend and coworker in Carroll County, Cindy Saxon. They are going to eat at the Lazy Donkey. She has also been asked, along with Katherine, to help in the crowning at the pageant on Oct. 1. It should be a fun thing for the girls. I just pray that she will not get too shy when it comes to going on stage. The lady who asked us to do this, Lawanna Musick, has been a steady reader of this journal. It is amazing how things have gone this last year.

Charles, Nancy, Katherine, and Sweet Caroline

ps - Caroline is still awake (11:15 pm) since she took a nap this afternoon for about 2 hours. She was sleeping so good, that I hated to wake her. I wish I had now.

Thursday, September 15, 2005 9:57 PM CDT

Well it is Thursday night and it has been one long day for the Johnson household. Of course we all began with school today. I had a football game after school (we lost) and then the girls were supposed to play soccer. Caroline did not get to play tonight due to a little problem with constipation (we believe from the antibiotic) and she did not feel like going to the game. Katherine had her first soccer game which did not start till a little after 7 and did not finish till after 8:30 tonight. We had to come home and the girls finished their homework and we ate. I hope these soccer game nights are not going to as long. Katherine's team did beat the Haralson county team by a score of 8 - 0 and she did score one of the goals. She was dead tired when she got home. I am so proud of her and how she gets out there playing soccer.

Well, hope that you have a great weekend.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, September 13, 2005 9:52 PM CDT

Katherine and Caroline are into their soccer. Katherine had a scrimmage last night and scored one of two goals for her team. Nancy called me from the field just hooping and hollaring about her scoring. She has so much fun playing soccer. Caroline had her practice tonight. She plays her first game ever on Thursday and I hate that I will have to miss the game. We (Temple Middle) have our first home football game on Thursday and I will have to be at the football game. Nancy will certainly take some good pictures. Katherine also has her first game on Thursday at the same time. Maybe Nancy's mom can go and watch Katherine. Oh the downside of being a principal.

I am still going to put some pictures of the Luncheon from Saturday. I just have to find the time.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, September 11, 2005 8:54 PM CDT

Time to update the site as usual on Sunday night. Just a few things to keep you up to date with Caroline and the Johnson family.

On Friday, we finally confirmed our Make a wish trip. We will be going to Give Kids the World and Disney World on November 25 to November 30. We got the official confirmation on Saturday in the mail. Everything we have heard about GKTW is that people enjoy this almost as much or more than the actual wish. You can check it out at www.gktw.org.

Nancy, her mother, and my mother went to the luncheon on Saturday, "A Tribute to Quite Heroes." They said that it was a wonderful event and that hearing Liz Scott was the highlight of the event. Liz Scott, is the mother of Alex Scott, who passed away last year. Alex had created lemonade stands to raise money for childhood cancer research. Her parents wrote a book, "Alex and the Amazing Lemonade Stand." Nancy came home with some nice gifts for the mothers. I think they need to do something for us fathers next year. I told Nancy that we are probably the quietest heroes.

Charles, Nancy, Katherine, and Sweet Caroline

ps. I hope to have some pictures of the luncheon up tomorrow.

Thursday, September 8, 2005 9:25 PM CDT

Caroline went back to school today. She was out yesterday with a pain in her ears. She went to the doctor yesterday afternoon and they said that she had fluid behind one ear and an infection in the other ear. It was strange, because her oncologist, Dr. George, looked at the ears on Tuesday and said they looked fine. We got an antibiotic and some drops to kill the pain. Today she has felt fine and even went to soccer practice. She also has started back on the accutane today. Oh what fun for the next 13 days.

We met with Caroline's teachers yesterday afternoon to review her IEP and create a new one. Caroline qualifies for Special Education under the status of OHI (Other Health Impairment). It has nothing to do with her mental ability and provides a means for the teachers to make modifications in how things are delivered. We had the IEP (individualized Education Plan) created last year to make sure that she would be able to get through Kindergarten while she dealt with the struggles of chemo and transplants. She did really good for a little girl who missed over half of her school year. Her teacher, Ms. Williamson, is very impressed by where she is academically. We just want to make sure there will be no major problems as we move on.

We talked with the Make a Wish people today. We had to decide which wish Caroline really wanted most. She has decided on the Disney World trip as oppossed to the Disney Cruise. We tried to get a week in October, but it looks as if we will probably have to go in November now. The issue that is driving when we will go is where we will stay. There is a place that is only for children who are part of some wish organization's plans for a trip to Orlando. It is called "Give Kids The World." It is supposedly almost as exciting as some of the theme parks. We will talk with our Wish Supervisor tomorrow and try to work something out for early November. They said we could go earlier if we didn't want to stay there. We'll keep you informed.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, September 6, 2005 9:09 PM CDT

We had a good visit to the hospital and the doctor's office today. Dr. George said that the preliminary reports were very positive. The last scan a couple of months ago showed an area of concern. Today they took extra pictures of her hip and according to the doctor, there was nothing showing up. He said when the final report comes in and if it showed anything different he would call us. He said that all of her blood work shows that there is nothing to be worried about. We will have scans done in 2 or 3 months again and this should be the normal routine for a long while. It is nice to hear the words from the doctor's mouth that Caroline looks fantastic. She did so well with them putting an IV line in her hand and then taking the contrast for the CT scans. She did everything like she was supposed to.

Pray for Ryan as he has his scans later this week. His counts were ok, according to his site. We are hoping that his scans are just like Caroline's.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, September 5, 2005 9:22 PM CDT

Well it has been a few days since the last update. I hope that you have had a great Labor Day. We went over to Nancy's mother's house tonight and we ate ribs and Crab Legs. I know that sounds like a strange combination, but when they closed the restaurant, they had a box of legs left over.

We had a busy weekend. The girls went to the Bremen football game with Nancy. I was at the Temple game. They had a great time and Caroline has found a new calling...being a cheerleader. She hung out behind the cheerleaders and did cheers with other little girls. She brought home an assortment of Bremen paraphanelia. I never will get the girls to wear Tiger stuff. On Saturday, we took the girls to their favorite restaurant, Tokyo Steakhouse, in Douglasville. Yesterday, Katherine came forward and made a public profession of her faith. We will have to get with my Dad to figure out when he can come up and do her baptism. Last night we had the annual church picnic. Today we just hung around the house till it was time to go over to Nancy's parents house to eat.

Please pray for Caroline in the morning. We have to be at Scottish Rite at 7:30 for Caroline's injection for the Bone Scan. They will have to insert and IV line in for this and while they are at it they will draw blood for Caroline's doctor visit in the afternoon. She then will have to drink contrast for her CT scans after the injection. They are supposed to do the CT at 11 am and then we have a doctor visit at 1 pm. It should be a fun day (not!). We are planning on leaving at 6 am. It will also be the first day of school that I will have missed this year. Not bad considering how many days I was out last year (63). We meet with Caroline's teacher and the Special Ed. teacher on Wednesday afternoon for her IEP meeting. I think we may have to make some modifications due to her struggling a little in school. It is not the academic part that she is struggling with, but some of the social aspects. I think that is due to her missing over half of the school year in Kindergarten. In the end, just please pray for Caroline. I am just happy we have her here to have to deal with these things. This is better than the alternative. Please pray for my second cousins, Luke and Anson Waddell. They both have Muscular Dystrophy and of course with the MD telethon each Labor Day, I think of their troubles and what their future holds.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, September 1, 2005 9:14 PM CDT

Well we finally have things worked out with Make-a-Wish. I talked with our wish coordinator this afternoon and sorted things out. We will go on our trip most probably the week of October 16 - 22. That is the week that the girls are out of school for 2 days and it is also the week of Caroline's birthday. What better way of spending her special day. We had a choice of flying or driving and I chose that we would fly. I think that is better than having a 9 hour drive. They will call me back next week with the confirmation of our trip.

Caroline's scans are next week as is her time to start back on the accutane. It is so nice to be off of this drug for 2 weeks. She gets very cranky when she takes it and it really does a number with the skin on her hands and feet. Just pray that the scans come back negative. She still sometimes has a pain in her hip and occasionally will limp. She may just need some good physical therapy. Just pray for her and us. This morning she woke up upset and wanted me all morning. I had to go to work. She was so upset that Nancy had to go in with her and stayed till after lunch. She didn't even get to take a shower first. Nancy is such a good mother, but it really burns her out when Caroline is so clingy. Pray for Nancy too.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, August 31, 2005 9:54 PM CDT

I mentioned last night about our problems with the Caroline's wish and finding out about it. Well thanks to our Social Worker at Scottish Rite, Tracy, I finally got some information. It seems that our wish coordinator has been out of town for the last couple of weeks and they were supposedly waiting on a form from our doctor. Well, the form came after the coordinator went on vacation and she will be back in the office tomorrow. I have been told that we will be her number one priority. It is too late for the last date that we had chosen, so I had to send in more dates to choose from. We submitted 3 different dates in October. Hopefully it will work out for us then. It is amazing how our Scottish Rite people work to help us out. There are no better people.

We got a call today from Caroline's dentist. Caroline is in need of having some of her front teeth pulled and the dentist talked with AFLAC/Scottish Rite today and they told her that they have their own dentist who handle cancer patients and know of the needs they have. We will be finding more out about this. Our dentist wants to do cleaning on Caroline every 3 months now and she even told Nancy today that she would provide for the ones that our insurance do not cover (usually 2 a year). She is really a great dentist.

Please remember to pray for those in the gulf coast. It is so amazing to see the devastation. Also the man killed in Carroll County due to his chicken houses falling on top of him was the son-in-law of one of my former teachers at Crossroads and the brother-in-law of one of my teachers at Central Middle. He was the father of 3 children and everything I have heard about him was great. He will be missed. Pray for their family.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, August 30, 2005 9:54 PM CDT

Well Caroline got a big disappointment today. Someone called from the Rec. department and told Nancy that Caroline had been put on the wrong team for Soccer. Instead of the red team that she practiced with last week, she was supposed to be on the green team. I don't know why they gave us the wrong information, but when Nancy told Caroline this, she said that she didn't want to be on the green team, she wanted to be on the red. I went by the rec. department after I got off work and they told me that it had been their mistake and that all of the teams needed to be equal. I don't know if I totally buy that explanation, but sometimes things happen for a reason (I know that personally). I explained to Caroline that she would enjoy being on the green team and maybe there would be people that she knew that would be on that team. I told her that maybe she would get more playing time and some other stuff. I think she is ok with it now. I hope? She has practice on Thursday afternoon. Katherine had practice tonight. Nancy said she did real good. She will have to miss Thursday's practice. She is going on a field trip to see Phantom of the Opera at the Fox. She won't be home till about 6 or 6:30. She is excited about it. They have been watching the movie in their chorus class this week.

We are wondering about our Make-a-wish trip. We gave them 3 dates and the last date we gave them is coming up the week after next. We have not heard anything from them and I have even sent them an email. No word. We just would like to know something so that we can make proper plans. I have several events at school that are on standby and we need to make arrangements with the schools for the girls. It would be nice if it were not so up in the air. Pray that we hear something soon.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, August 28, 2005 9:20 PM CDT

We hope that you had a great weekend.

Now to update you on everything since Thursday.
Katherine went to a sleepover on Friday evening. She was with about 8 or 9 other girls at a friends house. She had a pretty good time. They swam that evening, which Caroline was not too happy about. The nice thing though, the girl's mother invited Caroline to participate and swim. She felt like she was one of the girls.

Yesterday we tried a new thing. Nancy and I went with our Sunday school class to go out and eat. Nancy's mother was in Carrollton doing a wedding reception and she was planning on watching the girls for us. Well, things ran a little long and she was not going to be back when we left. Katherine watched Caroline for about an hour till Nancy's mother got back. We felt that Katherine is getting to the age where she should be able to baby-sit her sister. We felt like this might be the perfect opportunity to try it (we were only about 15 miles away and Katherine called us a couple of times on the phone). She is growing up.

This afternoon, Katherine and I went and met with our pastor. Katherine has invited Christ into her heart and we met with the pastor for him to go over the plan of salvation and make sure that she understood what this all meant. Pray for her next Sunday morning as she makes a public profession of her faith.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, August 25, 2005 8:25 PM CDT

Hope things are going well for all of you.

Caroline finished her third round of accutane last night and now has two weeks off. She is battling an ear infection in her left ear. This afternoon she went to the dentist and she is having some problems with her top two teeth. Dr. K told Nancy that she wants to talk with Dr. George to make sure that she can take out the top two teeth. She also wants to put sealants on her 6 year molars. She did say that her bottom teeth are looking pretty good.

The girls had soccer practice tonight. Caroline had practice at about 5:30 and did pretty good. She gets tired fairly easy and she has been laying on the couch since we got home from Katherine's practice. Katherine's team had their first practice tonight. The girls are both enjoying getting to play.

We are still on for scans on Sept. 6th. Caroline will have CT scans and a bone scan on that day and then we will see Dr. George. She has complained occasionally of her hip hurting and does limp a little when she runs. Hopefully this will not be a problem.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, August 23, 2005 7:20 PM CDT

Hi again! Me Katherine here! Now here is the latest and greatest news of the evning. Today seemed like a normal day around the small town of Bremen or was it?! I'm just kidding! Today was a normal day. My dad said I have to write alot tonight instead of a little bit like I usally do. I gave in and now I'm going to write alot! Ha ha ha! Anyway, today I went to school and so did Caroline. Of course! Oh but today Caroline went to the doctor and she has a tiny ear infection. It's not bad so don't go running around town yelling your head off. That would be embarrasing. Also today Caroline had her first soccer practice. I was going also until it rained! I really wanted to play!

well, I guess this is long enough for tonight!Maybe I'll write again tommorrow!

Sweet Caroline and Krazy Katherine!!! :)

Sunday, August 21, 2005 9:48 PM CDT

My apologies for not updating since Thursday evening, but I have had a busy weekend.

On Friday morning, we went to a special ceremony at Caroline's school. My parents and Nancy's parents were there also as the school dedicated their first ever yearbook to Caroline. They did a wonderful powerpoint presentation showing things that went on at school last year and then about the last third of the presentation were pictures about Caroline and then announced that the first yearbook was dedicated to her. They asked for her to come up front, but she was too shy and Nancy had to go get her. We went up and they presented a book for us, Caroline, and for both of the grandparents. It was such a sweet ceremony. Jones Elementary has done so much for us and we thank them for providing such a warm and caring environment for Caroline.

We continue with the Accutane. We have 3 more days of medicine and boy will we be glad this round is over. It is amazing how that last round, Caroline's feet were peeling and hurting so bad. This round it is her hands that are peeling and hurting. She remains extra-emotional.

Pray for the girls tomorrow as they start Soccer practice. Both have practice at 5:30 at different locations. Nancy will have to drop Katherine off and go with Caroline. Temple Middle has a softball game tomorrow at Central Middle in Carrollton, so I will be there. Caroline has waited a whole year to get to play. Last year she was signed up to play, but never got the chance to play. I just hope that she can do all the running that is required. We'll keep you informed.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, August 18, 2005 9:29 PM CDT

I hope you got the chance to hear Caroline on the radio. I think she said 3 or 4 words during our interview by Clark Howard. It was fun to do this. The care-a-thon continues through 6 pm tomorrow night. So far they have raised about $350,000. The money goes to the AFLAC cancer center at Children's HealthCare of Atlanta. Clark Howard is really a fun guy and played around with Caroline real good. Before we started the interview, she was ready to talk and carry on a conversation, but as soon as we went on the air she got real quiet. She did mention Katherine and her Mommy on air and when Clark asked who would be the better soccer player, she answered "me."

We did get to see some of our favorite nurses while at Egleston. We saw Dr. Haight and she said she was really impressed at how well Caroline looked. Dr. George was there at Egleston today and we saw him. We saw our two primary nurses, Ann and Tammy. They just hugged all of us and couldn't get over at how well Caroline looked. It was like a sweet homecoming. Those nurses took such good care of all of us while we were there for the transplants. What was funny was that Tammy had a conversation with Dr. George about an hour before we got there about Caroline. She said that she had asked him how she was doing and how she looked. We startled them when we came up. Tammy told us that she had mentioned us to a family earlier in the day when she talked about how Nancy had brought her coffee maker to the hospital. Amazing how things work out.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, August 16, 2005 9:26 PM CDT

Caroline has not had good mornings the last two days. She has gotten to school on both days and refused to go in. She has told Nancy that she is scared and yesterday Nancy took her back home for an hour or so and then convinced her to go to school. This morning, she did the same thing, but Nancy got her to walk in. She went in with her and stayed at school till about 9:30. She said she did not even have her make-up on. This morning, Nancy met with Ms. Williamson and they talked with Caroline. We think that maybe she is a little overwhelmed with the procedures of school. She is doing well academically, but seems to not be doing to hot on following the procedures. I wonder if it is due to missing over half of the year of Kindergarten and the fact that she is in a different place (First Grade). I know that she will get the hang of it. We are trying to schedule her IEP meeting and hopefully will be able to work out some modifications that will help her out. Please pray that she will go in with no problems the rest of the week.

Katherine is doing good in school. She is catching on with the math and got a good grade in Social Studies (the teacher used her map as an example for other students). She says she doesn't like school, but not many 6th graders will confess a true love for it.

Don't forget to listen to WSB 750 AM on Thursday at 5:36 PM. We will be doing a live interview for their Care-a-thon to raise money for the AFLAC cancer center. They doing it this year at Egleston and we hope to get to see some of our favorite nurses and doctors. Even though Caroline is a Scottish Rite patient (Dr. George), she has spent more time in the hospital this last year at Egleston than any other place (surgery and transplants).

My sister in Valdosta mentioned the following information, that people outside the ATL can listen to WSB Radio by visiting their website wsbradio.com and select the listen link on the left side of the screen. High speed internet connection will be better than dial-up, but they will both work. It is a live streaming audio feed of the station. Ihope that you will listen in, not just on Thursday afternoon.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, August 14, 2005 8:41 PM CDT

I hope things for you have gone well over the last few days. Everything is going ok here. Caroline started back on the accutane on Thursday. We almost forgot about it. Nancy called me at work on Thursday morning and said that she had forgotten and I also had forgotten to get the prescription filled. No problem, Nancy took the pills to the school and she took her first dose. The sores around the mouth have already started and her face has a few dry places. Oh the fun of accutane. Only 3 more rounds after this two week period is over. We took the girls over to build-a-bear yesterday. Caroline got the new giraffe and she has named it Peter. Peter went to church with her this morning. It seems that every time that a new animal or bear comes out, we have to get it. It was funny how the manager knew who we were and we shocked the girl at the checkout when we gave her 8 $10 coupons to pay for the bill. You get a $10 coupon for every $100 you spend there when you are a member of their "Stuff for Stuff" club.

We got a call on Friday that Caroline and I have to be Egleston on Thursday afternoon for an interview on WSB radio (AM750). They have their care-a-thon for the AFLAC Cancer Center. We are scheduled to go on for our interview at 5:36 pm. We will get there early enough to see our team that looked after us during the transplants in January and February. It would be great if you could make a donation during this time to honor us. Please listen and tell others about it. It lasts for 37 hours on Thursday and Friday.

Please pray for me this week as I have been asked to sing a solo at church on Sunday morning. I still am not sure what I will sing, hopefully I will decide before Wednesday. It is an honor to be asked to sing, so I want to choose the right piece of music. I also have been asked to sing a duet in a wedding in September. I was given the music this afternoon and boy does it look hard.

I forgot to mention that Caroline started the afterschool program on Thursday. She will be going 2 days a week. She wanted to do this and she has a blast. At first, I thought there would be no need for her to go, but she wanted to spend time with some of her friends and it only costs $18 a week to go 2 days. Why not?

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, August 11, 2005 8:41 PM CDT

Hello. It's me, Katherine again. Caroline is doing really good in school. She really loves it a lot. I sort of like school. Middle school is new for me and it was really scary on the first day but I got used to it. Zzzzzzzzzzzzz............... huh? Oh! Sorry I dozed off for a second! Well, I guess I should go to bed now!

Bye! Katherine and Sweet Caroline

Thursday, August 11, 2005 8:41 PM CDT

Wednesday, August 10, 2005 10:36 PM CDT

Well another day or so has come and gone. The girls are continuing to enjoy school. Caroline has decided that she wants to go to the afterschool program and we are going to let her go a couple of days a week. Something wonderful was noticed tonight. Caroline's hair is starting to lay down instead of sticking straight out. The only thing she said about it was that it made her look like a boy. It is cute and it makes her look so adorable.

Please pray for Ryan. If you check his website out (http://www.superryan.blogspot.com/), he did not get a great MIBG scan result back. There may be some enlargement of his liver going on.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, August 8, 2005 9:21 PM CDT

The girls had another good day at school. Caroline's teacher, Mrs. Williamson, told Nancy today that Caroline is doing good and is where she needs to be. That is pretty good for a girl that missed over half the days for Kindergarten last year. She really enjoys school. Katherine also had another good day and she is really enjoying middle school. Hopefully this will continue. We are waiting for Thursday, as Caroline starts back on Accutane and this will be her third round. She is just getting back to normal with her skin and her feet not hurting. Please pray for her as she starts back on this.

Please remember to continue to pray for Ethan's family. It will be these next few days that will be the toughest.

A quick note, if you have been saving the can tabs for us, we no longer need them, but you can save them for the Ronald McDonald house and they will take them. Thanks for all those that you gave us.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, August 7, 2005 9:39 PM CDT

My apologies for not updating since Thursday evening. Things are going well around here. The girls had a great first day of school and go back tomorrow. On Saturday, we took the girls to my parents, while Nancy and I went to Ethan's funeral. It was such a precious and sweet service. Chris and Julie are at such a peace about this and it so inspiring for us. They had more words of comfort for us than we did for them. They related how much at peace Ethan is and not feeling any pain. The service lasted for about 30 to 45 minutes and had singing and pictures of his life and their pastor spoke words that Chris had written for the event. After the service, we all went outside and released hundreds of purple balloons. Purple was Ethan's favorite color and it was touching. We saw several of our extended cancer families there. Ryan's parents, Les and Missy Morgan were there as was Jack's(Campjack) mother, Jen, Gwen's mom and dad, Ben and Tabitha Mason, and Brandon Connor's parents. We were all Neuroblastoma parents who were connected with Ethan (Ryan's, Gwen's, Ethan's parents and us were all together during transplants). Ethan was Wilm's tumor. It didn't matter what the type of cancer, just that we all are connected together. My prayer is that we find a cure for these horrific diseases soon. That is why it is so important that we join together to find a cure. I encourage each of you to give something to groups such as Curesearch that are trying to find a cure.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, August 4, 2005 9:20 PM CDT

Well tomorrow is the first day of school for the girls. They are excited and a little nervous. Caroline has decided to start wearing her glasses again (actually for the first time). She got the glasses last year just before she was diagnosed with cancer. She put them on today and said she could see better and she decided that wearing them might be a good idea. She has worn them all evening.

We were asked yesterday if our family would be the grand marshall for the West Georgia Fair Parade in Carrollton on the evening of September 26. This is a big parade in Carrollton and the lady who is in charge has kept up with this website. When she asked me yesterday, I had just found out about Ethan and was a little upset. When I told her that we had gotten word that one of our little friends had passed away, she immediately asked if it was Ethan. It is an honor and we honor all of those who have childhood cancer and those who have gone on to be in heaven.

I am inserting information about WSB radio's Care-a-Thon. We have been asked to be a part and either record our story or we will be live on the radio. Below is the information that we were asked to share on our website. All the money raised from this goes to the AFLAC cancer centers at Egleston and Scottish Rite.

The fifth annual News/Talk 750 WSB Care-a-Thon benefiting the Aflac Cancer Center and Blood Disorders Service of Children's Healthcare of Atlanta will be on Thursday and Friday, August 18th and 19th.

This 37-hour marathon broadcast features stories of hope and inspiration from Aflac Cancer Center patients, families and staff. With the help of WSB special hosts Scott Slade, Neal Boortz and Clark Howard, the annual Care-a-Thons have raised more than $2.3 million for the Aflac Cancer Center at Children's.

Recognized as one of the top three pediatric cancer centers in the country by Child Magazine, the Aflac Cancer Center is one of the largest childhood cancer and hematology programs in the country, serving infants, children, adolescents and young adults with cancer and blood disorders. Staffed by a multidisciplinary team of pediatric cancer specialists, the Aflac Cancer Center provides advanced and innovative diagnostics, clinical care and research options as well as unique services such as the Cancer Survivor and Blood and Marrow Transplantation program.

With your support, you are moving us closer to a future free of childhood cancers and blood disorders. Make a donation online to the Aflac Cancer Center and Blood Disorders Service.

Mail in your donation (checks made payable to Aflac Cancer Center) to:

News/Talk 750 WSB Care-a-Thon
Children�s Healthcare of Atlanta
1687 Tullie Circle NE
Atlanta, GA30329

Thank you for making the difference in the life of a child!

Please remember the Alain family this weekend. The funeral for Ethan will be Saturday in Newnan at 2 pm. Nancy and I are going and I know several other cancer parents will be there. We all support one another. One of the other families from the transplants, the Masons (ga/gwenmason) called us last night as we were working to find out details of the funeral. I still remember the weekend when Chris (Ethan's dad), Ben (Gwen's dad) and I sat outside our children's rooms till around midnight talking about our experiences. I remember the nurses telling the mothers that we were all having too good a time without them that weekend. Pray for Ethan's mom Julie tomorrow as she has a birthday. I am sure that it will be a hard time for them.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, August 3, 2005 9:43 PM CDT

Please pray for the Alain family today. Ethan passed away early Wednesday morning. I got an email from a teacher who used to work with me. Her brother is their pastor and she wanted me to know that Ethan went to Heaven. Everytime that I think about this, I feel so much like crying. I think of all the smiles that Ethan had on his face while we were all together at Egleston during both transplants. I just want to hug Chris and Julie and tell them that we are here for them. It makes me think of Caroline's own mortality. Just pray for them and drop them a note at their website (/ga/ethan). Now he has no more pain.

The funeral for Ethan will be at 2 pm, Saturday, at the Crossroads Church in Newnan. If you would like to donate in Ethan's name, they are asking for donations to either Cursearch or the Lighthouse Family Retreat.

Katherine and Caroline both went to visit their schools today. Katherine got her new locker and found out what her schedule is. We also got the copy of her CRCT scores from the spring. She scored in Level 3, Exceeds, in all 5 areas. I am really proud of her. Caroline found out that she will be in Mrs. Williamson's room for 1st grade. This was also Katherine's 1st grade teacher. How strange things work out, in that Caroline's Kindergarten teacher was also Katherine's. I wonder if that is how things will continue to work out (no). Pray for Caroline as she starts back and that she will be able to do everything she needs to do.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, August 3, 2005 4:13 PM CDT

Please pray for the Alain family today. Ethan passed away early this morning. I got an email from a teacher who used to work with me. Her brother is their pastor and she wanted me to know that Ethan went to Heaven. Everytime that I think about this, I feel so much like crying. I think of all the smiles that Ethan had on his face while we were all together at Egleston during both transplants. I just want to hug Chris and Julie and tell them that we are here for them. It makes me think of Caroline's own mortality. Just pray for them and drop them a note at their website (/ga/ethan). Now he has no more pain.

Charles

Tuesday, August 2, 2005 9:42 PM CDT

Caroline went to the doctor today and said that she looked fine. He told us that we need to keep an eye on the hip and if the pain changes or becomes more intense, then we need to let him know. Dr. George checked her hip out and said that he did not feel anything. We will have a new CT and a new bone scan done on September 6th to see if there is anything there. Last time she complained of pain, 2 months ago, it was on the opposite side of her hip. They had to stick her 3 times before they got any blood. We didn't hear anything about the blood, so I guess no news is good news. I did not go today and was at work (2nd day of school) and I understand that Caroline was crying out that she wanted me when they were sticking her. When they do the CT next month, Dr. George wrote orders today that they are to do an IV on her and then draw the blood at the hospital (so it will be an easy Dr. visit afterward).

The girls go to visit their schools tomorrow. Bremen begins school on Friday. Nancy and I went and met Katherine's 6th grade teachers late this afternoon. Caroline gets to meet her teacher in the morning. It will be nice for her to get to go to school on the first day this year after missing the first day last year.

We got a call this evening from one of the ladies in town. She told Nancy that her grandson and another boy and girl decided to have a lemonade stand. We don't know how much money they raised, but they told his grandmother that they wanted to give the money to Caroline. The grandmother was so touched by this that she wants to bring the kids over and give it directly to her. They did this on their on, without anyone telling them what to do. All 3 of the kids are about the same age as Caroline (6/7) and go to school with her.

Remember Ethan (ga/ethan) in your prayers.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, August 1, 2005 10:55 PM CDT

Well the first day of school for me is over. It was probably one of the best first days of school I have had. I was proud of my teachers and the kids did great. I had several teachers come up and tell me that this was one of the best school days that they had taught. Only 179 more to go and this year will be over.

Please remember Caroline tomorrow. She has an appointment with Dr. George. It is her regular monthly checkup and they have to draw blood. Last month, it was this process that took the longest and they had a hard time getting a good vein. She was complaining about a pain in her hip again tonight. She said it was hurting and it was sensitive to the touch. This was something that was hurting a couple of months ago and is where there was a dark spot on the bone scan. We are supposed to have new scans ordered sometime this month.

Remember Ethan in your prayers.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, July 31, 2005 10:27 PM CDT

Hello again! It's Katherine again! Thank you for the comments. Really my Daddy is the better writer I should say. Anyway, tonight our cousin, Amber Stone, is spending the night with us. So far so good. Caroline is doing great too. Everything seems to going well. I have to say that I really love posting on here. It is fun! I hope to post more in the future. Well, I have to go, we are about to watch a movie.

bye,Daddy,Momma,Katherine, and Sweet Caroline

Saturday, July 30, 2005 10:28 PM CDT

I would like to thank Katherine for updating the page the other night. It made her feel very special and she enjoyed reading the comments in the guestbook. She will update again tomorrow night. It is nice to get the perspective of the older sister. Of course, I am not worried about the competition in the writing department. Y'all probably like her a lot better since hers is a little shorter than mine. She is really maturing well and loves and cares for Caroline deeply.

The girls and Nancy went out to eat for lunch with their grandmother yesterday. They visited the Lazy Donkey. That is not fair, since I was at work and did not get to go. Nancy and I went out last night and ate in Carrollton. Today the girls played around the house and stayed in their pajamas all day. I guess a rainy Saturday is a day you can do that on. I went over to Fayetteville and visited J & R Clothing (family connection) and bought some back to school clothes for me (work clothes). School starts Monday and I am really proud of my staff and I think we will have a great year. We have a lot of work to do. It feels funny that I have parents in the school who were former students of mine. A lot have come up to me and told me how they are glad that I am there. I hope I can live up to the expectations. I am confident that with guidance from God, I can. My mother drilled in my head a bible verse while I was growing up. "I can do all things, through Christ who strengthens me." I have never been able to remember the verse and I might have paraphrased it, but it was on my bedroom wall as a boy and my mother constantly told me this growing up. Amazing what sticks with us.

Caroline is feeling better these last few days since she has come off of the accutane. She has been feeling sick a few times in the morning. Nancy said that yesterday morning she was as white as a ghost. Hopefully this is just lingering effects from the accutane.

Please continue to pray for our friend, Ethan Alain. He has gone on hospice care, as his cancer is progressing faster than it can be treated. He is such a sweet boy and his family is one of the nicest. We could not have made it through transplant without them. We encouraged each other. Visit his site (/ga/ethan) and let them know you are praying for them and for God to give them peace.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, July 28, 2005 8:18 PM CDT

Hi! It's me, Katherine. I'm posting tonight.

Caroline is done with her pills for a few days. She is so funny too! (Don't worry my Dad said I could post tonight) I'm ready for school and so is Caroline. I can't belive she's going into 1st grade! Caroline picked out a cute backback and luchbox. Caroline is in the tub right now and I don't know what to post! anyway.......... Caroline is the best sister in the Universe. I couldn't live without her. She signed up for Soccer just like me! I can't wait to start soccer! I bet Caroline can't ethier. Well, gotta go!

bye, Daddy,Momma,Caroline,and Katherine

Tuesday, July 26, 2005 10:10 PM CDT

A big happy birthday to my sister, Terri Dumas. She turned 36 today. I still remember going to Atlanta, riding in the back of my grandfather's car and holding her as we came home from the hospital.

Caroline has only one day left with the accutane. Her feet have seemed to have gotten better and she has complained less about them. She still has dry skin and some sores on the edge of her mouth. Of course these will start to go away during the 14 days she will be off of the accutane before we start the 3rd round.

We started back with teachers today. I think I am going to have a good year and my teachers seem to be very enthusiastic about the new year. Carroll county students start back on Monday of next week and the girls start back at Bremen on the following Friday. We went last night and bought school supplies. We decided to go ahead and do it before the sales tax holiday so that we wouldn't have to deal with the long lines. We spent nearly $200 just on supplies (with a few clothes thrown in). Having 2 in school is more expensive. Last year, Caroline missed the first few days of school as she was recovering from her first round of chemo. We are confident that this year will be a lot better.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, July 24, 2005 9:13 PM CDT

Things are going well here at the Johnson house. Caroline has 3 more days of Accutane to finish her 2nd round (only 4 more to go). She will be off for 14 days, starting on Thursday. She is peeling and has very dry skin. We have to put liberal amounts of lotion on her and her feet are causing her a lot of pain. She has had big blisters on the bottom and her skin has been peeling extremely bad there. We took the girls shopping for back to school clothes yesterday and she kept asking for a little buggy. We found out that by the time we were finished, she was almost in tears from the pain in her feet. We took the girls to eat at Longhorns after we finished. Please pray that her feet will get to feeling a lot better. We held off her going to church this morning due to the fear that she would get upset with the pain in her feet and might cause a scene.

Please pray for one of our friends, Jamie Payne, who had an accident in her kitchen earlier this week and has some 2nd degree and 3rd degree burns. She was in Augusta earlier in the week and will have to undergo several skin grafts. She taught preschool with Nancy. Her husband, Tim, heads up our men's quartet at church and sings bass. He said this morning that she is in a lot of pain.

Continue to pray for Ethan Alain. He is at Scottish Rite and has an infection. According to their website (ga/ethan), he is upset about being back in the hospital. You may remember he was our next door neighbor at Egleston, during both the first and second stem cell transplants. Visit their site and leave some words of encouragement.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, July 22, 2005 9:20 PM CDT

Caroline and Katherine went to a fun birthday party tonight. It was a swimming party for Katherine's best friend, Alli. They had a dunking booth and as soon as they got there, Caroline was quick to get in line to get dunked. She loved gettin in, till she hit her back on the seat as she fell in. I think she enjoyed dunking others more. She especially loved dunking Katherine. She got lucky a few times and hit the target with the ball, but a lot of times she went up and hit the target with her hand. They had a good time.

We are putting a new link at the bottom of the page. It is called the "Tribute To Our Quiet Heroes" a
luncheon for mom's with kids who have cancer." If you go to the site it tells you about the luncheon which will be on Sept. 10 in Atlanta. There will be two main speakers at the event. One is the mother of Lance Armstrong and the other is Liz Scott, mother of Alex Scott, Founder of Alex's Lemonade Stand. We would like to thank Mary Sellers, who is getting tickets for Nancy. If you would like tickets or would like to be a sponsor, the details are on the site. The luncheon will benefit Curesearch, which is the fundraising arm of the Children's Oncology Group. This is the number one fundraiser for childhood cancer research. If you read the article that is on Ryan Morgan's website, you can see the importance of this group.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, July 21, 2005 9:19 PM CDT

Well we today are 1 year + 1 day since diagnosis. We went out this evening and celebrated by going to one of Caroline's favorite restaurants, Tokyo Steakhouse. It is a blessing to still be going after all we have been through this past year. Caroline is still on her accutane. She still has 6 more days on this cycle and then she will be off the drugs for 14 days. She has 4 more cycles after we finish this one.

On the pictures of my mother on the motorcycle, she did ride on the bike. It took much goading by me and my sisters to get her to stay on behind my dad. The picture of my grandmother was staged, as she would not ride. Dad took all of the grandkids on the bike also.

If you get a chance, go to Ryan Morgan's website and read the copy of the article about childhood cancer from USA Today. The site is www.superryan.blogspot.com. The article talks about how there is such little research into new drugs for childhood cancer.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, July 19, 2005 9:38 PM CDT

Tomorrow will be a year since we discovered that Caroline had cancer. We have debated on how to handle this day. We discussed whether or not we should do something or not. We basically decided that since I have choir practice tomorrow night at church, we will do something on Thursday night. We asked Caroline whether or not she would like to go to the Japanese steak house or not and she said she would. It is hard to believe that it has been a year since we started on this journey. She has gone through 5 rounds of chemo, surgery, 2 stem cell transplants, 14 days of radiation, is on the 2nd round of 6 of accutane, spent 93 days in the hospital, many days at the clinic, several scans, and missed over half of the school year. That is a lot for a little 6 year old girl to have gone through. She has amazed all of us and we praise God for what he has done for her. We appreciate all of the prayers that have gone up for her. We ask that you continue to pray for her and us. Also continue to pray for all of our friends who continue to go through this terrible disease. Please remember to pray for Ethan.

This morning, Nancy took the girls for their dental checkup. Katherine's teeth were great and Caroline's front teeth are getting loose. If they don't come out within the month, the Dentist wants to talk with our doctor to see about pulling them out. They want to make sure that they don't cause an infection.

Please pray for me as my teachers come back a week from today and my students come back on Aug. 1. It will be a good year and I have confidence that we will have one of the best school years ever.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, July 17, 2005 11:05 PM CDT

Well we got home at about 8 pm tonight. We spent 4 nights in Jekyll Island, Georgia and then spent 4 nights in Flagler Beach, Florida. We had to come home today, so that I could get school ready to start 2 weeks from tomorrow. Caroline and Katherine both had a great time, but were glad to be coming home. They couldn't wait to get home to see their dogs and cat. I heard that it has rained every day since we left. We had great weather, with only an afternoon shower or 2 while we were in Florida. Caroline was like a little fish. At first, she wore her little floaties around her arms to help her swim, but after we got down to Flagler, I convinced her to take them off and swim without them. It is hard to believe that it has been almost a year since she was diagnosed with Neuroblastoama. We had such a great time last year and she learned how to swim while we were at the pool in Flagler. I guess it took going back to the same place to remind her that she could do it. She spent most of the time swimming back and forth, from one end of the pool to the other. Katherine did a great job of keeping her sister company and swimming like a fish also. While we were there in Florida, my Dad was sporting his brand new motorcycle and the girls for a ride, along with their cousins. I think I may have caught the motorcycle bug and might have to get one. I have to convince Nancy about that one. I think it would be neat to drive to school. Check out the pictures on the album pages of my dad with my mom and with my grandmother on the back. Don't get mad at me for calling my mother, "Big Mama." She actually said those words and my dad asked me to post the pictures so all of her buddies could see her and also so that my grandmother's WMU buddies could see her on the back of a bike.

Hope you like the picture at the top of the page. I will update with a few more pictures later in the week. I am tired, so I am off to bed. Please pray for my parents and my sister's family as they are traveling back home on Monday.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, July 8, 2005 10:19 PM CDT

We had a good visit to the clinic this morning. Everything went well, except for the drawing of blood. It took a while to get this done. Caroline had her lines removed a couple of weeks ago and this was the first time that she has had to be stuck to get blood since she was first diagnosed, about a year ago. The first problem was getting her to let us see her veins. When she finally agreed, the nurse could not get any blood out of her left arm. We then saw Dr. George, who was amazed at how well Caroline looked. She asked her favorite question again, when can she get a new pet? He told us today that once she has been 6 months out of transplant, she can have a pet. That means August 23rd. It is hard to believe that it has been almost 5 months since she had her 2nd transplant. He gave us our script for the 2nd round of accutane and then another nurse came in and finally drew blood out of her right arm. They didn't call with any results of the blood, so hopefully all's well. Please pray for us this next week as we are off to Jekyll Island for a conference (GAEL) and then Wednesday we are off to Flagler Beach, above Daytona. We might be able to update the page.

We got some news today that was not good. Craig Lovin was a teenager who had Leukemia, and was having his Bone Marrow transplant the same time that Caroline had her 2nd stem cell transplant. In fact, he was in the room that we were in for our first transplant. He passed away yesterday. I believe that he was 17 years old. Please be in prayer for his family at this time. Also, don't forget to pray for our other friends with Cancer. Remember Ethan Alain at this time.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, July 6, 2005 9:03 PM CDT

Well we are counting down the days till we go on vacation. The girls are excited and hopefully things will go well. Last year about this time we had no idea that Cancer would enter our lives. The girls have been playing around the house and also playing with their cousin, Amber.

We go back to the doctor on Friday morning and please remember Caroline. She no longer has her lines and will have to be stuck for them to draw blood. This is the down side of having her tubes removed. They will put a numbing cream on her arm and then stick her.

A special prayer request. My former Principal, Denzil Rogers, who is now principal of Villa Rica High, had a heart attack while vacationing in Michigan yesterday. The doctors did two stints and angioplasty yesterday and then today they were putting another stint in. He had 100% blockage in one artery and 80% in another. Mr. Rogers has played a major influence in my professional life and has been like a father to me. They are not sure about when they can get him home. Please pray for him.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, July 4, 2005 10:36 PM CDT

Well we are back home tonight. Nancy and I got home at about 8:30 pm and my Mom and Dad brought the girls home at about 9:30 pm. We all had a good time and seem to be well rested. Now we have to get ready to go on vacation this next week. The girls went fishing and caught about 4 fish (2 each) and then at church yesterday, Caroline decided at both services that she would sit with her Papa in his lap up on the pulpit. My mother tells of a young boy that she had to chase around my father's legs during a sermon (I think this occurred about 35 or 36 years ago, I don't know who that could be). The girls went to a parade this morning and had a good time. Caroline said that she saw someone riding a small motorcycle and that she wanted one. I think we'll wait a while before we ride motorcycles (she has yet to master the bike with no training wheels). Friday we have an appointment with Dr. George. It will be a check up and also he'll give us new scripts for the second round of accutane to start next week.

We hope that you had a fabulous 4th and remember to pray for our friends with Cancer, especially Ethan Alain.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, June 30, 2005 10:12 PM CDT

Today, Caroline pulled off her bandaid that was covering the place where they removed her tubes last week. Now she has nothing except for scars to remind us of the ordeal that she has gone through for the last year (that is external attachments). She of course still is growing hair, has peeling skin, sores around her mouth, a bruise here or there, and a spunky spirit. We thank God for what he has done in these last 11 months. We went out and ate at the Lazy Donkey tonight (our weekly Mexican haunt) and we discussed how would we celebrate July 20th. July 20th was the day we discovered a new word for us, Neuroblastoma.

Please continue to pray for Ethan Alain (../ga/ethan). Check out their site and leave them a message of encouragement. It appears that there will not be much they can do to try to cure the cancer, only try to manage the pain and try to control the growth and spread of the tumors. He is such a sweet boy. While we were at Egleston, we would play bingo in our rooms (by TV). We had a practice of opening the door and hollaring out Bingo so that the other would know who had bingo. My favorite memory of this would be him continuing to scream out bingo continuously as the game went on. I am hoping that may he will get bingo and win again, this time in his fight. Please pray that God will give their family peace and strength in the days ahead.

We will be away from the computer for the next 2 or 3 days, so we probably will not be able to update till Monday. If we can upate any earlier, we will.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, June 29, 2005 10:04 PM CDT

We are almost through with the accutane, as she takes her last pills in the morning. When she had the surgery to remove her tubes, she had to miss the dose for that morning, so it shifted us to finish up tomorrow morning. We will have 14 days off and then start up again. We go back to the doctor on Friday the 9th. The girls are excited about this weekend. They both are going to stay with my parents from Friday thru Monday. Nancy and I are going out of town with her parents and her sister and her husband. After talking with my mother, i'm not sure who is most excited about the girls going, them or her.

A reminder to continue to pray for Ethan, as his tumors have returned (www.caringbridge.org/ga/ethan) and also for my 13 year old cousin, Betsy Harper (lymphoma).

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, June 28, 2005 11:00 PM CDT

Greetings to you . It seems that during the summer I am not updating each and every day as I have done during the school year. Caroline is doing good and continues to do so. We have only 1 more day of accutane and she will be through with the first round (only 5 more times). She will be off the medicine for the next 14 days and hopefully will stop with the peeling and mouth sores.

I have a couple of prayer requests. First please pray for our friend Ethan Alain. He was in Egleston at the same time as we were and had his stem cell transplants at the same time. He has Wilms Tumors and his cancer has returned again. This makes at least the 3rd time that the Cancer has come back. Their family is taking it pretty hard now and they are such a sweet family. You can visit his caringbridge site. His address is the same as ours just put in ethan instead of carolinejohnson.

Another request is for the family of one of my cousins. Her name is Betsy Harper and she lives in Asheville, North Carolina. She is 13 and has just been diagnosed with Non-hodgkins lymphoma. I spent a little time on the phone with her father, Russell Harper. He is a presbyterian minister. He and my mother are first cousins. We had not talked to each other since I was about 10 or so. It was good talking to someone about going through things that a father of a cancer patient deals with. They will have a website up soon and I will give you the address as soon as they have it up.

Please pray for these families as they face these hardships and ask God to give them the strength they need.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, June 26, 2005 10:15 PM CDT

My apologies for not updating since last Thursday. We have had a few good days since the last update. Caroline is continuing to do good taking her accutane. Just 3 more days and we will be through for another 2 weeks. The girls had a great time at Six Flags yesterday. We took one of Katherine's friends (Allie) and one of Caroline's (Jacee). We got there at about 11:30 am and left when it closed (10 pm). The girls rode a few rides, but didn't get to ride as many as we would have like to, mainly due to the crowds. It probably would have been less crowded to go on a weekday, but I have to work. My wife says that I have a real job now like most people (work all year long). The truth is that those of in education have real jobs, the difference is that we are paid for the amount of days we work and have the pay spread out over a whole year. Anyway, back to our story. The girls did impress me by riding a couple of major roller coasters. Both of the girls got on the Scream Machine and Caroline rode with me. We waited in line for over 30 minutes. When we were stepping in the car, Caroline looked at me and said the had to got to the bathroom. Now, I know that it is important to go to the bathroom when a girl says she has to go, but I asked her if she could wait for a couple of minutes. She told me she would try. When we dropped on the first hill, she looked up at me crying and saying she was scared. I told her to hold on to my hand tight and told her to just hang in there. When we got to the end, she got out of the car saying, "Whooohooo, that was fun daddy, that was great, man we need to do that again." We went straight to the bathroom and avoided any embarrassing moments. The girls liked the log ride and the gasp (parachutes). They rode those rides about three times each. The second ride that we went on was Thunder River. This is the one that is like riding in raft on a river. The wait for this ride was over an hour long. The danger on this ride is that there is a waterfall and usually half of the raft gets stuck underneath it. We came very close and nancy got the wettest out of all of us, as the person sitting on the other side of her was directly under the waterfall. All in all, the girls had a great time. A big thanks to the person who gave us the tickets.

This afternoon, Caroline made her big splash. She got in the pool and went underwater for the first time in 11 months. We all watched with excitement as she slowly go in the pool (it was cold) and then swam around for a while. She got back in again a couple of times this evening. She had a blast and got worn out from the swimming. It is fun to see her being able to do the things that she has not been able to for so long. We leave for the beach in 2 weeks and hope that she will be able to enjoy herself again.

We have the main computer back up now, but we are having to rebuild everything. We have lost a lot of our sites that we once had stored. You may remember that Caringbridge required us to remove the links. We have Ethan's, Gwen's, Eric Donovan's, Chandler Booth's, CampJack, and William Olson's. We have lost the correct site for Ryan and a few more. If you read this, please send us your link addresses so we can keep in touch with you.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, June 23, 2005 9:46 PM CDT

Another day of Caroline taking her accutane. She has now developed the ability to take her medicine on her own. Nancy now hands her the pills and she puts them in her mouth and takes a drink of Sprite and then swallows. We are so proud of her doing this. Caroline's skin is starting to peel, especially around her mouth and face. This is one of the major side effects of taking accutane. She also has to be very careful going into the sun.

Saturday, we are taking the girls and a friend for each of them to Six Flags. Neither of the girls have been there before, so it should be a fun time. On Sunday, the girls will to a birthday party for their cousin and it is a pool party. What a perfect way to celebrate the day Caroline can go under water.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, June 21, 2005 10:20 PM CDT

Things went good this morning and the tubes were removed from Caroline's chest. Nancy and the girls left the house around 5:50 am and got to Egleston at about 7:20 am. They would have gotten there earlier if it had not been for a couple of wrecks. Nancy said that Dr. Ricketts came by before things got started and talked with them and things went well. She has a bandage over the wound and he said that she can go swimming as early as Sunday. I guess we will find some pool to get in on Sunday after church. If nothing else, then we'll dunk her in the tub. It will be nice for her to be able to take a normal bath again. Since last July, she has not been able to get the top half of her body underwater. Another part of the journey has been completed.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, June 20, 2005 11:08 PM CDT

Tomorrow morning, Caroline has to be at Egleston at 7 am for her procedure to remove her central lines out. Dr. Ricketts, our surgeon, is doing the procedure. This is being done as an outpatient, so Caroline will be back home in the afternoon. Nancy and her mother, along with Katherine will be leaving here before 6am to go over. Please pray for them in the morning. This is the thing Caroline has been counting the days down about. It is a good thing that the tubes are coming out. This week, I have not been able to flush the lines, and every time that I have tried, Caroline has screamed about a pain in her shoulder. Hopefully we will get them back and frame them.

I including the testimony I gave on Sunday for another day. I hope you get the chance to read it.

_____________________________________________________

Testimony, First Baptist Church, Bremen, Father's Day 2005

I appreciate this opportunity to share my story of how God has worked in the life of our family. God has blessed me with a beautiful wife, Nancy, and two lovely girls, Katherine and Caroline. Katherine is 11 and will be a 6th grader next year. I thank God every day for bringing her into our lives. She sometimes feels overlooked because of all of the attention that is given to her little sister, but she cares deeply for her. She also has had to spend a lot of days without her mom and dad around, while we took care of Caroline. She grew up a lot this year.

Then there is Caroline. This past year has brought some major hurdles into our lives and God has continually blessed us. Caroline has faced many struggles in her short life. She was born with a birth defect and 2 surgeries within the first week of her life. She spent 23 days in the hospital and up till this last year has been a completely healthy little girl.

Have you ever noticed that God has a plan for our lives?
Have you ever noticed how God has a way of making you see that he has a plan for you?
Sometimes you must have faith and trust that he will provide.

Last spring, I was named a finalist for the job I had dreamed of having for the previous four years since I became an administrator, being the principal of Temple High School. I thought that this was the thing for me and I thought it should be me. Well, apparently what I thought and what the Superintendent thought were not the same. I did not get the job. At first, I was extremely disappointed. But, I prayed a little prayer the next morning and asked God to give me peace about this disappointment. It was amazing that I became relieved. God opened my eyes and let me know that there were other opportunities, I just had to be open myself up to them and maybe God had other plans for me. I decided that I would continue on for another year at the Alternative school. Summer started and in July, we went on vacation. We returned from vacation and I started preparing for the teachers to return within the next week. On Tuesday, July 20th, my mother in law, Alice, called me and told me that Caroline was at the doctor�s office and that they thought that she might have Cat scratch fever. I left work and arrived to find her being prepped for a CT scan. After the scan, Dr. Ogden, our pediatrician, told us that he believed that she had a form of cancer and he was sending us to Scottish Rite. We found out that night that she had Neuroblastoma. Neuroblastoma is a cancer of the sympathetic nerve system and is a solid tumor cancer. Over the next few days we learned all about cancer and what chances our daughter would have. We were told that she has a 40% chance of surviving this cancer. This was the beginning of our odyssey. Caroline has gone through 94 days in the hospital, 5 rounds of chemotherapy, 1 surgery, 3 nights in ICU, 2 stem cell transplants, 14 days of radiation and the start of the final phase of oral treatments. . Through this time, we have seen our daughter go through many trials. She lost her appetite, she lost her hair, she endured toxins that have burnt her skin, caused sores through her entire gastric system, she has had over 20 transfusions, had feeding tubes inserted through her nose, spent 3 days in intensive care, thrown up too many times to even count, and several other things. However, God has given Caroline strength to fight. She first showed this when she was a baby and survived those hardships and now she shows the same tenacity. She has the most awesome sense of humor (just ask her to do her 6 flags man imitation), she has learned to be a budding artist like her sister, she went to school, even when it was only for an hour or two, and finished kindergarten. She has regained her appetite that she had lost at the start of this disease. Her favorite places to eat are the Lazy Donkey and the Japanese Steak house.

Many people have asked how Nancy and I get through this ordeal. My answer is simply that we have faith that God will heal our child and he will protect us. This week, we had a little scare after we had several scans done. On Wed., our oncologist, Dr. George told us that there was an area on her hip that showed a spot on the bone scan. He told us that it matched with her pains that she has been describing. He did not have the results of the soft tissue scan. He seemed a little worried and told us that if it turned out to be the Cancer returning, then we were going to have some worries. We came home on Wednesday concerned, but I really had faith that things were going to work out. On Friday, he called to say that he did not see anything in the scans and that it might be just inflammation in here hip. We thank God for this.

I believe that these events were the reason that I did not get the job of principal last year at Temple High. It would have been very hard to focus on Caroline and focus on a larger school at the same time. My position at Crossroads had many advantages to it. In May I was named as the principal of Temple Middle School and I believe that this shows that God has his own sense of timing. I have been blessed in working with a great school system that has told me to put my family before my job and that they would worry about my school and for me not to. I even had an Assistant Superintendent threaten to fire me as school began. She told me that if I went to school on the first day, instead of staying at the hospital, she might recommend that. I think she was joking.

I would like to thank you all for the support that you have given us this past year and ask that you continue to pray for us, as we still have 6 months of the oral treatment to finish. I believe that Caroline will continue to get better and better. She already is growing hair, she is continuously eating and seems to be getting taller. She is a living testimony to the power of prayer and the power of God�s healing abilities.

__________________________________________________________

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, June 19, 2005 10:30 PM CDT

Day 116

I hope that all of you had a great Father's Day, I know I did. The girls gave me some nice gifts and gave me big hugs and kisses. What else could a father want? This morning I gave my testimony of God has done for us this past year. I am going to print it below. I hope you enjoy.

___________________________________________________________

Testimony, First Baptist Church, Bremen, Father's Day 2005

I appreciate this opportunity to share my story of how God has worked in the life of our family. God has blessed me with a beautiful wife, Nancy, and two lovely girls, Katherine and Caroline. Katherine is 11 and will be a 6th grader next year. I thank God every day for bringing her into our lives. She sometimes feels overlooked because of all of the attention that is given to her little sister, but she cares deeply for her. She also has had to spend a lot of days without her mom and dad around, while we took care of Caroline. She grew up a lot this year.

Then there is Caroline. This past year has brought some major hurdles into our lives and God has continually blessed us. Caroline has faced many struggles in her short life. She was born with a birth defect and 2 surgeries within the first week of her life. She spent 23 days in the hospital and up till this last year has been a completely healthy little girl.

Have you ever noticed that God has a plan for our lives?
Have you ever noticed how God has a way of making you see that he has a plan for you?
Sometimes you must have faith and trust that he will provide.

Last spring, I was named a finalist for the job I had dreamed of having for the previous four years since I became an administrator, being the principal of Temple High School. I thought that this was the thing for me and I thought it should be me. Well, apparently what I thought and what the Superintendent thought were not the same. I did not get the job. At first, I was extremely disappointed. But, I prayed a little prayer the next morning and asked God to give me peace about this disappointment. It was amazing that I became relieved. God opened my eyes and let me know that there were other opportunities, I just had to be open myself up to them and maybe God had other plans for me. I decided that I would continue on for another year at the Alternative school. Summer started and in July, we went on vacation. We returned from vacation and I started preparing for the teachers to return within the next week. On Tuesday, July 20th, my mother in law, Alice, called me and told me that Caroline was at the doctor�s office and that they thought that she might have Cat scratch fever. I left work and arrived to find her being prepped for a CT scan. After the scan, Dr. Ogden, our pediatrician, told us that he believed that she had a form of cancer and he was sending us to Scottish Rite. We found out that night that she had Neuroblastoma. Neuroblastoma is a cancer of the sympathetic nerve system and is a solid tumor cancer. Over the next few days we learned all about cancer and what chances our daughter would have. We were told that she has a 40% chance of surviving this cancer. This was the beginning of our odyssey. Caroline has gone through 94 days in the hospital, 5 rounds of chemotherapy, 1 surgery, 3 nights in ICU, 2 stem cell transplants, 14 days of radiation and the start of the final phase of oral treatments. . Through this time, we have seen our daughter go through many trials. She lost her appetite, she lost her hair, she endured toxins that have burnt her skin, caused sores through her entire gastric system, she has had over 20 transfusions, had feeding tubes inserted through her nose, spent 3 days in intensive care, thrown up too many times to even count, and several other things. However, God has given Caroline strength to fight. She first showed this when she was a baby and survived those hardships and now she shows the same tenacity. She has the most awesome sense of humor (just ask her to do her 6 flags man imitation), she has learned to be a budding artist like her sister, she went to school, even when it was only for an hour or two, and finished kindergarten. She has regained her appetite that she had lost at the start of this disease. Her favorite places to eat are the Lazy Donkey and the Japanese Steak house.

Many people have asked how Nancy and I get through this ordeal. My answer is simply that we have faith that God will heal our child and he will protect us. This week, we had a little scare after we had several scans done. On Wed., our oncologist, Dr. George told us that there was an area on her hip that showed a spot on the bone scan. He told us that it matched with her pains that she has been describing. He did not have the results of the soft tissue scan. He seemed a little worried and told us that if it turned out to be the Cancer returning, then we were going to have some worries. We came home on Wednesday concerned, but I really had faith that things were going to work out. On Friday, he called to say that he did not see anything in the scans and that it might be just inflammation in here hip. We thank God for this.

I believe that these events were the reason that I did not get the job of principal last year at Temple High. It would have been very hard to focus on Caroline and focus on a larger school at the same time. My position at Crossroads had many advantages to it. In May I was named as the principal of Temple Middle School and I believe that this shows that God has his own sense of timing. I have been blessed in working with a great school system that has told me to put my family before my job and that they would worry about my school and for me not to. I even had an Assistant Superintendent threaten to fire me as school began. She told me that if I went to school on the first day, instead of staying at the hospital, she might recommend that. I think she was joking.

I would like to thank you all for the support that you have given us this past year and ask that you continue to pray for us, as we still have 6 months of the oral treatment to finish. I believe that Caroline will continue to get better and better. She already is growing hair, she is continuously eating and seems to be getting taller. She is a living testimony to the power of prayer and the power of God�s healing abilities.

___________________________________________________________

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, June 18, 2005 11:00 PM CDT

Day 115

Today was a good day. This afternoon, they had the balloon launch for Caroline. A big thanks to the Feed My Sheep ministries for their sponsoring this event as part of their free chicken-Q. They gave us a gift to help with medical expenses. The group is a non-profit organization and they fixed some good food. Rev. Glass spoke a wonderful prayer before we launched the balloons. A big thanks to him and his wife for doing this for us. Ethan Blank and his family came for the event. Ethan is the young boy with the incurable brain disease, who also goes to the same school as Caroline. Please remember him and his family in prayer.

A special prayer request: Back last year, we were nominated to have an extreme home makeover and were required to send in a video tape about our family and the events going on. A friend of Nancy's sister recommended someone to do the video for us. That person was Beth Price. We found out late this afternoon that Beth was in an auto accident and had a severe head injury and was not expected to live. A ladder came off of a truck and went through her window of her car. The ladder hit her in the head. She was life flighted to Atlanta Medical Center and is in ICU. The vehicle that lost the ladder apparently left the scene and there were no other witnesses. Please remember her and her family in prayer today.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, June 17, 2005 9:30 PM CDT

Well we got some kind of good news, no it was good news, today. Dr. George called this morning and said that the results of the MIBG scan (soft tissue) did not show anything and that means that it is a good chance that it is not cancer. He had said that if it showed up in the MIBG, then it had a good chance of being cancer. We praise GOD for this and feel a lot better. I know a lot of you have been praying this last week about the scans and have called me or emailed me. We appreciate all of the concerns and prayers. God is AWESOME.

I apologize again for not updating last night. It was a long night. We had an appointment late in the afternoon and then Caroline decided that she wanted Japanese. She at first wanted to go to Douglasville, but we talked her into trying the new restaurant in Carrollton. She ate good, but she told us that she still liked the Douglasville one better. One of her main reasons was that the chefs always pick on her there and she likes that. Then Katherine and her spent the night over at Nancy's parents house. We came home and Nancy decided that she needed something for her morning coffee, so off we went to Walmart. We finally got home at about 11 last night.

Caroline is doing wonderful with her medicines. She has only one more day of the SSKI (iodine) and she started on the accutane. She has to take 2 pills in the morning and 2 pills at night. She is so proud of herself for being able to swallow these. When I called home yesterday from work to check on how she did taking them, Nancy told me that Caroline said that she couldn't wait for me to come home from work so that she could tell me that she took the medicine.

A professional note from me. I am still looking for 3 special ed teachers and 1 8th grade language arts teacher. If you know someone looking for a job and are certified (not crazy), please call me at home or at school. Home # is 770-537-5122 and work is 770-562-6001.

By the way, the computer tech came by and put a new hard drive in my main computer this afternoon. Problem is the software that puts windows back on did not work. Dell is sending me new software on Monday. Hopefully I will have it back up soon. It looks like we lost all of our digital pictures of the girls. We had all of the pictures from our long stay in the hospital that we lost and of the cheerleaders, and Caroline's classmates. At least we have the real thing and hopefully with reports like today, we'll have her for a long time.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, June 15, 2005 9:26 PM CDT

Day 112

Well all of the scans are complete and everyone will get to stay home for a few days. We were hoping that everything would show up clear and we would be going into this next phase of treatment with no doubts about the future. Today we had the MIBG scan (soft tissue scan) and then went and met with Dr. George. Dr. George told us that he had seen the results of the Bone scan and CT. The bone scan looked clear except for on area on Caroline's hip. After we mentioned how she has been complaining of pain in her hip when she runs, he took a close look at her back side. He said that he is not sure what the dark spot on the scan could be. He said that would need to check the MIBG and see if anything is showing up there. He was a little cautious about saying what it could be. He said that it is possible that it could be inflamtion in her hip (from her increased activity) or it could be the start of a new tumor. He said that the CT did not show anything out of the ordinary, besides the residual tumor that has died off. We did get the prescription to start her accutane and that will start in the morning. This part of the treatment will have her taking 2 pills in the morning and 2 pills in the evening for 14 days, followed by 14 days not taking anything. She will repeat this cycle 5 more times. Please pray that this dark spot is nothing cancerous. He did say that if it proves to be cancer, then we may have some problems ahead, in that it would be returning so fast. All we can do now is pray and have faith that God will take care of this problem as he has before. Please pray for me on Sunday as I am giving my testimony at church for both morning services. I am talking about how God has worked in our family this past year and has hopefully made me a better father.

Don't forget about the prayer balloon launch on Saturday in the parking lot beside Tom's Cleaners in Bremen. This will be done in honor of Caroline. This is being done by Feed the Sheep ministries.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, June 14, 2005 10:18 PM CDT

Day 111

Day 2 of the scans is complete, with only 1 scan left. Caroline did exceptionally well today. She got to the hospital today at 10:30 and then had to drink 32 ounces of contrast over a 2 hour period. In the past they have put the NG tube in her nose and today she agreed to drink the contrast instead. They mixed it with apple juice and she did wonderful. Nancy and Caroline made it home by 6 pm. We went to eat at the Lazy Donkey afterward and she enjoyed herself. Mary Sellers joined us for dinner also. Katherine decided to stay with Nancy's mom because of being sunburned. She stayed at her Aunt Melanie's house and swam with her cousins and got blistered. Katherine just didn't feel good, so she stayed at home. Please remember us in prayer tomorrow as we finish up the scans with the MIBG. Caroline is doing so good in taking the SSKI (iodine) that protects her thyroid. That is the most terrible tasting medicine I have ever tasted. She has to take through Saturday. We have to be at the hospital at 9 am and then after the scan, we have to go see our doctor.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, June 13, 2005 10:04 PM CDT

Day 110

We have major problems here at the Johnson house. My computer died last night right before I was planning to update the journal. I was on the phone with Dell till about 1:30 am and they finally determined that my hard drive has a fatal problem. They are shipping out a new hard drive and a technician will be here on Friday to install. The major problem about the crash is that there are all of our digital photos of Caroline and her Cancer experience since the fall. I am having help from our head of the schools technology department in trying to salvage these important files. Please pray that we will be able to get these important files.

Caroline, Nancy, and her mother left this morning at 6:30 to get to Scottish Rite. When they arrived Caroline had an injection and then had to wait for 2 hours before they could do the scan. The scan lasted for about 1 hours and we expect to hear something about it when we go see Dr. George on Wednesday. Caroline will have her CT tomorrow and the MIBG injection tomorrow. We started on the SSKI (iodine) this evening and that is the worst tasting medicine there is. A big thanks to my mom for coming over this morning and staying with Katherine. Katherine did not want to go to the hospital and no one else was available around here to keep her, so Mom came on over. Tomorrow, Katherine will stay with her Aunt Melanie and then on Wednesday with Alice(Nancy's mom).

Please be in prayer about a vehicle for us. We are needing to get another vehicle to go back and forth to the hospital and clinic in, as we have put a bunch of miles on our Jeep.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, June 11, 2005 10:41 PM CDT

Day +108

Sorry for not posting for the last couple of days. Caroline is doing well and is still wearing a bandaid on her head from her encounter with the pole. Last night both her and Katherine went skating with Katherine's best friend Allie and then spent the night over at Allie's house. Things went well, in that we were not called to come to get Caroline in the middle of the night. This afternoon, we took the girls over to Town Center to watch the movie, "Kicking and Screaming." This is a movie about a soccer team and Katherine had been wanting to see it, but it was no longer at the Mall in Douglasville. I found where it was playing and the closest was in Marietta. We took Allie along with us and then stopped off at Town Center Mall for a short visit and then went and ate steak (Caroline's favorite food) at Longhorns.

Please remember Caroline on Monday, Tuesday, and Wednesday. She will have her scans (CT, Bone, and MIBG, in that order) to see if there is any Cancer remaining in her body. We are praying that everything is gone and the only things that remain are the calcifications of the dead disease. On Monday, Nancy and her mother are taking Caroline and are to be there at 8 in the morning at Scotish Rite.

By the way, Caroline has started liking Spiderman. It was on last week on TBS and she watched it. Tonight she went to Build-a-Bear and she bought a Spiderman outfit for her bear, Ted. She also bought some underwear so he would have something to wear under his clothes.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, June 8, 2005 10:27 PM CDT

Day +105

The girls continued in Bible School today and things went well for a while. They had a huge inflated slide outside and one of Caroline's teachers tonight at church told me that Caroline played and played today. She said that Caroline went on the slide over and over again. She said that she was so impressed at how well she did. After Bible school Caroline had a little accident. A pole in the sanctuary fell over and hit her on the head. It cut her head and Nancy took her to our pediatrican's office and he said that all it needed was a little neosporin and a bandaid. She has a nice goose egg on the side of her head. Nancy said that Caroline cried and cried, but eventually got better. Tomorrow after Bible School, their cousins Amber and Trent are coming over to play (hope our house survives) and on Friday night they are both going over to Katherine's friend, Allie's, for a skating and slumber party. Caroline has been looking forward to it all week long. She also said that she is sad that Bible School will be over on Friday.

We called and confirmed our appointments for the scans next week. On Monday she will have to be at Scottish Rite at 8 am for her CT scan, on Tuesday at 10:45 for her bone scan and then Wednesday morning for her MIBG scan. Please pray that these scans will be negative and show that the Cancer is gone. We will also meet with Dr. George on Wednesday after the scans to begin the Accutane. It will be nice to start on the final phase of her treatment. We are also looking forward to the 21st for the removal of her tubes.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, June 7, 2005 9:37 PM CDT

Day +104

Caroline decided tonight to wear her glasses while watching TV. This is the first time that she has decided to wear them since we bought them last July, prior to her being diagnosed with Cancer. She refused to wear them throughout most of this year and finally tonight she got Nancy's glasses and tried them on and told her that she could see things a little better. Nancy asked her if she wanted to try on hers and she said sure. She watched TV for a while and said that things wee a lot larger and clearer. I asked her if she was going to start wearing them and she told me they made her look goofy. I asked her if she thought that my glasses made me look goofy? Well, you know that you shouldn't ask certain questions and she told me that I did look goofy.

We were called tonight about a Prayer Balloon Luncheon on June 18th. I don't have much info about this yet, but the church that is located by Tom's Cleaners is going to sponsor a chicken-que that day and they did one for Ethan Blank earlier this year. Ethan is the young boy who has a degenerative disease I mentioned earlier in the year. I will post more, when I know more. I do know that it will be at Noon on that day.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, June 6, 2005 9:24 PM CDT

Day +103

We hope everyone is having a good summer. I apologize again for not updating since last Thursday. Things are going well here at the Johnson household. We found out today that Caroline is scheduled for her scans next week. On Monday, she will have her CT scan, on Tuesday she will have her bone scan and get injected with the MIBG isotope, then on Wednesday she will have the MIBG scan and meet with Dr. George to start the accutane. Please pray that the scans will be clear and that the Cancer will be gone.

We have had a busy weekend, with us going Friday night up to my sister's house in Tyrone for my neice's 17th birthday. On Saturday, the girls went to the kickoff for Vacation Bible School at the church and they had a huge inflated slide that Caroline went on several times. On Sunday afternoon, we went over to the mall and the girls went to Build-a-Bear Workshop. Caroline got a new bear and named him Ted. Katherine bought some clothes for her monkey. We then went and ate at Outback for supper. The girls started Vacation Bible School this morning. Caroline has been so excited about getting to go this week. Nancy said that she got a little disappointed today when she found out that Bible school only lasts for 5 days. She really misses going to school.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, June 2, 2005 10:32 PM CDT

Day +99

This morning started out a little rough for Caroline. She woke up at about 6:15 this morning and was throwing up. We don't know why, because after this episode, she went back to sleep and has been fine the rest of the day. We did go to the clinic today and she got a good check up. Her counts were all within the normal range and we got to see Ryan and Missy. Ryan is a little further ahead of Caroline and they are going on their Make a Wish trip next week. We discussed the next steps for Caroline today. She will have to have a bone scan, MIBG scan, and a new CT scan within the next week or so. After they do this then we will meet with Dr. George that same day and set us up for the accutane. We still are scheduled to have Caroline's central lines removed on June 21. Caroline cannot wait to have these removed. This afternoon, she went over to her Aunt Melanie's house and they have this float that looks like a jet ski. Caroline got on it and rode around the pool. Of course, she is not supposed to get wet, due to her lines. She didn't get wet and this made her day. Katherine stayed with her friend Allie today while we went to the clinic. After Caroline's excursion in the pool, Nancy went over to pick Katherine up and she convinced her mother to let her stay for a while longer. Well, Caroline decided she wanted to stay also and Allie's dad agreed. Caroline just had a great afternoon and early evening, until Katherine was invited to stay the night with Allie. Caroline did not like that and wanted her to come home. We told her that Katherine was going to stay and she demanded to get one last hug from Katherine before we left. Caroline almost had Katherine in tears. We came home and I paid bills and Nancy played a game with Caroline and then she hit the bed. It is nice to have good days for a change.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, June 1, 2005 9:32 PM CDT

Day +98

Apologies for not updating last night, Caringbridge was not available yesterday due to upgrades to their system. They are changing the format for new pages and Caroline's page is considered a Classic page. They may force us to change the format later on.

Another day around the house for the girls today. As it still has been raining, the girls have been stuck inside for several days. Nancy said that the girls were real good today and did not fuss too much. Last night, we went and ate with one of our good friends and her daughter. Renae Kiger was in band with me in college and even started teaching at Temple High School when I was there. She and her daughter, Rachelanne, came over and ate at the Lazy Donkey in Carrollton with us. It was good to see them, as we saw them last right before Caroline was diagnosed with Cancer. Tomorrow, we go to the clinic for a check up and hopefully they will give us an idea about when we will have Caroline's scans and also when we will start the accutane. We turned in request for dates for the big Wish. We requested a week in July, August, or September. We had to rank them and they were in that order.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, May 30, 2005 10:41 PM CDT

Day +96

Oh, another boring day around here and how happy we are to have those. With it raining today, not much to do here. The girls played around for a while till they got on each other's nerves. I went this morning and cleaned out my office at Crossroads so I can move my stuff over to my new office at Temple Middle. My good friend and former head special ed teacher at Crossroads, Kevin Aviles, came over and helped me get everything out. This afternoon, Caroline and I, rode over to Temple Middle and walked around the building. I wanted to see how it handled rain. Not too good, especially for a four year old building. I discovered something else, Caroline found the snack machine in the teacher workroom and we had to buy a few things out of it. I have to remember that if I bring her, I must bring money with me. Tomorrow night, we get to see some old friends. Renae Kiger and her daughter, Rachelanne, are coming over to eat with us at the Lazy Donkey. We were supposed to get together last Friday night, but it didn't work out. We ate there anyway and are always happy to return. That is Caroline's favorite restaurant and she loves to eat the chips and salsa.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, May 29, 2005 9:51 PM CDT

Day +95

My apologies for not updating for the last several days. I have been busy in dealing with my new school and decided to let a few days go on before I wrote again. Things are as normal as possible around here. The girls have enjoyed their first week off of school and have driven Nancy a little crazy. Caroline is doing good, with no major things going on other than taking her weekly doses of bactrim. She and Katherine have been playing and staying busy. We have a doctor's office appointment coming up sometime in the next week or so. Her appointment to get her tubes removed from her chest is June 21. We still have not settled on a date for the Wish. I found out today that my cousin and his family left for Alaska today for his son's wish. He has two children with Muscular Dystrophy and Luke's wish was to go to Alaska to see sled dogs running. Their other son's wish is to go to California, but Luke is the weaker of the two and they are going for his wish this week.

Please continue to pray for Nancy's dad, Tearl. He had an antibody treatment this week for his Hairy Cell Leukemia (chronic cancer). He didn't do to good on the first day that they tried to do the injection and had to finish up on Thursday. He has been sore and is somewhat swolen. He and Nancy's mom are going out of town for a few days. Hopefully this will help recharge him.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, May 26, 2005 10:01 PM CDT

Day +92

Today was the first day in a long time that Nancy and Caroline did not have to go anywhere. So they stayed at home today, along with Katherine. By early this evening, Katherine was begging to go somewhere. It was just one of those slow days where nothing major happends. Carroll countys finishes up school tomorrow and then the teachers have Monday off and then the rest of the week as post-planning. I of course work year round, so I will be waiting anxiously for Caroline's make-a-wish trip and for our annual trip to Jekyll Island for the Administrators convention (GAEL).

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, May 25, 2005 10:05 PM CDT

Day +91

It is hard to believe that it has been 13 weeks since Caroline's second stem cell transplant. Today she finished her last radiation treatment and got a good report from Dr. Marcus. We made a picture of her with her favorite tech, Greg. It is hard to believe that we have finished 3 phases of her treatment. Our next phases will begin soon, as we have to have scans scheduled and she will start her accutane.

Tonight, Caroline's wish agents came to the house to discuss her wish with her. She has made her wish of a combination of Disney World and a Disney Cruise. We have to choose the dates for this and get those in so they can finalize her wish. The issue that I have to work with is getting my school ready to start and also school starting for both me and the girls. Hopefully we will pick a date that can work for all of us.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, May 24, 2005 9:02 PM CDT

Day +90

We have one more day of radiation to go. Today they did the boost, which was a little more extended time and more refined shots of radiation. Caroline had to stay on the table a little longer, but Nancy said that she did real good and didn't get antsy. We will see Dr. Marcus tomorrow after the radiation. We will be glad when this part is over, not so much because of what was going on, just the journey back and forth each day to Winship. Today, Nancy and her mother took the girls to the mall after their visit and they bought a bunch of stuff, primarily for the girls. Caroline even got a dress that she called a "princess" dress. There was a lady that Nancy and the girls have met there at Winship and today she brought some things for Caroline. It is so nice to meet so many nice and wonderful people who care about our girl. Tomorrow I will go with Nancy and will leave from the school (Temple Middle) a little early.

Please remember a friend of mine in prayer. Her name is Shelia Johnson (no relation) and she used to teach with me at Temple High School. She is now an Instructional Facilitator for Special Ed for Carroll County schools. She has Breast Cancer and has been going through rounds of chemo for the last few weeks. I saw her today at my school and she has been feeling very nauseous. She is about to have to move up to Virginia (husband has new job there) and we will miss her. She is a very brave woman and please pray that God will touch her.

By the way, Caroline's hair is coming out more and more. I have been referring to her as Spike. Her hair is come out to a point that it is sticking straight out. It is nice to see the hair coming back.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, May 23, 2005 10:08 PM CDT

Day 89

Caroline has only 2 more radiation treatments left (tomorrow and Wednesday). They told Nancy today that tomorrow they will give her a boost. We are hoping to get Caroline's tubes out on June 21. This is a day that Caroline is anxiously awaiting. Tonight, Caroline and Katherine both went to their grandparent's house and helped Tearl to make Cake Squares.

Today I met with my new staff at Temple Middle school. I am impressed with the staff I have and hope that the next school year will go well. I will be at Temple Middle for most of the next week.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, May 21, 2005 10:22 PM CDT

Day +87

Well my apologies for not updating last night. It was the last day of school for the girls. Katherine went over to her friend's house for an afternoon and evening of playing and swimming. Caroline finished her last day of school with a party. Caroline gave a gift to her teacher, Ms. Sewell, and her Assistant, Ms. Cynthia. The gift was a picture of Caroline with each of them in a frame. When she gave the gift to Ms. Sewell, Ms. Sewell became very emotional and teary eyed. Before Ms. Cynthia even started opening hers, she began crying. These ladies were very important this year for Caroline. I know that Caroline was blessed to have these ladies guide her on her educational experience. There would have been no way that she would not have been able to be as successful as she has been. Ms. Sewell was both Katherine's and Caroline's kindergarten teacher. When they say everything you need to know, you learn in kindergarten, well that means for our daughters that they will be extremely knowledgeable with Ms. Sewell as their teacher. If you can't figure out what I am saying, I am saying that I can't say enough about these ladies. THANK YOU!

Last night, we asked Caroline where she wanted to go eat, and she told us the Japanese Steak house. I told her that we had already eaten there earlier in the week and that I couldn't afford to eat there so often. We convinced her that we should go to Carrollton and eat at the Lazy Donkey. She agreed and off we went. When we got back, she had one of her cousins, Kylie Leopard, come over and spend the night with her.

Please remember me next week as I go to Temple Middle next week. I meet with my new faculty on Monday afternoon and then I will be there starting on Tuesday.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, May 19, 2005 11:01 PM CDT

Day 85

3 radiation treatments left to go. Nancy and I decided that since tomorrow is the last day of school, plus Nancy's mom can't go with her tomorrow, that Caroline would wait till next week to finish up her scans. It really does not hurt to go for a few days without having a treatment (since we miss on Saturday and Sunday anyway). We went to the 5th grade picnic with Katherine this evening. They do this every year and Katherine had a good time with all of her friends. She told me tonight that this has been her best year at school. It seems strange for her to say that when we remember her complaining at the start of the year that she did not have any friends in her class and how she hated the work. But she really has enjoyed her teacher, Ms. Carter. Ms. Carter is retiring at the end of this year and we are happy that she was Katherine's teacher. Every year Katherine says that year's teacher is the best. We have been real pleased with Jones Elementary school.

Please pray for me next week as I begin working some at my new school. Pray that things will go well and that the next school year will go well also. I want to say what a great staff I have had at Crossroads Academy. They are real hard workers and are very special people. You have to be to work with those kids.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, May 18, 2005 12:00AM CDT

Day +84

Sorry for posting so late, as I had trouble getting on Caroline's site tonight. Caroline has 4 treatments left and she has 2 days of school left. We are waiting patiently for a call from Caroline's surgeon to find out when we can schedule her tubes being removed from her chest. She really wants to go swimming really bad.

Katherine had award's day at school this morning. She got an award for physical fitness, one for honor roll, and one for being in chorus. I thought her making honor roll was outstanding, considering all that she has been through this year with Nancy and myself being gone from her. She is a great child.

Thank you for all of the congrats and emails concerning my new job. I meet with my new faculty next Monday afternoon and then start hanging out there. I am already doing some things behind the scenes right now. Please pray for me as this is an awesome task that has been handed to me. I have had good principals to work for who have influenced me and I hope that I can do as well as them.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, May 17, 2005 10:02 PM CDT

Day +83

Caroline was very spunky today and according to Nancy, she was a handful while getting her treatment today. She was very active and was playing around while she was laying down on the machine. Nancy said that Greg almost had to be stern with her, as to get her to be still. They saw Dr. Marcus after the treatment and he even remarked how active she was today. Last week when he saw her, she was asleep on my shoulder and he told Nancy today that she was definitely more lively.

Well this morning I got some good news. I was named the new principal of Temple Middle School at the board work session last night. I thought last night that I didn't get the job. When I interviewed with the Superintendent last week, he told me that I would hear something no later than Monday, before the board meeting. When I did not hear anything yesterday, I was resigned to the idea that I did not get the job and would stay at Crossroads for another year. This morning I got a call from Martha Shade, the Asst. Superintendent for Human Resources and she told me congratulations. I asked her for what and she said that I was the new principal for Temple Middle. I then called Nancy and she screamed on the phone. I asked her to call my father, as I was late heading out to a principal's meeting. On the way, I called my sister,who is a middle school teacher in Fayette County and she told her class, and they even screamed in excitement. Nancy said that my mother called her and was saying she was so excited that she was crying. The Lord works things out and he does it in his own time. Last year, I was a finalist for the Temple High principal's job and I was not chosen. At first I was extremely disappointed and then I decided that maybe it was for the best. A couple of months later, Caroline was diagnosed with CANCER and it was at this time I realized that God had a plan. It would have been a lot harder to run a regular high school this past year than the smaller alternative school. God also placed several people in my school to help me. I believe that God has purpose for all of us and we must allow ourselves to be guided by him and not our wants. Thank you for your prayers for all of us.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, May 16, 2005 9:15 PM CDT

Day +82

Blah Blah Blah!!!!! :)

Sorry about the above, but while I went in to check on Caroline, Katherine sat down at the computer and typed in the above. I figured that I would leave it.

One more day of treatment down. Nancy and her mother took Caroline over to Winship. They were treated again by Greg. Caroline really likes him and he is great with her. He told me the other day that he has 3 6 year olds doing radiation and not one of them reqires sedation. Dr. Marcus told us that their team is good in working with the children. By not having to have sedation, Caroline is in and out within about 5 to 10 minutes. If she was required to have sedation it would take at least an hour or so longer and she would have to go in the mornings.

This evening, my parents came over and brought the girls T-shirts with Caroline's picture on the back. The picture is the same as the top of the page. On the front it says Sweet Caroline and then on the back is the picture with the words Sweet Caroline surrounding the picture. My Dad told me tonight that Pine Grove Baptist Church in Fayetteville is going to sponsor a softball tournament in honor of Caroline on June 24. The cost of the entry for a team is $200 and I will have more info as I get it. There is a registration form that has to be filled out. This is the same church that gave us the prayer pager.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, May 15, 2005 9:26 PM CDT

Day +81

Well another day has gone by and Caroline continues to do better and better. This morning she stayed for almost the whole service at church. I sang in a quartet this morning for church and when I finished singing, I came down and sat with Nancy and the girls. Caroline immediately climbed in my lap and when it got about 5 or 10 till 12, she began asking loudly if church was about to be over, repeatedly. This morning, we had a guest speaker, who during the first service this morning, went over about 20 ti 30 minutes longer. I knew that Caroline would not last for another 25 to 30 minutes, so I took her outside and then we walked across the street to her grandparents restaurant. I left her there with her grandmother and I came back to the church and heard about the last 10 minutes of the sermon. I am just happy that she lasted as long as she did. After church, Katherine was walking with Nancy and myself to the car. We both noted how grown up she is looking and I even told her that it won't be long before she catches up to her mother's height. She then told me that she thinks she will be even taller than me. She said that I was short. I cannot believe how my daughter thinks I am short. I don't know where she would get an idea like that?

We continue radiation this week, with about 7 more treatments to go. The girls will finish school this week, while our students have another week after this one to go. Hopefully we will make it through and things will go ok.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, May 14, 2005 10:03 PM CDT

Day +80

My apologies for not updating last night, as we were busy and did not have time to write. Things are going well here at the Johnson house. Last night Katherine went over and spent the night with her best friend, Allie. This left Caroline at home with us and our original plans had been to go to Chuck-e-Cheese to celebrate Caroline's doing so well at her Kindergarten musical. Well, since Katherine was not here, Caroline decided to let her unhappiness be known and we spent about an hour trying to figure out a way to deal with this. We finally agreed to go out and eat and we went to Carrollton, to eat at our favorite Mexican restaurant, The Lazy Donkey. We got back and then she wanted to stop by her grandparent's restaurant to play with some of her friends (some of the worker's children). After we did this, we went over to get some hot fresh donuts that Nancy's dad was cooking at their house. This morning we hung out around the house (except for me going to get scalped) and then after Katherine got home from her friend's house, we went to Carrollton and bought the girls some new bathing suits and Nancy a new dress for church. Guess where we went late this afternoon? Of course, Chuck-e-cheese in Douglasville. The girls had a great time and boy did they earn those tickets. The only strange thing to happen was when I was following Caroline around in the game area, a young boy came up to me and asked me what was wrong with her head and why did Caroline not have any hair? I told him that she had Cancer, and he just looked at me. I guess some kids just don't understand when they see someone who looks different. It really didn't bother me and Caroline goes about business with not a care in the world. If only all of us could handle ourselves like she does. We see our problems as things that hold us back, while she doesn't see a problem and could care less what other people think. The cutest thing about that little bald head is the little fuzz that is growing and is soo soft. I can't help but just kiss that head everytime I am around her. It looks like the hair will come back blonde (I had this fear it would be black and curly). I personally would like for my hair to come back also, but I don't think my hair remembers where it is supposed to grow (more on my ears and back now). I told Nancy the other day that I think that I am losing hair as a way of reducing stress.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, May 12, 2005 10:33 PM CDT

Day +78

Today has been a pretty good day for the Johnson family. Caroline has been better today, running no temperature and going to school this morning. They took the classes over to get ready for the kindergarten musical and graduation tonight. Caroline did have to come home early, as she was complaining of a bad stomach ache. When she got home, she used the bathroom and got to feeling a lot better. She went with Nancy and her grandmother to Atlanta for her daily radiation treatment and then this evening did very good in her musical. The kids sang about 5 or 6 songs and did some dancing. They then received their diplomas and when Caroline's name was called out, she got the loudest round of applause of the night. When her teacher, Ms. Sewell, continued reading out names, you could hear her trying to regain her composure. My mom and dad came over tonight to see Caroline's musical and also to watch Katherine's last soccer game of the season. Talking about Katherine playing, she played her best game of the season tonight. She ran real good and played good defense. It was awesome to see her play good and she held the other team's best player at bay for most of the game. The team they beat tonight was the same team that gave them their only loss of the season. Katherine's team won 5 - 2. Katherine's coach says that she earned her "stick to it" award this afternoon, because she was all over the field.

This morning I had my second interview for the Prinipal's job of Temple Middle School. I am one of three remaining candidates for this job. It is a great recognition to be named as one of the final three candidates. I have put my faith in God and know that whatever he has planned for me, be it at Temple or staying at Crossroads, I will be happy.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, May 11, 2005 10:28 PM CDT

Day +77

Today has been a rough day for Caroline. Last night she ran a temperature that got up to 39 C (102.6F) and hovered around 38.5 C (101.4 F). We called the doctor on call last night and he said that if it got up to 39 C, then we would probably need to come in to the emergency room at Scottish Rite, but otherwise need to come in to the clinic sometime this morning. Nancy and I decided that since her temperature went to 39 C and didn't stay there and did come down some, to wait till this morning to come in and see the physician's asst. and have blood culture done. The bad part of doing this was that Caroline was forced to miss her field day today. Talk about one upset girl this morning, she just sobbed and sobbed and did not understand why we wouldn't let her go to school. She went to the doctor's office and had the blood drawn and also got a dose of a major antibiotic. Caroline's counts were fantastic. Her white count was way up to 8.08, up almost 5 points and her ANC was above 7,000 (1100 last time). When we finished at the clinic we drove to Winship and she had her radiation and then had a check up from Dr. Marcus. He was extremely pleased at how she is handling the radiation. We talked with one of the guys who is doing the radiation, Greg, and asked him a question that several people have asked me. Why can't this procedure be done closer to home, as say in Carrollton? He told me that the machine that does Caroline's radiation is so special, that there are only 3 of these machines in existence in the US. In fact, while we there today, there was a crew there doing pictures for an article about the machine and the physicist over it. The team was there all the way from San Francisco.
We'll update more tomorrow.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, May 10, 2005 8:50 PM CDT

Day +76

Another day of radiation down, only 10 more days to go. Caroline is starting to show signs of getting tired and more irritability now as she continues the radiation treatments. The smallest little things tend to set her off and she shows her emotion a lot more now. It is not unusual for her to throw a little tantrum, but we get through it. Please continue to pray for Nancy as she has to deal with these things more so than me. I guess it is better to have an unhappy girl than no girl at all. We know that we will get through these things.

Katherine won her soccer game tonight and the coaches just can't stop talking about how good she is playing. They want her to play more offense, but she loves to play defense. They had their end of the season party tonight and she got her trophy and got a certificate for "Best Stick With It" Player. She got this award for coming in after they had finished most of the practices and doing so good. She missed most of the early practices due to Caroline being in the hospital. Caroline has already told us that she intends to play soccer in the fall.

Thanks for all of the prayers for me this morning. I went first of all the candidates and the interview went for a little more than 45 minutes. There were 6 people on the committee and I feel pretty good about the interview. I will find out in the next day or two whether I made the top 3 or not. The top 3 will then meet with the Superintendent for the final interview and he will choose the top person. I have put everything in God's hands and I told the committee today that if I am not chosen I won't be unhappy because I enjoy working where I am now.

Pray for Caroline in the morning that she will have a lot of strength. Tomorrow morning is the Kindergarten Field day. She is very excited and Nancy plans on attendng. She has an appointment with Dr. Marcus following tomorrow's radiation treatment, so I am going to go with Nancy and Caroline tomorrow.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, May 9, 2005 9:27 PM CDT

Day +75

Caroline continues with her treatments each day and today she took the two technicians at Winship a bracelet for each of them. Caroline went to school on time this morning as she had practice for the Kindergarten musical for this Thursday night. Nancy has been picking Caroline up each day at around 12:30 to take her to Atlanta. Today as she was driving up, she found Caroline and some of her friends walking up to the playground. Caroline has been missing her playground time each day, so today her teacher had arranged for her to go to the playground with some of her friends and they also got her cousin Amber out of class to play with her. Nancy decided to come back at 1:00, so Caroline could get some playing time in. It so wonderful that Caroline has a teacher that is concerned that Caroline get to experience the full effect of school, even if it is play time that she is missing and wants her to enjoy that part of school. Ms. Sewell is wonderful to our daughter. You may remember that her daughter had Wilm's Tumors at around the time that Caroline was born. God took care of Kalie and she knows what we are going through.

Please be in prayer for me in the morning. I have an interview for the principal's job at Temple Middle. I have an interview with the committee at 8:30 in the morning.

Katherine had her chorus concert tonight and they did a wonderful job. They sang surf music and disney selections. Katherine even had a small speaking part at one part of the program. She will be performing this over again tomorrow for the school twice. She has really enjoyed chorus this year and does a good job.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, May 8, 2005 9:22 PM CDT

Day +74

I hope that all of you had a great mother's day. Today we got up and Nancy and the girls made it to church in time for the 11 o'clock service, but Caroline's stomach decided not to cooperate. She has gotten her appetite back and when she gets hungry, she gets very demanding about getting something to eat. Right as it was time to start the service, she complained about being hungry and Nancy had to take her to get something to eat. Boy, when we prayed that her appetite would come back, the Lord answered our prayers. Sometimes you have to be careful what you ask the Lord for, because he can give it to you in ways you don't think about. We ate tonight over at Nancy's parents with all of her sisters and their families. All of the kids dressed up and did a dance for us. All of the girls were wearing Nancy and her sisters old dance uniforms and Thomas, Tyler, and Tanner all had dresses on (old bridesmaid dresses I believe). It was a hoot. Caroline had an old small majorette uniform on and got cold quickly. We didn't have our camera, so I am sorry that I won't be posting any pictures. Yesterday afternoon we took the girls over to the mall and they both bought a Build-a-Bear Monkey. We then went out to eat at Joe's Crab Shack and since Caroline does not eat seafood, she wanted Steak. Katherine loves crab legs, so it was not a cheap dinner as all ate off the adult menus. Caroline ate 3/4ths of her Sirloin Steak. We had a good time and it was worth it to have the girls have a good time. Nancy and Caroline hit the road again tomorrow afternoon, as we have 12 radiation treatments left. Nancy has her cousin, Patty White, riding with them tomorrow.

Please pray for all of our friends who are still on the journey and have a way to go.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, May 6, 2005 10:56 PM CDT

Day +72

My apologies for not updating last night. I just decided to take a night off. Things are going well for us here at the Johnson residence. Caroline has completed three days of radiation and seems no worse the wear. Nancy and her mother took Caroline on Thursday and I went with Nancy this afternoon. Today I had Nancy do the driving so that she could learn to go by herself. She told me after she got back that she thinks that there is no reason why she can't go alone now. We left today at about 1:30 from the house and were back at 4:10. It is amazing how fast the procedure goes. She was only on the table for less than 5 minutes. We have 12 more days of this to go and are off for Saturday and Sunday and start back up on Monday. To show you how fast everything is, the guy who does the valet parking left our car at the front door with the keys in the floor. He already know who we are.

Katherine had two soccer games this week, one last night and one tonight. Her team won their game last night by a score of 1 - 0, but tonight lost their first game of the season, 4 - 1. They were a little disappointed, but that didn't last long. We took the girls to Carrollton to eat Mexican at the Lazy Donkey and then came home and we all watched the movie, Fat Albert. We have movie nights every few days and the girls take turns picking out the movies. They never let me pick out the movies (I guess they don't want to watch a Lord of the Rings movie or Star Wars movie).

Please be in prayer for a young 2nd grade girl in Villa Rica who has had cancer come back. This little girl transferred to Ithica Elementary back in the fall and at her previous school, other kids made fun of her when she lost her hair. When she discovered that her cancer had come back, she was afraid to tell others about her condition because she was afraid the students at her new school would do the same thing. But as she has had to start going under chemo again, she needed to let others know about why she was losing her hair. My understanding is that the kids at the school have embraced this girl and next weekend are going to have a day full of activities to raise money to help this family out. The school's goal is to raise $5000 to help pay the bills. I spoke with the assistant principal this morning and she said that the mother has had to run the heat this month and keep it running and their heating bill alone was $500. I know what is like to have bills that are not even related to insurance. I will give her name this next week (I left the letter about the girl at my office) and if you would like to help out, let me know. I plan on giving a little something, since so many of you have helped us out.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, May 4, 2005 9:48 PM CDT

Day 70

It is hard to believe that Caroline had her 2nd stem cell transplant 10 weeks ago. It seems almost like an eternity. She visited the clinic this morning and boy was it crowded. Our nurse, Erika, came and got us to do triage, because there was a line of patients waiting to get in. We saw the nurse practioner, Melissa, today instead of Dr. Rapkin. She was impressed by how Caroline looked and really didn't say anything different than what we've heard during the last two visits. She did tell us that we would be doing bone scans, MIBG, and a new CT scan at the end of radiation. Her counts were up, with a white count of 3.02, Hemoglobin at 11.5, platelets at 145,000 and an ANC of 1810. They looked good. We left the clinic and headed straight to Winship. I made a wrong turn going into Atlanta down 400 and we didn't get there till around 1 pm (the appointment was at 12:30). The longest thing about today's radiation was that we waited longer in the waiting room than we did in the treatment area. The staff was super nice and so was Dr. Marcus. Caroline did so good in staying in the room by herself and I talked over the intercom with her the whole time. We were out of there within 10 or 15 minutes. Caroline will go there for the next 14 business days (no Saturdays or Sundays) at 2:30. If you would like to help drive the girls over each day please call me as I am trying to set up a calendar. I am trying to avoid missing any more school for the remainder of the year. I know that Nancy's mom is going with her tomorrow. Please pray that this will all go well.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, May 3, 2005 9:33 PM CDT

Day 69

Caroline didn't go to school today. She woke up and was very tired and we believe that she was scared that she would end up coming home. We guess that we shouldn't push her hard about school and be happy when she wants to go. We have to remember that she can get tired fairly easy. Hopefully she will be back in school on Thursday. We will be going to the clinic tomorrow for a check up and then going straight over to Winship for her first radiation treatment. It will be hectic, but we should be home fairly early. Please keep us in your prayers these next few days.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, May 2, 2005 9:58 PM CDT

Day +68

Well the third phase of treatment is about to begin. We went back to Winship for the CT simulation this afternoon. We met Dr. Marcus and then he took us to the CT simulation room so they could set up the marks for Caroline's radiation. I went in the control room with Dr. Marcus and the tech and Nancy stayed in the room with Caroline. She at first didn't want us to leave, but we finally convinced her to let Nancy go out and see that she would be OK. They put marks on her that will line up with the radiation equipment and also made a mold for her to lie in each day so that she would remain still during the procedure. After we finished with the CT simulation, they took us to see one of the machines that will do the radiation and actually let Caroline play with the remote control and watch the machine move around. The machine actually is less threatening than the CT machine. We have a doctor appointment on Wednesday at 11 with Dr. Rapkin and then we will start radiation that afternoon at 12:30. We hope that we will be able to get in and get out quick. We should know something about the future schedule after we go back on Wednesday.

Caroline did not last long in school this morning. Ms. Sewell called Nancy this morning and told her that Caroline was tired and was laying down in class and that she was complaining of being hungry. We have decided that we are going to start taking her in a little later in the morning to make sure that she is rested enough. Hopefully the radiation won't take too much out of her either.

Check out some of the pictures from the Relay for Life and the Tour de Rogers over this past weekend on the album page. We hope you like the picture at the top of the page. One of the members of my Dad's church had that done for us. That is the same picture that was on the flag that I mentioned last night.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, May 1, 2005 10:43 PM CDT

Day 67

Well tomorrow we go back over to Winship for Caroline to have her CT simulation done. We will know what to expect about the number of days for the radiation and what time they will schedule us. Please pray that Caroline will be able to handle things without needing sedation. If she has to have sedation, we will have to arrive early in the mornings at Egleston, so that she can be knocked out. We have been told by several people that if she can do without the sedation, we will be in and out fairly quickly each day. Please ask God to lay his hands on her to sooth her spirit. We know that we will not be able to be in the room with her when she is having the radiation and that scares her.

Again, we would like to thank those who came out yesterday in support of Caroline to the Tour de Rogers. I still have not had a chance to get the pictures up on the web, but maybe I can tomorrow night. There is one with Caroline riding on the back of a motorcycle with one of my Dad's friends, Rick Grant. She is grinning and thought she was in high heaven. We also have one of Katherine on the back of my Dad's bike. Katherine said the only problem was that my Dad didn't go fast enough when he brought her to the house from the mini-tour. Rick's boss at Ford made a big flag with Caroline's picture on it that he flew on the back of his bike. We are sending it back so that he and his son-in-law, Gabe Leidig, can sign it. Gabe rode for just his third time on Saturday and had only gotten his learner's permit on Friday. After riding in the rain, lightning, and wind, he got in a ton of experience. We thank them of giving and caring enough about Caroline. There were also 3 riders from the Victory Riders from Mt. Holly Church of God. They all had a good time.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, April 30, 2005 10:01 PM CDT

Day 66

It was a rainy day here in Bremen, but we still had the Tour de Rogers. The turnout was severly hampered and things got started off a little late, but things went on. The bike ride finally started at about 10:45 and they had two different rides, a 32 mile and 66 mile ride. Probably only 10 or 15 riders stayed and did the ride. We had about 15 or 20 do the 1 mile and 4.5 mile walk. Nancy and I did do the 4.5 mile ride and boy are we feeling the effects tonight. Katherine was going to walk with us, but she changed her mind right as we got started. While we were walking, my mother carried the girls and some other children to Walmart, and I think that Katherine probably enjoyed that a lot more. Nancy took a long nap this afternoon when we got back. We had about 8 motorcyle riders who came out for the ride. My dad and sister came with two others from Brooks. They left home at about 6 this morning and rode through the bad weather to get here. The motorcycle riders cut their ride short and drove up to Rockmart and then came back to Bremen. The key thing for today was that we carried on despite the weather. At 2, we had about 10 or 12 kids come out to the track at the high school for the mini-tour. They had a great time, even though it was misting rain for the entire time. Caroline drove her electric car and she tore up the track by speeding around and Katherine got soaking wet while making about 8 or 9 trips around the track. A big thanks goes out for all of those who were here for the event and especially a big thanks to Kelland and Barbara Calhoun who organized the event. I know they were dissapointed by the turnout, but we were happy to be participating. I will try to have some pictures up in the next day or so of both the Relay for Life and the Tour de Rogers. It has been a long weekend and were blessed to be able for Caroline to be here and experience all of these things.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, April 29, 2005 9:46 PM CDT

Day +65

We just got home from the Relay for Life and the girls had a great time. Caroline rode in a wagon for the survivor's lap and had a good time playing on some of the slides and things. She got her face painted and was actually the youngest survivor there tonight. I was proud of my school for raising $800. The kids really came through and I am so proud of them. We are even rewarding them with another day of breaking the dress code (for free). Carroll County schools raised right at $42,000 for Relay for Life, with my former school, Central Middle, raising over $11,000. The year they shaved my head, they raised over $14,000. They announced before they started the relay that they had raised $140,000 so far as of 7pm. Their goal is around $180,000. So many people came up to see Caroline, especially other survivors. What an encouragement to be in such company with these other great people.

I forgot to mention that yesterday Caroline's teacher, Ms. Sewell, called Nancy to tell her that Caroline had taken the last part of her G-KAP test and passed it. This is a test that is given to see whether children in Kindergarten are ready to move onto the 1st grade. I thought that this was pretty good for a girl who has been out for almost half of the school year.

The Tour de Rogers is in the moring and we have got to get up early to take part in this benefit for Caroline. Please pray that the rain will stay away or come in quick and get out real soon. The things start at 8 am.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, April 28, 2005 9:50 PM CDT

Day 64

What a great evening we have had. Katherine's soccer team won their game tonight and are now 4-0. She really has enjoyed playing soccer. After the game we went up to the high school gym and they had an event called Project Wildfire. This was an event to raise money for 3 people in our community. The monies raised will go to Caroline, Ethan (Bremen Ethan) and Cyndie Morris (One of the Bremen school counselors). Cyndie has a Leukemia that has come back and she is getting an alternative/experimental treatment that is not covered by insurance. Caroline was a little star tonight. When we arrived, she saw her very close friend, Bailey, and ran around the gym and played with him. Ms. Morris then came up and asked Caroline if she would go on stage with her. She told her yes and up on stage she went in front of the whole crowd and got a standing ovation. They were selling her bracelets and several people came up and asked her to autograph them for her. She wrote out her name on about 10 or so bracelets before she became tired. Katherine wrote out a few for her also. She just seemed like a little star, bright and twinkly (if a person can be that way). It was amazing how a line formed to get her autograph. She wanted to eat pizza when we finished there and off to Pizza Hut we went.

Tomorrow night we will be participating in the Relay for Life in Carroll County. Caroline will walk the first lap with the other survivors and walk alongside her granddaddy, Tearl Fincher. If you read the guestbook, Caroline's kindergarten class has raised the most money in their school, $585. I am proud of our school in that we have raised over $400 and will hopefully go over $500 tomorrow. This will be a 100mprovement from before, in that they have never done this before.

Saturday will be the Tour de Rogers. The event is going to be huge and we want you to be there to support Caroline. There will be a walk/run, bike rides of different lengths, and a motorcycle ride. My dad is coming over with some of his friends for the mototcycle ride and my sister may be coming up to ride also. The mini-Tour will be that afternoon and has been expanded for grades pre-school through fifth grade. Caroline will be there, but she will be riding her electric race car. She will be the only one allowed to ride an electric car because we are worried that she would not have enough energy to continually ride her bike. We may bring it along so she can try to ride it some. All of these events will help us out with expenses that insurance does not cover.

We got a call this evening that Pine Grove Baptist Church in Fayetteville is wanting to do a softball tournament for Caroline in a few weeks. A young 11 year old girl from Ranburne Alabama emailed me last night to tell me that she wanted to donate her hair for Caroline to get a wig. I emailed her back and explained that Caroline does not waearing a wig, but we appreciated the gift that she was offering. I told her that if she wanted to donate it to Locks of Love, she could and do it in honor of Caroline. She emailed me back and said that she do exactly that and said that she thought Caroline was beautiful. It is amazing how many people in this world have been touched by this strong little girl. She is a testament to the faith that we have that God is a healing God. Please remember all of our friends that are still going through this long journey with us.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, April 27, 2005 9:21 PM CDT

Day +63

Today we went to the Winship Cancer Institute and met Dr. Marcus. Caroline's favorite part of the trip was getting to see the turtles that they have in the tank in the waiting room. She has decided that she would like to have a turtle as a pet. We had a good visit and we go back on Monday afternoon for CT simulation. We will find out then when the radiation will start. Dr. Marcus said that there are still 2 little nubs of the tumor left and that the radiation will be somewhere between 3 and 4 weeks. We'll update you more on that next week.

I forgot to mention that Caroline's good friend Bailey came over from school yesterday and they had the best time. Bailey was a boy in Caroline's preschool class last year and he just loves Caroline. Nancy said they played and played here at the house yesterday. It is so good for Caroline to have such a good friend (even if it is a boy).

Kelland Calhoun brought our shirts for the Tour de Rogers by this evening. They look great and they are also selling cowbells for the cycling race. It is a tradition in France, during the Tour de France, that the spectators ring cowbells as the riders go by. They did this last year. They are selling the small bells for $5 and the large bells for $8. Finchers will have some available starting tomorrow. If you would like to help with the Tour de Rogers, you can get in touch with Kelland Calhoun through the site below.

There is a benefit at the Bremen High gym tomorrow night. It will benefit Caroline and the young boy, Ethan, who has a degenerative brain condition. I believe the event is around 7 pm. We will be going after Katherine's soccer game tomorrow afternoon.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, April 26, 2005 10:04 PM CDT

Day +62

Caroline continues to do well in going to school each day. She is learning to read a little bit more and tonight we read a short little story called "Cactus Town." She really wants to read and tells me how she wishes she could read. I am so happy that my child is here to learn how to read. I pray that she will get to read thousands and thousands of books in her lifetime. Tomorrow is an important day in our journey as we meet Dr. Marcus. He is the one who will guide us through the radiation phase. I have only heard great things about him.

We found out today that there will be a Tour de Rogers jersey autographed by Lance Armstrong that will be auctioned off on Saturday at the Tour de Rogers. If you would like the chance to have this valuable collectors item and also help Caroline, come Saturday to the Tour de Rogers. Also don't forget about the mini-Tour on Saturday afternoon. It is for children who are on trikes, training wheels, or able to ride on their own. Pray for a sunny day on that day so the turnout will be great. If you ride a motorcyle, then they are registering that morning at 7 am and beginning their ride at 8. Register in front of Finchers in Bremen. Nancy and myself are going to try to do the 4 mile run/walk (I promise it will be walking).

I am proud of my kids at Crossroads. So far we have raised $240 of our $350 goal. A lot of kids paid to be able to break the dress code today. Tomorrow is hat day, Thursday is wear your school colors day, and Friday is dress your way day. If you don't remember, my school is an alternative school and the kids have a very restrictive dress code. The thing that is the biggest hit has been the ability to have their shirts untucked and they pay $2 a day this week for the privilege. Today was also wear jewelry and several of the kids got to wear their piercings. Not a problem with a single kid over the situation. I was very proud of them.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, April 25, 2005 10:07 PM CDT

Day +61

Another good day for the Johnsons. Caroline had a good day at school and she sat down beside me this afternoon after I got home from school and explained her day to me. We spent some time this evening practicing swallowing pills. We use mini M & M's. She was successful with several of the M & M's, but when it came time to swallow the real pill, she chose to take the liquid again. We will continue to practice this step.

We spoke with Kelland Calhoun this evening. Kelland is one of the organizers of the Tour de Rogers. He said that there needed to be a clarification concerning the mini-Tour. The mini-Tour was not only for those with training wheels, but any child who wanted to ride their bikes. This again is primarily for those children up to the 1st, 2nd or 3rd grades. Also, please pray that there is no rain on Saturday. There are some preliminary forcasts that show rain this weekend. We hope to see you there this weekend.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, April 24, 2005 9:33 PM CDT

Day +60

Urgent Prayer Request

Nancy's grandmother, Peggy Leopard, is having some trouble with her weight. Peggy has been in a nursing home for a while now and has several problems, but most recently it has been her weight. She weighs 82 pounds and her family is having to decide if they will need to have a feeding tube put in. They are afraid that if they put the tube in, that she might pull it right back out and they do not want to have to have her restrained. This is an urgent problem, so please share your prayers concerning her.

Caroline had a good day today and this evening when I arrived home from the Georgia Association of Educators convention in Atlanta, she wanted to go out and eat. You know how important it is for us to fatten her up so we agreed to take her where she wanted to go. We made a trip to Douglasville and went to Tokyo Steak House. There she just ate and ate and ate. We had our favorite cook, James (strange for a Japanese fellow), and he just made Caroline smile and play with him while he cooked. She ate fried rice, steak, and chicken. We just praise God when she eats like she did tonight. When we got home, she fell asleep while I was reading her a book.

We go to the doctor on Wednesday to find out about Radiation. Please pray that they will be able to do this as quick as possible to help her avoid missing many days of school. Once we find out what days we will be going, we will be asking for people to help drive Nancy and Caroline over to the Winship Cancer Center on the Emory Campus. This is where they will do the radiation. Also pray for Caroline as she learns to take pills. She has to take Bactrim 2 days a week, twice a day. She has been doing it by liquid, but the hates the taste. Dr. George gave us a prescription for the pills and he said learning how to take these will help her get ready for the Accutane she will start taking on Day 90 (1 month away). We also hope to find out about when they will take Caroline's central lines out of her. She can't wait to go swimming or even just taking a bath and go totally under. We have had to be so careful in giving her baths since last July.

Don't forget about the Tour de Rogers this coming weekend. The information is at the link below.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, April 23, 2005 10:25 PM CDT

Day +59

I am sorry for not updating last night, so I will update for the last two days. Caroline had a field trip yesterday and had a good time. Nancy said that she and Ms. Sewell took turns carrying Caroline around the lake, so Nancy was pretty tired after she got home. Caroline and Katherine had their cousin, Amber, over last night and she stayed today till about 2. The house is now a disaster area after these girls played hard. I have been at the GAE spring convention yesterday and today. I have to be back in Atlanta in the morning by 7am. Please remember to leave us a note when you visit. It is so encouraging for us to read these.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, April 21, 2005 9:37 PM CDT

Day +57

Caroline had another good day today and did well in school. She has a field trip tomorrow (depending on whether or not it rains) and they are going to the local state park and having a hot dog roast and other exciting things. Katherine went to a birthday party tonight, while Nancy, Caroline, and myself first went to the funeral home to visit with the Simpkins family and then went to Carrollton to eat at the Lazy Donkey. Caroline loaded up on chips and salsa and had a good time. So many people have come up to us and have said how Caroline is such a blessing. That is so true. We thank God for all that he has done in her life and continues to do. Please continue to pray for her and us as a family.

There are several important events coming up this next week. On Thursday night there is going to be a benefit at the school gym that will be for Caroline, Ethan (Bremen Ethan), on next Friday night is the Carroll county Relay for Life (Caroline and her grandfather have been asked to participate in the first lap as Cancer survivors) and then on the next day is the Tour de Rogers. All of these are important and we hope that you will be able to participate in some of these events. By the way, Haralson county's Relay for Life is tomorrow evening and this is where the girl's school is participating while my school is working to help with the one in Carroll County. My students have so far raised over $100. This is the first time that my students and staff have participated and our school goal is $350. My teacher who is heading up our school drive told me that anything we give is an improvement in the past. If you have any extra money you would like to send to help the Crossroads Alternative students out, send it to Crossroads Academy, 225 E. College St., Bowdon GA 30108. Please make any checks out to the American Cancer Society. You don't have to send anything, but I think my kids can go way over their goal.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, April 20, 2005 10:40 PM CDT

Day +56

Caroline had another good day at school today. We did the blood counts from the visit to the clinic yesterday. Her white count was 2.32, her hemoglobin was 11.8 and her ANC was 1100. These numbers are about the same as they were at the last visit. As long as we maintain, then that is ok. Please continue to pray for Katherine as she continues with her testing tomorrow. She is going to a western themed birthday party tomorrow evening. Remember to keep us in your prayers.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, April 19, 2005 10:00 PM CDT

Day +55

Caroline went to the clinic this morning and got a good report from Dr. George. We did not get our counts today, due to a break down of the machine that does the counting. Dr. George said that they would have to carry it over to the hospital and he would have Erika call it in to us later on today. She didn't call, so we guess that we will here from her tomorrow. Dr. George was impressed with how good she was feeling and said that her weight was better, but not exactly where he wanted it to be. He said that the effects of the mucousitis seemed to be better also. We will find out in the next few days about meeting the radiation oncologists next week and begining the next phase of Caroline's treatment. We go back to the clinic in two weeks and will see Dr. Rapkin on that day. We also got to see Tyler Copely and his mother at the clinic. Tyler is a sophomore at Harrison High School in Cobb County and is a student of my dear friend Renae Kiger. I even sent a message (barb) back to her by him and she promptly emailed me this afternoon to return the smart comment.

We got back from the clinic around noon today and I went on to work. Caroline was a little tired and she stayed home and will return to school in the morning. We all went to church tonight for revival and Caroline actually lasted for the entire service. We hope that she will last and do as well tomorrow night.

I mentioned to you last night about George Simpkins who died last night. His wife, who was also injured in the accident, passed away at 4 this afternoon. She died 16 hours after her husband. This is actually a large relief for their family. They will have their funeral for both of them on Friday morning. It seems fitting for a couple that lived 56 years together to go into heaven together. Please remember their family.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, April 18, 2005 11:00 PM CDT

Day 54

Caroline had a harder time getting started today. Nancy said that she had a hard time getting her to school this morning. She had to take her bactrim this morning which is a medicine she has to take twice a day, two days a week. She hates taking this medicine. She also said that she was scared to go to school. Nancy finally got her to go at around 10:30 and then eventually got to leave her alone. She stayed the rest of the day. She got upset after school when she wanted her cousin to come over and she didn't get to. Oh well, these are just things we have to deal with. She goes to the clinic in the morning and we hopefully will get things ironed out about radiation. We'll let you know.

Hopefully you are getting your bracelets. We don't have the adult size bracelets distributed yet around Bremen. If you work for Carroll county schools, you can order a bracelet from Sharon Pate at the County Office. Just send her $5 and she will send you a bracelet in the county mail.

Be in prayer for one of our family friends. George Simpkins, Letia Sellers father, passed away tonight a little after 10 pm. He had been in ICU at Tanner Hospital in Carrollton for the last 23 days, following a car accident. Letia's mother, Doris, is at Atlanta Medical Center in ICU. They plan on informing her tomorrow. The funeral is tentatively scheduled for Friday, with visitation at the funeral home on Thursday. I just got back from the hospital and spent some time with the family.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, April 17, 2005 9:03 PM CDT

Day +53

We hope that you have had a great weekend. We here at the Johnson house have had a pretty good one. My apologies for not updating last night. We went to my parents' new house and celebrated my father's 66th birthday. His actual birthday is today and we also celebrated my grandmother's birthday that was on Friday, she turned 87. The girls got to play with their cousins, April and Noah, and rode bikes, four wheelers, and Caroline's electric car. It was just "SO" good to see Caroline playing like there was nothing wrong with her, the way that she used to play. This morning Caroline went to church for the first time (not counting Wednesday night) and in the middle of the song service she told her mother that she was hungry. Nancy's mom, Alice, is the church hostess and takes care of the church kitchen. Caroline and her grandmother took a trip to the kitchen and came back with a bag of Doritos to hold her over till lunchtime. We are having revival this week and boy is the preacher good. I invite anyone in the area to come to First Baptist Bremen at 7 pm this week (thru Wednesday). The revival preacher is the editor of the Christian Index. Back to Caroline, we ate lunch at Fincher's for the first time in a long time and so many people stopped by to tell us how glad they were to see Caroline. After lunch, Caroline wanted to go to Walmart to hunt for some flip-flops and also she wanted to find a pair of roller skates. I don't know why she wants roller skates all of a sudden, but we did not find any there. That will have to wait till later. This afternoon the girls played and Caroline was tired, so I went on to church tonight without them. Pray that Caroline continues to improve as she has been doing this week. Pray for Katherine as she takes her CRCT tests this week and next. She is usually a good test taker, but all the prayers can't hurt.

The bracelets are finally here. My sister is mailing out those that have placed orders by mail tomorrow. Fincher's has them here in Bremen and they also have them at Headlines and at Curves. We may have them at some other places later on. The cost is $5 and they are pretty shade of blue. The bracelets say "SWEET CAROLINE" on them. A big thanks to my sister and to Mary Sellers for coordinating this for us.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, April 15, 2005 9:55 PM CDT

Day +51

Another good day for Caroline. She lasted most of the day today. She came home after Nancy went to the school to deliver the new bracelets to Ms. Sewell. This was at the end of the day during recess. She is doing really good in school and we just are so happy at her progress.

The bracelets are here as Mary Sellers came by and brought the youth size bracelets. We are going to celebrate my father's birthday tomorrow and are getting the adult size bracelets there. Alice will have them at Fincher's on Sunday, so if you are planning to eat there on Sunday, you can purchase yours there.

Katherine's team won there 2nd game this afternoon. The white team beat the grey team by a score of 6 - 3. They were down 3 to 1 and then had a great comeback. She really enjoys playing soccer and we are so proud of her.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, April 14, 2005 9:43 PM CDT

Day +50

It is hard to believe that we have finally made it to day +50. Caroline is doing better and better each day and today was no exception. Caroline woke up this morning and went to school right on time with all of the other children. She went to PE and told us that she "runned" today. She hasn't told us much else, but Nancy did speak with her teacher, Ms. Sewell, who told her that Caroline had the best day today. Nancy's mother told us today that she has started blossoming so much since she has started going out in public. Caroline is becoming a child again who is enjoying life and not worried about being sick.

Katherine had her first soccer game this afternoon and she played extremely well. They won their game by a score of 3 - 1. She played for 3 of the 4 quarters and she loves to play defense. She has another game tomorrow afternoon. There are only 3 teams in the league and they play each other.

We appreciate the prayers that have been said on Caroline's behalf. IT is amazing to see how God is answering these prayers. We still have a way to go, so please continue to pray for us.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, April 13, 2005 9:48 PM CDT

Day 49

Caroline had a wonderful day today. We decided that she would go to school today and she didn't get there at the start of the day. She woke up and felt a little sick this morning, but Ms. Sewell called to see if she was coming and Nancy told her that she would have her there a little after 9. When they drove up to school, her class was coming out the door holding a huge sign that said, "Welcome back Sweet Caroline." I figured that she would not last all day, but last she did. She had a great time being back at school and Nancy said that the kids could not stop hugging her or just touching her. They were wonderful. Nancy told Ms. Sewell that she would get her to school after PE (around 8:50 in the morning), but Caroline told us tonight that she plans on getting up and going to school right on time. She also said that she plans on going to PE. We shall see. She also told her mother that she wants to by herself tomorrow. The old Caroline is coming back. Caroline told her mother today that she wishes things were back to the way they were before she got sick. I think that is going to occur and maybe sooner than we thought. We went to church tonight to eat supper and we amazed everyone with Caroline being there. Several people told me that it was so encouraging seeing our family back at church all together and just seeing her there. We are still not through with the journey, but we are over the hardest part. Radiation and the accutane will be easier.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, April 12, 2005 10:29 PM CDT

Day 48

We had a good visit to the clinic at Scottish Rite today. It felt very strange going back over there after spending so much time at the "Egg." Everything was going well this morning till after Nurse Erika drew blood and flushed Caroline's lines. Caroline got nauseous and went to the bathroom and threw up. After that she felt fine and our visit with Dr. George went great. Caroline's counts were up today with her White count at 2.36, her hemoglobin was at 12, her platelets were at 119,000, and her ANC was at 1.55 (.80's last week). Dr. George was impressed with what he saw with Caroline and remarked how hard a time she had this last transplant. After looking at her mouth and noticing some lingering sores and also commenting on how he wanted her weight to be up even higher (gain of .2 kg from last week), he decided that we would put off the start of getting ready for radiation for 2 weeks. He wants us to come back next Tuesday and then see how her counts are and then set up appointments for radiation the next week. We got a chance to see Dr. Rapkin today, as he stopped in to ask Dr. George a question. His hair is growing back pretty good after having it shaved on St. Baldrick's day (St. Patty's day) to help raise money to fight cancer.

We got some other good news today in that Caroline can start back to school as early as tomorrow (Wednesday). She also does not need to wear her mask anymore and can go more into public places. Dr. George said he was impressed by her counts and felt that she was safe. We went by this afternoon and spoke with her teacher, Ms. Sewell, and informed her that she was ready to come back tomorrow. She said that it will be a surprise, in that they were expecting her back on Thursday. She and I went to Walmart this evening and tried to find a video game that she wanted. No luck, so I will order one from Amazon.com after I finish writing this tonight.

I talked with my sister this afternoon, and the adult size bracelets arrived. She said that they look great. We are expecting the youth size bracelets to be in by Friday. I am going to pick up the bracelets on Saturday, when I go to my parent's house to celebrate my father's birthday. We should have them for sale in Bremen on Monday. I will let you know for sure, so watch the page for updates.

I asked you last night to remember one of my dear friends, Karen Suddeth in your prayers for losing her father on Sunday. I believe that his funeral is tomorrow. I want to ask you to remember another family that is very close to ours in prayer. Letia Sellers is Nancy's mother's best friend and she has always been there for us. Her parents were involved in an auto accident 2 weeks ago. They were returning on a Saturday evening from eating in Carrollton for their anniversary. A truck decided to make a U-turn in front of them and they ran into the truck. Letia's mother was taken to Atlanta Medical Center and is still there in ICU. Her father was taken to the hospital in Carrollton and he is in ICU there. He is very critical and will probably die by tomorrow morning or very soon. To let you know how close this family is to us, Letia's daughter, Mary, is the one who went with Katherine on her trip to Washington while we were in the hospital with Caroline. Mary is also the one who has ordered the youth bracelets for us. 3 of Letia's daughters were in our wedding as attendents. So they mean a lot to us and her father, George, is one of the nicest men I have known since coming to Bremen. Please pray that the Lord will be merciful and take care of this family's needs.

Charles, Nancy, Katherine and Sweet Caroline

Monday, April 11, 2005 10:09 PM CDT

Day +47

We had another ok day today. Caroline has been taking her bactrim today (she has to take it 2 days a week, twice a day) and boy does she hate the taste. The only thing that is good about having a bad taste is that she eats ice cream to get the taste away. Today she was telling Nancy that she thought it was neat that it just after our vacation last year when we discovered her cancer and now as she is getting better it is getting closer to the time for our next vacation (she doesn't realize that it is 2 or 3 months away). She already has her mind set on going to the beach and asks us each day how long before her tubes are removed so that she can go swimming. She saw a screen saver on Nancy's page with a tropical beach and said that is where she wants to go. I guess I better start exercising (yuk) to get rid of this 20 pounds I have added since the last vacation (wonder why?).

Please remember a dear friend of mine who lost her father on Sunday. Her name is Karen Suddeth and she is the director of Secondary Education for Carroll County Schools. She and I taught together at Temple High for several years. She taught English and is always there for me when it comes to school. Any important paper that I have to write always goes to her first to make sure that I am not writing something stupid or with bad grammar. The biggest compliment that she gave me this year was that my writing this journal each night has helped my grammar out. Her father has been ill, off and on, for several years now. He has always meant the most to her and I know she will miss him. Please say a prayer for her and her family.

My school is participating in the Relay for Life this year and it is their first time. We are doing some fund raising by letting our students break our dress code. We expect this to raise a good bit of money for us because we have the toughest dress code in the system. The kids also just want to do something to help fight cancer. One of the biggest things they are excited about is getting to wear their shirt untucked for $2 a day. We are doing the fund raising in 2 weeks so that the CRCT tests will be through and it won't detract. In a weird way, my kids are doing something to help others out and some don't even realize it. Our school goal is $350 and i'm hoping we can double it.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, April 10, 2005 9:31 PM CDT

Day +46

Caroline had a good day today and we as a family spent some time outside today. It was nice to have a day where we were able to go outside and spend some time as a family. We are still eating in small bites, but the bites are becoming more and more often. We hope that you are having good days in your lives as well. Spring break is over and Katherine goes back to school in the morning and we hope that maybe Caroline will get to go back on Thursday (day +50). We will make sure about Caroline when we go back to see Dr. George on Tuesday. It will feel funny going back to Scottish Rite after spending so much time at Egleston. For most of the Scottish Rite patients, the only time they spend at Egleston is for the transplant. Caroline spent the time from November 1 till last Monday going to Egleston. This was because she had her surgery there and then her last round of chemo, followed by her 2 stem cell transplants. The staff at both sites are great and it will be good to get reaquainted with the Scottish Rite team.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, April 9, 2005 8:29 PM CDT

Day +45

Sorry for not writing last night. I decided to take a night off of writing for a change. Yesterday, Caroline decided that she wanted to eat chinese. We went and ate at the chinese restaraunt in town last night. She ate at her food and that was not much. When we got home she wanted something else to eat. That is usually the way things go lately. Again tonight, she decided that she wanted to go to her grandmother's restaraunt, Fincher's. She decided to have steak and she wanted it juicy. The only problem with that is that she has to have her food cooked thoroughly. She ate some of her steak and then when we got home she told Nancy that she wanted Tacos. Nancy convinced her to eat some soup and that we would have tacos tomorrow night. She is eating a little more each day. Thank you for the prayers that you have said for her and we ask that you continue to pray for her. We think that she might go back to school later this next week.

I spoke with my sister and she told me that the supplier of the bracelets shipped them to her on Wednesday and that she should receive them by Monday or Tuesday. The youth size bracelets should be in by the end of next week. I promise to let you know when they will be available to buy here in Bremen.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, April 7, 2005 9:13 PM CDT

Day +43

Caroline had a good day today. This evening we took the girls to Carrollton to eat at our favorite Mexican restaurant, The Lazy Donkey. Caroline wanted to go here last night, but I told her I had choir practice at church so we had to postpone the going out to tonight. She loves to eat their chips and salsa. Boy, did she eat the chips. We first ordered her a taco, but she didn't want it, so we ordered her a quesadilla. She didn't want to eat that either. Today she ate roast beef for lunch and then snacked on fruit roll up. We are happy that she was eating more today. She also has started to drink Sprite again. We appreciate the prayers that you are saying each day.

We are still waiting for the bracelets to arrive. They should be in any day now. If you want to order them please send the money to Terri Dumas (my sister) at the address above.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, April 6, 2005 10:24 PM CDT

Day +42

It is hard to believe that it has been 5 weeks since her last stem cell transplant. Only 8 days to go till she can go back to school and go more places in public. This morning, Nancy took both Caroline and Katherine to see the movie "Robots". I got mixed reviews from the girls. Caroline loved the movie while Nancy and Katherine said it was just ok. Nancy said that Caroline did not eat nor drink anything while there and even though she said she was hungry after the movie, she didn't eat anything then either. She didn't want to walk too much today while at the theater. Nancy said that she had to carry her most of the way. Please pray that Caroline will eat more and become more active. She is doing better, but we still have a long way to go.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, April 5, 2005 10:36 PM CDT

Day +41

Caroline had an ok day today. No sickness, but she didn't eat as much today. I guess she had enough Japanese last night. We had a call from Dr. George's office and we go back to Scottish Rite next Tuesday for a meeting with him. That will officially make us a Scottish Rite patient again. Continue to pray for her that she will continue to eat and get stronger each day. I have to check out the movie schedules tonight to see when the movie "Robots" is playing. Caroline wants to go tomorrow. Nancy will take her and Katherine during the day. The rule is that she will have to sit away from a crowd and then Nancy will have to wipe everything down that she can come in contact with, especially the arm rest of the seat.

We hope to have the bracelets in and ready to be out by the end of next week. If you are planning on ordering them, the cost is $5, plus $1 for shipping. The address is above under my sister's name, Terri Dumas. We hope to have them out at the same time here in Bremen at Fincher's and at Headlines. The bracelet is a light shade of blue and has "Sweet Caroline" written on them in the same style as the "LiveStrong" bracelets.

Don't forget about the Tour de Rogers on April 30. The proceeds from this will help out with Caroline. They will have a walk, bike rides, motorcycle ride, and even a junior Tour for preschool through 1st graders that afternoon. Check out the link at the bottom of the page to register for this.

The Lord is merciful

Charles, Nancy, Katherine, and Sweet Caroline

Monday, April 4, 2005 9:08 PM CDT

Day 40

Well today was a whole lot better day than we thought it would be. Caroline went to the clinic this morning and we thought things were going to be rough with her dropping weight (according to our scales) and we went expecting that she would probably have to have a feeding tube put in. Well her weight was at 15.3 kg which was only .1 less than it was last week. Either our scales are way off from the clinic scales or the Lord added a good bit of weight to her over the night. Whatever the reason, they were pleased with the fact that she was maintaining her weight. She also decided to start eating a lot more today. Her counts went up and her White count was up to 2.28 and her ANC was at 1.15. Her hemoglobin was at 12.0 and her platelets were at 112,000. The best news was that we have been released from the care of Egleston and we will start going back to Scottish Rite next week. They said that they saw no reason that she should stay under their care. They also gave her some good news concerning things that she can do. She can now go to restaurants to eat and she also asked if she can go to a movie. She wants to go see the new movie "Robots" and they told us that we need to go to a matinee showing when there would be fewer people there and that we have to wear the mask into the theater and once we get in an area away from others, she could take the mask off. We have orders to also make sure that we wipe down the chair with the anti-bacterial wipes. Dr. Haight said that she would be touching the arm of the seat and then go into the popcorn and we needed to make sure that we avoid germs as much as possible. She decided that she wanted to go eat at the Japanese steak house in Douglasville and so we made plans to go tonight. Check out the pictures of her at Tokyo Steak house tonight. We called my parents and they came over and Nancy's mom also went with us. We had a great cook, who really did good with Caroline. If you go over there, ask for James (not the most common Japanese name). She ate so well it amazed us. She knew what she wanted and she had a great time. It is amazing how God answers prayers. I know so many of you have been praying for her to get better and want to eat. Please continue to pray that this will continue.

While we were at the clinic, we made a point of stopping by and seeing Ellen, the nurse practioner on the BMT hall. She really worked well with us and Caroline wanted to make sure that she told her goodbye. It feels funny saying goodbye to Egleston. It seems that since we have been there for treatment from November till now (surgery and BMT), they feel as much a part of our lives as Scottish Rite, in fact we have spent more time at the hospital there (71 days) than we have at Scottish Rite (about 30 days). But our regular oncologist, Dr. George, is who we go back to now. We really would like to thank Dr. Chiang, Dr. Haight, and Dr. Horan and all of the nurses (Anne W. and Tammie especially) along with child life specialist Sarah and our social worker, Becky Lavender. They really helped us along the way and took wonderful care of Caroline. The next thing on the agenda will be getting ready for radiation and also having her central lines removed. When it comes time for her going for radiation, we will be asking some of you to help us out in driving Nancy and Caroline over each day. Once we have the days down that we will be going and the time frame, we will ask if any of you would like to drive them over. This will help so that I won't have to take off for the four weeks. We'll have something posted later.

Thank you again for praying for us

Charles, Nancy, Katherine, and Sweet Caroline

ps - We did get a chance to see Gwen this morning. She didn't seem to be too excited about seeing me and I didn't get a chance to speak to Tabitha, but she did look good. I also spoke briefly to Kylie's mom, Raquel. It was nice to see these families. Please remember to pray for them as they go through these trying times.

Sunday, April 3, 2005 9:27 PM CDT

Day +39

Caroline today has been a little (and I stress the word little) bit more active. She has eaten occasionally throughout the day. Nancy weighed her this morning (we have a scale that weighs in both kg and lb) and her weight was at 14.8 kg. Her weight this past Wednesday was at 15.4 kg and the doctor said he wanted her to at least maintain her weight. We will see what the doctor says tomorrow. Our appointment will be at 10:30 am, so pray that things will go well. We hope that her white count will also be a little higher.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, April 2, 2005 9:29 PM CST

Day 38

Sorry for not updating last night. Things are going about the same concerning Caroline's appetite. She is eating little bits here and there. She is not eating like we would like her to, but at least she is eating and drinking something. Please continue to pray for Caroline that she will eat more and more. We return to the clinic on Monday and I fear that she might get a NG tube put back in her nose. I am taking off Monday so that I can be there with her.

I spoke with my sister yesterday and she told me that she has spoken with the supplier of the Sweet Caroline bracelets. She is expecting to receive the adult size bracelets around the middle of the week and he said that he was hoping to send out the youth size bracelets to Mary Sellers by the end of the week. We are saying that the bracelets should be available around April 15. Again, you can order them by mail to the address listed at the top of the page. We will have them available in Bremen at Fincher's and Headlines. We may have them available at other places. The cost will be $5 and if you want them by mail, please add an extra $1 to cover shipping costs.

Please remember to write a message for us in the guestbook so we will know you have visited. It is always encouraging to read your messages.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, March 31, 2005 9:20 PM CST

Day +36

Things are going about the same here at the old homestead. Caroline is still not eating like she should. She ate some this morning and then turned around and threw up. The rest of the day she ate little bites here and there. We tried to get her to have a milk shake, but she refused and she is one stubborn girl (takes after her mom). Please pray that she will have more of an appetite. Next week is the spring break for the girls (mine was last week) and Caroline has an appointment at the clinic on Monday. They still are not releasing us back to Scottish Rite yet.

Don't forget about the Tour de Rogers. Check out the website at the bottom of the page. This will benefit Caroline. There will also be a motorcycle ride, so if you know someone who rides, inform them and there is a registration form for that also.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, March 30, 2005 9:29 PM CST

Day 35

Caroline went to the clinic today and her counts were pretty stable. Her white count is still low at 1.94 (which is about what they were last week) and her ANC was above .800. Both her hemoglobin and her platelets were higher than they were last week. The issue that concerns the doctor is that her weight has continued to drop and was at 15.4 kg, which is a drop from 16 kg last week (multiply by 2.2 to get the pound). Dr. Chiang wants Caroline to drink Boost to raise her caloric intake and wants her to eat and drink as much as possible. She has to go back to the clinic next Monday for them to check her out again and if her weight goes down further, then they will have to do something to get it up. Please pray that our little girl will start eating better and better each day and that she will gain or at least maintain her weight. Dr. Chiang told Nancy that after Monday he might allow her to stop wearing her mask and they will also make a determination about removing her central port. Nancy asked about when she might be able to go to school and he told her that considering that she will have to have 3 to 4 weeks of radiation, she might make it back to school around the last week of school. Hopefully we will be able to get her back in sooner. We will see what goes.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, March 29, 2005 9:27 PM CST

Day +34

Caroline had a normal day today, minus a stomach ache in the late afternoon. It is nice to say normal, because hopefully all I will have to write about will be "normal" days. She goes to the clinic tomorrow for a check up. Nancy and her mother will be taking her, so that I can go to work. Be prayerful that her counts will be up and hopefully they will release us so that we can go back under the care of our regular oncologists.

Katherine practiced with her soccer team tonight for the first time this spring. She had a great time and did good. She says that she really likes playing defense. It was nice to see her have a "normal" day also.

Pray for a family from North Georiga who lost their son to Cancer today. His name is Coulter and you can check out his website at www.caringbridge.org/ga/coulter. He was a Scottish Rite patient who was being treated in Cinncinati. If you have time you can read about him in his journal. I believe that he was on day +60 or so on his Bone Marrow Transplant. This is a reminder that cancer is a beast that must be defeated.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, March 28, 2005 9:16 PM CST

Day +33

Caroline had a better day today and ate a little more than she has since she has been home. She wanted to eat meatloaf tonight, but when we put it in front of her, she changed her mind (I understand when it comes to meatloaf, yuk!). She laughed a little bit with me this afternoon when I got home as I was able to tickle her. She has not let me do this in a while and it was great to hear her laugh. Please pray that she continues this improvement.

It was good to be back at work and things went pretty smooth. The kids were not too bad today and hopefully things will continue to go smooth (yea?)

Katherine finally made it back to school today. She had been out three days last week with a cold and pink eye. She worked hard over the weekend making up her homework and even worked hard today to get her homework done before she left school. She is having a hard time this year with the pressures that she has had to go through with us being gone so much and she has done exceptionally well. I am proud that she is our daughter.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, March 27, 2005 8:49 PM CST

Day +32

I hope everyone had a great Easter holiday. Our pastor this morning spoke about how most Christians around the world speak about how Christ has arose, where in America we generally say Happy Easter. So I say to you, Christ is risen.

Caroline had an ok day today. She still is not eating that much, but has eaten a little here and there. She did get to go over to her grandparents house yesterday evening and hunt for eggs. She was not the fastest and got tired pretty quick. She did enjoy the hunt. My parents came over, along with my youngest sister KK, and got the chance to watch her and Katherine hunt for eggs. She tried eating some candy and when we got home she got sick. Today we went back over to her grandparents house again and she stayed inside while her cousins hunted for eggs (while avoiding the rain). We made sure that her cousins all stayed away from her.

Tomorrow is a the day I go back to work. I have been away for a month (I did work 2 days during that time period). I hope to be back almost every day (minus 1 or 2 clinic visits). I appreciate the job that my staff has done while I have been away. They work with some of the toughest students around and we try to make a difference in their lives. The idea behind an alternative school is to provide an alternative to being expelled and provide that extra opportunity for that student to be successful.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, March 25, 2005 10:07 PM CST

Day +30

Caroline went to the clinic this morning and her white count has gone back down to 1.92 and her ANC was at .630. They did not put her back on Neupogen and want to see if the counts will come back up on their own. They did take her off of her reglan and prevacid for now and she starts back up on the bactrim tomorrow and Sunday. We were given permission for her to eat restaurant food again, as long as it is cooked well done (we stopped at Wendy's on the way home for her favorite chicken nuggets). We don't have to go back to the clinic till next Wednesday and that will probably will be our last visit to Egleston before we go back to our regular oncologists at Scottish Rite. Pray that her counts will come back on their own.

Don't forget about the Tour de Rogers on April 30th. They have added a Mini-Tour for children 4 to 7 and will be from 2 to 3 pm at the Bremen High Stadium. It will be for trikes, bikes w/ training wheels, and walking. The registration fee is $25 for this event also and you can get more info at the link at the bottom of the page. We appreciate all that is being done to help Caroline out with this event.

I mentioned in the journal the other day that my paternal grandmother died last Sunday and the funeral was this past Wednesday. I want you to remember my father at this time.

Charles, Nancy, Katherine, and Sweet Caroline

ps. Hope you like the new picture at the top of the page. I had to almost bribe my children to let me take a new picture of them together.

Thursday, March 24, 2005 8:28 PM CST

Day 29

Another good day today. Caroline has felt pretty good today and has not had any real stomach pains today. We go back to the clinic in the morning for counts again. Please pray that they go up again and that they maintain or go higher. We need for the marrow to stabilize. Caroline had a visitor this afternoon. Her teacher, Ms. Sewell, came by and brought a bag of eggs from her classmates. She said that every morning she reads the journal and they have a moment of silence for Caroline. I will try to write more things for those kids next week when they are back in school. I made the mistake of tasting one of the candy eggs (I thought it was candy) and had a mouth full of soap. It took all evening to get that taste out of my mouth. I will read the packaging better next time.

I had a chance to speak with Ethan Blank's mother today at the elementary school here in Bremen. Ethan is the 2nd grader who has a terminal brain condition in which his white matter is dissolving (I hope I have described it correctly). We had a chance to talk about how tough it is to have a child with a catastrophic disease. I really feel for their family in that he has only 1 or 2 years. He will go blind and deaf and then become bed ridden. His thinking skills will be normal. Please pray for this family. They had a fund raiser last week and if you would like to send something for this family, you can send it to me at the address at the bottom of the page and I will see that they get it. I told her that we have to put our worries in the Lord's hands and have faith that God will do what is best. We have to understand that we have no control and stay strong.

Charles (soap mouth), Nancy, Katherine, and Sweet Caroline

Wednesday, March 23, 2005 10:25 PM CST

Day 28

Caroline got a good report today when she went to the clinic. Her counts were all up, except her weight. She weighed 17 kg on Monday and weighted 16.3 kg today (almost 2 lbs. smaller). The doctors said that did not need another dose of neupogen to build up her white count and that they wanted the marrow to try and keep up the count on its own. We have to go back to the clinic on Friday morning just to have counts taken again.

The funeral went well this afternoon. My father preached the funeral for his mother and did an exceptional job. Dad asked me to do the closing prayer at the gravesite and I felt honored to be asked to do this for him and his brothers and sisters.

Don't forget that you can go ahead and order your bracelets from my sister for $5 each and $1 per order for shipping. She told me today that she has received orders for about 50 bracelets. They should be in by the end of the month, and we will have them sent out as soon as possible. Her address is listed at the top of the page.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, March 22, 2005 9:50 PM CST

Day +27

Caroline had an ok day today. She still is pretty weak and feels somewhat lethargic, but she did try eating more foods today. She has a clinic appointment tomorrow morning and Nancy and her mother will be taking her. I am traveling down to Cochran with my sisters to go to my grandmother's funeral. Katherine did not go to school today, as she has been feeling sick ever since she got back from the Washington trip last week. Pray for all of us tomorrow as we all go our own ways. A big thanks to Nancy's mother for staying with the girls tonight so that I could take Nancy out to eat. It was our 13th wedding anniversary yesterday. We both are trying to get back to being normal after spending 30 days in close quarters in the hospital. Nancy said tonight that she just wishes things would hurry and get back to normal. Who knows when that will be. We just continue on and pray that God will take care of us.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, March 21, 2005 9:10 PM CST

Day 26

Today was a clinic day. It must have been so for everyone, because there was not a parking space in the parking deck. I told the security guard that I had a BMT patient and he told me I could try riding around for a while in the deck and wait for someone to leave. I was not the only one doing that. I let Nancy and Caroline out on the 4th floor after going all the way up to the top level. I drove around for a little more and then decided that I should just park at the Emory deck. As I was leaving, I asked the parking attendent where should I park, a person was leaving from where they had parked along the road beside the parking deck. The Lord provides. We got there at 10:30 and we left at 2pm. Caroline's white cell count was extremely low and was down to 1.83 and her ANC was down to .53 (they want her to have it at 2.00). They decided to give her neupogen to build up her counts and Nancy will take her back for a check up on Wednesday. While we were there, I went and checked on Ethan and Kylie. Ethan was to have his tubes out this afternoon and they are going home (yes, "home" and not the hotel) tomorrow. His white count was up 19.0 and they felt he was safe enough that he probably won't need an emergency room visit. Kylie started her chemo today for her transplant next Monday. I stopped by to see them, and she had just fallen asleep. I did get to see her mom and wish them luck. Please pray for her and her family as they begin this arduous journey.

I will be going to Cochran on Wednesday for my grandmother's funeral. My parents have asked me to be a pallbearer. I want to be there to be supportive of my father, who has always been there for me. I can think of no one greater man than my father.

Don't forget to add the links above as favorites on your computer. I will be taking away the links by the end of the week, as Caringbridge has asked us to do.

Charles, Nancy, Katherine, and Sweet Caroline

PS - Did you notice that we have gone over 100,000 hits on the site? We thank all of you who stay connected with our family and continue to pray for us.

Sunday, March 20, 2005 8:51 PM CST

Day +25

We had a good day today, minus a couple of times that Caroline threw up. We had to give her some benedryl this evening to help with the nausea. We have to go to the clinic tomorrow for a check-up, so please pray for us that Caroline will show enough improvement that they will not have to give her TPN for nurishment. She has been eating chicken broth several times over the weekend.

It was nice to go to church this morning and be able to sing in the choir for the Easter cantata. I don't know how much I was able to contribute (I hadn't been to practice since Feb. 13), but the rest of the choir did an outstanding job. I only wish that Nancy and the girls would have been able to attend. We are patiently waiting for day +50 to get here in the middle of April.

Please pray for my father and his brothers and sisters. My grandmother passed away this evening, sometime after 7pm. I am not sure when her funeral will be, but luckily for me it is spring break and I won't have to miss anymore school to attend the funeral. The funeral will be in Cochran in south Georgia (technically Middle Georgia). Pray for my parents as they are down there helping with the arrangements. I am sure that my father will have a part in the funeral.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, March 19, 2005 10:04 PM CST

Day +24

Another nice day being at home. Caroline is doing good and has been eating chicken broth a lot today. We ate a tiny amount of apple sauce (w/ medicine mixed in). She is doing good taking her oral meds, even better than we thought she would. We spent today not doing much. God really blesses us and thank you for all of the prayers that have gone up on Caroline's behalf.

On that note, there is a young 2nd grade boy in town that has just been diagnosed with a rare degenerative brain condition. As I understand it is slowly dissolving his brain and within a few weeks he will become bed ridden and then he will pass away. I want to commend a group of guys in the community for organizing a fundraiser for his family. Ray Johnson (no relation) is a landscaper and also does lawn care. He has some contacts and they held a Tree sale and the last I heard was they had around $11,000 this afternoon. They wanted to donate some to us, but we told them that we felt this other family's need was more pressing. According to what I heard this afternoon, the doctors have told the family to do whatever they were going to do with him in the next three weeks. If you would like to make a donation for his family, please send anything you would like to donate to me at the address at the bottom of the page and put on there: For Ethan (a different Ethan than the link above). I will pass anything you send along to those who are collecting the money.

Don't forget about the Tour de Rogers on April 30. This bike race, running and walking event will benefit Caroline. The information is at the bottom of the page. Also if you are interested in getting a "Sweet Caroline" bracelet, you can go ahead and place your order. The cost is $5 per bracelet and make sure you send $1 for shipping costs. The address is located on the page above this journal. The bracelets are to be in around the end of the month.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, March 18, 2005 10:08 PM CST

Day 23

We are at HOME. We got home this afternoon at around 2:30 this afternoon. Things are going well for us. Caroline has not had a major stomach ache today and she has taken her medicine pretty good for us. I can't stress what good medicine it will be for Caroline. One of the first things that Caroline did when we arrived was to give Katherine a great big hug. The youth group from the Methodist church made blue bows and they hung them throughout town to welcome Caroline home. We appreciate their care for Caroline. Please pray for Caroline that she will continue to take her medicine well. Also, please remember our friend Ethan as he is finishing up his 2nd transplant. He is doing well, but is dealing with the side effects of the chemo.

We will have to remove the links from the top of the page within the next week. We have been notified by Caringbridge that the use of Caringbridge links is not allowed at this time due to confidentiality reasons. They are trying to come up with a solution. My suggestion is to add this links to your favorites if you are using Internet Explorer. I will remove the links by Wednesday of next week (I have till the 24th).

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, March 17, 2005 9:24 PM CST

Day +22

We are getting ready to go home tomorrow. At this time, Nancy is in the room packing things up. Caroline is looking better and better and has had fewer stomach aches today. Her counts are a little down, but high enough that we don't have to worry about going to a hotel for a few days. I guess that was one advantage of staying at the hospital a week longer. It will be nice to be at home tomorrow. We have the best care imaginable and the doctors and nurses are wonderful. Dr. Chiang, Haight, and Horan are some of the best doctors around. We had several wonderful nurses but the best two by far were our primary Ann and our other primary, Tammie. Tonight Tammie came by to give us all hugs and tell us how things won't be the same around here. She has really brightened our days when she has been here. She even came in tonight to see if I had change for a $20. When I didn't, I asked her how much she needed and she said $7. I gave her the money and told her I would charge her interest. In 15 minutes, she brought me back the $7 and an extra .20 for interest. Ann has really looked after Caroline so well and she was an advocate for her. She would argue with the doctors for what she thought would be the easiest treatments for her. She won most of those arguments. She is about the most knowledgable nurse I have ever met (she knows enough to be a doctor). She at one time was a nurse trainer. The most memorable thing about her was the morning that Caroline just was too sick to get out of bed to be weighed. She reached down and put Caroline on her shoulder and got on the scales. After putting her down, she weighed herself to figure out Caroline's weight. It is the things like this we will remember.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, March 16, 2005 9:01 PM CST

Day +21

Things are looking very good here today. Caroline has come off of the oxygen and her chest and abdomen x-rays looked real good today. The doctor said that she is very impressed in how Caroline is coming along. It looks that we will be going "HOME" on Friday. They decided that it looks like there is very little chance we would need an emergency room visit and so therefore that will let us go home to Bremen. Caroline was off of her pole from Noon till about 8 pm. She will be on the pole tonight from 8 till 8 in the morning. She is busy taking her medicines by mouth around the clock. She came off of the PCA pump and morphine this morning and has started taking methadone by mouth. She is also taking flagyl, lactobaccillus, ativan, and prevacid all by mouth. Caroline is really making us proud at how she is being a strong girl and takes her medicine. Tonight she was laughing and being the old Caroline while we were watching "The Incredibles." I believe that coming off of the morphine has helped a lot. Today we walked a total of 17 laps. We had orders to get in 15 laps and walk at least 5 before noon. Ellen, our nurse practitioner, told us that she believes the walking we have done yesterday and today has really helped get rid of the fluid in her lungs. I managed to sneak in an extra lap on both the 2nd set and 3rd set of laps to get in the 2 extra laps. Continue to pray for us that we get to come home on Friday.

We talked with Katherine today while she was at the Air and Space Museum. She said that they were having fun, but that she was getting to the point of missing home. She said one child got very homesick and had to go back to Bremen.

A big thanks to Angels of Atlanta for bringing supper tonight for us and the Alains. They brought delicious Chicken Alfredo and Green Beans. Again a big thanks.

See you in Bremen soon,

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, March 15, 2005 9:14 PM CST

Day +20

Things are going a little better at the ole hospital. Caroline's white count went up to 8.28 today and they have stopped the neupogen. She had a little bit of stool last night and the doctor said that she is looking better and better. The doctor said this morning that they might (emphasized the word "might") let us come "home" on Friday. And by home, we mean home instead of the hotel. This would be a great thing for us. She still has to get off of the morphine, which she will do at 5 am in the morning, and she must come off of the oxygen. They are giving her lasiks at this time to get some more of the fluid off of her. We just praise God for all that he is doing in our child's life. We did 12 laps today, divided into three equal jaunts. The last was the hardest because she threw up while we were finishing the last lap. Nancy did good here at the hospital today while I went to work today. It was good to get back to school and so many of my students came up to me to ask about Caroline. Someone bought the green bracelets for my students and several of them were wearing them today. We had to make an exception to our dress code, since we allow no jewelry or bracelets of any kind. All of my students are diamonds in the rough, some just have more carbon around them.

We heard from Katherine again tonight and she said that she had a very busy and tiring day. Pray for them tomorrow as they are going into Washington and have an appt. at 8:30 to have their picture made with Rep. Gingrey on the steps of the capitol.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, March 14, 2005 9:08 PM CST

Day 19

We are still here at our home away from home. Caroline has been doing a little better today. Her white count went almost double to 6.24 and her ANC almost doubled going to 4.62. They gave her the last dose of neupogen today. It is almost certain that her white count will start dropping in a couple of days, but it should go to a point that should be maintainable. She still has no fevers or diarrhea, in fact she had some solid poop tonight. The things that are keeping her here now are a digestive system that is not working properly and being on oxygen. Dr. Haight told us this morning that she is not going to send her out on oxygen. The nurse practitioner, Ellen, asked Caroline to walk 12 laps today in 3 segments of 4 laps each. We got all of those in by 9 tonight. Caroline has to walk around with an oxygen tank. Ellen also told Caroline that she needs to sit up in an upright chair 3 times a day, for 30 minutes each. They told us that this physical activity will be the best thing to get Caroline�s system working again. We asked the doctor if we were looking at a date for getting out and she said not really a date. I pressed her again and she said we would look to the end of the week. I asked if that meant the 18th and she told me we�d see. One of the problems in getting Caroline�s digestive system working is that she is still using morphine. We have to get her off of this as soon as possible. Today we have been using heating packs to place on her stomach to avoid having to hit the button.

This evening, Nancy got the opportunity to go over to �My Camp Sunshine� for Spa night. This is a place for childhood cancer patients and their families. They do this once a month and have people from Spa Sydell come over to pamper the mothers and girls. Nancy went with Ethan�s mom and sister. She said that it was nice.

If you would like to order a bracelet, I am putting my sister�s address up today. We will have adult and youth size bracelets available. The cost is $5 for each bracelet and add an extra $1 for each order for postage. The bracelets are due in at the end of the month and she will get them out as soon as possible. Please make the checks out to Terri Dumas and include the shipping address. We will have them available at a couple of locations in Bremen when they arrive. If you would like to email her the email address is tddumas@yahoo.com.

We would like to thank Ron and Rhonda Poteet for offering us tickets to fly up to Washington on Wednesday to be with Katherine. We chose not to do this because we feel that Katherine is doing so great and it is a real confidence builder for her to be doing this without us. Even though we would love to go and be with her, we know that this is a step in her growing up. She calls us each day and tells us how much fun she is having. She is laughing and having a great time.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, March 13, 2005 10:07 PM CST

Day +18

Today has been a little better day than the last few. Caroline has not had a fever since early Saturday morning and has not had diarrhea since very early Saturday morning. Her white count went up to 3.22 and her ANC is up to 2.6. These are all good things. Caroline is still on oxygen during most of the day to keep her saturation level above 93. We had about 3 x-rays done this morning to see how her chest was looking and they showed that she still has a little fluid in her lungs. She got a transfusion of hemoglobin today and then they gave her lasik. Boy did the girl pee. She voided over 750 cc's by late afternoon and our nurse said that is the amount that a child usually goes during the whole day. The Dr. decided to give her more lasik this evening and so far she has urinated about 500 cc's. Her stomach is still hurting and she is getting 2 medicines that are hopefully working on her pains. Dr. Haight told us today that when she goes home she will have to take methadone to help her come off the morphine and also slowly take ativan to easily come off the ativan she is on now. They have still not given us a date, but the Dr. told us that Caroline really made some great improvements today and if she can keep this up, it won't be long.

Katherine called us this afternoon and also tonight. She called from Yorktown this afternoon and said that she was having fun. She called tonight and said that they were having a pajama party in one of her friends room till 10 pm when it was time to go to bed. Mary Sellers went with her as her chaperone (in place of Nancy) and she told Nancy tonight that we would be really proud of her and the way she was acting.

A special thanks to Angels of Atlanta for providing food for us tonight. We really appreciate them doing this nice thing for us. They have a website and you can find a link to their site on Ethan's page. I have added a new link to a courageous young man who went through transplant before us, Will Olson. Will's mother writes occasionally on our guestbook and I encourage you to write to them to show you care and are praying for them.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, March 12, 2005 10:09 PM CST

Day +17

Caroline had some good things today and some not so good things occur. Let�s start with the positives. She has not had a significant fever since early this morning. She also has not had any diarrhea today. These are good things and we praise God for these things. She still has major stomach pains and she has tested positive for a virus. The virus is known as HHV6 (Human Herpes Virus 6). This is a form of herpes (other types are mouth sores, chicken pox, measles, etc.) that every person acquires by the age of 2. The doctors are not sure if this virus is what has been causing her fevers. They say that with the rise in her white cell count, she will be able to handle this virus. She is acquiring a large amount of fluid in her tissues that is not coming to the blood vessels. This is causing her stomach to be tight and distended. They gave her some protein and lasiks to try to get rid of some of the fluid and she also is getting some more as I write, so here comes the bathroom time. She is not feeling very good and the fluid is causing her to have some breathing problems. Tonight, she had to have an oxygen mask placed on her to get her saturation levels up with her blood. It seems we start beating one problem and then another pops up. Dr. Haight told me this morning that it seems that she is turning the corner, and we have faith that home is just a few days away. They will not send us home till we have no problems with fever, stomach pains, and diarrhea. Caroline�s counts were not as good today as they were yesterday. Her white count was down to 2.49 from 2.89 and her hemoglobin was down to 8.2 (transfusion when below 8) and the platelets were down to 13,000 (transfusion when below 10,000).

Katherine got off this morning going to Williamsburg and Washington, DC. They pulled out of the school at 7:15 and Nancy said that she was very excited. She called here when she was in North Carolina and also when they were traveling through Virginia this afternoon. She called Nancy at around 7:30 pm to say that they had arrived at the hotel in Charlottesville, Virginia. Please pray that they will be safe and have a good time.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, March 11, 2005 10:23 PM CST

Day +16

We are still here. During the last transplant, we left the hospital to go to the hotel on Day 16, so it felt kind of weird. We are still with the same problems: high fevers, watery diarrhea, and stomach pains. They began a new medicine to deal with her stomach pains. They believe that she might have a condition that is caused by overuse of antibiotics. She also is taking lacto-baccillis to repopulate her stomach and intestines with normal bacteria that helps with digestion. This is the same cultures that are found in yogurt. Caroline's white count and ANC both came up today. Her white count went from 1.49 to 2.89 and the ANC went from 1.3 to 2.43. We took our last dose of Neupogen today and won't take it again unless her white count drops again. They believe that this might take care of the high fevers. Her platelet count was below 10 this morning, so she got a transfusion of platelets early this morning. Caroline has been very emotional tonight and we didn't get but 4 laps in today. My parents came over tonight and brought me something to eat and bring a few gifts over to Caroline that people had given them. Please pray that Caroline will not get as emotional when something doesn't go her way. Nancy went home this afternoon to get Katherine ready for ner trip to Williamsburg and Washington DC. Pray for Katherine and the group to be safe this next week.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, March 10, 2005 9:20 PM CST

Day 15

Well we are here for another day and tomorrow will be day 16. During the last transplant, day 16 was the day we left the hospital. Caroline still is having the high fevers and has a loose diarrhea. The doctors are still unsure of what is going on and what is causing this. She had a blood transfusion today because her hemoglobin count was at 7.4 and we are guessing that she will have more platelets again tomorrow because her platelet count is at 16,000 and she has lots of petechiae (capillaries that have burst). Her White count was just barely higher at 1.49 (1.48 yesterday) and her ANC was higher going from 1.18 to 1.3 today. The ANC is the count of baby white cells intermediate white cells then multiplied by her white count. Our goal is still 2.000. We had a visit from one of the GI (gastro-intestinal) docs this afternoon and she just asked a lot of questions. They will meet with our oncologists and maybe come up with some ideas for the stomach pains and diarrhea. Pray that these problems will end and that her ANC continues to rise. She did walk 7 laps today and spent a little time in the playroom. She did this after Ellen asked her to walk at least 7. Our goal will be to try and walk 9 tomorrow and then get back to 10 on Saturday. Back to the issue of diarrhea, Caroline has been spending lots of time sitting on the toilet and spent 30 minutes one time and this evening spent 45 minutes. She also has been very emotional today and becomes very hard to deal with. The doctors feel that this may be showing that she is getting to a turning point.

Nancy is going home tomorrow to help Katherine get ready for her trip to Williamsburg and Washington DC. They will leave early Saturday morning and since Nancy will not be able to go on the trip with her, she wanted to be there to see her off. I will spend the night tomorrow with Caroline and keep her alone till Nancy comes back on Saturday. I did pretty good with her last weekend, but she was not as irritable as she is now. Pray for me.

Thanks for all of the messages that you leave for us on the guestbook. We really enjoy reading those.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, March 9, 2005 10:14 PM CST

Day +14

We still are here with no end in sight (I know that there is, we just don�t know when it will be). Caroline still is running high fevers and the doctors are busy ruling out most known causes for this. We got the results of the CT scans yesterday and they show that there is no signs of infections or spots. They also said that looking at the remaining tumor inside of her, they look smaller than they looked in the scans done in December. Her fevers have gone up to as high as 40.4 C (104.8 F) and went up and down throughout the day. This afternoon we had a doctor from Infectious Diseases come by and he asked a lot of questions and suggested they try some different drugs. The doctors also told our nurse that they are noticing that the transplant patients seem to be running higher temperatures during engraftment due to the way that the marrow is processed now. They take out the plasma and make the marrow more concentrated and they said that since they started doing this, the patients have had a higher temperature. So again it could be the engraftment that is causing the rise in temperature. I asked the doctors today could they tell us when we might see getting out and they all said in unison, no. They want to make sure that her counts are where they need to be and then they also want to make sure that there are no fevers. This evening they put her on an antifungal drug called Amphotericin and we were warned that this drug could cause Caroline to have some reactions such as shaking and high fevers. This did occur and she also developed shortness of breath. Her reaction was so severe that the residents on call and the fellow on call decided to stop giving her the medicine tonight and let the doctors in the morning decide how to proceed. It kind of scared us, but we knew that God would protect her. Pray that the doctors will discover what is causing her fevers and also the constant stomach aches she is having. She is still having a very fluid diarrhea. Her white count and the ANC both rose again today. The white count went up to 1.48 and the ANC went up slightly to a 1.18. We thank God for these things and appreciate the positives.

We have been blessed by some great nurses here at the hospital. We have two that we really have become close to. Our primary nurse is a very experienced nurse and her name is Ann. She is very knowledgeable and knows the questions to ask the doctors on our behalf. She is an advocate for Caroline and it is always comforting to have her on. The other day, Caroline had dried blood on her lips that we couldn�t seem to get off. Ann took the time and using a wet cloth, slowly worked to clean her lips. Another time, Caroline was running a temperature and did not want to stand up to have her weight done. Ann got Caroline to lay her head on her shoulder and then she stepped on the scales. She then took the scales outside to get her own weight so that she could subtract it from the previous measurement. The other nurse is Tammi. She is what I would say is her secondary nurse. She is so nice to us and always loves to come in and check on us. She always wants to have us and on the days when Ann is here, Ann gets us. Today, Ann started off the first 4 hours in ICU and Tammi was only working till 3, so Tammi came in and told us that Ann had claimed us when she got there at 11 and she said that she was jealous. It is nice to have nurses fight over taking care of your child.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, March 8, 2005 9:45 PM CST

Day +13

Today has been a strange day. It started off this morning with us getting up at 6 with Caroline getting a dose of lasik. I got showered and got ready to come home to make it to work by about 8:30. When I got to work, I had to deal with a fight, then angry parents, and then Nancy called to say that they were going to give Caroline a CT scan today and were inserting an NG tube so they could give her the contrast. I decided that I was needed here, so I left the school to come back to the hospital. My dad was great to come over and be with Nancy while I was enroute. While he was here, Caroline threw up a couple of times and messed up the bed (I think our nurse changed the bed about 3 times). Dad stayed here through the scan and went home at about 6:30. They are trying to figure out why she is having the fevers, since there are no positives on any blood cultures. We are hoping to find something out in the morning. Caroline's White count and ANC were both up today. Her white count went up to 1.31 today and her ANC went up to 1.01 (remember the magic number is 2.000). We did not get any laps in today, but are hopeful for tomorrow. Another downside about having to come back for Caroline's scan was that I did not get to spend the time with Katherine. We had planned on staying at the house tonight and then me taking her to school in the morning and then I would come on over to the hospital. I would like to thank her best friend and her family, Alli Webb, for letting Katherine spend the night tonight with them. They really take Katherine in and make her feel good. I am glad that she has that to take her mind off the fact that I couldn't be there for her tonight.

Continue to pray for our friends on the hall who are in transplant. Some good news is that Gwen is getting to go home on Thursday and that Ethan is still doing real good on his Day +1. Chris, Ethan's dad, said that he is still eating even while he is on the TPN. The Alain's have been good neighbors and have been there for us when we get down. The other night when I was worried about Caroline, Chris sat down with me and said a short prayer and that really meant a lot to me. I appreciate all the prayers that are said daily on behalf of Caroline and all of our other friends. Prayer is the thing that will get us through. I spoke the a woman today at the post office and she asked if there was anything that she could do for us and then she added besides prayer. I told her that that was the best thing anyone can do at this time (unless you are in the area with better food, ha ha).

Charles, Nancy, Katherine, and Sweet Caroline

Monday, March 7, 2005 9:03 PM CST

Day +12

Caroline was not as energetic today as she was yesterday. She woke up this morning with a high fever and held onto it for most of the day. She finally got up to do some laps late in the afternoon and did 2 and then did 2 more at about 8 tonight. They have been cutting back on the nausea meds yesterday and today. They cut the Ativan back from every 6 hours to every 8. She did throw up more today and threw up once this morning and then at about 7 tonight. The one tonight was all over the floor and onto the bed. Our nurse, Jessica, came back in and fixed everything up fine. Caroline�s counts were up again today with her white count at 1.07 and that was almost doubled from yesterday�s count of .65. Her ANC (absolute neutrophil count) went up from .53 to .71. The doctors said this morning that her mouth is looking a lot better and they can tell there is healing going on. As for the fevers, they still don�t know what is causing them. They did a chemical test called CRP to see if there were certain chemical higher in her blood that would be indicative of an infection. The test the other day was higher and we will see what they say about today�s test in the morning. This morning her gallop was not there according to our doctors, but this afternoon we had a visit by a cardiologist and a cardiologist fellow. They said they heard the gallop and they consulted with Dr. Anderson and Dr. Chiang. They decided to continue with the injection of the protein and then giving lasik an hour later. They will do this in four treatments, with a treatment every 12 hours. They gave Caroline the Albumin at 5 this afternoon and it ran for an hour and then gave her the lasik. They will give her this again at 5 in the morning and she gets the lasik at 6. If you don�t know, lasik will make her pee a lot and get rid of the extra fluid in her blood. That is the purpose of giving her the Albumin is to pull out the extra fluid in her body and cause it to come to the blood. Continue to pray that this issue will work itself out (no pun intended).

I will be going home in the morning so that I can go to the school tomorrow. I will also take the time to spend the night with Katherine tomorrow night. Nancy�s mom will come over tomorrow afternoon and spend the night with them here. I will take Katherine back to school on Wednesday morning and then come back here to the hospital.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, March 6, 2005 10:41 PM CST

Day + 11

Caroline has had a better day today. She still has the gallop in her heart (extra beat) and has run a temperature occasionally. She has had a little more energy and today we managed to get in all 10 laps . We did OK without Nancy here and she didn�t have a temp over 39 C till Nancy got back this afternoon. They have upped her pain med (fentenyl) and increased the bolus from 25 mics to 35 mics and also have expanded her 4 hour limit from 420 to 550. Throughout the night tonight, the nurse will come in and hit her button to give her a bolus. Early this morning she had to have a transfusion of platelets, because her platelet count was below 10,000. Her white count was up again today and went from .37 yesterday to .65 today. She also finally has a reading on her absolute neutrophil count and it registered .53. Before we can go home, her absolute neutropil count has to be above 2.000. Dr. Chiang said that he believes that she is getting better and that the gallop in her heart will not be a thing that will keep her in the hospital. He said that we will probably have a cardiologist come and see her. They did cut back on one of her anti-nausea meds today and the winner was benedryl. Continue to pray for her so that she will continue to get better.

Tonight was a reversal of last night. It was ladies night outside of the room with Ethan and Gwen�s moms and Nancy having a chat outside of the room. They met a lot earlier than we guys did last night and they got through before 10 (we guys finished just before 12 midnight). Nancy said that they mainly talked about the kids.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, March 5, 2005 11:00 PM CST

Day +10

Caroline is still having a few problems with her heart and with fevers. But the good point is that her white count went up today to .37. She had a fever last night and did not have another one till late this afternoon. They started her on protein to add some to the blood stream. The doctors believe that the fluid in Caroline is not in her blood stream, but is out in the body. When protein is added to her blood, it draws out water and then the doctors prescribe lasik every 8 hours and she goes to the bathroom to flush out the fluid. Our nurse, Ann, said that she heard the gallop intermitently today. This is encouraging. We came off of isolation at around 6:30 tonight when the results of her respitory panel came back negative. Dr. Chiang told us this morning that there is a certain chemical level that is elevated and it is indicative of an infection being present, however he said that they usually don't test for this chemical in transplant patients because there are other factors that could raise this level during the transplant process. We just wait and see what occurs.

Nancy went home this afternoon to spend the evening with Katherine and to help get her ready for her trip to Washington and Williamsburg next weekend with her 5th grade class. Katherine will be going with Mary Sellers as her chaperone. Mary agreed to fill in for Nancy and she missed out when she was in elementary school. A great chance to make up for a lost experience.

Tonight, we had a men's council in the hall outside our room. Ethan's dad, Chris, and Gwen's dad, Ben, joined me outside to chat and talk while our children were sleeping. We all are on the end of our hall and are all staying alone with our children tonight. I kept the blinds open so I could watch Caroline in case she woke up and wondered where I was. We all commented about our dealings with Cancer, insurance, children, jobs, and home health companies. We joked about the type of conversations we were having and couldn't wait till we would have something else to talk about.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, March 4, 2005 8:54 PM CST

Day +9

Things have been a little rough today at the hospital. Caroline has still been running a temperature and her heart still has the extra beat (galloping). Her pain has still been there and they increased her total amount of pain med that her PCA pump will allow her every 4 hours. Early this morning, she ran out of hits on the pain pump because she had hit it too many times over the 4 hour period. This afternoon they did an echo on her heart and the cardiologist believes that there may be too much fluid in her system and wants to do lasik twice a day, but the oncologist believe that there may be too little fluid in the system and both of these can cause the extra heart beat. The oncologist are going to go through the weekend and try to see if their plan works to stop the extra beat. If not, then they will do another echo on Monday and then call in a cardiologist to come down and physically see her and then follow their recommendations. The doctors still cannot figure out why she has had a fever for the last 5 or 6 days and why her mouth sores are not getting much better. They have ordered some tests, one being for RSV, and this has caused her to be isolated. When a doctor or nurse come in, they must wear protective clothing and a mask. This is to prevent them carrying the bug to another child. Nancy and I just have to make sure that we wash our hands. She is on a new oral medicine to get her esophagus under control and after a rocky start getting her to take it the first time this afternoon, she did well tonight and took it with no trouble. It kind of seemed scary this afternoon with Dr. Anderson coming in and talking about the ways they were going to investigate these problems, but we have put our faith in God that he will see us through. At about the same time we were dealing with this, we were dealing with a problem at home with Katherine having a small melt down. It is hard to try to take care of one by telephone. Nancy is going home tomorrow and will spend the night with Katherine and return back to the hospital on Sunday. Please pray for me that I can handle this and that Caroline will be cooperative with me. She is getting fiesty during these days and the doctors have said that this is encouraging. I know that I should be able to handle this as we are the only couple staying day and night with our child. Most of the children have only one parent stay each night with their children and there are some here that do not have a parent here. We are so lucky that my school system helps me out and allows us to put the family first.

Don't forget to check out the link at the bottom of the page concerning the Tour de Rogers. This ride will benefit Caroline this year.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, March 3, 2005 9:47 PM CST

Day +8

Caroline has not had a good day today. Her counts were down again today. Her white count went back below .10 (nothing), her hemoglobin went down to 8.5, and her platelets dropped down below 10,000. She got a transfusion of Mary Sellers platelets again today. The doctors believe that there is a reason for the drop. They believe that her problems in her mouth and esophagus are drawing any new white cells to help heal and that her fevers are chewing up her platelets. We have not been as active today and she has laid in bed more today and only got in 3 laps. She has run a fever off and on throughout the day. Her last fever was this evening and got all the way up to 39.6 C (103.2 F). We had to put cold wet cloths under each arm pit and behind each leg and then one around her neck. That alone got her temp down to 39.1, and then the Tylenol got it down below 39. The blood cultures are still coming up negative and our nurse practitioner, Ellen, said that the fevers could be the body response in getting ready to release a lot of white cells. She said that the body is releasing a lot of proteins in preparation of these new cells. She said it is not abnormal for this to be occurring. Her mouth and stomach have been hurting more and it is getting harder to do her mouth care jobs. Just pray that she will get a little better and feel better also.

Today, I found out how small the world is again. Our neighbors across the hall, Ethan and his parents, had their pastor come see them. They go to church just outside of Newnan. They live in Sharpsburg and go to church with my cousin, Mike Waddell. We knew this at the last transplant, but today their pastor dropped by to see us and I found out that he is the brother of Ronna Bush, a teacher friend of mine at Central Middle School. What a small world. ( If this paragraph seems convoluted, forgive me).

A lot of people are talking about our new bracelets. I will probably put an address up soon to where you can order the bracelets. That way we can go ahead and get them to you when they arrive. The cost will be $5 and we will probably ask you to pay an extra $1 for shipping. We have been told they will be shipped to us around March 30.

Don�t forget about the Tour de Rogers on April 30. The benefit bike ride information is on the link at the bottom of the page and will include a run, bike ride, and a motorcycle ride.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, March 2, 2005 9:23 PM CST

Day +7 Post Transplant

Caroline has had somewhat of a better day. She did not have a fever last night and woke up in a little better mood. We had a little better effort from her in doing some of her jobs today. Her mouth and stomach are hurting still, but she only threw up once and that was from getting gagged from the mucus after taking a short nap. We did a little better on the walking the laps today with a total of 8 (finishing the last two at about 9 tonight). Caroline�s counts were up today, with her white count up to .24 and her platelets up to 30,000. I asked the doctors if this was normal and they said that sometimes this does happen and said that it could drop back down again tomorrow. What we are looking for is for a continued rise in her counts over several days before we will be allowed to leave. We did have a visit from Caroline�s grandparents and Nancy�s parents, Alice and Tearl. They didn�t get to stay long, they had to be back to pick Katherine up from school, but they brought us our mail and me some Cokes.

Continue to pray for all of us and thanks again for all of the messages. We enjoy reading these each night.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, March 1, 2005 10:24 PM CST

Day +6 Post Transplant

Things are going about the same today. Caroline had a fever through most of the night last night with a fever reaching about 39.1 C and finally broke around 6 am this morning. She had Tylenol a couple of times and it only caused her fever to go down about 1 or 2 tenths of a degree. The situation with her heart has continued. The gallop has returned and the doctors have started her on albumin every 12 hours. This will put protein back in her blood stream. They want to get fluid to move out from the tissue and back into the blood stream and believe that this will help out. The doctors have told us that there appears to be nothing wrong with her heart, as the EKG showed last week. Caroline had her pain medicine upped again today. Caroline is still having a lot of pain in her mouth and also in her stomach. She did get in 6 laps today. The way we work these out is that Caroline will walk two laps and then I ride her around one lap on the pole and then she walks a third. We did that once this morning and once this evening. Pray that Caroline will make it back to walking all 10 laps again. This morning I had to get up early and face the rush hour traffic around the hospital. We had promised her that we would get the new Spongebob movie today and even last night she was going over my plans for the morning. She said that after I got up, I had to put on my shoes and get in my car and go get the dvd. I asked her if I could put on my pants first, and she said if I had to, yes. I had this on her bed when she woke up and when she saw it and the �Bambi� dvd, she hugged them and went right back to sleep.

Katherine had a good experience this morning. Her grandmother, Alice, went to Walmart after midnight and had them get her the new �Spongebob� dvd. She got Katherine up a little after 6 am and Katherine watched the movie before she went to school this morning. Katherine called Nancy on her way to school to let her mother know what she had already done this morning. She was happy.

We have ordered new silicone bracelets that will be blue with �SWEET CAROLINE� on them. My sister and Mary Sellers did this today and they will be back by the end of the month. They are going to sell them for $5 to help defray costs for us. My sister will handle any mail orders and we will have them for sale in Bremen at different locations. We will have more details about this as it gets closer to the time that they arrive.

Thanks for all of those who have signed the guestbook today.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, February 28, 2005 10:24 PM CST

Day +5 Post Transplant

Caroline still is not doing the best in the world right now. She is probably at the low point for her health right now and probably won't start showing real improvement for a few days. She has had a fever off and on today and they still do not know where it is coming from. Her fever went to its highest point tonight when it reached 39.1 C (102.4 F) and it took a while for it to start coming back down. She got both transfusions of red cells and platelets today. The platelets were from one of our friends in Bremen, Mary Sellers. Mary went last week and spent a couple of hours giving platelets. We had her down as a direct donor for Caroline. Mary worked hard to make sure that we would get those platelets and we might have more of those before we are done. Caroline's pain has been more active today and they changed the amount she can receive after maxing out this morning. I would not be surprised if they don't have to go up again on the amount of pain medicine. Her mouth really looks bad with all of the sores. Our nurse practioner, Ellen, said today after looking in her mouth, that it looked sore. Please pray that this will start to ease up. We did get in 3 laps today and were going to do more before the latest fever hit. Tonight the resident on call prescribed lasik for her so that she could get rid of some of the fluid. When we came in she weighed 14.7 kg and now she weighs 16.4 kg. A lot of that gain is in fluid (that is a gain of about 3 or 4 pounds).

We notice a lot of you are dropping by the site to see what is occurring. Please do us a favor and drop a line off at the guestbook. That is one of the things Nancy and I look forward to each night. We love to see what people have to say and who visited the site. Also, don't forget to check out some of the links at the top of the page and let them know you care. If any of you are in the area and don't feel sick, please drop by and see us. We would love to have company - just remember that you can't bring any live flowers or stuffed animals (unless covered by plastic).

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, February 27, 2005 9:25 PM CST

Day +4 Post Transplant

We have had another rough day here at the hospital. Caroline has continued to have problems with her mucusitis and her sores are getting worse in her mouth. She now has a suction tube that she can use to help get out some of the mucus out of her mouth and she puts it in her mouth when she wants. She has had a fever a couple of times today and has one now. Her counts are still low, with the whites bottomed out. Her platelet count did not go up that far and she will probably have to have more platelets in the next day or so. Pray for her tomorrow as she has to have her dressing changed on her central lines. She does not like to do this. We did get to walk 5 laps today. She didn't like to do this, but we had to push her on.

Katherine came up this afternoon and Nancy and I took her out for some time together and then got a bite to eat. It was nice to spend time together with her. She had to show off the new outfit that she bought at the mall yesterday. My daughter is growing up. I thank God for giving me 2 lovely daughters and a beautiful wife. I am blessed beyond all means. Even as we travel the road of troubles, the Lord lifts us up and carries us.

Make sure you check out the new pictures of the transplant in the photo album and also check out the information on the Tour de Rogers at the link below.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, February 26, 2005 9:04 PM CST

Day +3 Post Transplant

Today has been another slow day for Caroline. She had a fever in the middle of the night, which was the first that she has had since coming into the hospital. She has had more mouth sores from the mucusitis and the nausea has continued. The doctors say that this is still the side effects of the chemo from last week. Her white blood count has finally bottomed out, and her platelet count went to 14,000. The key number is 10,000 and they are supposed to give a platelet transfusion when the count goes below this number. The nurse in the middle of the night thought that we were still under the platelet study we participated in during the first transplant (one can't participate during the second transplant). During the study, the target count was 20,000. This morning she ordered platelets for Caroline. The doctors didn't say anything, so we guess everything was OK. On Monday, Caroline will start her neupogen, which is the drug that encourages growth of the white cells. Once they start this drug, we begin the watch for the white count to increase.

We had a discussion with Dr. Chiang today about post transplant and what to expect about Caroline's ability to do things. He told us that about 30 days following the transplant, we would be able to lift some of the restrictions on a gradual basis. At 50 days, she would be able to go in public and go to public places (school and church). All of this would be based on how her white counts do.

I hope everyone will take a look at the website for the Tour de Rogers. This bike ride will benefit Caroline this year and will be on April 30.

Continue to pray for Katherine as she tries to get over her sickness. She is lonely and misses us and we miss her. She is a special girl and we love her so.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, February 25, 2005 10:07 PM CST

Day 2 Post Transplant

Caroline has had a pretty down day today. She woke up early and we thought the day was going to go well. She was feeling fine till she threw up (a morning thing) and then she rested a little bit more. Later on in the morning, Caroline decided that she wanted to walk 7 laps and out the two of us went. She got through 2 laps and then bent down resting behind the pole. When she raised up, she hit the top of her head on one of the pumps that was positioned on the back of the pole. It did not bleed immediately, but she said it hurt and wanted to go lay back down in the bed. When she got back, she threw up again and this time threw up some blood from the mucusitis. This time they gave her some nausea meds and it knocked her out and she basically was out till around 7 pm tonight. They determined that her galloping heart was due to too little fluid in her body. They believed that they have mistakenly been taking out too much fluid for the last week and especially the last few days by giving her lasik. This morning she got a pint of red blood cells and then this afternoon she got a bolus of fluid and sure enough, the galloping heart went away. Our nurse, Ann, said that normally too much fluid can cause a gallop (3 beats instead of 2), but for some reason the opposite was true of her. Tonight she got sick again and was given another dose of phenegren and of course it knocked her out. We had my parents, Charles Sr. and Inez, come by and bring us supper. They stayed and visited for a while and then went home.

Gwen's transplant went well this morning. She had to have 3 harvests and her transplant was larger than Caroline's (Same number of cells, more amount of fluid). She looked good and her Dad, Ben, came over and visited with us for a little while. Please continue to pray for her and her family.

We are adding a new link at the bottom of the page. It is for the Tour de Rogers, a bike benefit ride that this year chose to provide help for Caroline. The race will be held in Bremen on April 30 and has different lengths of rides, a walk-run, and even has a motorcycle ride. Please check out the link at the bottom of the page.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, February 24, 2005 8:34 PM CST

Day +1

Today started off slow, with Caroline not waking up till a little after 9 this morning. She did not go to sleep till about 11 last night and got up a couple of times during the morning to go to the bathroom. Yesterday, the doctors and nurse thought that they heard a galloping heart (I know she is not a horse), and they ordered lasik to get rid of some of the fluid. Well, the nurse last night thought she heard it also and had a couple of the residents to come in and listen. They also ordered the med and that is why she was up at 5 and 6 going to the bathroom. When Dr. Horan heard what happened, he put in orders that now the only time she gets lasik is when her weight is above 15.7 kg (It was 16.0 tonight, so guess what?). Caroline has been pretty spry and was in the mood to do some pranks. I mentioned the other day that she got as a reward for doing 10 extra laps a whoopie cushion. This morning she blew it up and placed it under the covers of her bed on the side. When Dr. Horan and Ellen came in, she asked him to sit on the side of the bed. Her goal was for it to go off when he sat down. It didn't work, due to the bed being so soft. So Caroline blew it up again and had him sit on it in the rocking chair. It made the awful sound and Caroline giggled. Dr. Horan then had Caroline blow it up again and put it back on the bed and when Ellen came in the room she had to sit on the bed. It worked that time. They are amazed at how different she is handling this transplant. She is constantly thirsty and they don't understand why. This is one thing they are looking at to try and figure out what is going on. They had an EKG run on her this afternoon and as far as we know it looked good. She spent a little time with the physical therapist and they played catch with a beach ball and she had Caroline do 3 laps kicking the ball around. After this we came back to the room and rested for a while. After Caroline had a nap, the 3 of us went for another set of laps and finished the last 7. The last 3 Caroline rode around in a little car that she moved with her feet (Ellen said that this counted, because she was probably using muscles that normally wouldn't be used). After this Caroline, Nancy, and myself spent a little time in the playroom playing our favorite new game, Connect Four. This evening, Caroline played Bingo over the TV at the hospital and won two rounds. She got a new Barie doll, some playdough, and a crayon ball. She is finishing out the night by watching a movie. Hopefully she will go to bed a little earlier than last night, as Mommy is pretty tired.

Please pray for Katherine. She did not go to school today and went to the Dr. instead. She has a pretty bad cold and might have strep. Two of her cousins, who she has played with recently, do have strep. She refuses to do the strep test and so the doctor is treating her for strep anyway. She was told that she can't go back to school till Monday (makes her happy). Maybe it will be next week when she starts soccer.

Pray for Gwen as she will have her transplant tomorrow. This will be her first transplant and has been doing pretty good so far. She is starting to get some of the side effects now and it is hard for a little girl her age to handle. Pray for her older sister also.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, February 23, 2005 8:55 PM CST

Day 0 - TRANSPLANT DAY

Things went very well today. Caroline had her transplant at around 11 am and the doctors were very pleased at how things went. This morning around 9:30, the engineering department showed up with the new TV for the room. We were promised a new TV on Friday and of all days, they showed up this morning. Caroline, Nancy, and I went out and walked 5 laps and then went in the playroom to do some artwork. After the drawing, Nancy's parents showed up and by this time they were finished installing the TV. We went back to the room just in time for my parents to arrive. Caroline was given a larger dose of benedryl than normal and by the time of transplant she was somewhat lethargic. Things went just like the first time and the cells were injected within a minute or two. Ellen, our nurse practioner, is an expert at the infusion. We took some pictures and I will do my best to get these up on the web by tomorrow (or Friday at the latest). We thought that Caroline would take a nap today, but as of writing this tonight, she still has not gone out. Nancy's parents had to leave so that they could pick up the kids from school and my parents stayed for a while. Nancy and I went to the parent's support meeting for lunch and joined about 9 or 10 other parents to talk about how cancer is effecting our lives. Later on in the day Caroline and I got in 3 more laps, which suprised Dr. Horan, and then went in the playroom to do some more art. Caroline is really getting into painting now. All the time she was in the playroom, we thought she was going to drop from exhaustion, but not her. We had a calm night and while we were giving her a bath, she talked about how she was going to be a rock star when she grew up. Tonight after I told her that I was glad that she was my daughter, she replied, "I am glad you're my daddy and I am glad you were born to be my daddy." My eyes almost (almost is the word) started releasing drops of water (crying). Nancy said to me, isn't that so sweet. Yes that is Sweet Caroline.

Tomorrow will be day 1 and we start the count from then on. Today will always be Caroline's 2nd birthday.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, February 22, 2005 8:54 PM CST

Day -1 prior to 2nd Transplant

Twas the night before the transplant and all through the . . . ., nah I can't do the whole journal tonight like the poem. Caroline has had a little harder day today than she has had up till now. She has been a little sicker and has thrown up a little more. Today they added benedryl to her medicine routine. She gets Ativan every 6 hours and benedryl every 6, alternating every 3 hours (I hope that makes sense?). We did not walk as many laps as we did yesterday, but we still got in our 10 laps. She walked 5 this morning and then the other 5 this afternoon. In the afternoon, she had to struggle to get the laps done. She did the first two and then went to the playroom because she was tired. We tried playing a game, but she kept putting her head down and so we decided to leave. When we were leaving she said that she had to finish her laps before we could go back to the room, so we pushed ahead and finished them. We came straight back to the room and she was exhausted. She got more nausea meds and out she went for about 3 or 4 hours. We did not hear anything about the cultures that were done yesterday, but they have been giving her some meds to get her ready for the transplant in the morning. Please pray for her around 11 am tomorrow, as that is when the transplant is scheduled. We saw the lady from Emory who is the keeper of the cells in the hall today. She said she would be here and have everything ready. We will make some more pictures and post them in a day or two.

A lot of you wrote and wished Katherine luck with Soccer. She did not make it to practice today. She was feeling a little tired from her short cold over the weekend and after finishing chorus, just was too tired to go. She will make it to her next practice.

If you are in the area and are feeling well, drop by and see us. We could use the company to break up the monotony. Thursday and Friday, I will be at a principal's GPS training that I am required to attend near the airport. I was originally supposed to go to Macon, but I sent them a note and explained the situation and they were nice enough to let me attend this one that is closer to the hospital. Pray for my school, as they had 5 teachers and staff members sick with the flu today. We had a third of our students out also with sickness. My secretary told me she was glad I was not there ( I am hoping that was due to the sickness in the school).

Charles, Nancy, Katherine, and Sweet Caroline

Monday, February 21, 2005 9:47 PM CST

Day - 2 prior to 2nd Transplant

Tomorrow is the last day of rest before the transplant on Wednesday. This again are up and down today. The downs are that she is still getting sick a few times each day. She has started drinking fluids and each time she does, she throws everything right back up. We have told her the consequences, but she continues to want to drink something. She says that she is thirsty and has alternated between water, sprite, and fruit punch. The fruit punch has been the biggest culprit and we think we have talked her out of that drink. We believe that there may be an infection lurking in her. Her heart rate has been up a lot and each time they give her an anti-biotic, it comes down. The fear is that it may be linked to her staff infection that she had during the last transplant. They drew blood to do blood cultures today and we will see if anything show up. They also hooked her up to a PCA pump, which provides her with a continuous drip of the fentinel (pain med). She also can hit the button for a bolus dose whenever she feels the need for extra relief.
Now the good news. This morning we got up and did 3 laps. She came back to the room and rested for a while. We then took her up to the playroom to paint a little with the child life specialist, Sara. While they were together, Sara made a deal with Caroline. If she would walk an extra 10 laps, she would give her a woopie cushion. We went up to the playroom and finished helping her with her paint ad were also told of the promise and then went back to the room. While back in the room, she got sick again and complained of her bottom hurting. She got some more meds and boy she felt good. She told us that she wanted that cushion and so out we went to do some walking. I told her that it would be good to finish the original 10 by walking off 7 laps. We all went out and Caroline walked about 5 or 6 by pushing the pole herself and we walked beside her. She then decided that she was tired of pushing the pole and asked us to push it. We finished the 7 laps remaining on the original 10 and she then said she wanted to walk more. We walked a total of 17 laps at that time. Needless to say she was tired and later on Sara brought her the cushion. Since that time, the only time she has been out of bed was to go to the bathroom and to have her bath. Sara has promised her other prank prizes later on.

Continue to pray for us. It seems as Caroline is not having as hard a time this time, but the rough part has still not hit and we are beginning to see the signs of the mucusitis and mouth sores. I pray that she will keep the desire to walk as long as possible. Pray for Katherine also as she starts soccer practice tomorrow afternoon.

We are on the lookout for a small brown beanie baby bear that is a light tan and has a white front. Caroline saw a bear like this on a nurse's desk and was told she could have it. Well that was against protocol and another nurse said no that she couldn't have it. The nurse said she would look for one that might be sealed. Caroline has been asking about this bear everyday to each nurse she sees. We have decided that we can put it in a plastic bag while she is here. So if you find one, let me know.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, February 20, 2005 9:22 PM CST

Day - 3 prior to 2nd transplant

Caroline again had a day of ups and downs. She woke up and went to the bathroom and then when she came back to the bed, she threw up. Then later on this morning around 10 she finished the last of her chemo. This will hopefully be the last she ever has to take. She started around August 1st and six and a half months later she is through with this phase of treatment. The rest of the morning went well. We did 5 laps this morning with her pushing the pole around herself. We did this before I had to leave to go to a meeting at the Hilton, downtown. She got sick after she had some juice to drink around lunchtime and they had to give her some nausea meds. It knocked her out for a while. Katherine came this afternoon and was able to see Caroline. We got some new 2-way radios and they talked to each other. Katherine and her Grandmother stayed till I got back this evening around 8:30. Her bottom started hurting tonight and we had to call the nurse for some pain meds. We then put her in the tub for her bath and by the time we finished, she was feeling the effects of the medicine. She became very talkative and talked our ears off. She told me that she has decided that she knows what she wants to be when she grows up. She wants to be a rock star. I just shook my head and said OK. She said that she knows how to sing and that she would make a good rock star. This is the effect of some good pain medicine. We then finished her last 3 laps and again she pushed the pole herself. Hopefully we will have more ups than downs tomorrow.

Charles, Nancy, Katherine, and Sweet (and Spunky) Caroline

Saturday, February 19, 2005 9:43 PM CST

Day -4 prior to 2nd Transplant

Things have gone pretty good today. There have been a few times that she has been sick, but there have been more good things going on than bad today. We are seeing the beginnings of the mucusitis and her bottom is getting red. She has also been a character today. This mornigng when Dr. Chiang came to visit this morning, he was talking to us about her condition. She stopped him and said to him, "What language are you speaking, because I don't understand you." He laughed and I told him to speak some
Chinese to her. He did and told her that was Chinese. She then started picking at him as she has done to Dr. Horan this week. While he was checking her out, he asked her to open her mouth so he could check for sores. After he finished, she took her flashlight and told him to open his mouth and told him to stick his tongue out and also to lift it up. He did as he was instructed. He said she was definitely in better spirits than she was during the last transplant. This evening when it was time to finish up her laps, we devised a plan to get her to finish up without complaining. The idea was for us to walk 2 laps and then I would let her ride on the pole for 1 lap, then walk 2 more laps, ride for another, then finish up the last lap walking. This would get her last 5 laps in and have a little fun. When it got time to do the last 3 laps to walk, she decided that she wanted to do them on her own. She pushed the pole around for all 3 and we were told to stand in one place. When we tried to move to check on her, she fussed at us and told us to go back where we were supposed to be. We made some pictures of this and we will try to get them on the site tomorrow.

Katherine did not get to come today. She has developed a Sinus problem and could not talk well this morning. This got Caroline very upset and took a while to get her calmed down. She really misses her sister right now. She has been very clingy to me today and tonight. Pray that she will be OK tomorrow, as I have some meetings downtown at the Hilton and will be gone from the hospital from about 11:30am till around 9:00pm. I also will have to be gone some on Monday also. The rest of the week is not too hot either with Principal's GPS training on Thursday and Friday. Katherine went over to her friend's house tonight to spend the night. Allie is one of her best friends and hopefully will help her feel a little better about the separation.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, February 18, 2005 10:21 PM CST

Day -5 before 2nd Transplant

Things are going ok here. Caroline has had ups and downs today. She has been sick a couple of times and also has developed a sore bottom. The bottom issue is due to one of the chemo drugs, Melphalan. She has been given Adovan around the clock and has been taking a pain med as needed. She still has not developed any fevers, even though she got very warm during the day today. We went to have her hearing checked today and midway through the test she got sick. They plan on picking up where they left off on Monday. We have been blessed with good nurses so far. I don't think they make bad nurses here. Caroline has taken a liking to picking on Dr. Horan. She has been more playful around him and Ellen (Nurse Practioner) this time. We hope this attitude continues. She also did all of her jobs today, including walking 10 laps. I finally convinced her to do more laps at the start so that she would have fewer later on. Tonight, my parents came over and brought supper. Caroline called Charles Sr. this morning and asked him when he was coming. I don't think that he could have gotten out of it even if he had wanted to. Katherine is supposed to come over tomorrow and Caroline can't wait. She has even drawn a picture for her. We have purchased 2-way radios so that they can talk to each other.

I got a chance to meet Gwen and her parents this evening. They are nice people and Gwen is a real cutie. She started her first chemo drug, Thiotepa, today. This is the drug that requires 4 baths a day for the first few days. She will get her first transplant next week. Please pray that this will go well for her. You can check out her website at the link above.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, February 17, 2005 9:05 PM CST

Day -6 before 2nd Transplant

Things have gotten a little tougher for Caroline today. She was feeling fairly well till lunchtime this afternoon and the nausea began and has lasted off and on through tonight. She is taking 2 or 3 nausea meds now. She has drive heaved about three times and after one time, she perked right up and joked around with the nurse. The nrse told us that this was why she worked with children. If an adult had thrown up, they would probably lie around for a few hours, where a child will hop right up and forget about the nausea for a while. She started off well doing her laps, but by the end of the night we only got in 7. The doctors have told us not to worry about her eating and they started her on lipids (fats) tonight along with a higher sugar content in her IV fluid. They will start her on the hyperal later in the week. She did get in some playtime with Sara, the Child Life Specialist, this afternoon. Continue praying for Caroline, as this is just the start.

Remember to pray for Katherine. She is still having a hard time adjusting to us being gone. She could use all of the encouragement she can get.

Thanks to those of you who have left the well wishes and prayers on the message page. It encourages us to read the comments each night.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, February 16, 2005 9:56 PM CST

Day -7 before 2nd Transplant

We arrived at the hospital this morning at about 8 am. Caroline began her first chemo at about 10:30 am getting Mephalan, which goes for 30 minutes, and then getting Carboplatin and Etopophos, which goes for 24 hours. She will take the Mephalan for 3 days and the Carboplatin and Etopophos for four days. When she finishes the fourth day, she will finish her last chemotherapy. We started in August and will be through with the chemo on Sunday. Caroline has been doing great today. She has felt wonderful today and has been a real character. She played around with Dr. Horan and Ellen, our Nurse Practioner, this morning on their visit. They said that she really looked great. My Dad came around lunchtime to bring our small refrigerator and our card table. He played around with Caroline for a while and was surprised to find my youngest sister, Karen, here. Karen (KK) was in town for a meeting on E-Philanthopy at Georgia State (She works for the Alumni Assoc. at Valdosta State). We also had a visit by Ethan and his mom, Julie. They were here getting their counts done at the clinic. He comes back for his second transplant on the 28th. Caroline did a good job of walking her laps today and amazed the nurses at how fast she was going. I hope that she will keep this intensity up as long as possible. Our room is a little smaller than the room we had last time. We are finding that we are having to adjust our materials we brought with us.

Continue to pray for Katherine. She is still having a hard time adjusting to us being gone. We hope that things will settle down a little with her, but this time she knows what is going on and this leaves her feeling insecure.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, February 15, 2005 10:19 PM CST

Night before going back to Hospital for 2nd Transplant

We are running around trying to make sure we have everything we will need for the next 3 or 4 weeks. We had the hard job of saying goodbye to Katherine tonight. She went over to her grandparents' house tonight and that was a very emotional scene. She was fine till it was time to leave and she did not want to go and cried and ended up having both Nancy and myself in tears. Caroline gave her the biggest hug when it was time to leave. I finally got her out the door by giving her a ride on my back (I may need to go to the hospital now myself). Please pray for Katherine. I think she knows how long it will be that we are away from her, as compared to last time she wasn't sure.

We have to be at the hospital by 8 in the morning to check in. We are supposed to start chemo sometime after we arrive and she will have high dose chemo for four days and then have 3 days of rest. She will have the second transplant on Feb. 23rd.

I have to tell about a situation today at my school. Many of you know that I am head of the Alternative school for Carroll County. This morning I gave all of my staff the green CureSearch wristband and asked them to remember Caroline in prayer while we are gone. Most of the staff put the bracelets on and wore them in class. I had several of my big guys come up and ask about the bracelet and a couple wanted to buy one. I told them that I did not have any extras, but would see about ordering some more. They then told me that they wanted to donate some money anyway for my daughter, even if I didn't have more bracelets. Another boy, a 7th grader, who I have had to discipline several times sent me a note. The note was folded up several times and inside the note was $2. The note read, " I hope that your daughter gets well and here is some money for her and don't even think about giving it back." My secretary said that she was going to have to think about him in a whole new way. I don't know how many of them stop me in the hall and ask about Caroline. My kids may give their teachers grief, but all in all, they are still good kids. They are like lumps of coal, the diamond is down there. I took the money that the kids donated and put it in our school's Relay for Life fund. We are going to participate as a school and see how much money that my 100 kids and 27 staff members can raise.

Remember us tomorrow

Charles, Nancy, Katherine, and Sweet Caroline

Monday, February 14, 2005 10:06 PM CST

Day #40 Post Transplant

We went to the clinic this morning and boy was it crowded. I did not think that I would ever find a parking space this morning. Mondays are always the busiest at Egleston. I went all the way to the top of the parking deck and then as I was coming back down, a family was leaving. That was better than Tommy's mom, she went up and down the deck three times before finally parking in the emergency room parking area. But parking was not the main reason we were there. On Friday we were told that Caroline's ANC (Absolute Neutrophil Count) was at .88 and it needed to be higher or we would have to postpone the transplant scheduled for this Wednesday. The ANC is a formula based on Caroline's White Cell count. This weekend I asked people to pray mainly for Caroline's White cell count. Today when she had her ANC checked, it was at 2.03, which was .03 above the point it needed to be. Talk about prayers being answered, that was God doing some major blood work. When I told the Mary, our Nurse practioner, that we had everyone praying for her white counts, she said then the prayers worked. We now are preparing to go in at 8 am on this Wednesday.

While we were at the clinic this morning we had the opportunity to see some old friends and meet some new ones. We got a chance to see Tommy and his mom today. He was there for a check up. We also met a young boy who was there for a check up for his Bone Marrow Transplant. I apologize that I don't have his name, but we met him and his family last week. They told us about wearing the blue wrist band and how that is for Bone Marrow Transplants. This week they brought us three bands to wear. I guess it can stand for Stem Cell Transplant too, the only difference is that Caroline's transplant came from herself rather than from a donor. We also got a chance to meet little Kylie in person today. Her website is one of the links above. Talking about a cute little girl, she is that. She is about to be 23 months old and has had a time with her Neuroblastoma. She was there to see about having stem cells harvested and she is being treated by the doctors here and in New York. We had a good chance to talk with her mother about what has been going on with her and to explain some of the things that we have been going through with the transplant. A side note about Kylie, her grandfather is the NBA great, Rick Barry. Her dad and her uncle both played for Georgia Tech and were great players in their own right. I believe that Jon still plays in the NBA. But that is only a side note because Kylie is the really special member of that family. Please pray for her as she has a tough road ahead of her. Her family are true believers and have faith. All you have to do is read the entries in their journal and you will see how strong they are in their faith. We won't let this evil win.

Charles, Nancy, Katherine, and Sweet Caroline.

Sunday, February 13, 2005 10:15 PM CST

Day 39 Post transplant

Caroline had a good day again today. We are patiently waiting for our clinic appointment in the morning to find out what her white counts are so that we will know if we go in the hospital on Wednesday or not. Nancy took Katherine to the Mall this afternoon to buy her some new tennis shoes before we go back in. I spent the evening watching the Grammy's and I always enjoy watching this.

Tomorrow is Valentine's Day and we wish all of you our Love and God's Love.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, February 12, 2005 9:26 PM CST

Day +38 Post Transplant

Today was a pretty uneventful day around the house. We tried to empty a few more boxes from where we had everything boxed up for the new carpet and painting last month. We have about 40 or so more boxes to go and we hope that maybe in a couple of months or so, we'll have them emptied. Nancy and I did get to go out tonight with our Sunday School class to eat at a Hawaiian Restaurant in Carrollton tonight. We had Cindy Godwin come over and watch the girls for about 3 hours. This was the first time that Nancy and I have had a chance to get away from the house together. Nancy told me either we go with the class tonight or I had to take her out seperately. We are glad that Caroline decided to let us do this.

Don't forget to pray for Caroline's white counts to rise. We will have to postpone the next transplant if her counts do not rise up enough by Monday morning. Our appointment is at 10:30 on Monday.

Please don't forget to pray for all of the children with Cancer, especially those we have links to above.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, February 11, 2005 10:03 PM CST

Day +36 Post Transplant

We made our trip to the AFLAC clinic at Egleston today. While we waited to see the Nurse Practioner, they gave Caroline an anti-biotic to replace the Bactrim that she usually had taked each week. This medicine is given IV once a month. I asked why we didn't take this all of of the time and she said that insurance did not like to pay for this. They do not want to give the Bactrim at this time because it has a tendency to cause a drop in the white count. Caroline's counts were mixed today. Her Platelet count is still rising, her red cell count is staying about the same, but her white count is not where they want it to be. This may pose a problem for next week. Her ANC (Absolute Neutrophil Count) is at .88 and they told us today that if it stays this low, then they will have to postpone the transplant until it is a little higher. At this level she is able to catch a sickness or germ very easy. We now have to go back to the clinic on Monday to do another count so that they can see if we need to go in on Wednesday morning or not. Please pray that her white count will go up enough so that she can go ahead and get this transplant behind her.

I hope that you get the chance to check out some of the web sites that are linked at the top of the page. It is interesting and encouraging to read some of the sites. Please visit these sites and let them know that you are praying for them. It is amazing to see the faith of some of these parents and how they are dealing with these problems.

A reminder to pray for Katherine during the next few weeks as we go in the hospital with Caroline. She is going to be going through highs and lows and we won't be here to help her.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, February 10, 2005 10:02 PM CST

Day +36 Post Transplant

Another good day here in Bremen. Caroline had a visit by her Kindergarten teacher, Ms. Sewell. According to Ms. Sewell, Caroline is doing very well with her knowledge and she did very well with the part of the GKAP test that she was tested over. She really likes Ms. Sewell and we appreciate her taking the time to personally come over and work with Caroline. Caroline has a few letters that she must learn before the end of the year and know how to write them in denialian.
We go to the clinic in the morning for a check of Caroline's blood counts. Pray that her white count is up to the point it needs to be before we go back in on next Wednesday.

Charles, Nancy, Katherine, and Sweet Carolne

Wednesday, February 9, 2005 9:58 PM CST

Day +35 Post Transplant (14 days till 2nd Transplant)

Things are going well here at the Johnson household. Caroline and Katherine are doing well. Katherine has still not given her oral report in social studies. Caroline has not complained as much about her throat today and has done well taking her medicine. She is constantly eating and I think she is on her way to regaining her weight. We bought a new set of scales yesterday and it gives the weight in both pounds and kilograms. Caroline's weight according to the new scales is up 1 pound or .4 kilograms. We give the kilograms because that is what we go by at the clinic and in the hospital. I won't mention the problems that it shows with my weight (at least it is under 200). Nancy said that she didn't like the new scales and you can guess why she might say that.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, February 8, 2005 10:11 PM CST

Day +34 post transplant

Caroline has been complaining about her throat today. She is saying that it feels like there is something blocking things when she swallows. She puts her hand up to her throat whenever she swallows. She is taking diflucan in case there is a case of thrush. We are not sure about what is going on, but we go back to the doctor on Friday.

Caroline's teacher, Ms. Sewell came by today and worked some with her on her school work. They worked on counting by 10's to 100 and other things. Ms. Sewell also brought Valentines for Caroline to fill out for her class. Nancy will drop them off on Monday morning. This is a neat way for Caroline to still be active in her class, even though she can't be there.

We are sorry if you have had problems reading the page lately. I discovered that with the change in the picture at the top, it changed the way the text was displayed and also made it hard to print. My Dad called me this morning describing the problem, and finally tonight I figuredout what was causing the problem.

Charles, Nancy, Katherine, and Sweet Caroline

Monday, February 7, 2005 10:02 PM CST

Day 33 post Transplant

We visited the clinic today at Egleston. We had a long wait till they were able to see Caroline and got into an examination room about an hour and a half after we arrived. We found out that Caroline has gained a tenth of a Kilogram since our last visit a week ago. Her hemoglobin and platelet counts were up, but her white blood cell count was down again. At first they thought that they would give us Neupogen to raise her counts up, but decided that looking at her percentages they would wait and see how the counts would look on this Friday. We know the day we go back in the hospital for her second transplant now. We go back on Feb. 16th. They will give her four days of high dose chemo followed by three days of rest and then on Feb. 23rd, she will get her second transplant. We pray that things will go well and Caroline will recover quickly from this next transplant.

It is not hard to understand why Caroline has had a weight increase (even if it is small) and that is because she is constantly eating. We know that a lot of you have been praying that she would gain her appetite back and we thank you and thank God for answering those prayers.

We also are appreciating the prayers on Katherine's behalf. A small prayer was answered today. Katherine has been worrying about her trip to Washington next month and wasn't sure about her rooming with someone she did not know well. Today it worked out that she is going to get to room with one of her good friends. Also, she has mentioned letting one of our family friends, Mary Sellers, going with her on the trip. We do not think that we will be out of the hospital when they leave, and that Alice would have to go. Alice mentioned Mary's name today and Katherine said that would be great idea. We have to talk to Mary about it, but hopefully she will be able to work that out. We've already paid for the trips. Continue to pray for Katherine that she will be able to do well when we are gone for so long.

I asked Caroline if she wanted me to replace the picture at the top of this page and she told me no. She said she thought that it was cool. I was planning on changing it and replace it with a nice pretty one, but she's the boss.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, February 6, 2005 9:59 PM CST

Day 32 Post Transplant

Things for Caroline went fairly well today. No big problems for her, other than her having some complaints of pain in her throat when she eats. We don't know what this means and she says that she is still able to eat. We go to the clinic in the morning for a check up and hopefully will find out when we go back in for Transplant #2. Pray that everything goes well in the morning.

Pray for Katherine tomorrow. She has a project due in school and has been worried about it. It involved an interview of a WWII veteran. We appreciate Charles Bagwell being interviewed. Katherine has had to prepare for an oral presentation.

I have added a couple of links of some children who have lost the battle against Cancer. One of these is Derek, whom most of you have kept up with on this site and his, and the other is a little girl who was at Scottish Rite several of the times that we were there last fall. Yesterday was to have been her 2nd birthday. Remember their families in prayer and continue to support these other children who are going through the ordeal of cancer.

Charles, Nancy, Katherine, and Sweet Caroline

Saturday, February 5, 2005 10:37 PM CST

Day 31 post Transplant

Caroline had a good day again today (not counting the couple of times that she threw up). This afternoon we got out the race car and she drove for a little while and had a pretty good time. We did this while Nancy and Katherine went to the girl's cousin's, Amber, birthday party. After she we did this for a while, we came back in and watched her new movie "Two Brothers." She did not mind not going to the party. I have put a couple of pictures of Caroline driving the car in the photo album. I hope you like the picture of Caroline at the top of the page. This was made when Caroline was first in the hospital during the first transplant. We called it her "Goofy Goober" picture.

Katherine seems to be doing better and had a good time with her mother last night. Continue to pray for her as the time nears for us to go back into the hospital in a week or so.

Charles, Nancy, Katherine, and Sweet Caroline

Friday, February 4, 2005 9:46 PM CST

Day +30 post Transplant

Caroline has had a couple of good days. She has been eating pretty constantly and working with Nancy on some school materials. She is still very clingy to both Nancy and myself, at night and during the day. Last night I had to lay down with her while she was trying to go to sleep and it took me about 30 minutes before I was able to sneak up from the bed.

A big thanks to my friends at Central Middle School. They asked me to stop by and see them. I stopped by yesterday and they had a nice card which most of the staff had signed and also about $525 for us. They told me that they wanted to provide something to help us with food when we go back in the hospital for the second transplant. I may have worked there for only three years, but they are a part of me.

Pray for Katherine. She is having a hard time these days with dealing with friends at school and also with classwork. She is under a lot of stress right now and some of her peers are not being too helpful. She decided not to go to the Daddy/Daughter Dance tonight because she didn't want to deal with some of these issues. Nancy took her to the Mall tonight and I stayed with Caroline. This was good for both of them so that they could spend some time together and also was the first time for Nancy to get out of the house in a few days.

Thank you for all of the prayers and concerns for our family in these times of stress and need.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, February 2, 2005 9:47 PM CST

Day 28 post Transplant

Caroline did very well today. She has been eating and drinking a lot better in the last couple of days. She has started sending orders for her grandmother to go to the store to find certain canned or processed foods that she wants. She has been able to eat fruit (as long as it is washed thoroughly) for the last few days and has really enjoyed apple and grapes. She has been eating push-pops and even sent Alice (grandmother) to the store for those.

I told Caroline tonight that as soon as the weather warms up, I will get her race car back out and she can run up and down the street. She had the biggest smile on her face. I told her that she would still have to wear her mask over her mouth and nose, but she said that was ok. I think it will do her good to get out and enjoy some of the outdoor things she likes to do before we go back to the hospital. I will have to dig it out in the basement. We still have lots of boxes and stuff stacked up from where we had our house painted and the new carpet put in. Nancy has been slowly trying to empty some of the boxes, when Caroline will let her.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, February 1, 2005 9:47 PM CST

Things are getting better for Caroline. Today she had no pains when she used the bathroom and had more to drink. She is eating better and ate two scrambled eggs this afternoon. She is constantly wanting food to eat now. She is doing better. Thank you for the prayers that you have been saying on her behalf. I believe that prayer and faith is the key to beat this evil thing known as cancer.

Charles, Nancy, Katherine and Sweet Caroline

Monday, January 31, 2005 10:21 PM CST

Day +26 Post Transplant

We went to the clinic this morning for a checkup. When we arrived in the room that Caroline has to go in for them to draw her blood and do her weight and blood pressure, we saw some good friends waiting for their checkup. Ethan and his parents were there and Ryan and his mom were there also. Ethan and his parents had spent the entire weekend since Thursday at the hotel and wanted desperately to go home. They were called back to an exam room before us and while we were waiting, Ethan's dad Chris came by and told us that they were going home. We wished them luck. Ryan went in a little later and then came our turn. One of Caroline's biggest fears was that they were going to have to reinsert the feeding tube. The nurse practioner, Mary, told us that since Caroline had been eating a lot over the weekend, they would let her do without the tube. If we see that she stops eating and she starts losing weight more rapidly, we will need to bring her back in on Friday, otherwise we don't have to go back till next Monday morning. Her weight was down about a pound and her white blood count was down a little, but her hemoglobin and platelet counts were up and they said she was doing wonderful. They believe that the stem cells have engrafted and we are in a position to be ready for the next transplant. After checking with Tara, the intake coordinator, they said we will probably go back in around the 14th or 15th of Feb. That gives us all of next week, which we originally thought we would go back in on the 9th. One little problem we are dealing with is that she is not drinking enough and has had problems with a pain where she urinates. Mary said that everything looked fine and even did a urine test to make sure that there was no infection. She said that it was probably that she was drinking too little and therefore her urine was highly concentrated and could cause a little pain. She said the more she drinks it would dilute the urine and be a little more comfortable. We got home and she still has not had much to drink and said she wouldn't drink unless she was thirsty (now where have we heard this scenario before). Before bedtime tonight she complaining with the pain heavily so we thought that why not use some of the fluid that we had from her IV fluids the week before. We called the dr. on call and they agreed with us and we started her on 50 ml's an hour and are going through the night. We hope this will help her pee a little better in the morning. The Dr. said that she felt that at that rate we might be able to get her to drink more on her own in the morning. Please pray that she will continue to eat and start drinking a little bit more.

Please continue to pray for all of our friends and pray that each of these children will experience blessings and their families will be comforted.

Charles, Nancy, Katherine, and Sweet Caroline

Sunday, January 30, 2005 10:16 PM CST

Day +25 post Transplant

Well we've had a strange weekend here at the Johnson household. Late Friday evening Caroline gagged while spitting up and she ended up throwing up extremely hard and threw up her feeding tube. Well she had it hanging out of her mouth while the other part was up through her nose. We had a hard time getting it to come out, but finally got it. We were not able to use that tube again, but the Lord knows how to work things out when you need help. Caroline on Friday starting getting some of her taste back and has been gradually eating more and more all weekend long. We hope that it is enough that maybe the doctors won't have to put the tube back in tomorrow when we go for a clinic checkup. Pray that she won't have to have the tube reinserted. We may find out tomorrow when we have to go back in for the second transplant. Our guess is around Feb. 9th. The doctors are the only ones who know for sure.

On the weather front, things did not get too bad around here over the weekend. The only thing that gave me some fits was the satellite dish starting to freeze over and on late Saturday afternoon, some of the signals started to become distorted. We stayed in the house all day Saturday and good family time and played some games with the girls. Katherine has learned to play Clue and loves to play (I still won each time, even though Katherine said she had the same accusation as I did but was waiting to say it).

Pray for all of our friends who have links above. I hope to be adding a few more names within the week and I also hope to start adding a few more things to the page. I am trying to learn HTML.

Charles, Nancy, Katherine and Sweet Caroline

Friday, January 28, 2005 10:05 PM CST

Day +23 past transplant

Caroline is eating some today and has eaten soup, some pizza, and a few other foods. She has had a few problems with the feeding tube and being sick form the tube feedings. It may be a good thing that she is getting some of her tastes back. We appreciate Ray Sewell for being able to provide a generator if we lose power. Hopefully we won't have to call him for this. Nancy's mother has already called tonight and has asked if we want to come over. They have a huge stove in their baking building that warms the building up really good and they said we could stay there if we need to. We'll see what happens.

Hope you stay safe.

Charles, Nancy, Katherine, and Sweet Caroline

Thursday, January 27, 2005 10:22 PM CST

10 am Friday Jan. 28

If the weather gets bad and we lose power, we may need some help. If anyone might have an extra generator we could use, please call the house 770-537-5122. Caroline has to have her feedings each night and the battery on the pump lasts for just a few hours.

- - - - - - - - - - - - - - - - - - - - -
Day 22 since Transplant

Just a quick journal tonight letting you know that Caroline finally let go of the tube this morning and accepted the tube more. She has done well with the feedings and even took a few bites of pizza tonight. She said that she could tell that the pizza was a little spicy. She did throw up tonight and lost what she ate, but it is a start for her to eat a little of something and say that she had a little taste. Keep up the prayers so that she will have an uneventful time before we go back in for the second transplant.

Charles, Nancy, Katherine, and Sweet Caroline

Wednesday, January 26, 2005 9:40 PM CST

Day 21 after Transplant

Caroline had her clinic visit today and as we expected, they had to insert a feeding tube so that we could get some nutrition in her. She fought it for a while and she even tried to get a pinky promise from nurse Liz. It took 4 of us to hold her, including Dr. Chiang. She still does not like it in her and has been holding it at her nose since she had it put in this morning. She did this with previous tubes and hopefully she will let it go. She says that she is not scared that it will come out, but rather that it hurts when it wiggles. Pray that she will accept this and will become comfortable with it. She will only have this in her nose till we go back in for her next transplant and then they will pull it back out. It seems a shame for her to only have it for a couple of weeks, but we have to have her get some nutrition somehow.

I go back to work tomorrow. Caroline asked me tonight if I had to go back tomorrow because she wanted me to stay. I told her that I have to go back to work sometime. There are some serious issues that I have to deal with tomorrow anyway. A big thanks to Bill Crick and Louis Brummett for covering for me while i've been away. They are both my half-time counselors and are both former principals and the county has been good to pay them extra for coming in on the week that they have off. A big thanks to my staff also, especially my secretary, Sharon Hubbard. She does a great job of holding the school straight.

Keep praying for all of the children with Cancer. Ryan and Ethan are getting out of the hospital this week. Ryan goes to the hotel tomorrow and I believe that Ethan will probably get out Friday. Check their site for more details.

Charles, Nancy, Katherine, and Sweet Caroline

Tuesday, January 25, 2005 8:55 PM CST

Day 20 since Transplant

Caroline is still not eating and we go to the clinic in t he morning. We will see what the doctors tell us tomorrow. She did start back playing video games again today. This is the first time since day -6 (second day of chemo) that she has even bothered with a video game (not counting the days she has stolen my Nintendo DS). We are looking for all of the positives in the midst of the negatives. We got our cat back home today from the Vet and her stay was almost as costly as our hotel stay over the weekend. She took most of the afternoon to re-establish that she runs the house and we basically serve her needs.

Nancy determined that Caroline needed to have a nick-name. She said that Ryan was Super Ryan and Ethan is Big E, Nancy said that Caroline should not be left out. We thought about it and came up with Sweet Caroline. Soon as Nancy suggested the name, we both broke out in song (the only part we know the words to is just "sweet Caroline", but we can hum the rest). So, from now on we'll close out with the following:

Charles, Nancy, Katherine and Sweet Caroline

Monday, January 24, 2005 11:26 PM CST

We are home and boy does it feel good to be here. We had our clinic appointment this morning at 9:30 and things went well. Caroline's counts were up again and her white count was at 4.3. Dr. Chiang asked about her eating and we told him that she had not eaten anything all weekend. He told us that maybe coming home would help her and he said that he would not put in the feeding tube just yet. He encouraged her to try different food and see if she would eat something. We got home around 2 this afternoon and got a chance to finally see the house with its new carpet and new paint job. Boy it looks like a different house and we appreciate the job that Steve Worthy's Sunday School class did in helping us out. I would like to again thank Joe Simms for heading the project up. We offered Caroline a lot of things and she decided that she wanted to eat spaghetti, but guess what? She ate two bites and said that she could not taste anything. We added a lot of salt and she said that she could still not taste anything. She told us that if she couldn't taste it, then she wouldn't eat it. Pray that she will start to eat. She is still on IV fluid through the night and we have to go back to the clinic on Wednesday morning.

I have added a new feature in the middle of the page. You will find new links to other sites of children who have cancer. Please visit these sites and let the families know that you are praying for them and give them encouragement. Thanks to Ethan's dad Chris for telling me how to add this feature.

Hopefully I will make it back to work on Thursday. I appreciate my staff for making things work while I am out with Caroline. I also have a great school system that has allowed me to take care of my family.

Charles, Nancy, Katherine, and Sweet Caroline.

Sunday, January 23, 2005 9:05 PM CST

Day 18 Since Transplant

Still living in our half-way house (hotel). Caroline is still not eating. We have an appointment at the clinic in the morning at 9:30 AM. I have a gut feeling that she will probably get a feeding tube tomorrow. I hope that will not delay us going home. We have tried many foods and tried to get her to eat something. She did put Fruit Roll Ups in her mouth, but said that she did not taste anything. She proceded to spit that out. Katherine went home this afternoon and that made Caroline a little sad. We HOPE that we will be going home tomorrow. We are running out of ideas of getting food here at the hotel. We are only a mile from Buckhead, but choices for food are always a problem. It would be so nice to be home. We all miss home so much (even Katherine called tonight and said she wanted to be home). Please continue to pray for all the boys we left at the hospital, Ryan, Ethan, and Tommy.

Charles, Nancy, Katherine, and Caroline

Saturday, January 22, 2005 9:19 PM CST

We are into our second day at the hotel and things are getting a little better. We all slept in the same bed last night with Caroline getting her fluid. We positioned the bag with the pump above her head, behind the pillow. She only had to get up once to go to the bathroom. She slept late today, getting up this morning around 10 am. She has been so used to getting up late, we didn't bother her. We finally had to get her up so that I could give her the dose of Neupogen to build up her white cells. She has been a lot more talkative today and got a lot more when Katherine arrived this afternoon. The first thing that they did was hug each other real tight. Katherine is staying with us till tomorrow evening. She has to go back so that she can go to school and we can go to the clinic on Monday morning. They played all afternoon and evening. It was the old Caroline playing with her big sister. The only problem we are having is the occasional stomach ache, which requires giving her morphine and nausea medicine, and also that she still has not eaten anything. She says that she is not hungry and even though her stomach has growled a few times, she will not put anything in her mouth. If she doesn't eat something soon, the doctors will probably put the tube back in. Just pray that the desire to eat will come back.

A big thanks to our Sunday School class for putting all of the furniture back in the house this morning. Joe Simms has really done a job and has been a blessing in heading this up. We even got an unexpected piece of furniture from Ricky Summers. According to Nancy's mom, it really was a nice addition to the house and she said that Nancy is going to love the way the house looks.

Even though I took Derek's site off as a link, Naomi emailed me and said that she finally updated the page today. It is a letter to Derek. His site is www.caringbridge.org/nc/derek. Check it out.

We'll update more tomorrow.

Charles

Friday, January 21, 2005 8:10 PM CST

Well we were released from the hospital today around 1PM. We arrived at the hotel about 30 minutes later. It is nice to be free (kinda). Caroline will still be on IV fluid during the night and she can take oral meds for pain and nausea. She still is not eating, though we have offered her several things and my dad and I made a run to the Publix down at Lenox. It is a lot different over here in Buckhead. We are about a couple of miles from Lenox Mall and Phipps Plaza and the traffic around here is unbelieveable. The doctors told us today that if she progresses as she has been doing at the hospital, then we will hopefully be able to go home on Monday after our Clinic appointment at 9:30 AM. Keep us in your prayers this weekend. We are in a nice Suite with 2 bedrooms and 2 baths. The main room has a kitchenette so that we can prepare Caroline's food and the den area has a nice fireplace. I told Nancy that it was nice enough to live in, but she said she still wanted to go home. We ordered out tonight and there is a service that will go to any restaurant for you and then bring the food to you. We ordered from Jocks and Jills. Maybe Caroline will start eating tomorrow, because if she doesn't, they will probably reinsert the feeding tube on Monday.

A special thanks to Kathy Young for her and her family visiting with Nancy and Me this afternoon. She is the receptionist at the Carroll County Schools Office and she brought a bunch of items that a lot people at the county office sent. She organized this and she brought it to us today. She thought that she would be right across the street from us after taking her son to a doctor's appointment at Children's. Two problems arose for her and her husband. The first was that we left the hospital to come to the hotel before they could arrive and the second was that their appointment was at Scottish Rite and not at Egleston. They still were able to get together with us and brought the bounty to us. We really appreciate this. Kathy also has a special connection in that they lost a daughter about the same time that Caroline was born. Their daughter also had an omphalacele like Caroline, but did not survive to be born. She was using the same obstetrians as Nancy and knew about us, but things didn't work out to allow us to get together. Earlier this year, she introduced herself to me at the County office and told me her story. So we really appreciate her and her husband and children for bringing over the goodies and thank those who gave.

I am going to replace one of my links with a new one starting tonight. You know that Derek and his family have held a special place in my heart. I want you to continue to pray for them and still visit their website to leave encouragement for them. I don't believe that they have updated the site since the first of the month. We have spent the last couple of weeks next door to a courageous 3 year old who is in the middle of his first transplant. His name is Ethan and has Wilms Tumors. He and his family live in Sharpsburg, Georgia and I discovered today that their family go to church with my cousin, Mike Waddell. Mike and his wife have two children with MD. I have mentioned them earlier in my posts. I would like for you to visit his site and offer encouragement to him and his family. His parents are strong Christians and can always use your encourgement.

Charles

Thursday, January 20, 2005 9:37 PM CST

Well we got the official word this morning that we are getting out of the hospital on Friday. We will be moving to our new half-way house at the Residence Inn about 5 or 6 miles away. They plan on releasing us tomorrow afternoon after they top her off on her blood, probably a pint of red and one of platelets. We will stay there until Monday and then after a visit to the clinic, the doctors will determine if we can then go home. The home health people will meet us either here in the afternoon or at the hotel. Caroline's white count continues to rise and went up to 2.34 today. We will get one more count in the morning and then the next will come when we come back. We are going to experience something new by giving Caroline her pain and nausea meds by mouth. For the last few months, she has had a feeding tube and that has made the administration of medicine a lot easier. We will go out with only IV fluids at night and if she doesn't decide to eat this weekend, they will put a feeding tube back in. She does not want to have that put back in. We got word today that the insurance will not cover the hotel, but I think we have enough in the bank to cover the cost for this. This afternoon, Caroline was released from the pole from 1:30 till 10 tonight. We finally got her to do her last 5 laps this evening. She hates doing the 10 laps each day. They hooked her back up to the pole tonight with just IV fluids and she gets off again at 8 am tomorrow.

A thanks to all of the Carroll County Schools people who signed the book today. It is nice to have us remembered. And a thanks to everyone else also.

Please pray for us in the next few weeks. We have been given a book and have been told some of the restrictions Caroline will have. She will not be allowed to go into public places for a while and will not get to go back to school until at least 50 days after the last transplant. We figure that this would be around early April. If everything goes as planned, we will come back to the hospital around February 9th and have her second transplant on February 16th.

Well time to get ready for tomorrow.

Charles

Wednesday, January 19, 2005 10:04 PM CST

Caroline's white cell count continues to rise. Today it went from 1.2 to 2.06. The doctors want it to continue to rise and we have been taken off of the nausea medicine from around the clock back to as needed. We thought we might not need it, but tonight she got sick again and we had to give her some phenegrin. She has some good moments and not so good today. She is getting some of her stubborn ways back and I guess that points to her getting better. We are looking for her hopefully getting out of the hospital by the end of the week. We will then go to our half-way house, the hotel for up to a week, before we get to come home. They plan on removing the pain pump sometime before we wake in the morning, and have started cutting back on her IV feeds. The IV feeds have had the calories cut by half and tomorrow afernoon she will be off the IV for about 4 hours. Pray that she will start to develop an apetite so that she won't have to have the feeding tube reinserted up her nose. Dr. Chiang said that we would decide on that tomorrow. Also, the Nurse Practioner, Ellen, came by and gave Nancy and myself homework to read. She gave us a handout called "Going Home." It is about the things we need to know about going home from the transplant. We were told to read it and have any questions ready when they come back tomorrow to check Caroline.

An update on Nancy's dad, Tearl. Today he went to his Oncologist and found out that his Hairy Cell Leukemia has come back. The doctor decided not to put him back on chemo at this time and start a medicine to rebuild his red blood cells. Some of you may remember that about 3 or 4 years ago, Tearl was undergoing chemo for the Hairy Cell Leukemia when he developed Guillome Burea, which paralyzed him and caused him to spend about 3 months in ICU at Emory. He recovered and the cancer went into remission. Because of what occurred, his doctors are scared at this point to do chemo. They said today that they are not ruling out chemo, just not at this time. Pray for him.

Charles

Tuesday, January 18, 2005 10:12 PM CST

Today was day +13 and it was not an unlucky day. Dr. Chiang told us this morning that it looks like we will be leaving the hospital at the end of the week. They are slowly taking her off of the medications that she has been taking. Today they dropped one of her nausea medicines from around the clock to as needed. They are removing one of her antibiotics tomorrow. Her white count moved from .72 on Monday to 1.2 this morning. We are seeing a steady rise in her counts. Her red and platelet counts are still going south, but not at the pace they were earlier. She felt very good today and played with Sara, the child life specialist, this afternoon and had a good time. They scheduled a play date again for tomorrow. She had her hospital school teacher come by and work with her a little this morning. The competition with the boys is still on, she put in an extra lap tonight (11) so that she could let Ryan know the challenge is on. When I went out to get a Coke later this evening, our nurse told us that Ryan wanted us to know that he got in 12 after we told them how many Caroline put in.

Pray for another boy on the BMT hall with us. His name is Tommy and he has Medullablostoma and it is a reoccurance. He went into remission in 2000 and it was rediagnosed again in 2004. He is undergoing a stem cell transplant also.

Update again tomorrow.

Charles

Monday, January 17, 2005 9:26 PM CST

Today was day number 12 and things are getting better. Her white count went up to .72, which is up from .39 yesterday. They have reduced her adovan (anti-nausea medicine) back to every 12 hours. They are continuing to reduce her pain medicine. They told us today that if she continues to do well and no major fevers, then we might be able to get out of the hospital as early as this weekend or early next week. Dr. Haight was very pleased with Caroline today when she looked at her. She said after she finished checking her, "I have to go check on some sick kids, because there are no sick kids in this room." Caroline played 2 or 3 games with Nancy and me in the playroom this afternoon.

We kind of have a small competition on the BMT hall about doing laps. It is the boys against Caroline and who can get their laps done and get the most. The boys won today, in that Caroline wasn't able to finish hers tonight and got in just 8. We did 5 earlier in the day and we tried to finish hers after she had finished some anti-nausea medicine.

Our house renovation project is coming along very well. The Sunday School class finished their work last week and today the flooring company came in and put in the new carpet in the house. According to Nancy's mom, it looks real good. We can't wait to get home and see. We asked Katherine how it looked and according to Nancy she gave a Charles answer..."it looks OK." The class is coming back on Saturday to put all of the furniture back in the house. A big thanks to all of those who helped.

Charles

Sunday, January 16, 2005 9:51 PM CST

Caroline had a good day today. She has only had a fever a couple of times today and was not too high. Her white count continues to come up and moved to .39 from .36. I know that it is not much, but it is still higher than the day before. Today, the doctors started the process of reducing her pain medication. They want to slowly reduce the amount she is receiving so that she will hopefully be off by the time we leave. They said that if they were to take her off all of a sudden that she would go through withdrawls and have the shakes and be very sick. They said we are now in the home stretch and hopefully will be able to be out of the hospital by the end of the week (maybe). Caroline had some help at the end of the day when her aunt KK and Denise came over to see her and they all played for a while in the playroom. Also, this evening, Nancy's mom and dad came over and allowed Nancy and myself to go out and have a nice dinner away from the hospital. We went over to the Longhorn and enjoyed a good meal. It is nice to see Caroline act like she feels pretty good for a change. Keep on praying that we won't have any setbacks in the next few days.

Keep praying for Ryan. He did not get out of the room today as he is feeling pretty bad. His counts are really down at this point and does not have any energy. He did not even get out to do any of his laps today. Pray that he will get some strength back and start feeling a little bit better.

Charles

Saturday, January 15, 2005 9:26 PM CST

Caroline had a better day today, overall. Her white count is at .36, up from .16 yesterday. We hope this is the beginning of that upward climb in her counts. She had a good morning, when her aunt KK came to see her from Valdosta. According to Nancy, she was like her old self and was playing with Dr. Haight when she checked on her this morning. The one thing that is confusing the doctors is the reoccurring fever she keeps having. They say that this is unusual with autologous transplants and usually happends when someone has a donor transplant. The doctor said that she plans on getting to the bottom of this fever thing.

Major problem - - - I was watching the Falcons game and the cable has gone out at the hospital. Luckily, Caroline got as one of her gifts a little radio and I am listening to the game as the Falcons are leading 38 - 17.

Today, I spent the most of the day with Katherine. I went home and we went over to the mall and I bought her reward for making straight A's on her report card and also for scoring real high on the ITBS. She wanted the CD set for the second season of SpongeBob. We then came over to the hospital to see Caroline and then I took her back to Bremen and she is spending the night with her friend, Alli. She said that she had a good day and that is what is important. A thanks to my Mom for coming over today and helping Nancy out here at the hospital. Also thanks to Steve and Cindy Worthy for coming over tonight and visiting with us. It is good to see some familiar faces and if you are around the area, drop by for a minute and say hey.

If you have not had a chance to read Ryan's post, check it and pray for him.

Charles

Friday, January 14, 2005 9:27 PM CST

Caroline had a little better day today, with some minor setbacks occuring through the day. She started off this morning with a lot of bleeding in her throw up. She had a platelet count of 37,000 this morning and the doctor on call decided that they would give her platelets. She received her third platelet transfusion at around 10 am. She has only thrown up a couple of times throughout the day into the evening. They cut back her nausea medicine to every 8 hours from 6 hours. Her white count went back up to .16 from .12 yesterday. The doctors are wanting to see a steady rise, so hopefully the count will go even higher tomorrow. She felt pretty tough today and has had some spunk to her. She was bossing us around the room this evening and even sent me to the corner and told me that I couldn't come out. She was telling us that she was the boss and we had to follow her orders. I am hoping that this attitude is a sign that she is recovering.

A special thanks to Joe Sims. Joe has headed up the painting and working on our house while we have been here at the hospital. I was home this morning and got a chance to see what they had done. Joe has come and worked on several other things at the house during the week. He has been a real blessing to our family and the class has been one also. So many people have wanted to do something to help us and we do appreciate this from the bottom of our hearts. God has been so wonderful to bless us in these trying times. God always provides.

Please pray for a young 3 year old who is our neighbor in the hospital. His name is Ethan and he has Wilms Tumor. He was diagnosed back this past February and is on his third treatment protocol. The cancer has come back twice and he is having a tandem transplant like Caroline and Ryan are. He had his first transplant infusion yesterday. His family lives in Sharpsburg, outside of Newnan. He is also a Scottish Rite patient and has the same doctors and Caroline.

Continue to pray for all of us.

Charles

Thursday, January 13, 2005 9:36 PM CST

Caroline had an ok day today. She has had a fever a couple of times today, the last this evening that has been the highest since we have been here. It went down after we took some tylenol and also walked a couple of laps. After we got the fever down, we were able to give her a bath. Her muscusitis is about the same, with a little less blood in the mucus. She is not throwing up as much, since she is on two nausea medicines throughout the day. It keeps her pretty groggy. She did get a red blood transfusion this morning and we are hoping that might provide a little more energy, maybe tomorrow. Her weight was a little higher this evening, but because she got medicine to make her urinate last night, they wanted to keep from doing that again tonight.

Ryan's transplant went smooth today, so continue to pray for him.

Charles

Wednesday, January 12, 2005 9:54 PM CST

Caroline got a little bit of good news this morning. We have the first signs of a white blood count. It was .17 this morning and was the first time that it showed up more than <.10. The doctors say that it is time that we should start to see the beginning of a the white cells. Caroline's mouth was a little better and her bottom was a little better. We will take any of the good news we can get. We don't know how long this will take, but we have faith that God will take care of this. Her platelets dropped down in the 70,000 range and her red count was hovering at 8.0 and if it goes below this, then it could require another transfusion of hemoglobin.

Pray for Ryan. He is due to have his transplant tomorrow. He has been sick today throwing up.

Charles

Tuesday, January 11, 2005 10:22 PM CST

Caroline today has been continuing to deal with the mucusitis in her mouth and throat. During the night she threw up enough blood to concern the nurses and after checking her platelet count, she had a transfusion of platelets this morning. After her transfusion, her count went from 23,000 to 94,000. Again, her threshold count is 30,000. After the transfusion, the amount of blood in her mucus went down considerably. The doctors are saying that we are in the worst part of this. They also increased her pain medicine levels today to control pain in her throat and stomach. Katherine visited Caroline this afternoon and brought her cousin, Amber, along with her. The child life specialist spent time with Katherine before she got to see Caroline and answered questions about Caroline's procedures. This was a lot better visit than last week's. Caroline still did not have much to say, since her mouth is hurting and we believe that she is a little embarassed by the amount of spit she continually has in her mouth.

Pray for Nancy tomorrow during the day. I am going to work in the morning and am leaving the hospital early in the morning and coming back later in the day. I am doing this on Wednesday and Friday. I have some things at school that have to be dealt with.

Thanks to my parents for coming over and bringing supper tonight. One of my mother's friends, Dixie Jackson, paid for the dinner and we appreciate it. Also thanks today to Nancy's mom for bringing Katherine over this afternoon. We have the best parents in the world. Pray for Tearl, Nancy's Dad, as he had a biopsy this morning to determine why he has a decreasing platelet level. We are hoping that his Cancer is not returning.

Charles and Nancy

Monday, January 10, 2005 9:46 PM CST

Things are going OK here at the ole hospital room. Caroline had her nausea medicine upped again today and also they increased her pain medicine doseage. Her days start off slow and she finally gets to feeling somewhat decent by late afternoon. She has done a good job of getting her jobs all done by the end of the night. Her platelet count today was at 39,000. She also started her neupogen today. Neupogen is a drug that encourages the growth of white cells and also new stem cells. We are hoping to see a positive white count within the next few days. She still has a little fresh blood in her mucus that she throws up each day, though not as much in the last few days. Please pray that she will improve so that we can leave the hospital. Dr. Chiang said that Caroline's mouth will probably start healing before her counts show an increase in her white count. Both Dr. Chiang and Dr. Horan both said that this time is worst for her mucusitis.

Charles

Sunday, January 9, 2005 9:55 PM CST

Another long day here at the hospital today. Caroline had a rough night and when Dr. Chiang came by we decided that her throwing up several times through the night could be possibly relieved by removing her from the pump to control the nausea. She is now on Adavan around the clock now at a higher dose. She is now taking Fenelin instead of Morphine and her itching has almost gone away. She has been throwing up the mucusitis and has had a lot blood coming up. Dr. Chiang decided that due to her blood loss and her platelet counts being at 13,000 this morning, she would get a platelet transfusion. We are participating in a research study on platelets and they set a target of 30,000 for Caroline. If there is active bleeding or if her count goes below 30,000 then she will get a transfusion. Today after her target dose was administered, her count went up to 55,000. She was sick several more times during the day, but finally she started improving by the end of the day. Her cousin, Lance, came to see her this afternoon along with her grandmother, Alice. They stayed for a little while and Lance got her to play with some play-dough before she got tired again. This evening, she did the remainder of her jobs and had a good bath. She did throw up again after she got back to bed.

We would really like to thank Nancy's parents, Alice and Tearl, for watching over Katherine for us while we are here at the hospital. Katherine is feeling very comfortable being there with them. We talk each day and each night before she goes to bed. It is great that her grandparents love her and protect her. The other day when I was home with her and I was taking her over there for her to go to sleep, she said "I'm home" when we walked in the door.

Please continue to pray.

Charles

Saturday, January 8, 2005 9:37 PM CST

Caroline has had her ups and downs today. Through last night, every couple of hours or so Caroline was waking up and throwing up. She has been throwing up a bit of blood that is coming from the mucusitis that is in her mouth and her throat. She has thrown up more blood today, but they say that it is not a major issue at this time. Dr. Chiang came by this morning and ordered a change in her pain medicine. We took her off of the morphine, due to the itching that it causes. She is now taking fentinel to control her pain. It is on the pump that did have the morphine and Caroline has a button to push when she is feeling any pain in her stomach or throat. She has had her pump with adovan and benedryl increased to hopefully help out. She has had a fever off and on today. We are not sure what the reason has been. Her blood cultures are still showing no infection and she continues on her antibiotics. Hopefully she will make it through the night without throwing up too much.

We would like to thank Steve and Lori Seaton for bringing us lunch today. They were so thoughtful and the steak lunch was wonderful. Caroline's Kindergarten teacher, Ms. Sewell came over this afternoon and brought some cards and a poster that her class had made. It was nice to have Sharon Sewell come over with Pam. They visited for a while and told us that Kallie came with them but refuses to come in a hospital. In case you don't know, Ms. Sewell's daughter, Kallie, has had a cancer, Wilm's Tumors and went through some serious times about 6 years ago. The Lord has blessed us with a teacher who has the understanding of what we are going through and loves Caroline. Also we had my parents visit us this afternoon and brought us a new supply of Cokes. Dad said he would keep us supplied, and we were about to run out.

Please continue to pray for us and also pray for all of the others who are facing this type of journey. Ryan is on his third day of high dose chemo and will get his 2nd transplant next Thursday.

Charles

Friday, January 7, 2005 10:58 PM CST

Caroline had an OK day today. She woke up this morning feeling very nauseous and she got a late start in doing her jobs. They have added a new pump to her pole. It is a pump with adavan and benedryl for her to hit when she feels nauseous. It gives her a bolus each time she hits it. This gives her two pumps, this one and the one with morphine for her pain from the mucuscitis. She did feel well enough to play with play-dough tonight. The heating system was fixed at about 2 or 3 in the morning. Nancy said that she had on thermal underwear, a thick jumpsuit, and one of my sweatshirts on to protect her from the cold. Caroline slept with her house coat on and they all had extra blankets. Please continue to pray that Caroline's itching and feeling sick will start getting better. I'll write more tomorrow night.

Charles

Thursday, January 6, 2005 9:43 PM CST

Check out the pictures on the photo album pages. I uploaded a couple of pictures from the transplant procedure on Wednesday. The first picture is the stem cells after they had been thawed and drawn up in a syringe. The second picture is one of Caroline receiving her transplant. It took all of about 2 minutes. I thought you would all like to see what the Transplant is like. So many people have asked about the procedure.

Today Caroline had an OK day. She started off this morning being nauseous and throwing up a little blood a couple of times. The blood is from her Mucusitis that has made sores in her mouth and her esophogus. It scared us at first, but after we found out this is kind of common, we were relieved. Her nausea seems to be based on her movement, as the chemo has been moved out of her system. Nausea is also a side effect of the transplant procedure.
She is doing her jobs and one of the most important is the cleaning of her mouth four times a day. This afternoon, Katherine came over to see Caroline. Things did not go to well as Caroline was very tired and the reunion didn't last as long and go as well as hoped. They did communicate through the glass at the playroom and Caroline did show Katherine the pictures that she had drawn over the last few days. Katherine and I came home the evening so that I could go to work tomorrow. When I got home, some of the members of our Sunday School class were here painting and finishing up some work. They informed me that there was a rumor that Caroline had been in intensive care for a couple of days. Let me assure you that Caroline has not been in ICU during this stay. She did have 3 days in ICU when she was in the hospital in November. Hopefully she will not have to visit the ICU. She still is on morphine and also her blood cultures over the last few days are still negative. This means that the antibiotics are doing their job with the staff infection.

Thanks to Mary Sellers tonight. She came over to the hospital to stay with Nancy tonight to help her with Caroline. It takes two people to stay with her. She volunteered and also brought Katherine over with her tonight. Pray for them tonight, the steam generator that provides heating and also hot water went out at the hospital this evening. Caroline did not get a bath tonight and Nancy said that it was extremely cold in the room with no heat. Both her and Mary were wearing sweatshirts. She told me on the phone that I better be happy that I came home. Dan Calhoun, who is a nurse on the 4th floor and friend, came by and told Nancy that it was out all over the hospital and that it should be back up by the morning.

Continue to pray,

Charles

Wednesday, January 5, 2005 10:01 PM CST

Transplant went very well this morning. It was a very fast procedure taking only about 2 minutes to complete. The Nurse Practioner Ellen had the stem cells in a syringe and injected them into her line. She had a smell coming from her that was from the preservative that the cells were frozen with and we all agreed that it smelled like sweet cream corn. It also could have been because it was close to lunch time when we noticed the smell. She did well for the rest of the day, with little problems. Her blood cultures have been negative for the last couple of days, which means that the anti-biotics are doing their job. She will probably stay on the drugs till she leaves the hospital. She got a little emotional in the early afternoon. She wanted her sister, Katherine, to be there. We explained that she was starting back to school today and could not be here. She didn't care and sobbed and moaned for a long time. We finally got her to do some of her laps (4) and when she came back in the room she settled down and fell asleep. She has been drawing a lot today and drew my mom a picture, Katherine several pictures, and even me one. She is following in her big sister's footsteps in becoming a good little artist. She did almost all of her jobs today and finished up her sticker chart this evening after her bath. She got a big prize for this. We started tonight with a new lotion to put on her this evening. It is called Aquaphor, and is very thick and after we finished putting it on her, she resembled a greased pig. Day 0 overall was successful. She starts day 1 tomorrow.

I hope your day goes well for you and remember to continue to pray for us.

Charles

Tuesday, January 4, 2005 9:13 PM CST

Caroline had a little better day today than she has had in the last few. Today was a day of rest (sort of) where she had no chemo and is getting ready for her stem cell transplant at 11 am tomorrow morning. Infectious Disease and our doctors told us that her staff infection was caused by central line and that it was responding well to the antibiotics that she is on. They said that it should clear up and there would be no need for a new line. She has been itching due to the antibiotics that she is on and also from the morphine pump she now has. Her mouth still looks bad and now the sores in her mouth have spread down her throat to her stomach. She has complained of pain around her throat and that is why they installed the morhphine pump. She did become more active when Katherine and I arrived around noon today. She got up and went to the BMT playroom and Katherine was in the regular playroom and they sort of communicated thru the glass. Later, Caroline drew some pictures for Katherine and when we went for a few laps around the nurse's station, she handed them off to Katherine. When Caroline is doing her laps, Katherine has to be in the family room and can wave and communicate from there. Caroline did a lot of coloring tonight and did pictures of Spongebob and Patrick and also the Powerpuff Girls (apparently Katherine, Amber, and her are different ones). She still has been throwing up throughout the day and has been getting boluses of adavan when she needs it and is getting Benedryl to help with the itching. Tomorrow when she gets the transplant, we have been told that we will need something in our mouths due to the smell that will fill the room. It is the agent that is in with the stem cells that gives off a strong odor that will fill the room. They said the whole process will last about 15 minutes (only 2 to put them in). They said that the odor has a strong garlic smell and can make us sick if we don't have something in our mouths. Caroline gets to have a Jolly Rancher and has chosen Green Apple. Please pray for us as tomorrow is Day 0 and we start counting each day beyond in positive numbers (such as Friday will be Day 2).

Some have inquired about my health (as have the doctors here). I did get to see Dr. Parrish this morning and he says that I have laryngitis. He said that it started out in my head as a viral thing but has become a sinus infection and spread down to my larnyx. I have been put on a new high power anti-biotic for 5 days and also been given one of the strongest cough medicines. He told me that when I take the cough medicine that I need to be somewhere that I don't intend on leaving, because it will knock me out. He also gave me Singulair to take at night to help with my allegies. The doctors here said that since this was a chronic case and that I have been around Caroline already, they feel that I pose no threat to her. So I can stay.

Please remember Katherine tomorrow as she starts back to school. She is doing so well and is adjusting well to the situation. She is growing up into a beautiful young lady.

Charles

Monday, January 3, 2005 10:04 PM CST

Another rough day for Caroline. I talked with Nancy tonight (actually, i've talked with her several times today)and she said that Caroline is beet red. This is one of the side effects of Thiotepa that she received Wed. thru Friday of last week. She has been throwing up several times today, has had diarhea, and has had a fever off and on. The doctors believe that the staff infection may have been caused from her central line. It is possible that they may have to remove the line and insert a new or temporary line. They are allowing the blood culture to continue to grow the infection and will have a better answer by tomorrow. The Physician's Assistant came by and looked at her mouth today. She asked Nancy if she has complained much about her mouth. Nancy told her that she hasn't complained. The PA said that she is surprised because she said her mouth looked awful and it should be hurting. My mother stayed with Nancy last night and today till Nancy's mom came. I came home to get a handle on my cough and hopefully see my doctor. Dr. Parrish was not in today and I have an 8:15 appointment in the morning. I did go by and see my pharmacist, Brandall Lovvorn, and he game me the most awful tasting cough medicine. However the taste, it has controlled the coughing and this evening I have been feeling a log better. I still do not have much of my voice back. Katherine and stayed together last night and she played with some of her friends this morning. This afternoon, Katherine and I went to the Vet's office and got a chance to pet our Cat, Mitzi. Katherine said that she was really missing her and the Vet's office said that we could come by anytime and they would allow us to see Mitzi all we wanted. The Vet's office has a warning sticker on her cage. They said that each time they open her cage, she likes to bolt for the door. They said that she has been so sweet. Katherine went over to her friend's (Allie) house this evening while some of the Sunday school class came over to help pack up the house. They are going to start painting this weekend and will pull out the carpet to get ready for the new flooring. Katherine called this evening and asked if she could spend the night, and I said yes. So I am home all alone tonight as I write this.

Something interesting about Caroline today. She was brought several gifts from a church in Alabama that Suzie Jackson goes to. Their youth group brought these for Caroline, Katherine, and even fixed a basket for Nancy and Me. When Alice brought these gifts, Caroline decided that she wanted to unwrap the presents. Nancy said that she would open a present then throw up. She then would ask for another and open a few, then throw up again. They asked if she wanted to wait and she said that she wanted to open her gifts. Nancy also told me that tonight as she was changing her diaper (due to posibility of urinating and diarhea) she was putting cream on her rear and was being rather thorough. Caroline said in a very stern voice to her mother, "Will you just go ahead and put my diaper on!" Another time Caroline was being changed and did not have a diaper on. She asked Nancy all of a sudden, "What would happen if I pee'd right now?" Even in these times of struggle, she is an independent little thing.

Sunday, January 2, 2005 11:40 PM CST

I hope that you had a great Sunday. Things for us have been a little harried. Caroline has developed a staff infection and been placed on 2 new broad spectrum antibiotics to try to get control of this infection. She has been running a temperature off and on all day today. She has not been very active and has been asleep for most of the day. Each time that she awakes, she usually get sick and throws up. She has been kept on anti-nausea drugs around the clock and when she gets sick. This is one reason she has not been too active today. Katherine came with Alice this afternoon to see us and to see Caroline. Due to Caroline's condition, Katherine did not get to see Caroline (except when we held the door open in our room and the double doors open in the hallway. We tried to get Caroline to wave, but we had to wave her hand for her. I came home tonight with Katherine and will stay here in Bremen till Tuesday morning. I am going to try to get in to see Dr. Parrish tomorrow. My cough is sounding worse and I am tired of coughing my head off. Each new nurse keeps asking me about my cough and I even had a conversation with one of the doctors today about the cough. The doctor told me that it was probably viral and that I was not a threat to Caroline. My mother came up this afternoon and is staying with Nancy and Caroline tonight and then Alice is going up tomorrow afternoon and will spend Monday night with them. I will take Katherine back to the hospital on Tuesday, and maybe she will be able to see Caroline then. Katherine has to start back to school on Wednesday. I am coming home again on Friday to go to a special training that morning and then meet with my staff on that afternoon. Carroll county's students don't return until Monday Jan. 10.

Well pray for us as we continue to make this difficult journey and pray that they will figure out tomorrow exactly which antibiotic will be the best to stop the staff infection tomorrow.

Charles

Saturday, January 1, 2005 7:33 PM CST

I hope that your new year has started off well for you and your families. Things here have not been that fun since I last updated you on Thursday night. Caroline has been very nauseous for the last two days and today has started running a temperature. We had an accident last night, while trying to get her up for her 11 pm bath and my foot was on one of her lines running to the central line and she pulled away real hard. She broke the last stitch holding the line in place on her chest and all that was holding the line were the stitches inside her chest. A surgical resident came by this morning and restitched the anchor back to her chest. They gave her some medicine to put her to sleep. She didn't fall asleep till a little later, so she experienced the stitching. Nancy and I held her arms so that the surgeon could stitch. Later on, we asked her if she remembered getting the stitches and she said no. My mom and dad came by and brought us lunch today, Chinese. It was good and they stayed the most of the afternoon. Dad and I got interested in something on the Discovery Channel and they left around 6:30. I had to call Dad and tell him how the last episode turned out. They were running a marathon of American Hot Rod shows.

Nancy and I are holding up well. Katherine has spent the last few days with Nancy's mother and dad. She still sounds well and hopefully will get to come up and see us tomorrow with Alice. Katherine will not be able to come into direct contact with Caroline, but they will be able to see each other between a glass wall separating the BMT playroom and the regular playroom. Caroline has said several times that she misses Karin (her name for Katherine).

Please remember Ryan this next week as he returns to complete his second transplant. I believe that he comes back on Wednesday, which is the same day that Caroline will get her transplant.

Please keep us all in your prayers.

Charles

Thursday, December 30, 2004 9:03 PM CST

Well it Thursday night and things have gone pretty well today. Caroline is doing her jobs very well and we finally got her doing the mouth cleaning finally by the end of the day. Each time she completes one of her jobs, she gets a sticker and she has a chart to put them on. For every few stickers, she gets a prize. So far, she has collected two prizes. Her jobs are walking 10 laps around the nurses station (completed by the end of the day), breathing exercises 4 times a day, mouth care 4 times a day, a bath 4 times a day (through Sunday then once a day), being weighed twice a day, being checked by the doctors once a day, and some others that I can't think of at this time of night. We had a talk with the child life specialist today about not letting her drag out doing some of the procedures. Life can be so much fun. She had visitors today in her Nanna and Papa (my Mom and Dad). They brought lunch in the form of Fried Chicken. We said this should take care of food for today, because a group called CURE always brings supper on Thursday evenings. So we knew we wouldn't have to worry about hospital food today. Guess what they brought for supper? FRIED CHICKEN. We ate that again. Please don't bring chicken in the next few days. Caroline has not been sick at her stomach yet. She has complained about her stomach hurting a couple of times and she has started her TPN (IV Feeds) tonight. She starts her second chemo tomorrow morning at 6 am. She will start on Cytoxin and this will probably make her sick. They will up her fluid intake to prepare for this drug. It can cause bleeding in the bladder and they will give her a rescue drug called Mesna every 3 hours to protect the bladder. Tomorrow is also the last day that she will get Thiotepa.
She is doing good and we hope that she continues with her progress in the next few days. When I left the room to come write this, she had just fallen asleep and she has 1 more bath at 11 pm.

Please pray for Nancy's father, Tearl Fincher. His platelet count has been going down lately and his oncologists have ordered bone marrow biopsy for a week from tomorrow to see what the problem is. We are hoping that his cancer is not acting up again. So please pray for him during this period. Nancy is doing well and Katherine has been staying with her grandparent, Tearl and Alice. She has had her cousin, Amber, stay with her while she is there. Alice said that they played so hard today and I think that this keeps her mind off of us being gone.

Well it is time to go back upstairs. Keep praying and having faith. Happy New Years.

Charles

Wednesday, December 29, 2004 8:11 PM CST

We are here and she has finished the first infusion of Thiotepa. Caroline has to have 4 baths a day and we are slowly trying to remove the tape around her NG tube and are going to remove it. The feeding tube in her is fine, but the tape on her face will hold on to the chemo and could cause skin problems. This is not a fun thing to do. She has not been sick so far (only 4 or 5 hours into this).

The room is huge (compared to all of the other hospital rooms we've been in) and we have tons of storage. We got here around noon and she had to wait till the results of her Snot test came back around 4. At 4 the doctors said they heard strange sound from the bottom of her lungs, so they ordered an x-ray to see if there had been any change from the ones done 2 weeks ago. They determined that her lungs had been pushed up due to the tumor and had not fully regained their shape and that was the reason for the strange sounds. They had to make sure there was no chance for any problems breathing. Once they finished making sure there would be no problems, they started her chemo between 6 and 7. We are still settling in and hope that things will continue to go well. Keep on praying. Also, please pray that the hospital food will get a little better. I don't think I can afford to go out and get take-out every night for a month. If you are coming this way, bring something to eat (just kidding).

We'll update tomorrow.

Charles

Tuesday, December 28, 2004 11:21 PM CST

Well it is around midnight before we go in the hospital as I write this. Caroline went in to see the doctor today and we signed the consents for the transplant. We had a scare concerning the insurance. When we got there, Tara told us that State Merit had not yet approved us for the transplant. It seems that there is an approval board that examines each case to determine if they will pay. The panel split with one doctor approving it and another not approving it. When this happens, it goes to a third doctor to make the decision. Tara said that our transplant case manager told her that they would ultimately approve this because there is a law that says that the insurance company must follow the national cancer guidelines and that it was a bunch of red tape. She told us that we would know something before the end of the day. She said at the worst, they would delay going in for up to a week. While we were there, the doctor ordered a Snot test. Caroline has still been coughing and having a runny nose, so a respitory therapist came in and sucked some snot out of her nose (sounds fun?). They are running tests tonight and if there is any viral infection, then we will have to wait till that is taken care of first. They think that there is little chance, but they want to be sure. Coming home, we stopped at the mall, so Nancy and I could spend some gift cards to buy some things we might need in the hospital. Needless to say, Katherine and Caroline both got some things that they wanted also. When we got home, there was a message from Tara saying that insurance had approved the procedure and instead of checking in at 8 in the morning, we have to be there at Noon. We have been packing all night and Nancy's mom and dad came over to help empty out another of the girl's closets to get ready for the renovation while we are away. So much to do, but so little time. The girls have been cramming in as much playing as possible. It is going to be hard on them being separated for so long. Please pray for both of them. Also pray for Mom and Dad, we are very edgy.

Please read Derek's page as it has been updated. Naomi is asking for help with funeral expenses. It seems that there was an unexpected charge for a burial plot and they need help in paying for that. It is hard for someone in our situation to ask for help, so I will ask for her. Her address is listed on her page and is also listed at the top of this page. You don't have to send a lot, just something. We will try do send some money later on after I get some of our bills situated. You know us educators get paid only once a month. I thank you for the support you have shown us and also them. It mentions on their site that the money that we and others sent for their children for Christmas helped them so much. It makes me feel good and hope it does you too.

This is the last update I will do from home. I will update as I am able at the hospital in the next few weeks. If I am not able to update every day, please be patient.

May God bless each of you as he does us.

Charles, Nancy, Katherine, and Caroline

Monday, December 27, 2004 10:20 PM CST

We have one day left before we go in the hospital. Tomorrow should be a busy one as we finish getting ready to go in on Wednesday morning and we also have to go to the hospital at 12:45 to do lab work and sign consents. We'll only be there for about an hour or so. Today we have been busy getting the Christmas decorations down and packing up the house. While we are gone, our Sunday School class is going to come in and clean and paint some of the rooms. They are also going to pull out the old carpet in the front of the house so new carpet can be laid down. The carpet people are coming in on Jan. 17. We ordered a PODS Unit (Portable On Demand Storage). They brought it out to the house and while we are gone, all of our furniture will be placed in it. We want to make sure that the house is as clean as possible when Carolne comes home. My mom and dad came over to help pack things up today as well as Nancy's mom and dad. We really appreciated their help. We took the girls for one last trip out tonight. We took them to Chuck E Cheese. That place knows how to take your money with all of the games. But the important thing was that the girls had a good time.

I will post one last update from home tomorrow night and then the rest will be from the hospital. Please continue to pray for us. We plan on moving Katherine's things over to her grandparents' house (Alice and Tearl) tomorrow evening. Please pray for her for the next month. It is going to be a long month.

Charles

Sunday, December 26, 2004 10:35 PM CST

Well we hope you and yours had a very merry Christmas. The girls had a great Christmas and got more stuff than you can shake a stick at. Caroline got a little electric race car that she can drive very fast down the street. It gets up to about 10 to 12 mph. She loves driving it and we are really burning rubber. She likes to get going in a circle and then spin out by hitting the brakes. She got several other things like a color pixter that she asked for and a couple of video games and several other toys. Katherine got a couple of high powered telescopes and also got several games (video and board). She got more clothes this year, and she said she would have rather had toys. She is at an awkward age, when she is getting older and wants toys, but needs clothes. Nancy got some nice things such as clothes, jewelry, perfume and various other items.

We are getting ready for Wednesday. Caroline will have 6 days of high dose chemo and then will have a day of rest before she gets her stem cell transplant on Jan. 5. For the first few days Caroline will have to have 4 baths a day, due to fact that the chemo will be coming out of her skin. We figure to be at the hospital for about 4 weeks. If things go well, it could always be shorter. Please pray for us that we have patience with each other and that Caroline will make it through ok.

Well gotta go.

Charles

Friday, December 24, 2004 10:05 PM CST

Well I hope that you are having a wonderful Christmas. As I sit to write this, Katherine and Caroline have gone to bed and are awaiting Santa. They were very excited and had a great visit with their grandparents, aunts, uncles, and cousins last night and this morning. We had my family's Christmas at Brooks this morning and came home around 5 this afternoon. The girls got a lot of things. Caroline and I went over to see her other grandmother, Alice, this evening to get some salsa. She wanted some to eat and we had none at home. She and I had an interesting conversation. We spent the time driving back across town looking on rooftops for Santa. She told me that I had to watch on my side of the road and she would watch her side. Each time we passed a house, she would say "No reindeer there." When I stopped saying anything about rooftops, she told me that I was not doing my part of the job. She told me what she knew that Santa was bringing her and the other things that she hoped for. Katherine and Nancy got the cookies and a coke ready for Santa. Caroline said that we needed to leave a note and apologize to Santa for not having any carrots for the reindeer. I told her that he would understand. It is exciting to be home for Christmas. We are not talking about the next week around here. We have agreed that we won't talk about going to the hospital till after Christmas is over. Katherine is already feeling a little blue knowing that we will be gone for a while with Caroline. I feel that it is going to be the hardest on her. She is going to feel very alone in the coming weeks. Pray for her.

Well i've got to go finish wrapping some presents, so let me wish each one of you a Merry Christmas. May God grant you peace and maybe he'll bring us a miracle.

Charles, Nancy, Katherine and Caroline
Christmas Eve, 2004

Wednesday, December 22, 2004 9:23 PM CST

Well only a couple of shopping days left before Christmas. Things are going well here. We got a Dentist appointment at noon today and everything looked fine with her teeth. She said that there was nothing that looked like it would allow for any infection to set in. She also said that 2 of Caroline's 6 year molars have already come in and the other 2 are coming in. Caroline was scared that they might have to do something and she cried all the way to Carrollton. After the Dentist said everything was fine, she perked right up and both she and Katherine hit the treasure box. They both got rubber vampire teeth and acted like vampires all the way home.

Nancy got to finish up her shopping today with her mother. She mainly went after things for me, as we had already finished up for everyone else on Saturday. She also enjoyed getting out of the house and being without the girls for a little while. The girls and I took it easy around the house this afternoon. I wrapped a few presents to make myself useful.

Tomorrow we go to my parents' house for our get together with my mother's family, the Waddells. We will spend the night at Mom and Dad's house and then my sisters and their families will come over on Christmas eve to have the Johnson family Christmas. Our family Christmas will be on Christmas morning and then Nancy's family will get together on Christmas night. It is going to be a hectic few days. Pray that we make it and survive. I probably will not update tomorrow night.

We want to wish you all a Merry Christmas and remember that Jesus is the reason for the season.

Charles

Wednesday, December 22, 2004 0:07 AM CST

I apologize for not updating the page yesterday. We have had problems accessing the caringbridge site. Things are going well for us at the Johnson household. On Monday, the girls went shopping for Christmas with their grandmother. She took them to the mall and she said it was quite an experience, but that both of them did well. Today the girls played around the house and Caroline got a big package from one of her Chemo Angels in Missouri. She got several nice presents in it. Tonight, the girls have a couple of their cousins over for a sleep over. It has been quite an experience in itself. They are asleep now and the house is quiet. We got news today from the transplant specialist that Caroline has to have her teeth checked before the transplant procedure next week. We found out too late to call our dentist, but we will do that in the morning. She cannot have any cavities, and if she does, she has to have them at least temporarily filled. They said they forgot to tell us last week.

I hope that you are having a happy holiday time and Merry Christmas. Remember you have only 3 shopping days left before Christmas.

Charles

Sunday, December 19, 2004 8:35 PM CST

I'm sorry for not updating the page for a couple of days. Things around here have been a little hectic with the end of school and going shopping. Caroline is still trying to get over her cough (as am I). She had a great time at school on Friday with her Christmas party. The school nurse went in and checked each child's temperature and also looked at their throat. She wanted to make sure that there was no one there who might have any sickness. Everyone was fine. One of the mothers in the classroom bought the yellow Lance Armstrong bracelets from Build-a-bear and gave it to each child in the classroom. She said that she was doing that in honor of Caroline. One of the boys in the class said that he didn't need to wear it because he was not sick like Caroline. He wasn't being mean, in fact before he left he came and gave Caroline a big hug.

The girls got their new beds in on Saturday. They love them and are trying to get used to sleeping in the same room in beds (they have been in the living room since August). They are playing in their rooms, which is something they haven't wanted to do in a while. We ordered new carpet for the house on Saturday. They will put it in while we are away from the house. Our Sunday School class is going to do some work to make sure the house is as clean as possible. We want this done so that Caroline's living environment can be as clean as possible. We have such great friends and they are having a planning meeting on Wednesday night.

Hopefully you have read some of the comments from Naomi on Derek's page and on the sign in of this page. She mentions me, but it really was all of us who did the helping of her family. It has really helped me and Nancy to work to help someone else in need. Please don't forget them at this time. If you can afford to send them a little something to help with the funeral expenses, the address is at the top of this page.

Merry Christmas from the Johnsons

Charles

Thursday, December 16, 2004 10:24 PM CST

Well I hope that you have had a good day. Caroline has done well today. She got up very early this morning at 6 am and stayed awake for almost the whole day (cat nap at 6:15 tonight). She and Katherine took us to Walmart to do the annual shopping for the teachers. We let them pick out a gift for their teachers and then they came home to wrap them up. I am glad that they think of their teachers in this way. Teachers are very important people and I can only think that the Principal is more important (a joke).

I sent a nice wreath to the funeral home for Derek Tester. I called the funeral home this morning and they put me in touch with a nice florist there in Hickory, NC. I wish that I could go to the funeral tomorrow, but as it is the last day of school before Christmas, I need to be in the building. I thought about getting a buddy pass from my sister and fly up. But I and many others will be there in spirit. I received a nice email this morning from Naomi and she really appreciates the concern that we have shown her. She told me that she was worried about providing for her other children for Christmas and prayed that God would provide. She said that the money that we are sending is an answer to her prayers. If you can afford to send a little something extra to help out with the funeral expenses, the address is at the top of the page. I am not sure how many people are doing this, but anything can help. She said that she was going to spend the check on the kids first and if anything was left she would apply it to the funeral costs. Just lift her up in prayer tomorrow.

Merry Christmas

Charles

Wednesday, December 15, 2004 10:07 PM CST

Well we got some sad news today. Our friends in North Carolina lost their battle with Neuroblastoma. Derek passed away at around 2:30. This really is something that the family is welcoming. It has been a long struggle and he has finally made his way to heaven. Please pray for Naomi and her family in this time of struggle. Their site has the arrangements for his funeral. I have emailed Naomi and have asked if they are wanted flowers or donations made in Derek's name. I will post that information when I receive it. I do plan on sending a large wreath with the words "From his Georgia Family" on it.

Caroline had a fairly good day today. She was very clingy to Mom this morning and did a lot of wanting her daddy. Nancy told me that she cried for a long time wanting me to come home. When she told her that I couldn't come home, Caroline said that she couldn't help wanting me and Nancy told her that Daddy couldn't help it that he had to work. Her teacher, Mrs. Sewell, came by and worked with her today. She brought material to make gingerbread houses with. She brought enough that Katherine got to make one also. Mrs. Sewell is a wonderful teacher and has been so helpful in letting us know whether it is safe to bring her to school or not. We are hoping that she will get to go to school on Friday for a short while for the Christmas party. Mrs. Sewell is to let Nancy know that morning whether there are sick children there or not.

Again pray for the Yandle family.

Charles

Tuesday, December 14, 2004 9:56 PM CST

Well today was a pretty uneventful day around the Johnson household. Caroline is staying at home due to sickness in her classroom. Her doctor and her teacher feel that it is best for Caroline to not be exposed to the Fifth Disease. Another student was sent home today with that fool hardy virus. I remember back in the 70's, I developed that and actually had to go to see some specialist and even the CDC was contacted. Ms. Sewell is planning on visiting with Caroline tomorrow and will bring her some work from school. If things go well, she may get to go to the party at school on Friday (pending no one is sick that day).

Well I went to the doctor this afternoon and got a nice shot. As Caroline is getting prepared, so must I. I have had a nagging cough lately and even ran a slight temperature on Sunday. Doctor Parrish gave me a high powered antibiotic and some cough medicine to quieten me down at night (so Nancy won't either kill me or divorce me). I also found out that I am getting fatter. I went over the 200 pound mark for the first time when I was weighed. I asked the nurse if she would let me weigh again naked so I could be under 200. There is about to be a weight loss in my future. I now weigh more than my father and he always said that my mother would leave him if he got over 200 (hope Nancy doesn't get any wild ideas).

Well we did a good job in raising money for Derek and his family. I am mailing a check in the morning for $1400. I want to say thank you in helping me raise this money for them. It is so nice to do something to help someone else out. The Lord continues to bless us and I wanted to do something to help bless them out. I also got word that a small church in Alabama has raised some additional money and will be sending them a nice sized check also. They called me tonight to get the address. We had most of the donors from around here, but we also had some from Florida and New Jersey. I don't want to mention names because I am scared that I might miss someone's name. They have a new picture of Derek up on his site and Naomi updated her comments today.

I hope you touch someone's life today.

Charles

Monday, December 13, 2004 9:29 PM CST

Today was a very long day. We left the house at about 6:40 this morning and made it to the hospital by about 8:30. When we got there, we started off running and were busy all day long with different tests and didn't finish till after 3 this afternoon. We started with a test on Caroline's kidneys and they injected a radioactive iodine and they had to draw blood 7 times, 3 there after being injected and then four more draws each an hour apart. We had labs drawn, she had an audilogical test done. The audiology tests showed that she has lost some of her high frequency hearing in her left side. It is not severe enough that she will require a hearing aide. This is something that can occur from some of the chemo's that she has taken previously. She had a pulmonary test and an echo done on her heart. We met with the child life specialist, a financial counselor, and a social worker. We also met with Dr. Chiang, who is now our Oncologist till we finish with the transplants. After we finished with the activities at Egleston, we then went for our post-op with Dr. Ricketts. He was very impressed with Caroline. She never knew that he looked at her, as she had fallen asleep from her active day. The purpose of today was as a pre-transplant evaluation. The results from today will be sent to our insurance company for them to make the final approval for the transplant. Before they pay, they must feel that the money spent will be worth it. We also found out today that we will get an additional day at home before we check in. The clinic will be closed on Monday the 27th, so now we sign consents on Tuesday the 28th and check in for high dose chemo on Wed. the 29th. Transplant will take place on Wednesday, Jan. 5. We were told the different chemo drugs that will be used in both the first and second transplant procedures.

We got a chance to talk with Ryan's mom, Missy, this afternoon. They got some good news today that his white counts are coming up and they may get to leave the hospital by Thursday. They will have to stay at a hotel for a few days that is nearby. The Residence Inn by Marriott is the hotel that the hospital feels meets the cleanliness standards. That will be the place we will probably have to stay after we get out the hospital too. We dropped off a gift for Ryan and wished them luck. Please continue to pray for them. Things are looking good at this point.

I am sending money for Derek tomorrow. I have received over $1000, not including what I am going to contribute. Thanks so much for your concern for this family going through a hard time. Hopefully this will make a difference and help provide their family with some money to have as good a Christmas as possible. Continue to pray for him and he is at home.

Wishing you a Merry Christmas

Charles

Sunday, December 12, 2004 7:20 AM CST

I am sorry that I didn't write anything last night, but I was not feeling the best. In fact, I ran a fever in the middle of the night. I am trying to stay away from Caroline, but luckily her counts are up right now and she hopefully won't get anything from me. I feel good this morning, and it is probably the annual sinus infection getting to me.

Caroline had a pretty good day yesterday. She played around well, but still has this cough she can't seem to get rid of. We bought the girls new beds yesterday and they will be delivered at the end of the week. We are trying to move the girls back into their room to sleep. We are planning on putting the beds in the same room and then turn Katherine's room into more of a playroom. We have told Katherine that she only has to sleep in Caroline's room and that she can still go and hide in her room during the day. Since August, the girls have wanted to sleep in the same room together, but not on the same bed.

Well I will write more later.

PS
I have caught flack at home about my comment about calling Nancy "Old." I meant that with the most loving affection. As I have been reminded by some, I am older than she as I turned 40 in October.

Charles

Friday, December 10, 2004 9:57 PM CST

Caroline did very well today. She went to school on her own and stayed for the whole day. She was the leader this morning. At first she said that she wanted her mother to go with her, but I convinced (bribed) her that she could do this on her own. When she came home, she took a long nap to get rejuvinated. She will have a full week, next week. She goes to the hospital for tests on Monday and then she has a full slate of school activities for the rest of the week. The only thing bothering her now is a cough that is very persistent.

The Derek fund is getting up there. I am going to send a check on Tuesday afternoon. I was planning on mailing the money on Monday, but with us being at the hospital all day Monday, I thought this might give a little bit more time in case you would like to send a little money. I received over $300 in the mail today. I am now shooting for $1000.

Nancy turns 37 tomorrow. I thank God for putting her in my life and giving us two wonderful children. I think that she looks pretty good for an Old woman (I will be dead when she reads this).

Charles

Friday, December 10, 2004 5:09 AM CST

Nancy and I have added a new accomplishment to our credentials last night. We changed her dressing on her apheresis lines. I know that this doesn't sound like a lot, but this is the one thing every week that we have had a nurse come and do. Caroline always hates this and she screams and hollars to the top of her lungs (I know there is no deficiency there). We were trained when we first left the hospital, but there were orders written for the home health nurses to do this each week. When Caroline finished her Neupogen earlier this week, there was not a need to have a nurse come and draw blood anymore. So when they called Nancy the other day to say that they couldn't get out till Friday or Monday, she asked them if we could do it. They said fine and I think it went a lot smoother.

We talked with our Transplant coordinator yesterday, Tara. She has us scheduled for a full day of tests on Monday. We start at 8 that morning and have something going on till about 2:30. She even scheduled a thirty minute timeslot for lunch. She will have to have an IV put in her arm so they can do a test to see if there has been any damage to her kidneys. They will inject a radioactive iodine into her blood and then draw blood every hour for four hours. In between we will have other tests done and meet with couselors to get us ready and educated about the process. After we finish with this at the hospital, we then drive up Clairmont and have a post-op appointment with our Surgeon, Dr. Ricketts. So Monday will be one long day. I look forward to driving in rush hour traffic going and coming. We also found out that we will be going on Dec. 27 to sign consents and some final lab work done. She checks in the hospital the next morning at 8:00. So the day we shoot for now is Dec. 28 and the transplant will occur one week later on Jan. 4th.
So mark your calendars.

We are up to about $500 for Derek's family. Hopefully if you can, please send some money to help them out this Christmas. Even if it gets here later than Monday, I will still send the money to them.

Merry Christmas

Wednesday, December 8, 2004 10:34 PM CST

We finished up our scans today at Scottish Rite. She had the MIBG scan completed and according to the technician, she said that they look very good. She said comparing the ones that were done in August and the ones today, there was major improvement. She said that the doctors will look at these with the CT scans done yesterday to be more conclusive. We will go to Egleston next week to meet with the Doctors. At least that part is behind us for now.
Caroline's blood counts came back today and were excellent. Her white counts jumped from 0.48 to over 17, her platelets went from 11,000 to 177,000 and her ANC (ability to fight infection) went way up also. She now is able to go to school and not worry as much. She says that she wants to go back (with a little help from her mother). I believe that Nancy is planning on taking her to school on Friday. We will attempt to do the dressing change for her tomorrow ourselves. We were trained to do this when we started on this journey in July. We think we can do as good a job as the nurses that the home health company sends out each week. Please pray for us that we will do the right thing.

Please don't forget the Derek fund, just a few more days left. Send it to me or drop it off by Saturday. I would like to send at least $600. If you haven't checked out their site, Derek is in a coma now and they are moving him home. Check out their site and leave a message.

Pray for Ryan also. He is in ICU with an infection. He is in the middle of his transplant recovery now. He and their family could use the prayers.

Charles

Wednesday, December 8, 2004 5:08 AM CST

Sorry that I have not updated till this morning. We had a few problems with the internet last night.

Caroline went to the hospital yesterday for her CT scans. Things went fine and we were there from about 1:50 till about 5:30 in the afternoon. While we were there, she received the MIBG injection (radioactive iodine) for her scan this morning. We have to be back at 11 this morning for this. This scan is a soft tissue scan and is very interesting. The raw material for this is created on Saturday in a cyclotron in Canada. It is shipped down and you have to get the injection on Tuesday. The isotope has a half-life of 13 hours, so it will be out of the body within the week. What is interesting about this procedure is that there are two places in the body that will pick up the isotope, the thyroid and the active cancer cells. We have to take a potassium drug called SSKI to prevent the Thyroid from absorbing the idodine so it will be picked up by the cancer cells. The scan will make a picture (2 pictures really) that will show a two dimensional view of where the cells are and then also a three-dimensional view. We watch on a screen as the cells light up on her body like a christmas tree. We are hoping for an unlighted tree this time. Be in prayer that Caroline will be still for this, as it takes about an hour or so to complete.

Thanks for all of those who are sending money for Derek's family. I received about $130 in the mail yesterday. Remember I need the money by Saturday. Again, it is a blessing to help others out in their time of need.

Charles

Sunday, December 5, 2004 10:06 PM CST

Hope your day went well. Things are going well here at the Johnson house. Caroline is still doing good. She has a small bruise on the lower part of her back that she obtained by "bumping butts" with her sister last night. She has a low platelet count, so she is able to bruise easily right now. We told the girls to not do this bumping again. We are just in a holding mode right now. We are awaiting scans and then we'll hear what is next. Please pray that things will go well for her.

Continue to pray for Derek and for Ryan. There are some good pictures on Ryan's site that show what he is going through right now. Don't forget if you are going to send something for Derek's family, I need it by the end of the week. Please help me make this family feel special.

We spent the afternoon fixing Christmas cards. I know that we will not be able to send everyone a card, so I will put a copy of the card up after I get them mailed out in the next couple of days. We love each of you and thank you for all you have done for Caroline and for us as a family.

God bless each one of you.

Charles

Saturday, December 4, 2004 9:55 PM CST

Katherine had a great time at her birthday party today. We had about 10 kids at her party, ranging from friends to cousins. All of the kids got $20 to spend at "Build-a-Bear" and they all enjoyed themselves. They played games, crawled around on the floor, sang a little, did a lot of hollaring, and in general had a good time for a little over an hour. Caroline had a blast and she picked out a new bunny that she named Thumper. So it was a good day for both of the girls. We had a great hostess, who is the sister of one of the members of our Sunday school class. She took real good care of us. If you want to have a great party for a lot of girls, you can't beat what we did today.

Caroline is continuing with her Neupogen to increase her blood counts. She started taking some cough medicine today to try to help stop her coughing. She is not running a temperature, so our nurse said she should be OK.

Please continue to pray for Derek and for Ryan. Don't forget about the Derek project and send a little extra to help their family have a good Christmas. I received about $50 more today. I plan on sending the money on either on Saturday the 11th or Monday the 13th.

Charles

Friday, December 3, 2004 9:48 PM CST

Things are going well here at the Johnson household. Caroline is doing ok. Her blood counts are still low, but they should be coming up in the next few days. Caroline still has not returned to school. Her teacher feels that she should stay away at this time while there are so many students who have various sicknesses. We feel that once her counts get high enough, she might be able to return to school.

Katherine's birthday party is tomorrow. I hope that she will have a great party. She has several friends and cousins who are going and we will have the party at "Build-a-Bear." Each girl will get to pick out things and have a limit of $20.

Please be in prayer for both Ryan and Derek. If you have not checked out their sites, please do. Ryan is having a struggle with his recovery from his transplant. They had to put him on morphine and he has been running a temperature. Derek is still hanging on. If you get a chance, please help with the Derek fund. I would like for their family to have a little better Christmas. We so far have about $250. Any amount will help.

Charles

Wednesday, December 1, 2004 9:51 PM CST

Things are still going well for Caroline. She has a bit of a cough and her voice is a little weak. We hope that it is just a little congestion that will clear up soon. She has gotten a lot of her appetite back. Nancy said that she two whole pieces of pizza for lunch today and she has been grazing all day long. We are trying to fatten the little girl up.

We made a picture tonight so we could create our own Christmas cards. Hopefully I can get these done as quickly as possible. We will try to put it on the photo album page as soon as possible.

If you haven't checked Ryan's site today, he got his stem cell transplant this morning. Please pray for him that it will engraft and things will go well for him.

Don't forget about my Derek project.

Charles

Tuesday, November 30, 2004 9:28 PM CST

First I would like to announce the birth of Ariana Usher. She was born this afternoon to Jon and Ximena Usher. She weighs 8 lbs and 9 ounces. She was born around 4 pm. According to Jon, she is a cute little thing (kinda big). Jon was my roommate in college and we worked together at Temple High. Jon waited till he is about to turn 41 to have his first child. I had to take this opportunity to congratulate him.

Now for Caroline......

She had her blood drawn this morning and when the nurse told Nancy that she needed to change her dressing, Caroline pitched a huge fit. She hates having the dressing changed more than anything in the world. We talked with the nurse and she agreed to do it on Thursday, when she comes back to draw blood again. Her counts were down, especially her white count. It was down to 0.22 and her ANC, which tells us her ability to fight infection is down to 0. Her platelets were down to 16,000, which are low, but not so low that she needs a transfusion. She is still taking the Neupogen to raise her counts back up.

Tonight, Caroline got the chance to be in another parade. The city of Bremen held its small Christmas parade (only 2 floats) and she was asked by the Mayor to ride in the float with her. Caroline and I rode the float through downtown. The other float had Santa Claus and kids were more interested in seeing him than us for some reason. We bundled her up to make sure that she did not get too cold. She is starting to like the idea of wearing hats now. I guess that it has something to do with the cold.

Please don't forget my drive to raise money for Derek's family. If you can afford to send a few dollars to us, I am going to send it to their family to help out with Christmas. I know that they can use the money to help out with bills and also to help with buying gifts for Derek's siblings. I believe that we all can make a difference. The address to send to me is at the top of the page and please mark on the outside "For Derek." If you send a check, make it out to Charles Johnson, so I can get it cashed or you can make it out to Naomi Yandle if you would like to make it out to them. I am going to send a check to them after December 10th.

Charles

Monday, November 29, 2004 10:04 PM CST

Caroline had a good day today. No pain again for another day. She is still trying to regain her strength. We thought she might make it to the school today, but she was just too tired. Her new home health nurse is coming tomorrow to draw blood. Hopefully her counts are not too low.

Katherine got her goody boxes in today for her birthday party on Saturday. We are going to the mall for a "Build-a-Bear" party for her and some of her friends and cousins. We wanted to make this birthday special. She will be 11 years old on Thursday. She is also in a her school chorus Christmas concert on Thursday night. She has a speaking part and has to wear a colonial costume. I know that she will do wonderful.

I am still collecting for Christmas money for Derek's family. If you would like to send some money for this purpose, please send it to our house with "For Derek" on the outside of the envelope. I plan on sending it after the 10th of December. I would like for them to have a nice Christmas.

Charles

Sunday, November 28, 2004 9:50 PM CST

I hope that you have had a great Thanksgiving holiday. Ours was pretty good and I guess I am ready to get back to work tomorrow. During the month of Novemeber, I have only been at work for two days. Caroline is probably not going to school tomorrow, but may stop by for a visit with her mom. We don't want to rush things too fast. She is still getting tired and I don't think that she will last all day. She had her favorite cousin over today, Lance. He played with her after he got out of church and she even rode her bike for about 5 minutes while he was here. It is amazing how he just brings her to life. She glows while he is here. He is going to make a fine young man. I told my Sunday school class this morning that it is amazing how you can get excited about seeing your child poop. She went again this evening, and it means that her digestive system is starting to work again (of course a little MOM helps). We put up the Christmas tree this afternoon and started getting all of the decorations put up around the house. The girls enjoyed playing in the tree box for the new tree more than they did putting up the ornaments, Caroline especially. I've been thinking of just buying her a nice big box for Christmas. I don't think I could get away with it.

If you haven't checked Ryan's site out lately, it looks like he will be having his transplant on Wednesday. Things are going pretty good for them. Drop by his site and leave them a message. Also don't forget to drop by and leave Derek's family a message of encouragement. I am going to send them some money for Christmas soon. If you would like to send them some money or a gift and want me to send it with ours, send it to our mailing address 431 Georgia Ave N, Bremen GA 30110. Please make sure to mark it for Derek on the envelope. I will send it by the 10th.

Thanks to all who have given to help us out in this time in our lives. It is amazing to have so many who care about Caroline and for us.

Charles

Saturday, November 27, 2004 10:03 PM CST

Caroline has gone the last two days without any major pain. She did not have a stomach ache yesterday or today, except for being hungry. She has acted more and more like the old Caroline. Katherine and Caroline have been playing like they used to, with stuffed animals and imagining. They are even arguing more like the sisters they are. We took the girls to see the "Spongebob" movie. We let Katherine carry one her friends, Allie, and I went in with the girls to see the movie, while Nancy met up with her mother and shopped again today. She went yesterday and spent over 12 hours at the mall.

We are hoping that maybe Caroline will be able to go to school on Monday, if she feels well enough. Maybe she will get to attend these last 3 weeks before the Christmas holidays. I know that her friends at school have missed her and she has missed them.

Please remember our friends during their time of trials. Derek and his family in North Carolina are going through tough times and Ryan is still in his first week of the high dose chemo. He still has about 5 to 7 days left before the stem cell transplant.

Charles

Thursday, November 25, 2004 10:43 PM CST

Caroline has not been as sick today as she has been in the last few days. We had a pretty good day at my sister Terri's house in Fayette County today. Caroline loved being around her Papa and he held her on his shoulder for a long while after we first got there. He really has taken Caroline's condition hard and he is more emotional when it concerns her than I have ever seen him before. But anyway, we enjoyed ourselves and Caroline even went outside and played on the swings for a little while. She only complained of her stomach hurting once. We came home late this afternoon and we spent the evening over at the other grandparents house, Alice and Tearl's, and had our second helping of Turkey. Caroline was pretty tired, so she hung out on the sofa for a while. It seems that every day she is getting a little better. Continue to pray for her and us as a family.

Charles

Wednesday, November 24, 2004 10:15 PM CST

Caroline went to the clinic today. She was still complaining of a stomach ache and they ordered a few X-Rays. They saw no obstructions, but they said that there was a backup of poop. They prescribed a laxative to take daily and also prescribed Zantac daily and since she is having some mouth sores, magic mouthwash. We gave her the MOM (Milk of Magnesia) this afternoon and were rewarded tonight with a nice bowel movement. We were there at the clinic while all of the wild weather was moving through. So we were lucky to miss all of the excitement. Katherine called me while we were getting the X-rays to make sure that we were not on the road and then my mother called right behind her to find out where we were. While we were there at the clinic we met a couple from Jacksonville, Florida who were getting a second opinion on their child. It was kind of interesting that their 3 year old child was named Catherine and they had an 8 year old daughter named Caroline. They had a sister who works in Carrollton and lives in Temple. He is the Deputy Fire Chief for Duvall County and was saying he was going to see Gary Thomas (Carroll County's fire chief) to get him to show him around. They asked us what we thought of the clinic and we told them that they could come to no better place. What a small world we live in. Their child has been diagnosed with Neutropenia, which is a very low white blood count. Not only does the AFLAC clinic work with Cancer, it also works with blood disorders. Please pray for them in their time of need.

Ryan began his chemo today and they moved in over at Egleston. Please check out his website and leave them some notes or email them. They could use the encouragement.

We pray that you all have a safe and wonderful Thanksgiving. We will be traveling over to Fayette county tomorrow morning for Thanksgiving with my family and then coming back tomorrow evening for dinner with Nancy's family.

Charles

Tuesday, November 23, 2004 9:45 PM CST

Caroline had a better day today than she has had since surgery. She did not throw up today, even though she did feel nausea a time or two. She had her dressing changed by another new nurse from the home health group. We found out why we did not have our regular nurse coming back to us. She is leaving the home health group to go to work on the AFLAC clinic at Egleston. So I guess we will get to see Courtney over there. Caroline did well till it was time to do the dressing change. She put up a little struggle with us. She hates the pulling off of the tape and also the cleansing of the area around the line. She had been used to Courtney doing this, but for the last two times at home it has been someone new. We must get up and go to the doctor in the morning. Her appointment with Dr. George is at 9 am, so we must deal with rush hour traffic. We will probably leave around 7 in the morning, so please pray for us as we are on the road, and they say that the weather will be worse than it was this afternoon. Lance came by this evening to see her. She cheered up really good when he entered and called him Lancey. He seems to be able to perk her up sometimes, when no one else can. Lance is Nancy's 16 year old cousin, so he also a cousin to Caroline. When he is around, it is like he is the brother she has never had.

Please pray for Ryan as he enters the hospital tomorrow to start his journey with the high dose chemo to ready him for his stem cell transplant. We wish him and his family the best.

Happy Thanksgiving

Charles, Nancy, Katherine and Caroline

Monday, November 22, 2004 9:49 PM CST

Today has been a long day at the Johnson household. For most of the day, Caroline has been feeling pretty bad with stomach pains and nausea. She threw up about 3 or 4 times today. I was on the phones with Doctors and nurses for most of the morning. Our surgeon is out of town, so the surgeon on call talked with me late this morning and we decided that she should be put back on reglan and also that since she has not had a bowel movement on her own, we give her an enema. Let me tell you that getting her to let us do that was a job in itself. But we believe that when she did go to the bathroom, it did ease her pain a little bit more. She threw up one time tonight, but afterward she was the lively that she has been in the the last couple of days since she came home from the hospital. I had to make a deal with Caroline to let me give her the enema, I had to promise to get her a new video game. This child let me know later on that I had to order a game for her and she wanted it ordered tonight. She is one of a kind.

We have home health coming tomorrow to change her dressing and to draw blood. Please be in prayer for her, as she usually hates to have her dressing changed. It is a new nurse and it always is so trying for her. We also set up an appointment to see her Oncologist, Dr. George on Wednesday. They wanted to see her soon since she has been having so many problems.

I spent this evening helping to plan Katherine's birthday activities. We will do this on a week from this next Saturday (Dec. 4). I will tell you what we have planned later on, but Nancy and I determined that she needed something special since all of this has been going on with Caroline. Her birthday is on Dec. 2 and she will be 11. I still remember the day she was born and how Nancy was to go in to have labor induced at 9 that morning. She woke me up at 3 and off we went to the hospital. I was so nervous that I left the front door open and it was left open for 2 days till we got back home with her. She is a smart and precious girl. The Lord has blessed me with two beautiful daughters, of whom I am very proud of.

One last note.....if you get a chance to see Caroline in the next few days, take a look at her head. She is getting the most beautiful amount of peach fuzz on her head. Her hair is starting to grow back. I guess it is growing just in time to lose it when she goes back in for the stem cell transplant.

Charles

Sunday, November 21, 2004 9:07 PM CST

Caroline has had an ok day today. She has complained all day of her stomach hurting. We are hoping that this will get better. We've given her some anti-nausea medicine to make sure that she does not get sick and throw up. She slept good last night and we hope that she will continue to sleep well tonight. She has not been too active today. She has been on her little bed most of the day. She has eaten several things though. Her appetite is coming back. Just continue to pray that she will get better and back to the old Caroline.

I got a chance to thank the church this morning. Brother Herman's message today came from I Thessalonians and the verse said (paraphrasing) be joyful and thank God for everything. I told them that we know God has a plan and that we are thankful for everyday we get with Caroline. We don't know what he has in store for us, but that we must have faith. So let me tell each of you, thank you for all that you have done for our family.

I got the chance to speak with one of my best friends tonight, Jon Usher. He and his wife, Ximena, are expecting their first child, Ariana, this week. Jon waited till he was almost 41 before having a child. I wish them the best. Jon and I were roommates in college and worked together at Temple High for a short time. Jon now flies for Fed Ex. Jon said that they may deliver on Tuesday. Please pray for them.

Remember Derek and his family. We haven't heard anything in a week. Please remember to pray for them in this trying time.

Charles

Saturday, November 20, 2004 9:39 PM CST

We are finally home. We came home around 5 pm this afternoon. Caroline has done pretty well today, feeling a stomach ache here and there. Before we could come home, we had to start her on her feeding to make sure she could handle it. It is nice to be home and we have to go see both our surgeon and our oncologist in a couple of weeks. Caroline is not scheduled to return to the hospital till the 27th of December (tentative). We are having some problems with her feeding tube tonight. We should have addressed this while still in the hospital, but we didn't realize there was a problem with flushing the line till we had to do it tonight. Pray that this problem will be worked out, so that we won't have to have a new feeding tube put down her nose. She hates this and fights against us when we have it put down her.

Well i'll write more tomorrow night.

Charles

Friday, November 19, 2004 7:38 PM CST

Well it is Friday night and I write this in anticipation of going home in the morning. Caroline is finishing up her last round of chemo and will get the rescue drug Mesna at 1 am, 4 am, and 7 am. When she finishes this we should be ready to go. We still have to have the surgeon's approval, but I think that will be coming. Caroline's day today has not been real good. She had an enema this morning so she would finally have a bowel movement and her stomach has been hurting all day. We are not sure whether it is the bowels or the chemo that is making her sick. She had regular food last night. She ate about 4 bites of pizza and ate the noodles with chicken noodle soup. She is now on a regular diet. They put in her feeding tube this afternoon and we are supposed to begin our night feedings tonight, after the surgeon writes the order. We are hoping things keep going the way they are so we can go home in the morning. Nancy and Caroline have almost forgotten what home looks like. We begin the Neupogen tomorrow, to rebuild her white blood cells. She will take this for ten to fourteen days.

Katherine is glad we are coming home. She is tired of staying in places other than her house. She has done very well this last time. Please pray for her, especially when we come back after Christmas.

Thanks again for all of the prayers and gifts that have been given. We could not do this without you or God.

Charles

Wednesday, November 17, 2004 9:52 PM CST

Day #7 is now complete. Nancy and Caroline were there at Egleston for another day. Alice, Nancy's mom, came and stayed for the day with the girls, while I came to work. Caroline had the stomach tube removed from her nose today. They were going to put a new feeding tube in, but decided that since she was already on TPN (steak in a bag), they would leave it out for right now. Caroline went to a little more appetizing diet today. She was allowed to have ice cream and could have chicken noodle soup, as long as she did not eat the chicken. A decision was made today that instead of leaving this hospital and go to another to get chemo, she would start chemo tomorrow morning at Egleston. Dr. George, our oncologist from Scottish Rite, came over and visited Caroline in her room this evening. According to Nancy, he was very pleased with what he saw in Caroline. He said that she looked good and her abdomen looked a lot smaller. He is sending over his nurse practioner to start her chemo tomorrow. So things will still be under his direction. He also had a discussion about the stem cell transplant and when we can expect this to begin. According to the schedule we are on, we should begin the process the week of Christmas. He said that he thought it would be fine to delay things for one week and allow us to have Christmas at home and she would come in to start things on the Monday after Christmas. This will allow us to at least spend Christmas together as a family. Katherine already has asked if that means we all will go to all of the grandparents like we do every year. I guess we will have our own New Year's Eve party at the hospital. Nancy and Caroline had a visit from Ryan and his mother today. They were by the hospital signing consents for his transplant. They also got a nice long list of the treatments he will have and what will be going on. We wish him the best of luck next week as he begins this journey. Please pray for him and his family. He also has two older siblings who will not get to be with him for several weeks. Pray for their whole family.

Remember Derek also. He is still having a hard time and his family could also use your support. When you think you have a hard time with your children, just remember Derek's mom, Naomi. She is a trooper and ask that God continue to give her strength.

Till day # 8,

Charles

Tuesday, November 16, 2004 9:08 PM CST

Well we are through with day #6 and eagerly await #7. Caroline had her best day so far, since she has been at the hospital. She woke up this morning and was complaining of pain, but did not throw up today. She eventually got out of bed and we went down and saw a group of dogs that came to visit the hospital. The dogs are therapy dogs and Caroline had her picture made with a Corgi, named Anna. We saw several other dogs and she got to pet them and had a good time. We didn't realize that the dogs were there until our doctor, Dr. Ricketts, called us on the phone and said that as he was leaving to go to the office he noticed them there. He told us that would be an excellent excuse to get Caroline up out of bed and moving to help to get her bowels working. She had liquids today, mainly Sprite and chicken broth. She did not get sick with any of that.

I came home tonight so I can go to work tomorrow. I have been out for the last week and I need to make sure things are being handled at school. I have a great staff, but I feel I have a responsibility to make sure things are going good. Also I need to make sure that I have the school covered for the next two days, as we will probably not be out of the hospital?

Out doctors (surgeon and oncologist) supposedly have talked today about what is next with Caroline. She was scheduled to go back to Scottish Rite to start her last round of chemo before transplant this past Monday. They have said that they don't want to let too much time pass before she starts this two day cycle. It is possible that we may get out of one hospital to transfer to another. I leave that to the doctors to tell us what to do. I have faith that God will lead them to the right decision. I know that Dr. Ricketts has said that once she is on a regular diet, she will be ready to start chemo. Continue to pray for us.

Please remember all of the other children who are facing cancer. Especially remember Ryan and Derek. Ryan's family sent me an email that had a point I want to pass along to you, especially to those of you who have been concerned with Kallie Mae and Derek. Each child's experience with Cancer is different. Because one thing occurs with one child, it does not mean the same thing will happen with Caroline, or Ryan. We must have faith that God will lead us through these shadowy valleys to reach the mountain on the other side.

May God Bless you

Charles

Monday, November 15, 2004 7:58 PM CST

Well we are about to complete day #5. We started off today having an upper GI done. We started the process at about 10:00 this morning and and finally finished around 1:30 this afternoon. They were able to determine that there is nothing blocking her digestive system. She had not gotten sick today, until about an hour ago, when she was complaining of intense pain in her stomach. She threw up, and is now feeling great. The doctor came by this afternoon and discussed the results of the tests and he said that it is possible that when she had her surgery, that some of the Sympathetic nerves were removed with the tumor. This is the nervous system that is affected by the Neuroblastoma and they also control the bowels. He said that the natural action would come back. He started her on Reglan tonight and that is supposed to get her digestive system working from top to bottom. We were also happy to find out that she has been passing some gas today. Things are beginning to work. Now if she would have a bowel movement, we would be very happy.

Mike and Pat Ervin came up this afternoon to see us and Caroline. They brought her a stuffed tiger. They said that it was a Temple Tiger. Pat was my security monitor at Crossroads last year and is the receptionist at Temple High this year. I taught all of their children in school. They were also nice enough to go and get us something to eat. I always said that she was my right hand woman at school last year.

We appreciate all of the love and concern for us. Don't forget to check out some of the other sites and let them know how concerned you are for them also. Words of encouragement mean so much to all of us, parents and children.

Charles

Sunday, November 14, 2004 8:36 PM CST

Another day has come and gone and we still are at Egleston. We have completed day #4 and we have no idea when we will be away from here. Caroline has had a good day, with her only throwing up after she awoke this morning. They have started giving her Zofran every 8 hours and it seems to be helping out with her nausea. We had a visit by the Surgeon on call today, Dr. Heiss. He said that the wway we are handling this is the way that we need to go. He has said that her bowels have to be given time to start working again. She is still having her stomach drained around the clock and we finally got her up and started walking her around. We figure this might help to get the digestive system working and things moving down. She is constantly telling us that she is hungry, but if we feed her anything, then she will just have it pulled back out by suction. So she is NPO. She is getting nurishment, by the TPN. The TPN is two different bags of nutrients. One with all of the proteins and electrolytes and the other is a small bag of lipids (fat). Just pray that everything starts working and we can be out of here. This definitely sets us back on our next round of chemo.

We had a few visitors today. Thanks to Donnie and Susan Arp for dropping by and then Caroline's grandmother, Alice, and her sister, Katherine, dropped by late this afternoon and brought some needed things from home.

Thanks for all of the calls and letters. It is great to have friends like all of y'all.

Charles

Saturday, November 13, 2004 7:23 PM CST

Well, here we are on Saturday night. We are finishing Day #3 of our second stay at Egleston. Caroline has had a pretty rough day, almost equaling the first day we were here. She started out this morning throwing up again and did so several times before noon, until we were able to get Zofran in her. The afternoon was better and she had another set of X-rays done. The resident came by this evening and explained that there was no small bowel obstruction, but the radiologist thought that there might be a problem with a gastric opening obstruction. Dr. Ricketts has decided that he wants to keep Caroline on intermitent suction throughout the night to drain her stomach and then in the morning if there is still a problem, we might have to have an upper GI. That should be fun. That would tell us conclusively if there is a problem there. That would keep anything from leaving her stomach and going into the rest of her digestive track.

I mentioned how bored I was last night. Now let me add to this how bored Nancy is also. She says that I fail to mention her much on this page. I apologized to her and said I would mention her tonight. I have done this. She is doing good and holding up, but like Caroline, wants to go home. It is looking like that may be early next week (doubtful that it will be tomorrow).

Thanks to Steve and Cindy Worthy for coming over to see us late this afternoon. They brought us food. The food over here is not that great. It was a welcome site to see friends from home.

If you haven't checked out little Kallie Mae's site, I have some bad news. She passed away last night around 11 pm. Please drop by her site and let the family know you are thinking about them. She didn't live long, but bow the impact that little girl had.

Speak to you tomorrow.

Charles

Friday, November 12, 2004 9:05 PM CST

Well we are stil here at Egleston on Friday night. Caroline did well for most of the day and complained about an aching stomach. At about 6 tonight and then again at about 8:30, she threw up again. We have not seen any doctors today since about 7 am. They are allowing her to have clear liquids, but she wants some food. We have told her that she cannot have any till she is successful with the liquids. She is a stubborn 6 year old and there is no reasoning with her. I am guessing that maybe if everything goes well, we might be out of here by Sunday (I wouldn't argue with Saturday though).

This return to the hospital will probably push the next round of chemo back to later in the week. I will try to let you know when that will be.

I am getting very bored here at the hospital. I can only read so many magazines and watch so much children's television. Please pray that I will be able to entertain myself and Caroline. The best thing is to pray that she will be out of here as soon as possible.

Thanks to Mom and Dad for posting for me last night. There was no where to login here at the hospital and they agreed to post for me. Also a big thanks to the Bremen High FBLA for sponsoring the blood drive in Caroline's honor. We heard that they had 42 pints of blood. They had more people come by, but they were unable to give for various reasons.

Thanks again.

Charles

Thursday, November 11, 2004 9:05 PM CST

Caroline is back in the hospital and we are not sure
for how long. She is taking medication for nausea and
has been throwing up since she came home Tuesday.

This is her Nanna filling in for Charles.
He will return to this page for an update
as soon as he can.

Keep praying for Caroline and all of us.

Thursday, November 11, 2004 9:05 PM CST

Caroline is back in the hospital and we are not sure
for how long. She is taking medication for nausea and
has been throwing up since she came home Tuesday.

This is her Nanna fillig for Charles.
He will return to this page for an update
as soon as he can.

Keep praying fo Caroline and all of us.

Wednesday, November 10, 2004 9:41 PM CST

Today has not been a great day for Caroline. She has been throwing up several times today. She started off by throwing up once last night and then did it twice this morning. Things slowed down during the day and then this afternoon around 3:30, she started throwing up again. We got in touch with our Dr.'s office and we worked up a plan to keep her from having to go into the hospital. I am giving her Zofran every 8 hours and we started her on Pedialyte. She was doing fine until we stopped and tried to give her some chicken broth. She seemed fine till an hour or so later and she threw that up. We have just started her back on the Pedialyte and she says that she feels OK. If she gets dehydrated, then we will have to take her back to Atlanta.

I am including an email that I received from Derek's mother, Naomi Yandle. She is holding up real well. There is a problem though, she is facing several Nay sayers and people who are putting her down for the way she is handling Derek's situation. Please read the email below.

-----------------------------------------------------------

Hi Charles,
I am just now opening your email and I apologize. I have been spending alot of time by Derek's bed. He's not been responsive at all for about 2 weeks and is just slowly shutting down. The doctors had us call in the family Saturday night because he was only breathing approx. 1 time per min. God had another plan and gave us more time. He is really suffering so much and it is so heartbreaking. I pray so hard that after Caroline's surgery that chemo will get the rest. I'm assuming thats what they will do. Your family has been so supportive with your prayers and I just cannot thank God enough for you all in our lives at this time. Please pray for me as I am dealing with people that are supposed to be my brothers and sisters in Christ, but are judging me by the way we are handling the situation with the medicines and for asking God to end his suffering. I've been accused of having no faith and not believing God's word. It hurts me so bad. I get emails from them saying that I should just 'speak' Derek up out of the bed. I do believe that our God can raise him up. I believe that with all of my heart! But I also believe that if it be his will to heal him by taking him to Heaven, then thats what he will do. I know I shouldn't let these people get to me, but its so difficult not to. I've just been praying for them. You can read some of their guestbook entries on the website, however some of them do not leave a valid name or email address. Well, I'm sorry if I sounded like I was whining...just pray for me. I just love the Lord so much and know that he is carrying me through this just as much as he is Derek and I know that God has placed people like you in our lives to offer your prayers and support. I thank God each day and please know that I am praying for your precious Caroline. Always remember to just like you said...put it in God's hands and leave it. I believe that He gives us these situations as a test and only because He has confidence in us to be able to go through them and still love Him in the end. May God richly bless you and your family. Please tell all of your friends and church families who follow Derek's story that I appreciate them so much and all of you guys in Georgia are a 'God-send'!
Love and many prayers,
Naomi and family

-----------------------------------------------------------

Please write to her on her site and let her know that we are behind her and support her decisions. Let us show her that we will be there, with the Lord on our side to stand beside her. It is amazing what people will do during this time. I appreciate all of the support that you have shown us during this time of struggle in our lives.

Charles

Tuesday, November 9, 2004 10:04 PM CST

We are at home, finally. We got the clearance today around noon. We got home around 2:30 pm. She is still not feeling too chipper and has complained of pain around her stomach all of this evening. She did get sick on us tonight and threw up, but afterward said that she felt a lot better. The only medicine we are on are Motrin and Tylenol. We will be home for the rest of this week and then we report back to Scottish Rite on Monday for her 5th round of chemo. This will be our final round before the stem cell transplant. The way it looks now is that it will probably be around the middle of December when we go in for this.

A quick note, when I mention Alice and Tearl, I speaking of Nancy's parents (the girls other grandparents). They are as good as gold and I couldn't ask for better inlaws (or outlaws).

We really appreciate all of the prayers, they have gotten us through thus far and we help carry us the rest of the way.

A quick note about school for Caroline. Tonight she told us that she didn't think she felt like going tomorrow. We told her that we hadn't planned on her going anyway. She told us that was good. I know that she misses her classmates and hopefully she will be able to go back in a couple of weeks.

Keep praying for Kallie Mae Martin. She is the 2 month old girl with Neuroblastoma that had a stroke and is still in ICU at Egleston. I didn't get a chance to speak to her parents before we left, but I did notice that they were still there. Check out her site, www.caringbridge.org/ga/kalliemae. Let them know that you are thinking of them.

Charles

Monday, November 8, 2004 8:34 PM CST

I am sorry for not posting last night, as someone was on the computer downstairs at the hospital.

The latest on Caroline.

We came off of the pain medication last night and went to alternating doses of Motrin and Tylenol. Caroline came off of the TPN (IV feeds) today and began eating solid foods (even though not much). She started back on her night feeds through her feeding tube tonight. We are hoping that she will get to come home tomorrow. It all depends on what the doctor thinks about her eating. She has had a bowel movement (last night). When she went to the bathroom, I was almost screaming about how good it was she was going. Whoever thought we would be happy to see poop. She walked a good bit yesterday, down the hall and back, but did not walk that much today. Just pray that things go well so we can come home tomorrow. I came home tonight to be with Katherine and I am going back first thing in the morning after I drop her off at school. We thought that she needed to have one of us home with her, as she was missing us. She spent Saturday night with us and came home last night with Alice and Tearl.

We spoke with Dr. George's office this afternoon and if Dr. Ricketts believes she will be well enough, she will go back into Scottish Rite on Monday for her 5th and final round of chemo before her Stem Cell Transplant. We will have to stay in the hospital for 2 days. So hopefully we will be back home on Tuesday.

We saw Ryan today at Egelston. He was there with his parents getting some final tests done before his time for the Stem Cell Transplant. He is scheduled to go back in Egelston for treatment on Nov. 22. They came by today during a break from the tests and we had a good talk with them about how things seem to work there. Each hospital is a little different.

Keep on praying for Derek's family. There is a new posting from his aunt on the site. Pray that the Lord will take care of him and his family. Also keep praying for little Kallie Mae. Her site is on Saturday's posting.

Thanks for all of the prayers and thoughts. We really appreciate the concerns. If you are in Bremen on Friday, there will be a Red Cross blood drive at the Wrestling Complex from 9 to 2. The drive is in honor of Caroline. We have used about 5 or 6 pints of hemoglobin and platelets since we began this journey. What better way to help us and other children and adults than by sparing a pint of blood. Within 56 days, your body replaces the pint. We would like for it to be the most successful drive they have ever had.

Thanks

Charles

Saturday, November 6, 2004 7:32 PM CST

Well here we are on Saturday. Things have gone really well for Caroline today. She has gotten out of bed several times today and has even started walking to the bathroom. We actually walked out from the bathroom to the door and then back to bed again. Star 94 was doing a radio-a-thon here for the last 3 days and today Katherine and Caroline wanted to go down and see what was going on. We stayed and watched for a while and then someone asked if we would like to share our story about Children's Healthcare with them and Caroline's journey with Neuroblastoma. We were on the air around 4:30 pm and got to speak with Steve and Vickie from the morning show and then Cindy and Ray from the afternoon show. They asked us questions about the Cancer and what things we had done and how the hospital was helping us. We also got to meet Tom Sullivan and he gave Caroline a little stuffed animal. Caroline also got a White Bear that a little girl brought to give to the kids at the hospital. It was neat. Nancy said that she was not going to say anything, but Vickie asked her a couple of questions. She said that she felt she had better say something so she wouldn't look stupid for not answering. They all were so nice to us. I did not realize until today that Steve McCoy had lost a son and they originally thought it could have been Neuroblastoma that he could have had. They raised over $1.1 million and over $21,000 more than they raised over a year ago. All of the money goes to help Children's Healthcare and does not toward administrative costs.

I mentioned the family from Baxley last night. If you would like to send them something their address is as follows:

Timmy and Lynn Martin
940 Bertel Road
Baxley, GA 31513

Their daughter's name is Kallie Mae and their website address is www.caringbridge.org/ga/kalliemae . Visit their site and leave them a message.

Always remember to help someone.

Charles

Friday, November 5, 2004 6:12 PM CST

Well it is Friday evening and we are finally in a room. We moved into room 369 this afternoon around 3:00 pm. Caroline is doing very good and has talked a little bit more today and told us a few things. She is on oxygen, and hopefully that will be dropped in a few hours. She had her NG tube removed from her stomach today and was replaced by a small feeding tube. She is still being fed through her VasCath lines with TPN. Dr. Ricketts dropped by this evening and told us that as soon as she started passing gas, he would allow her to start on liquids by mouth. She has been up in my lap today and will attempt to stand tomorrow. I personally am glad she is out of ICU, not only for her health, but mine also. I have spent the last three nights sleeping there and the chair I slept in gave me a nice crick in the neck. Nancy went home last night and stayed with Katherine and then they came back today around lunch time. They brought Caroline back the movie, "Shrek 2" and we have already watched it. My Dad got a kick out of the movie also. We decided to order out tonight (getting very tired of hospital food) and we're waiting for it to be delivered as of now.

I mentioned the other day a young 2 month old girl who also has Neuroblastoma. I had a long chat with her dad today. He works on tractors for a living and owns his own shop. This is their second child, the first is 21 years old. They had been trying to have a second child for 19 years. I will post their name and address tomorrow and if you can send them a card or some money, that would be nice. They are from Baxley in south Georgia and were flown to here from Savannah. They are staying here at the Ronald McDonald house and are nice folks. They also have a caringbridge page and I will post that tomorrow also. I left the information in the room upstairs.

Thanks for all of the prayers and concerns.

Charles

Thursday, November 4, 2004 7:25 PM CST

Well today has had some good things and some not so good things occur. She has progressed fairly well or pretty good in ICU. She has been talking more today and has her catheter removed as well as her chest tube removed. We got her up and I held her in a chair today and she will get up again later. The not so well event was that after she had her chest tube removed, they did an X-Ray and discovered that she had air go back into her chest. Because of this, they decided that she would not leave ICU tonight and hopefully they can get the air absorbed by tomorrow. When she does go to a regualar room, she will go to the Cancer floor.

I will write more tomorrow.

Charles

Wednesday, November 3, 2004 10:01 PM CST

Well it has been another day here at Egleston. Caroline has done well today and hopefully will get to move to a regular room tomorrow. She has still not been allowed to have anything to eat or drink, even though she has been allowed to have ice chips. She started off by having a wet wash cloth wet and wringed out to suck on. Tonight we got her up for the first time. Nancy picked her up and held her in a sitting position for about 15 or 20 minutes. She didn't like it, but we had to get her moving. I am sleeping in the ICU room with her and Nancy is staying in one of the sleep pods. Thanks to Dana Barker, we got the chance to go to a Hotel room and get a chance to get cleaned up and spend a couple of hours away from the hospital. I had already showered here at the hospital, but Nancy got the chance to get a shower and put on some fresh clothes. We didn't feel we could spend the night away from the hospital. When I spoke with the receptionist at the Hotel, she said everything made sense to her. So if someone is in the area tonight, we have a room you can sleep in. Katherine came over today and stayed with us for a while. She really liked being with us and Caroline. She went to the gift shop and spent some of my mother's (Nanna) money and bought Caroline a stuffed white dog. It looks like my sister KK's dog, Buddy, so we named him Buddy. Katherine will be coming back over tomorrow. I feel this time is better spent with us as a family right now. She can make up her school work later.

Thank you for all of the prayers and concerns. We feel God's hand moving. Please pray for a little girl that is beside Caroline, she is two months old and also has stage 4 Neuroblastoma. Their family is from outside of Savannah. After having chemo, she has had a stroke and is paralyzed on her left side. Just pray God will take care of this little one.

My apology to Dana Barker, in the first posting of this last night, my mind was tired and I listed you as Dana Rogers. Don't know why, but Nancy got on to me for this.

Charles

Tuesday, November 2, 2004 6:09 PM CST

Caroline is out of surgery and is in postop at this time. She will be spending the night in PICU (Pediatric Intensive Care)and hopefully will be able to go to a regular room tomorrow.

It was a long day for Caroline. She went in to the operating room at 9:40 this morning and they started the first incision at 10:30. At about noon, Dr. Ricketts called into the waiting room and informed us that the tumor was further up into her chest than they previously thought. He informed me that they would have to make a cut to open up her chest and move her diaphram. We were updated every hour by a nurse and things were going well. Sometime after 2:30 they began the process of removing the tumor. At about 4 pm, they called and said they were finishing up and would be closing her up soon. They also informed us that Dr. Ricketts would be out and talk with us. We waited for about an hour and a half and finally Dr. Ricketts came out to talk with Nancy and myself. He informed us that things had gone well for the most part. They removed the majority of the tumor, especially around her Kidneys and that they were OK. He said that the tumor that they removed was live for Neuroblastoma and not dead scar tissue as they had hoped. He said that he could not remove the tumor around the aorta, because it was completely incased and to cut into it could result in her not surviving. He said that there would be no further surgery and that her High Dose Chemo and Radiation would have to take care of the rest. He informed us that she would still be here for about a week.

There is a problem though with her recovering tonight. They were going to put an epidural in her back to block the pain, but due to problems with coagulation of her blood they are not able to do it tonight, or at least not at this time. She may have to keep her breathing tube in over night. They have just informed me that they are moving her to ICU, so I need to finish this now. I will try to explain more about this later, either tonight or tomorrow.

UPDATE @ 10:07 PM EDT

Caroline is in her room in PICU and is no longer on her breathing tube. We have had the opportunity to go in and see her. She looks pretty good and is a little groggy. She is opened her eyes and looked at us. She is having a transfusion of platelets right now to help her clotting factor. The Intensive Care Doctor told us that she looks pretty good and will probably get to move to the floor tomorrow. Nancy and I are going to swap out staying in the room with her tonight. They have a sleep area that we have reserved for the night and whoever is not in the room with Caroline will sleep on that pullout. Mom and Dad are still here with us, as is Alice, Melanie, and Jodi.

I didn't mean to scare anyone when I left off earlier.

Thanks to those who came over today and those of you who were praying. It is hectic and we are not sure of where we will be sleeping tonight, but God Will provide.

Charles

Tuesday, November 2, 2004 11:51 AM CST

Hello everyone, I just spoke with Charles. He wanted me to give an update on Caroline. They started surgery around 1030 this morning. They received a call around 1200, that the tumor was up in her chest more than they thought, so they had to open up her chest. That is as much as we know now. I will give another update as soon as I get one.

Thanks again for all of your prayers.
Terri (Charles' sister)

UPDATE AS OF 2:30PM

Caroline is still in surgery and is stable. The doctors are still tying off blood vessels and have yet to start removing the tumor. Will update more as we hear more. The doctors are being tedious to mimimize blood loss.

Monday, November 1, 2004 4:16 PM CST

UPDATE ON SURGERY

We have just been informed that surgery will be at 9:45 am, at Egleston. If you need directions on coming, if you plan to come over, go to www.choa.org for directions.

If you plan on praying at home, work, or in some meetings, we will try to let you know how things went when surgery is through.

Thank you again for your prayers and concerns.

They are going to put an IV in her hand this evening. She is not too excited about this. She has been full of energy this afternoon. While the Child Life Specialist was visiting, she kind of showed her rear end. I mean that she was being playful and pulled her pants down and turned and shook her rear end toward the specialist. This is Caroline.

Charles

Sunday, October 31, 2004 10:09 PM CST

It is late and I will keep this update short and to the point. We do not know exactly what time we will be leaving in the morning to go to the hospital. If they do not call us by 10 in the morning, then we will call them. They told us that they want Caroline to be there somewhere around noon. We also do not know about the time for Caroline's surgery. I promise to put an update on this site as soon as we find out what time on Tuesday the surgery will take place. I know that some of you plan on praying during that time period and others have mentioned coming over to the hospital. I promise to let you know, so check back during the day tomorrow (or today as you are probably reading this on Monday).

Caroline had a good day today and went to church this morning. She is a little worried about this trip. When she woke up this morning, she told me that she had a bad dream about the surgery. I told her that everything would be OK and not to worry.

I got an email from Derek's mom tonight. They appreciated the money that we sent them and it helped them out. Again, if you can spare a little bit to help them out, please send it to them. I am going to put their address up tonight, as I had a problem getting back in touch with some of you asking for their address.

Naomi Yandle
6399 Fairview School Road
Vale, NC 28168

I hope that this is not a problem giving you the address here.

Remember us in prayer this week

Charles

Saturday, October 30, 2004 9:41 PM CDT

Today was a pretty good day for Caroline. We went this morning over to my parents house in Brooks, Georgia. We went to celebrate my birthday with all of my family. We took the girls bikes with us and they rode and rode and rode. Dad even got out their old bike and he rode around with the girls. The girls cousins, April and Noah, brought their bikes over and it was non-stop riding. I have never seen Caroline having so much fun as she did today. When we came home this afternoon, she slept almost the entire trip back to Bremen. The girls went Trick-or-Treating tonight and got a lot of candy. Katherine went as Pochahantas and Caroline as a Princess. Not a bad day in the Johnson household, especially thinking about what lies ahead next week.

I got a little cut on my head today. I was being a little too playful with Nancy and was throwing acorns at her. To make a long story short, she began to chase me and I ran into a piece of plywood. #1 I should have been looking in front of me and #2 I shouldn't have been throwing acorns at Nancy. Oh well, I guess I got what I deserved. My youngest sister suggested that I get a knife and fake blood and I would have a great Halloween costume.

Thank you for all of the prayers that have been lifted up for Caroline and our family lately. It means so much to hear people tell us that you have been praying for us. I have faith that God will guide the doctors and he will give us peace. As soon as we find out what time the surgery will be, we will post it on the site. I know a lot of people want to be praying at the time of the surgery.

I appreciate the opportunity to share our journey with you. This is not only helpful in sharing the story of Caroline's struggle, but it is also therapeutic for me. It allows me to share our struggles and our joys of our family. Thank you for those who have told me how you keep a check on us by reading the site.

A thanks to the Donovan family of Massachusetts. Eric Donovan is a young fellow who has Ewings Sarcoma and is undergoing treatment in Boston. They sent us a beautiful copy of the lighthouse in their town of Scituate, Massachusetts. I encourage you to visit their son's site at www.caringbridge.org/ma/ericdonovan/ .

Thanks again,

Charles

Thursday, October 28, 2004 9:29 PM CDT

THE NEWS YOU HAVE BEEN WAITING FOR: WE WILL KEEP THIS TOP PARAGRAPH UP FOR A FEW DAYS

Caroline will have surgery next Tuesday morning at Egleston. We met with Dr. Ricketts and he informed us that it will be a 5 to 6 hour operation and that we will go into the hospital around noon on Monday. It is a very serious surgery that will be very complicated. He will probably not have to take one of Caroline's kidneys due to the fact that he will not be able to get all of the tumor and that it is possible that her kidneys could have some damage due to the chemo drug, Cisplatin. They will have to split the tumor, something they don't like to do, to pull it away from the aorta. We also found out that the tumor is around the renal vessels for the right kidney. We will be in the hospital for 5 to 7 days, depending on when her bowels begin working again. Be in prayer for us that the doctors will be blessed and guided by God.

BIG CORRECTION!!!!!!!!!!!!!!

Caroline was not in trouble, but now I am. I misinterpreted what Nancy was telling me about Caroline being put on a LIST (not the board) as being one of the silliest in the class. It was not a bad list. I got in trouble with her teacher, who sent word by Nancy that she does not put students names on the board. I hereby apologize to Ms. Sewell. Nancy did say that she was holding Caroline on one side of her hips while trying to write letters on the board. Caroline will sometimes ask to be held when she feels tired. Ms. Sewell apparently needed to change hands to finish. She asked the class how she could work the problem out (hopefully getting Caroline to say by putting her down) and Caroline responded by saying to her that she had another hip she could hold her on. I asked Caroline today why she asks Ms. Sewell to hold her, thinking it was because it was because she was tired, and Caroline told me it was simply because she loves Ms. Sewell. It is so good to have a great and caring educator teach your children. Ms. Sewell taught Katherine in Kindergarten and now teaches Caroline. In case you don't know or remember, Ms. Sewell has a daughter who had Wilm's Tumors and she was going through her chemo and surgery at the same time that Caroline was born. She makes sure that Caroline doesn't get tired so she can last the day and be as active as possible. Caroline has not missed a day of school (except when she has had doctor's appointments) in the last few weeks. Hopefully, the next weeks events will not keep her out long.

Caroline's "friend", Bailey, came over this afternoon. Nancy said that they had the best time and played so well together. I am happy that she is having such a good time this week. It is probably the best 40th birthday present I could get.

Charles

Wednesday, October 27, 2004 9:13 PM CDT

Tuesday, October 26, 2004 9:39 PM CDT

THE NEWS YOU HAVE BEEN WAITING FOR: WE WILL KEEP THIS TOP PARAGRAPH UP FOR A FEW DAYS

Caroline will have surgery next Tuesday morning at Egleston. We met with Dr. Ricketts and he informed us that it will be a 5 to 6 hour operation and that we will go into the hospital around noon on Monday. It is a very serious surgery that will be very complicated. He will probably not have to take one of Caroline's kidneys due to the fact that he will not be able to get all of the tumor and that it is possible that her kidneys could have some damage due to the chemo drug, Cisplatin. They will have to split the tumor, something they don't like to do, to pull it away from the aorta. We also found out that the tumor is around the renal vessels for the right kidney. We will be in the hospital for 5 to 7 days, depending on when her bowels begin working again. Be in prayer for us that the doctors will be blessed and guided by God.

Caroline went back to school today and lasted all day long. She is so full of energy this week. I guess this is how God prepares her for the week that is to come. We took Katherine over to Douglasville to get her costume for Halloween. Katherine got a Pochahantas costume at the Disney store. Caroline is going as the Barbie Princess from "The Princess and the Pauper" movie on DVD. While we were in Douglasville we met up with a sweet lady named Lori Washington. Ms. Washington called us on Monday and said that she had heard of Caroline and that her husband does Construction work. While working, he had a jug that other workers were putting money in for Caroline. She met us in Douglasville and gave us the money. I don't know how much is there, but it was half full of silver coins. One of the workers sent his penny stash in a glass gallon container. Caroline tried picking it up and couldn't budge it. We thank all of those that think of Caroline and pray for her. We plan on sending a portion of this money on to Derek's family.

Don't forget Derek and his family. If you would like to donate some money to them, as they are struggling financially, email me and I will send you their mailing address. I have already been contacted by a couple of people. Let's help make an impact with their family.

Charles

Monday, October 25, 2004 9:22 PM CDT

THE NEWS YOU HAVE BEEN WAITING FOR:

Caroline will have surgery next Tuesday morning at Egleston. We met with Dr. Ricketts this morning and we agreed for him to do the surgery. He informed us that it will be a 5 to 6 hour operation and that we will go into the hospital around noon on Monday. It is a very serious surgery that will be very complicated. He will probably not have to take one of Caroline's kidneys due to the fact that he will not be able to get all of the tumor and that it is possible that her kidneys could have some damage due to the chemo drug, Cisplatin. They will have to split the tumor, something they don't like to do, to pull it away from the aorta. We also found out that the tumor is around the renal vessels for the right kidney. We will be in the hospital for 5 to 7 days, depending on when her bowels begin working again. Be in prayer for us that the doctors will be blessed and guided by God.

Don't forget Derek and his family. If you would like to donate some money to them, as they are struggling financially, email me and I will send you their mailing address.

Charles

Sunday, October 24, 2004 9:05 PM CDT

Caroline had a good day today. She didn't make it to church, but this afternoon she got out and rode her bike up and down the street. She was peddling hard and fast and got me scared a couple of times that she was going to wreck. She's a good driver. Nancy went to the mall with her mother (had to buy my birthday present), so me and the girls went to Wal-mart and they both got a new gameboy game and we bought a new leash to put on our dog Sweetie. Katherine is determined that she is going to train this dog. If you have ever come to the house, she is the little black dog that barks at everyone. If she is successful with this dog, she may have a future in dog obedience. After we finished at Wal-mart, the girls rode out to my school with me. I had purchased some books from "Books are fun," and they dropped off the ones I purchased for the girls on Friday while I was out. The girls like to go to my office and spin around in my chair and act like they are the principal. While I was out on Friday, the school had a pretty rough day. I have managed to arrange to have Dot Sayer, the principal of the Night High school, to come in and cover for me tomorrow while I am in Atlanta with Caroline to visit with the surgeon. Dot and I work closely together, since I am in the building during the day and she is there at night. She will also cover for me during the time for Caroline's surgery. My staff does well while I am out, but I felt they could use the extra support and someone to handle the discipline. The alternative school is getting bigger and bigger each week and that is adding a little stress to my staff. They are wonderful people and I appreciate each of them.

Now back to Caroline----We go to the surgeon in the morning. Our appointment is at 9:45. I found out today that after surgery and Intensive Care, Caroline will be on the same floor as the transplant patients. This is the floor that Dan Calhoun works on. Dan used to go to church with us here in Bremen and works about 3 days each week there at Egleston. It will be nice to have someone who we know there with us. We will give an update on this site when we know when surgery will be.

Continue to pray for Derek and his family. Derek's pain is getting worse, as is the stress for his mother, Naomi and the whole family. They are also going through some financial problems at this time. If you are interested in sending some money their way, contact me by email and I will send you their mailing address.

Charles

Friday, October 22, 2004 9:49 PM CDT

Caroline has had a pretty good week. She got to go to the pumpkin patch with her class today and she got a small pumpkin. Nancy says that her class is so loving to her and they all look out for her. We have put a picture of her trip in the photo album. She has so much fun with all of her friends at school. Of course she will be missing school after she has her surgery. I am sure they will miss her as much as she will miss them.

Caroline's blood counts came back today and they are all up. The one that we have been watching has been the platelet count. The other day it was at 11,000 and now it has gone up to 62,000. That count was the one thing that could stop her from having surgery next week.

Please be in prayer for Derek's family. He is in a lot of pain and is still lingering on. Just pray that the Lord will bring him home soon. If you haven't checked their site out lately, go to the link at the bottom of the page. Naomi, Derek's mom, is struggling, as is the rest of his family.

Charles

Thursday, October 21, 2004 9:57 PM CDT

I am sorry that I didn't update the page last night, but better late than never.

Caroline is doing well, except for a little cough. She has been going to school each day and staying all day long. Her teacher keeps on talking about how strong she is. We know that there is a lot of praying that is assisting her on that count. She did well with her dressing change today at school. Nancy decided not to go to the school and Caroline had Ms. Sewell come in and assist the nurse.

Caroline had her wig trimmed up yesterday. She looks strange having hair on her head. She now feels so comfortable not having hair, that I don't know if she will wear the wig much. When Katherine went and got her hair cut yesterday, they also gave Caroline a shampoo for her hair she still has. She enjoyed that.

Continue to pray for us that next week will be good for all of us.

Charles

Tuesday, October 19, 2004 10:46 PM CDT

Caroline had a good birthday today. She is now a 6 year old. She enjoyed her party at school today and her teacher told Nancy that she is suprised at how much energy that she has. We have noticed the red spots going away from her, though she still has a lot of bruises. Her blood counts came today and her white count, and ANC are up, her platelets are up a little and her hemoglobin is down a little. We took her out ot eat tonight to the Lazy Donkey in Carrollton and while we were there, someone paid for our meal. Our waitress said that she could not tell us who paid for it, so I want to say thank you for whoever it was. The Lord blesses us with so many friends who are concerned for Caroline and for us as a family.

Keep on praying.

Charles

Monday, October 18, 2004 9:54 PM CDT

Well it looks like we will be staying in Georgia for surgery. We heard back from Dr. George this morning and he had spoken with Dr. Ricketts at Egleston. He believes that he can do the surgery. He does not think that he will be able to get all of the tumor out and is worried a little about how the tumor is pushing on one of Caroline's kidneys. He told Dr. George that it will be a major surgery. We will meet with Dr. Ricketts on Monday morning and if Caroline's platelet count is up enough, then we will probably have surgery sometime next week. We feel a little relieved in that we won't have to travel to New York, but Dr. George said that there would not be much difference in how Dr. Ricketts is going to do the surgery, than how Dr. LaQuaglia would do it at Sloan-Kettering. Everything I have heard and read about Dr. Ricketts is impressive. He is the head of pediatric surgery at Emory and at Egleston. He has done many pediatric oncology surgeries. We are putting it in the Lord's hands and let the Great Physician work with the doctors. It looks like I will get to spend my 40th birthday in the hospital (29th). Caroline doing well in surgery would be the best gift I could receive.

Caroline turns 6 in the morning. I was trying to tell her about the things of 6 years ago and what went on. I spent my 34th birthday with her in the hospital. She spent 24 days at Scottish Rite when they repaired her Omphalacele. I went everyday to see her in the hospital and rubbed her feet (she still is ticklish on the bottom of her feet).

Continue to pray for her and our family.

Charles

Sunday, October 17, 2004 6:24 AM CDT

Sorry that I didn't write anything last night.

Yesterday, Caroline had a really great day. We started off the morning by riding at the front of the parade and the girls rode on the back of the car and Nancy sat in the back seat beside them. I stayed in the front to keep the back looking pretty. I would like to thank Tony Dutton and his wife for providing the car. Tony owns the Ford dealership here in Bremen and his wife drove the car for us. We rode in a nice new black Ford Mustang. We all threw candy to crowds and the kids. I think the girls enjoyed that part the most. After we got through the crowd and still had candy left, the girls wanted to go around again to get rid of it. A lot of people waved at us as we were waving at them. We appreciate the Bremen Junior Women's Club for inviting us to be a part of the parade. The girls were dressed up real pretty with Caroline wearing a Black and Blue dress (I guess to match her black and blue body) and Katherine looked so grown up in a red blouse and floral print skirt. Katherine stayed in her outfit the whole day.

After the parade, the girls enjoyed the Towne Festival and bought a few puppets and Beanie Babies. A couple of the vendors gave Caroline things. Then Caroline started asking how much longer before her birthday party.

We had Caroline's birthday party at 2 and she had a few cousins over. We had invited a few other kids, but they were unable to attend, but with just cousins, we had 9 children there. We had the party at the Restaurant (Fincher's). We asked Caroline what she wanted to do first and she said open presents. She got a lot of things, but the present that she said she liked the best was the present that Katherine picked out. She bought her this Panda Bear that moves, makes noises, and sucks on a bottle. After she opened her present, she gave Katherine the biggest hug. She said she also like the Gameboy SP we gave her. My oldest sister, Vickie, and her family came over (I did not count her daughter, Victoria, as one of the nine kids, since she is 16). My younger sister, Terri, could not get off work from Delta and so she and her family could not make it. My youngest sister, Karen, was moving into a new house in Valdosta. But I know they were there in spirit. Caroline's party theme was "Finding Nemo" and we had decorations for that and Alice made a cake with a shell on the top and characters from the movie on the cake. My mother and dad came early to see the parade and help out with the party. They were brave at one time and even walked with some of the children to look at some of the booths for the festival. Caroline said that this has been one of the best birthdays ever. We hope that this will be one she will remember as something good in the midst of a bad thing.

Keep on praying and also pray that her platelet counts will continue to rise. Her nose began to bleed yesterday morning at the start of the parade, but we managed to get it stopped very quickly. We have been told that we should hear from the surgeons at Egleston tomorrow.

Charles

Friday, October 15, 2004 10:19 PM CDT

Tomorrow is the big day in this household. Caroline will be the Grand Marshall of the parade in town tomorrow and she will have her 6th birthday party. She seems to be doing ok. Her blood counts are up a little, except for her platelets. She is under 10,000 and she is bruising very easily and still has Petechiae. We heard from our doctor today that he has spoken with Dr. Rickets at Egleston and he will have an answer for us on Monday. We will post some pictures tomorrow from the parade and the party. Keep us in your prayers.

Charles

Thursday, October 14, 2004 10:36 PM CDT

Not much to write about tonight. We still have not heard from the doctors about surgery. Caroline had her blood drawn this afternoon, but we have not heard back on her counts. She looks even more bruised today than she did on yesterday. She is looking forward to Saturday when she will be the Grand Marshall of the parade for the Towne Festival at 10 am. She is also looking forward to her birthday party on Saturday afternoon @ 2 pm. It is hard to believe that she is about to turn 6. I remember spending every day with her when she was born and was at Scottish Rite in the NICU for 24 days. I still remember the day she first looked up at me with those big eyes (on day 10 or 11). It seems like it was yesterday. Now amazingly she is tied back with Scottish Rite again. Maybe that's why it doesn't seem so long ago.

Keep praying.

Charles

Wednesday, October 13, 2004 9:42 PM CDT

A short journal entry for tonight.

Caroline has developed a condition called Petechiae. This is where she has small red spots develop on her skin that is a type of bruising due to a low platelet count. It is not harmful, but may indicate that she might need to have a platelet transfusion. Her nose bled this afternoon while she crying and she has several bruises over parts of her body. She is not in any pain and they do not itch. She will have blood drawn again tomorrow and the platelet counts should tell us whether or not she will have to go to the clinic. We still are waiting to hear about surgery. I believe that this is another lesson in patience for me. I must have faith that God will lead us to the right answer.

Continue to pray. Check out Derek's page if you get the chance. He is back in the hospital and has a lot of pain. Pray that God will take care of his situation. Also pray that his mother, Naomi, will have strength to continue in these difficult times.

Charles

Tuesday, October 12, 2004 9:46 PM CDT

Caroline went to the doctor today and we know almost as much about her upcoming surgery tonight as we did before we went this morning. Caroline was given a pint of blood and was given her flu shot. We got a chance to see the CT scans that were done on 10/1 and were able to compare them to the ones done on 7/20. The tumor has shrunk by at least half. The doctors were very pleased about how the tumor reacted to the chemo. We were told that they had not heard back from Dr. Stovroff about his thoughts on the surgery. We have made a decision today that we would like to have some of the surgeons at Egleston look at the films and see if they think they can remove the tumor. Some of these surgeons have done several Neuroblastoma removals. If we can have the surgery done here it Atlanta, I think it would be better on the family as a whole. We should hear something by the end of the week. New York is still an option and either way we could be looking at the end of next week at Caroline having surgery. Dr. George told us that there is not a rush to have the surgery done exactly three weeks after the last chemo. He even told us that if we are waiting to go to New York, that we can go ahead and have the fifth round of chemo before we have surgery. There is no hard and fast rule on whether surgery comes before the fifth round of chemo. In looking at the CT scans, there appears to be a little separation on the Aorta and the tumor. That was not there in the first scans. Dr. Rapkin said that looks a little promising. He also said that this surgery would be very involved. There is still a lot of tumor that is located behind the diaphram and that the diaphram would have to be lifted to get to the tumor. It is not a simple removal of a tumor. We leave the details to the "Great Physician." I know that this information is a little rambling, but hopefully you will be able to understand what we do. I know I said that we'd know something today, but we must wait and have patience. The Lord will guide our doctors and I have faith in God that he will lead them to help us make the right decision for Caroline. We got to leave the clinic at 5 pm and the Lord was even with us with traffic. We were home in Bremen at 6 pm. God goes with us no matter where we go.

Continue to pray for us in our journey. We don't know where it is he is leading us, but we will follow. Thank you to all who have been sending can tabs. The Bremen High FCA (Fellowship of Christian Athletes) sent a lot of tabs on Saturday and we had some dropped off at home tonight from a church. Some of the Carroll County firemen have been collecting them and even one of the Bremen firemen dropped off several bags of tabs at Fincher's on Monday.

May God continue to bless you.

Charles

Monday, October 11, 2004 8:33 PM CDT

Well I haven't posted in a couple of days, so here is the latest. Caroline is feeling a little tired today. She has run a slight temperature and took a long nap, late this afternoon. She goes to the doctor in the morning and hopefully we'll find out about the surgery. Our home health nurse came this morning and drew blood and we'll also find out about her blood counts. Be in prayer for us in the morning.

Charles

Saturday, October 9, 2004 9:52 PM CDT

The breakfast was a success this morning. The breakfast was sponsored by the Bremen High FBLA club. Their goal was to raise $1000 for Caroline. They raised over $1600. We have put the money in savings to use for Caroline, especially if we have to go to New York. We should know about surgery after Tuesday. Many thanks go out to Christen Pointer for heading up the effort and to their Teacher sponsor of FBLA, Ms. Chandler. I also would like to thank those who donated their time and effort to making this morning a success. Next Saturday, Caroline will be the Honorary Grand Marshall of the parade during the Bremen Town Festival. We will all ride in the car with her and both the girls can't wait to throw candy from the car. It should be a great event. Caroline turns 6 in just 10 days. We plan on having her birthday party next Saturday if we are not in the hospital (the parade will also depend on whether we are in the hospital). Continue to keep us in your prayers.

We took the girls out to eat tonight at Tokyo Steak House. Both of the girls had never been to a Japanese Steak house and they enjoyed it. Caroline and the chef picked at each other and Caroline ate a lot of her steak. She asked after we finished if we could come back tomorrow. We told her we didn't think so, unless she wanted to pick up the tab. She is acting more and more like the old Caroline.

Our friend Ryan is at Scottish Rite this weekend getting his last round of chemo. He had surgery last week and his parents have said that they are looking at entering Egleston around Halloween to start their stem cell transplant. He still has not had his stem cells harvested, so pray that they will be able to take care of this as soon as possible. Pray that he handles this well.

Charles

Friday, October 8, 2004 10:02 PM CDT

I'm sorry that we didn't update the site last night, but there really wasn't much to print, so I decided that I would put off until tonight.

Caroline has had a couple of good days at school and at home. She has been very active, playing around like the Caroline of old. She has been busy riding her bike down the street and has been getting good and sweatty. The home health nurse came yesterday and drew blood and then we got the report this morning. Caroline's counts are low, with her hemoglobin count around 8. We were told that if the count goes below 7, then she would have to have another transfusion. We also had our appointment changed for Tuesday. We will now see Dr. George at 11 am. I am hoping that he will be able to tell us something about surgery. Our surgeon should have an answer as to whether or not he feels if he can do the operation. Dr. Stovroff is a great surgeon, but I know that he knows his limitations. As soon as we know something, we will post it.

We've had more can tabs given. If you are saving them and want to bring them to us, you can either drop them off at Fincher's in Bremen or you can call us @ 770-537-5122.

Thanks for all of the prayers.

Charles

Wednesday, October 6, 2004 9:57 PM CDT

Today was a pretty good day. Caroline went to school this morning and stayed all day long. We encouraged her to fight through this idea she has about feeling tired after lunch and try to make it an additional hour. She told her teacher after lunch that even though she could be tired, she wanted to stay. We met with her teacher this afternoon for a parent/teacher conference. They said that she was proceeding well and was where she needed to be for a Kindergarten student. Ms. Sewell also said that the class is very protective of Caroline and loves her dearly. The girls finished up their magazine sales and both ended up with the same prizes. I believe that they both sold over 10 to 12 magazine each. I believe that I will have enough reading material for a long time.

Again, if you have not checked out the photo album, check out the new pictures. We have one with the Bremen cheerleaders with the girls.

We spoke with our nurse today from the clinic about flu shots for us. She has encouraged all of us to get the flu shots and they are giving all of their patients the flu shot. Caroline will get hers on Tuesday. Today, Katherine got the last shot that Dr. Ogden's office had. Dr. Parrish's office has not gotten theirs in and they want us (Nancy and myself) to call the health dept. to schedule a shot. Our nurse also gave us some more information about the CT scans that were done last Friday. She said that she had spoken with Dr. George about whether or not the tumor had separated from the blood vessels or not. He said that there was a lot of shrinkage, but that he did not see any separation. We are still waiting to hear about our surgical options. Please keep on praying for Caroline. We will do whatever we need to do or go wherever we need to go. If we have to go to New York, then that is where we will go.

Several people have contacted us about the aluminum can tabs. Please continue to collect these and you can drop them off at Finchers in Bremen or call me (770-537-5122) and we'll figure out a way to get them. We will use these one way or another.

God bless all of you and your families.

Charles

Tuesday, October 5, 2004 9:19 PM CDT

Caroline did well today. She went to school this morning and spent most of the day at school. They called us at around 12:45 and I went and picked her up. She had to get an ice cream before she left and Ms. Sewell said that Caroline had told her that she wanted to give Katherine an ice cream. Caroline is always thinking of Katherine and if she gets something, she always asks for another, not for herself, but to give to Katherine. She loves her big sister (even if they try to kill each other sometimes).

The Bremen Cheerleading squad came over to the house and brought Bremen High cheer paraphenalia for both of the girls. The girls were sweet and both Katherine and Caroline enjoyed their visit. They even brought me a Blue Devil umbrella (I can only use it when it rains in Bremen, can't use it around the Temple crowd). We put a picture on the photo album page of the cheerleaders with our little Blue Devils. Katherine told me tonight that she didn't think she could pull for Temple anymore. I told her that she can pull for Temple when they weren't playing Bremen. A big thank you to Cathy Standifer for bringing the girls over (I guess I can pull for the cheerleaders).

The Bremen High FBLA is having a breakfast this Saturday morning for Caroline. I believe that tickets are on sale at the school and I believe Finchers. We appreciate what these students are doing for Caroline. It is good to see teenagers (or young adults) doing something to help out others. If you are still collecting pull tabs, you can drop them off by Finchers or send them to us. We will see that they help not only our child but other children as well.

Keep on Praying

Charles

PS - We still haven't heard anything about surgery yet.

Monday, October 4, 2004 9:46 PM CDT

Caroline went to school this morning and I had the pleasure of dropping her off. She wants me to do it everyday this week, but I told her I could only do it today and Wednesday (Dentist appt. @ 7 am and then Thurs. and Fri. Dept. of Ed Conference). After she got to school, one of the boys in her class got sick and threw up. Caroline was relocated and she did her work in another area to prevent her from coming down with something. She lasted till around 12:30 and then Nancy had to go get her. She said she was tired.

We heard preliminary results from the CT scan. The nurse told us that the scans showed "Significant Shrinkage" when compared to the previous scans done over two months ago. The Lord is working. We were told that we would hear back from the doctor later in the week and he would let us know about surgery options. They also said that they saw no new growths.

Thank you for all of the prayers that have been said on Caroline and our behalf. Please continue to pray that God will lead us to an outcome that will best serve him.

Charles

Sunday, October 3, 2004 9:25 PM CDT

I hope you like the new picture of Caroline that was taken about 2 weeks ago. The picture was made before she had the NG tube put back in her. She noticed it today and said "hey there's no tube in my nose." I thought it would be more representative of her to see her with no hair (or little hair). If you see her out in public, that is what she looks like all the time. She hates to wear a hat.

She had a pretty good day today. She didn't make it to church, as she felt pretty tired this morning. She finally got out in the yard this afternoon, but Nancy said that she wasn't very active. She is still taking her Neupogen to regenerate her white cells. Hopefully we'll hear something about the scans tomorrow.

Keep on Praying.

Charles

Saturday, October 2, 2004 9:51 PM CDT

Caroline enjoyed the family bar-b-que today. She played around with the other children like nothing was wrong with her. She looked very tired, but didn't falter. We would like to thank the Jackson Family for the gift of money they provided. One of the best things we have going for us is a strong family support system. When we were coming home today, she put her head over on the armrest of the seat and fell asleep, but woke up as soon as we got to the house. She has been going strong ever since.

We heard from Ryan's parents last night. They emailed us to say that Ryan had his surgery this past Wednesday and that the surgeon said it looks that they got everything. He will have his 5th round of chemo next week and then hopefully they will be able to get his stem cells harvested. Please continue to pray for Ryan and his family. He and his family are such sweet people. In case you don't remember, he is a 6 year old boy who is one round ahead of us and he has Neuroblastoma, Stage IV. We will probably be going through Stem Cell Transplant at the same time.

We got our car magnets in today from Candlelighters. They are gold ribbons and say "Conquer Kids Cancer". Alice has ordered some extra and when they arrive, she will have them for sale at the restaraunt for cost. The gold ribbon is the symbol for childhood cancer, just as the pink ribbon is the symbol for Breast Cancer. It is just another way to raise awareness of the fight to stop childhood cancer.

Charles

Friday, October 1, 2004 10:33 PM CDT

Caroline finished her fourth round of chemo today and did very well with very little side effects. Her only real side effect with this round has been her tiredness. She has fallen asleep the last two days during the treatments. She had the CT scans done today and the doctor said he will be in touch with us probably on Monday to let us know what they show. Tomorrow we will be going to Nancy's family reunion on her mother's side of the family. They have a bar-b-que each year and we thought originaly that we would not get to be there.

We found out that Caroline's new wig has arrived in Atlanta. Nancy, Alice and Caroline will probably go one day next week and pick it up. It will have to be thinned out or it will look like a mop or fuzz ball or something. Judy Furr was gracious enough to purchase this for Caroline and hopefully she will enjoy wearing it. She has gotten used to having little or no hair already. She will not wear a hat (unless we make her on cool mornings).

Charles

Thursday, September 30, 2004 9:02 PM CDT

Caroline finished the second day of this round of chemo with no major problems. Nancy and her mother took Caroline to the AFLAC clinic and were supposed to be there by 9 am, but due to the traffic they arrived around 9:45 am. She was rather tired today and was not nearly as active as she was yesterday. She still has not gotten sick (knock on wood) and she is getting Zofran around the clock. We have to have her there by 8 in the morning. I am going to take Nancy and Caroline to the clinic in the morning and then I am going to go meet up with Katherine and her 5th grade class at the Zoo and the Cyclorama. When we finish the field trip, we will go back and pick up Nancy and Caroline. Dad is going to meet us there in the morning to stay with them while I am gone. The original plan was to have him come here first and then take them to Atlanta. The major problem with that idea was that he would have had to leave his house by 5 am to get here in time to leave. Caroline's appetite has been down a little, but she is still eating some and has said that she has been hungry.

If you know anyone hunting a half-time high school social studies job, let me know. I need to find one within the next week or so. Pardon me for this self-serving ad in the middle of Caroline's journal. Now back to our regularly scheduled program.

Please continue to pray that the tumor will continue its shrinking. Caroline will have a CT scan done tomorrow to determine how much it has shrunk and whether it is still attached to the aorta and other blood vessels. It would be nice if it is seperated enough so that we will not have to travel to New York.

Please pray for one of my teacher's husband. He was involved in a very bad motorcyle accident last week and it looks as though he is going to be going through a long rehabilitation period. The teacher's name is Kathy Whitton and she is one of my good retired teachers (she works every other week). One of the first things she asked me today was how was "our" girl doing, in reference to Caroline. We had a discussion about how God brings us trials for a reason.

Charles

Wednesday, September 29, 2004 9:42 PM CDT

Today's round of chemo went very smooth. We got to the clinic at around 9:15. The only bump in the road for the day was them getting her lines clear of clots so they could draw blood before beginning her chemo. They finally got everything started around noon. She has had a lot of energy today and was very busy. The hospital school teacher came over and worked with her some this morning and while they were working, a group filming promotional footage for an advertising program shot video of her and another boy working with the teacher. We don't know if they will use the footage or not, but the cameraman said that he got a lot of good shots. Caroline will be our movie star. We got home a little after 5 this afternoon and she has not had any sickness as of this writing. We are giving her Zofran every 8 hours to help prevent her from getting nauseous. This means that we have to get up at 4 am to give her another set of injections. I guess this is the downside of not being in the hospital. We also set up an appointment with the doctors for October 12 to discuss surgery. The surgeon will look at the CT scans next week and then he will make a decision if her feels whether or not he can remove the tumor.

Please pray for Nancy and Alice as they travel over to the clinic in the morning. I will be at a meeting in Grantville in the morning and then go to school for a few hours before going over to the Juvenile court in the afternoon. Also pray for my school and staff. The students have apparently noticed that I am out of the building. I had to have two students suspended home and one expelled today, and I did this by phone. Pray that things will go smother for them in the days ahead.

Charles

Tuesday, September 28, 2004 9:37 PM CDT

We go to the AFLAC clinic tomorrow morning to begin the fourth round of chemo. This will be a three day procedure and we will be doing this as an outpatient. Hopefully things will go well for us. Remember to pray for us around 9 am each morning as that is when they will do the infusion. I am going with Nancy and Katherine in the morning and then Alice will go with them on Thursday. Hopefully we won't have to deal bad traffic.

I need to clear up something that I have noticed in a few messages on the guest book pages. Several people have mentioned that you are collecting drink tabs to help us pay for our treatments. Our insurance is paying for these things and these tabs will not benefit us directly. I have mentioned to some who are saving them that we can donate these to the Ronald McDonald house and they can turn these over for recycling. I want to make sure that everyone understands that as for payment of medical services, our insurance has been great. The costs we incur is in travel and in food when we are at the hospital. We will see what is in store for the surgical part of the treatment. I hope that the tumor has separated from the blood vessels and we will not have to travel to New York. That will be the expensive part for us as a family. But, we will deal with that when the time comes. Don't feel that you have been wasting your time collecting the tabs, because they will be useful and help not only us out in the long run, but also others. We appreciate all that has been done for us and for Caroline.

We have a family reunion this weekend with part of Nancy's family, the Jacksons. We are hoping that we will get to come to the Saturday portion of the reunion. Please pray for Nancy's grandmother (who is a Jackson). She has been having some medical problems and is at Tanner Hospital in Carrollton. Hopefully things will work out so that she will be able to attend this weekend and see her brothers and sisters.

Remember keep the faith, even when things seem their darkest.

Charles

Monday, September 27, 2004 10:12 PM CDT

Caroline went to school today and stayed all day long. She had a pretty good day. She said they got to watch the movie, "Charlotte's Web," and she also told Nancy that she asked that the teaching assistant tie her shoe. Ms. Cynthia told her no and Caroline realized that she forgot to say the magic word,"Please" and she got her shoe tied. She learning how to jump rope in PE today. Amazing that she found that so exciting. Something we think nothing of at our age. The nurse came and drew blood and Caroline told her mother that she didn't need her to come to school to be with her.

We made the decision today that we will go as an outpatient for the next round of chemo. She will get Carboplatin and Etopophos on Wednesday, Thursday, and Friday. She will get her CT scan done on Friday. It will be easier on all of us if we are at home at night.

Caroline did something tonight that she has not done in 2 months. I was eating steak from the restaurant and she saw what I was eating. She decided that in addition to the two pieces of pizza she was eating, she wanted to eat steak. She used to always eat almost half of my steak and several times I tried to get her to eat steak, with no luck. Her appetite has come back real good the last few days.

Nancy gave Caroline a bath and during this time, she told Nancy that she wished that she wasn't sick. Even though she says this, she still goes on and accepts everything with a good attitude. She tries to act like nothing is wrong with her. She has the best attitude and it helps keep us going. If you have children, hug them and love them. May you never experience the problems we face daily. But if you must, hold your head high and have faith.

Charles

Sunday, September 26, 2004 9:06 PM CDT

Katheirne and Caroline went to see the play at Bremen High School this afternoon. Lance Leopard (Nancy's 16 year old cousin and Caroline's favorite cousin) played the role of Shroeder in the play "You're a Good Man, Charlie Brown." They really enjoyed the play and Alice (grandmother) said that when Caroline got to see Lance, she hugged him as tight as she could. She also got to see one of her favorite babysitters, Sarah Posey, who was working back stage. She really enjoyed getting out and doing something different. She has had a pretty good weekend. She is getting used to her NG tube being back in. We put a new piece of tape on her tube on her face and she has not put her finger back up to the tube to hold it down. This has made our life a little easier this evening.

We will probably do the chemo this week on an outpatient basis. We think this will be easier on the family as a whole and allow us to be home with Katherine at night. The only thing that worries me is the issue about being nauseous. They will give us medicine that will counteract this situation. We still have to have the bone scans and CT scan done this week also. Please remember to pray that the tumor will continue to shrink and separate from the blood vessels.

Remember to pray for all of the children who have Cancer. Don't forget to visit the sites at the bottom of the page.

Charles

Saturday, September 25, 2004 10:54 PM CDT

Did you see us on TV tonight? We went to the Braves game and sat two rows behind the Marlins dugout. My sister, KK, called me during the game and said that every time there was a right handed batter you could see Caroline and myself real good and she saw Nancy and Katherine some of the time. We had a great time and all that Caroline wanted to do was to catch a foul ball. We didn't have much luck with that, but I did buy her a ball from the souvenier stand along with a miniture bat and a foam hand. The girls enjoyed the night out and we thank Denise's(KK's roommate) dad for giving us the tickets. The worst part was getting out of the parking lot.

Caroline is slowly getting used to the NG tube. It is like we are starting all over again with this thing. She had her hand over the tube all last night, but this morning she woke up and has only kept her hand on it for 8 of every 10 seconds. She finally put her hand off the tube to play her GameCube.

She has continued eating pretty good. This morning she ate some chicken noodle soup, some dill pickle chips and a piece of pizza all before 11:30. We are only doing her tube feedings at night. When we got home from the game, we administered her antibiotic, then started her feeding and finished up with the last dose of neupogen. Hopefully she will have enough energy to go to church in the morning. We'll have to see.

Bless everyone

Charles

Friday, September 24, 2004 10:25 PM CDT

Today was not as good a day as we have had this last week. Caroline felt tired this morning and did not go to school. She did ok throughout the day until we got the results of the blood work back this morning. All of her counts, except for the hemoglobin count, was up today. The one that we have been watching was the platelet count. Today it was at 65,000. This meant that it was ok to reinsert the NG tube into her nose. We had a home health nurse come out and she and Nancy put the tube back in. Caroline was not very cooperative and has not been very happy this evening. She is so scared that the tube will come out that she will not move her finger from putting pressure on the tube at her nose. She has been crying about this throughout the evening (rough on Nancy, since I was at the Temple football game). When I got home I forcefully moved her hand away from her nose to show her that the tube would not move, but she put her hand back as soon as I moved away. We had planned on going to the Braves game tomorrow night, but Nancy says if she doesn't calm down on this issue, we would not be going. This has Katherine upset and mad at Caroline. Please pray that Caroline will learn to accept this new tube and not be fearful that it is going to come out.

We learned today that we might have the option of doing the chemo next week as an outpatient at the clinic. The thing that concerns us is the nausea that is related to this round and the fact that we have to have bone scans and CT scans done this next week also. We have to decide by Monday morning. Pray that we will make the right decision for Caroline and us as a family.

Charles

Thursday, September 23, 2004 9:58 PM CDT

Well we are still here and Caroline had a pretty good day again. She did not go to school today, as her class had a field trip. She was visited by Courtney, our home health nurse. She drew blood and changed her dressing around her line. We are still waiting to find out what the blood counts are so that we will know whether or not to put the NG tube back in. She has eaten a lot today on her own. She ate half a banana this morning and then Nancy had to cook her a plate of fries (definitely my child)for morning snack. After Nancy picked Katherine up from school, she went to Wendy's to pick up something for lunch. She bought Caroline a Kid's Meal and Caroline ate the entire hamburger. She is back drinking her juice again like the days before this all started. We pray that she continues with this eating. We believe that she must have more room around her stomach and she is probably able to eat more. We'll know for sure next week.

Continue praying for all of the children (sick and well). Children are God's gifts to us. Please don't forget to visit the sites below and let them know you are praying for them also.

Charles

Wednesday, September 22, 2004 9:36 PM CDT

Caroline finally ran out of steam today. She went to school on time this morning, but by 9 am, her teacher called and said that Caroline was very tired and Nancy needed to come to school and pick her up. She came home and played around for a while, but later on the took a long nap. She has been going full steam all of this week and has been very active. I think it all caught up with her today. She played around with her cousin after school got out and ran around outside.

Tomorrow we have decided that she will stay at home while her class goes on a field trip. This will allow her to get more rest and also allows for the nurse to come and draw blood, to change her dressing, and possibly replace her NG tube. Caroline tonight said that she was hoping that her blood counts were still low so that they wouldn't have to put the tube back in. She has enjoyed her freedom this week from the tube and the feedings. She has been eating pretty good this week, but i'm afraid that she probably has not been eating enough to not warrant the tube. Also, with the chemo next week and also a CT scan, she needs the tube in if she has to take more medicine by mouth.

Katherine and Caroline are selling magazines for their school. If anyone is interested in getting a magazine, please let us know. I don't know if we will be able to purchase enough magazines for the both of them to get rewards at school.

Please continue to pray for us and thanks to those who have. God continues to bless us even in times of trouble. God has a plan, we must have faith that he will show us the way.

Charles

Tuesday, September 21, 2004 9:13 PM CDT

Here is another entry into Caroline's journal

Caroline again went to school and lasted all day long. She really is enjoying going to school. She did tell her mother tonight that the one thing that she liked about preschool more than Kindergarten was that at Preschool, she always got a chance to see Nancy during the day. She said that she missed that.

I would like to thank mine and Nancy's Sunday School class for fixing meals occasionally for us. We have not had a bad meal yet. They do this every few days and it allows us not to have to worry about what we will have to fix.

My parents, Nanna and Papa, came over to visit this afternoon and evening. Dad had Caroline wound up like a cyclone. I think he acts more like a kid when he is around Katherine and Caroline (and all of his other grandkids). Before he left, he had Caroline climbing all over him and she was, I think, trying to kill him. He loved every minute of this. She is acting more and more like a little girl who has nothing wrong with her. I pray that this will last for a long time.

A reminder to keep praying that the tumor continues to shrink and will come away from the blood vessels. Also please pray for Derek and his family. If you have not gone to their website today, take a look at the latest entry into their journal and read the touching story about the dog. Let them know that you are praying for them. Also, remember all of the other children facing childhood cancer.

Charles

Monday, September 20, 2004 9:57 PM CDT

Caroline had a pretty good day today.

She went to school today on time and stayed there until Nancy and I arrived around 1 pm to check her out. She did good and ate some animal crackers in the morning and then ate some of her hot dog for lunch. She was not excited about going to the doctor because she knew that she was going to have her ng tube reinserted. When we arrived at the clinic, they weighed her and measured her height. She is weighing 16 kilograms or 35.8 lbs. That is .2 less than when she went in for her last chemo treatment. They drew her blood and it was "WAY" down. Because her platelet count was down to 16,000, they determined that it would not be too safe to try and reinsert the tube till her count gets a little higher. They believe that if she struggled and it nicked her, then she might have some internal bleeding. Let me tell you, Caroline was on cloud nine because we won't get the tube inserted before Thursday at the earliest. While at the clinic, she ate a whole bag of Doritoes and had some juice (what Nancy didn't pour out on the floor in the clinic - but that is another story). Because she did so good, we stopped at the mall on the way home and bought her a game (and of course Katherine too). Tonight she ate some soup, grapes and had some juice. This was the first time that she asked for juice since we had the first round of chemo. Continue to pray for her to eat this week. Without the feedings, it will be tough for her to maintain her weight unless she eats. Another thing that Caroline told us tonight was that she won't have to worry about having to interupt her school day by having get her feeding at 9 am. She said "I can go to school early now."

Charles

Sunday, September 19, 2004 9:26 PM CDT

Well here is another installment of Caroline's Journal. My mother called me this afternoon and wondered why I had not written yesterday. I told her I thought I would take the day off. She told me that so many people look to this page everyday and they notice when I don't write. I guess that is true by how many hits the page has had over the last 6 weeks.

Caroline has had a great couple of days, minus an incident that occurred this afternoon. She has been outside running and playing. She even had me out playing a game of "toilet tag." Don't even ask! She has really been feeling pretty good this last week. The chemo apparently has not had a big effect on how she feels.

Caroline sometimes forgets that she is wearing her feeding tube. That was very apparent today when she was twisting it around her head and then put the line in her mouth. She started to chew on the line and ended up putting a hole in the line. We debated on whether to reinsert it tonight or wait for the doctor visit tomorrow and then have the nurse put it back in. I made a deal with her that if she would take her Bactrim by mouth, then we would wait till tomorrow to put it back in. She agreed and took the medicine. We'll see what tomorrow brings. The other thing that we told her was that she would have to eat something to make up for the loss of the formula. She ate a half of a piece of pizza tonight.

Remember that tomorrow is another day and we all wonder what our wonderful children will do then. Please love your children. I noticed that the emmy's tonight honored Danny Thomas. Danny Thomas spent his life to make St. Jude's Children Hospital one of the great research institutions regarding children's cancer. So in a way, Children's Cancer research was honored. Marlow Thomas even stated that she accepted the honor in the names of those who fighting children's cancer.

Charles

Friday, September 17, 2004 10:57 PM CDT

Well we are still around after a couple of days off from school and all of the bad weather. We had a couple of times where we were without power yesterday. Both times were about a couple of hours and were in the middle of Caroline's feedings, but with the pump having 16 hours of battery life, we weren't worried, well not too much. Thanks to those who offered the use of a generator if we needed it. Thankfully, it was not.

The pictures of Pensacola were devestating. When I was little, I remember learning to swim at Pensacola Beach. Seeing some of those pictures of the devastation were terrible. Remember to pray for all of those that were touched by Ivan.

Caroline is feeling great and her blood counts came in yesterday afternoon. They are running high, but the nurse said that we could expect them to go down. Caroline has color again, and we think it was due to the transfusion that she got on Monday. Caroline was kind of upset when we informed her that she was not going to school today. She has been asking all day if she goes to school tomorrow. She is really enjoying school. We have to go back to the doctor on Monday for an appointment and hopefully things will go well there.

Thank you for all of the prayers on Caroline's behalf. Prayer is working and she is a blessing to each of our lives.

Charles

Wednesday, September 15, 2004 10:24 PM CDT

Today was a great day for Caroline.

Caroline went to school on time today for the first time. Nancy took her through the regular drop off line and Caroline hopped out of the car and then waved to her mother and went in the doors. Nancy said that she just boo-hooed as she drove away. She said that it is amazing how brave and strong our little girl is. Nancy had to go back at 9 to start her morning feed. When she got there to hook Caroline up to the pump, Caroline told her that she needed to show the nurse how to do it so that Nancy could go home. Nancy showed the nurse and Ms. Cynthia (teacher asst.) how to do everything and then she went home. Caroline stayed all day long and had a great time. As of this time (11:30 pm) she is yet to go to sleep. She is a tough little cookie.

I want to ask for a specific prayer for the next two weeks. As many of you may know, Caroline's tumor is surrounding her aorta and some other blood vessels. We go back on the 30th to have scans done to see how the tumor has shrunk and if it has seperated from the blood vessels. Our surgeon will then determine whether or not he feels that he can successfully operate to remove the tumor. If he does not think he can do it, we may have to go to New York to have the surgery. We ask that you pray that the tumor shrinks away from the blood vessels.

Please remember to pray for all of those in the path of Ivan. School has been cancelled for Carroll county and also for Bremen City schools for tomorrow. I hope that we don't lose power because we may have a problem in completing Caroline's feeding. Her pump has a battery, but it only lasts for 16 hours. We may have to see if we can find someone with an extra generator if we lose power. Hopefully we all will be safe.

Charles

Tuesday, September 14, 2004 10:09 PM CDT

Caroline has had a great day today. She went to school at about 9:30 this morning and stayed till the end of the day. Nancy walked her in to her class and left her there. Caroline said that she had a good day and when Nancy came to pick her up in the afternoon, Nancy said she saw Caroline playing on the playground. Caroline has just finished negotiating a way for her to go to school like everyone else tomorrow morning. She wants to go to school and be dropped off like everyone else. Nancy will have to go to the school and hook up her feeding pump at about 9am and then come back at 10:30 to unhook it. Caroline at first didn't want to do this, but when we pointed out that she would have to go to school late, she relented and accepted these terms. It is hard to wheel and deal with a smart 5 year old. Please pray that things will go well for her at school.

Charles

Monday, September 13, 2004 10:49 PM CDT

Caroline came home from the hospital this evening. We arrived home around 9:30 pm. She finished her last round of chemo around 10:30 this morning, but she had to have Mesna at 3, 6, and 9 hours after her last dose. She is feeling real good and even at this point, is not wanting to go to sleep (11:50 pm). Nancy is laying with her and reading to her in hopes that she will get sleepy. She says that she is wanting to go to school tomorrow and go in by herself. She wants to be like every other child. To show you how well she was feeling tonight, she insisted on going with me from the room to parking garage to get the car. When I go, I always take one of the the rolling bags. I put her on top of the bag and had her hold on to the handle. She thought that was the best thing she got to do all the time that she was there. That was classic Caroline.

The doctors have said there should be little problems with this round (side effects) and that the chances of her coming down with a fever were not as high as the last time. We start back with the Neupogen injections tomorrow night to build back her white blood counts. Her hemoglobin was very low today, so before we got to come home, she got a transfusion. If you get the chance, give blood. We may not get your blood, but someone in need will get the blood and I believe that there will be a blood drive at Bremen High later on in October or November. I've been told that they are doing this one in honor of Caroline.

Remember all of the children who have Cancer when you say your prayers. Our children may not be the biggest group in the world when it comes to sickness, but they are a special little group.

Charles

Sunday, September 12, 2004 10:36 AM CDT

Caroline is doing much better today. She is feeling a lot better and has been acting normal around Katherine (both are fussing at each other). She has not had anymore nausea since Saturday morning. She is in the middle of her 2nd chemo today (Ifosfomide?) and has already finished the etopophos. It looks like they will start chemo tomorrow around 8 am and by the time she gets the mesna at 3, 6, and 9 hours after the Ifos, we may be able to go home by early evening.

Please continue to pray for Ryan and his family. His marrow is still not clear and it has to be clear before they can do the stem cell harvest. Ryan and his family are such nice people and we seem to be in this thing for the long haul together. Both Ryan and Caroline will probably be at Eggleston at the same time for the transplant.

Also don't forget about praying for Derek and his family in North Carolina, and also Kaitlyn and her family in Australia. These are families we have come to know thru the internet who are going through difficult times, especially Derek and his family. Check out their websites and let them know you are praying for them.

Katherine has spent yesterday and today with Caroline here at the hospital. She will be going home today with Alice so she can go to school tomorrow. Continue to pray for her as this is difficult for her in ways that we struggle to understand. She misses being in her house and having us there.

Always think positive and pray positive.

Charles

Saturday, September 11, 2004 2:13 PM CDT

Day number 3 here in the hospital.

Caroline has not done as well since last night. She got sick last night and threw up her NG tube. Mom and Dad were here and she did not wake up till after they left. We put a new tube down her nose and throat this afternoon and she seems to handling it well for now. She has just finished today's doseage of chemo and they are starting it a couple of hours earlier each day, in hopes that she will be finished on Monday early enough that we can go home that night.

We found out yesterday that prior to her next round of chemo in three weeks, she will have scans done to see how well the tumor has shrunk. The doctors are saying they can tell that it has shrunk, but they are not sure how much.

Some more info on the pins at build-a-bear. Alice went by there this afternoon and they said that they did not have the pins anymore. Apparently the one that they gave Caroline was one they had left over when they had them before. You can still buy a purple heart that goes toward childhood cancer programs, but not the pin. They also have an $18 bear that a portion goes toward childhood cancer. If you would like to get a pin, you can go to www.candlelighters.org and you can order a gold pin there. They also have car magnets that are in the shape of a gold ribbon.

Friday, September 10, 2004 9:36 AM CDT

Well it is Friday morning and day 1 of chemo has gone well. They are giving her Etopophos and Iphospho something. I am still working on getting all of these funny sounding chemical names down right. She was bouncing off the walls last night. We had to have the sheet changed on the bed (a little accident) and the mattress is very slick. Caroline decided she wanted to see if she could slide down the mattress with it sitting upright in the sitting position. After sliding down it twice, I had to grab her so Nancy and the Nurse could fix the bed. She took a long nap yesterday afternoon and was not bothered by Doctors and nurses coming in to feel her abdomen and prodding and poking. She went to sleep after midnight. The usual procedure is for Nancy to sleep with her and I get to sleep on the air mattress. Last night Caroline would not be satisfied till I laid down with her and slept in the same bed with her. Actually it was not that bad and Caroline snuggled right under my arm. This morning we have had a battle over doing school work. She wanted to play the Gamecube and we wanted her to do school work. She eventually gave in and after I finish this I have to go back and hook up the game.

If you want to come over and visit, this is a good weekend to visit. She seems to be doing well and the company is a welcome break. We are in room 319 at Scottish Rite.

Thanks again for the prayers and well wishes.

Charles

Wednesday, September 8, 2004 10:19 PM CDT

Tomorrow is the day we go back to the hospital for round 3 of chemo. Caroline has had such a good week and has felt so good. She has been very active and stayed all day at school today. She got to be the leader today in class and really enjoys school. A lot of the things they are doing in class are things that she already knows from preschool.

Caroline did very well with her dressing change today, only cried before they took off the tape and said it actually didn�t hurt. She mainly remembers what is was like right after her surgery to place the vascath line in her chest. Our home health nurse, Courtney, is pretty good and Caroline enjoys her coming to visit. We got into a discussion about boys and kissing with Caroline. Very interesting.

My mother called me this evening before church and I was telling her how great Caroline was feeling. She said something about how bad it is that once she is feeling good, she has to have the chemo knock her down. I told mother that we have to look at in a �glass half full� way. Thank God she is feeling so good so that maybe the chemo won�t knock her down as much this time. Always look for the silver lining, no matter how small the amount of silver may be.

Charles

Tuesday, September 7, 2004 9:29 PM CDT

Caroline had another great day today. She went to school at about 10 am and Nancy went with her. Nancy stayed until about lunchtime and with the help of Ms. Sewell, she convinced Caroline to let Nancy go home for lunch and her to stay with the class and go to the lunchroom. Caroline at first didn�t want Nancy to go, but only because she said that she said that her mother wouldn�t have anything at home to eat. When Nancy told Caroline that there was stuff at home to eat, Caroline then said, �Ok.� She stayed for the rest of the school day and said she had a great day. We will try to go a little earlier tomorrow and have Nancy leave a little earlier. The one concern for tomorrow is that the home health nurse is coming to change her dressing tomorrow and Caroline hates that with a passion. Nancy may have to go back to the school to assist in this.

Have you noticed that since August 1, we have had over 7500 hits on this site. It amazes me how many people are keeping up with Caroline. I have added another link on the page today for a young boy named Derek who lives in North Carolina. His mother has left some messages on the message book and several of you have gone to their website. Derek is under the care of hospice and he is not doing so well. Please pray for him and his family. They have been kind to include a link to Caroline�s site as well.

Tuesday, September 7, 2004 4:54 AM CDT

Sorry for not doing the update last night.

Caroline had a really great day yesterday. We went over to Alice and Tearl's house to eat bar-b-que and gather with the Finchers. All of their grandkids were there and we brought over the girl's bikes. Caroline did more playing than she has done since we were on vacation in July. She was running and riding her bike. We had to make her put her NG tube in her pocket because we were scared that she was going to get it caught in her bike somehow. When we got home she played for a little while and Nancy left with her mom to go to the mall. I noticed it got quiet in the living room, so I came in and found that she had pulled up the cover on her bed and was sound asleep. I let her sleep for a little bit and then woke her up. She has been going to bed later and later each night since she was in the hospital last week. Nancy and I take turns sleeping in the living room with her. I cannot sleep on the air mattress that she sleeps on (or lets say I cannot sleep "well" on that mattress. On Sunday night I slept on the couch instead and Nancy slept in our bed. Well I wanted to make sure I got a good nights sleep last night since I have not been to work in a week. Caroline insisted that I sleep with her. I told her that it was her mother's turn. She said she wanted me. Finally I convinced her to sleep in my bed with me and let Nancy sleep in the living room with Katherine.

Caroline is planning on going to school today. She wants to go and not be hooked up to her feeding pump. She says that she also wants to go alone (not with Nancy). We will see how this works today. She has today and tomorrow that she can do this. We go back to the hospital on Thursday for the third round of chemo.

Continue to pray for us and all of those families that are touched by Cancer. By the way, a neat way to show support for all of us is to wear a gold ribbon on your lapel or shirt. The gold ribbon symbolizes support for those with childhood cancer.

Sunday, September 5, 2004 11:49 PM CDT

Caroline went to church this morning for the first time since the middle of July. It was wonderful to get her out and see everyone. She got a little embarrassed when the audience clapped after Brother Herman recognized the fact that she was there. When you come up to her and say you are glad to see her, don't be put off when she doesn't respond or she turns away. She is only 5 and she doesn't know how to deal with it sometimes. We appreciate all of the well wishes and prayers from everyone.

So many people have told me how they appreciate this webpage. I do it not only to let you know what is going on with Caroline and us, but also as a therapy for myself. It has also put us in contact with other families who are going through similar situations. We were contacted by a family in North Carolina that has a son who is not doing well and his cancer has come back. Please be in prayer for not only him and his family, but all the families who are going through this. Also, I am watching the Jerry Lewis telethon and in a way thanking God that Caroline has Neuroblastoma. With this she has a fighting chance to survive. I have a cousin who lives in Fayetteville who has 2 of his 3 sons that have a form of Muscular Dystrophy. These boys have hardly any chance of surviving their childhood. One of the first people to send us a card and say they were praying for us was my cousin Mike and his family. Please pray for Mike and Stephanie Waddell and their sons Luke and Anson. Also pray for their other son, Cass.

I pray that you have a safe and happy Labor Day.

Charles, Nancy, Katherine and Caroline

Saturday, September 4, 2004 10:10 PM CDT

Well today was for once, uneventful. It was nice to have a regular day. We took the girls to the mall and bought them some clothes and also went to build-a-bear. We found out something interesting while we were there. They have a purple heart you can buy for $1 for you to put in the stuffed animal. The cost of that heart goes to a children's cancer fund. They also have a gold ribbon pin you can purchase with the money going for childhood cancer research. So remember if you go there to buy an animal, spend a little extra on these items so you can help children like Caroline overcome Cancer.

Lance came over tonight and stayed with the girls so that Nancy and I could go out and have a little time to ourselves. The girls did great and when we offered to pay him for watching them, he wouldn't take the money. I told him if he wouldn't take the money for watching the girls, then to take the money for his 16th birthday. He had his birthday yesterday. This was the first time that Nancy and I have had a night out since this ordeal began. It was a welcome break.

If you get a chance, check out some of the other websites for other children with Cancer. Let them know that you are praying for them and all children with cancer. You can find some of them on Kaitlyn's site that is at the bottom of this page. Kaitlyn's mother does a great service by putting links on their page. She is such a sweet girl and is going through some tough times.

Charles

Friday, September 3, 2004 9:55 PM CDT

Caroline did a good job today at Eggleston. We left home around 6:30 so we could arrive before or by 8 am. They checked her blood when we arrived and they said that her white blood count was great. It was at 40. (or 40,000) which compared to Monday�s count of .10 (or 100) was very high. We were having to wait for about 2 hours for the test to see how many stem cells were in the blood, but they figured with such a high white count, they could begin the harvest. We finally got everything started around between 11:30 and noon. The procedure is very interesting. They first prime the machine by using a pint of blood, then they hook the machine up and pull blood from one of Caroline�s tubes of her vascath. The blood goes into the machine and goes into a centrifuge which spins the blood and then separates the different parts of the blood. The stem cells are the lightest and the machine scoops up the cells from the top and then puts them into a bag. This last part is the harvest. They then put the rest of the blood back into Caroline and by the end of the procedure she has not lost any blood and in fact actually gains a little from where they primed the machine. They told us that the cells that were being pulled out looked good, but they would have to count the number of cells that were collected and let us know tonight if we would have to do it again. Dr. Chiang told us that instead of coming back tomorrow, he would have us come back after the next round of chemo if we had to harvest again. They called tonight and said they collected enough cells (somewhere over 15 million). Caroline was a trooper and she didn�t start complaining about wanting to go home till about 30 minutes before we were through. The stem cells will be frozen and when it is time to give them back to her, they will put the bag in a warm bath and when thawed they will be given to her just like a transfusion.

We thank you for your prayers. Caroline is doing good and the way things went today shows that God has a hand in this endeavor. Pray for Nancy, she is getting tired and worn down. She is giving up her job to help take care of Caroline and it can be stressful. I thank God for giving me such a wonderful wife who is a good mother.

Thursday, September 2, 2004 9:31 PM CDT

We came home today, arriving home around 12:30 pm. We had some good news today. They, the doctors, believe that the positive that was found on Monday in Caroline's blood culture was due to a contamination. The bacteria was one that is not generally found in the body and it had not shown back up in other cultures throughout the week. We also found out today that the insurance company has approved the transplant procedure. We were called this afternoon by Eggleston and they said that since the bacteria was not in her blood and her counts are going up, they want us there at 8 am tomorrow morning to do the stem cell harvest. How things change in just a few hours. They told us to be prepared to stay all day, but they beleived that due to her high blood count, they should be able to get all of the cells that they need. We plan on leaving the house around 6 to 6:30 am. We hope that this week will have a positive end. I will be glad to get back to school next week, even if it is for only two days. We go back for round 3 of chemo next thursday.

Thanks for all of the prayers and blessings that have been provided. We still look forward to the day we won't have to worry about any of this.

Wednesday, September 1, 2004 7:22 PM CDT

Another day in the hospital.

We found out today that Caroline has a bacteria that has gotten in her blood stream. They believe that it may have come from one of her lines of her vascath tubes. They are trying to determine the bacteria so they can give her the right antibiotic to kill it. She had a rough night last night. I mentioned in last nights journal that she had a reaction to the antibiotic Vancomycin. We thought that they would give it to her again at 1 am, however since her lip did not respond to the benedryl, they determined that she was allergic to the drug and now she cannot have this. It is supposedly the best antibiotic that is out there. She now has to wear a bracelet while in the hospital that says she is allergic to Etoposide (chemo drug) and Vancomycin. I am glad that I went home last night with Katherine because after Caroline woke up around 10 pm, she did not go to sleep till 4 am. She and Nancy colored a lot in a coloring book and then she read her a story. She has been pretty active today and the doctors finally agreed to take off her fluid tube if she would promise to drink 8 oz. a day. Now the only time she is hooked on to a pole is when she gets her feedings. She still is not eating much on her own, but she did get a new higher calorie formula to be given during her three bolus feedings. She also is not having good bowel movements. So pray that she will start eating more and you know what starts to move.

Due to the bacteria, we now are looking to doing the stem cell harvest after her next round of chemo. It is working out that way anyway. The insurance still has not formally approved the procedure. State Merit has said Ok, but it has to go to an outside review.

We hopefully will be going home tomorrow. Good Lord willing and the bacteria dies.

Tuesday, August 31, 2004 9:34 PM CDT

Today has been both good and bad. Caroline has been fever free all day and her blood counts are starting to come back up. Her blood cultures look clear and the doctor told us based on this plus the fact that she was feeling pretty good that if she was clear of a fever for 24 hours, we could come home tomorrow. Things were going well till about 6 pm when they came to give her a new anti-biotic that she has to take 3 times a day. This is supposedly the best anti-biotic out there. We were warned that in some cases, the child getting this can turn extremely red and have almost an alergic reaction. Well guess what, Caroline starting turning extremely red, started complaining of her head itching, her toungue hurting, and her upper lip started to swell. Before the nurse could get benedryl into her, she was clawing at her scalp scratching as hard as she could. They gave her the benedryl and everything started to calm down, except for her upper lip. The nurse got on the phone to the doctor and he prescribed a steriod for her to take. As of 10 pm her lip still had not gone down. The nurse said that when they give it to her again at 1am, they will give her benedryl first and then give it to her at a slower rate. She told us that she will need all the lights on in the room to make sure that there are no problems.

Please pray for Katherine, she is not doing well with us being away. I came home tonight to stay with her and let her sleep at home (plus I won't have to deal with the lights on at 1am in Caroline's room). Alice brought Katherine up this afternoon and then I brought her home and Alice stayed with Nancy and Caroline. I am going back over tomorrow after I drop Katherine off at school.

Monday, August 30, 2004 9:16 PM CDT

Well today has not been too good of a day. We are back at Scottish Rite. Caroline ran a temperature early this morning around 100.5 and this evening has had a temperature over 102. We had to come to the clinic this morning and since she was neutropenic (low white blood count), they admitted her. She has a white blood count of .15 and for her to stay out of the hospital, she had to have a count of at least .5. We came to the clinic at 10:30 this morning and we finally got into a room at the hospital around 4 pm. She is getting antibiotics every 8 hours. Please pray for her fever to come down. She has to be fever free for 48 hours before we can come home. The doctors told us when we left over a week ago that we would probably be back with a fever.

Caroline's spirits were pretty good this evening. She allowed Nancy and I to go get something to eat away from the hospital. My parents came over and sat with her and Dad tried to get her to show him how to play the Gamecube. They watched TV instead.

I hope that we may be home by Thursday, God willing.

Sunday, August 29, 2004 10:24 PM CDT

Not too much to write today.

She had an OK day today. She has a few sores that have developed in her mouth and has run a slight temperature. It is not high enough though to cause us to take her to the hospital. Keep praying that she stays under 101. The doctor told us that she would or could easily develop mouth sores with the last round of chemo. He also said that he would not be surprised to see us back at the hospital before the third round of chemo.

Saturday, August 28, 2004 11:02 PM CDT

Caroline ordered her a wig today. Nancy and Alice took her to Marietta and she was fitted for a wig. She chose a wig that has long blonde hair. She had to order on because they did not have one like she wanted. They said that it may take up to four weeks for them to get one her size, if the company does not have the one she wants in stock and have to make it. When the wig arrives, she will have to have it styled and cut as if it were real hair. There is a special shampoo that has to be used. When it arrives it will also be very full and in styling the hairpiece, it will have to be thinned out. I wonder if I can use any of that hair on my head, especially where it is thinning out at the front.

A special thanks to the ladies of Pine Grove Baptist Church in Fayetteville. As some of you may know, they are the ones who have provided the pager that you can call when you are praying for Caroline. They sent both of the girls a hand stiched quilt. Katherine's has butterflies and flowers and is real pretty. Caroline's came with a letter and was decorated with hearts with Winnie the Poo characters and Care Bear characters. On the edge of her quilt, they stiched in the numbers "733," which is the code to enter into the pager for "Praying for You."

The girls were happy to have their Papa and Nanna come over from Brooks today. Dad really can get Caroline going.

Again, we appreciate all the prayers that are said daily on Caroline and our family's behalf. Prayer is what will see us through this ordeal.

Friday, August 27, 2004 10:42 PM CDT

Caroline had a pretty good day today. She started off slowly, but by 10:30 she made it to school. She wore her hat. After a little while, she asked her mother if she could take the hat off. She was hot from wearing it and when she took it off she at first a little embarassed. But I guess that she decided she was who she was and people would have to accept her with no hair. Nancy said that the little girl who sits by her at her table just continued to talk to her and things went well. Nancy and her mother are taking her tomorrow morning to find a wig. Caroline has stated that she wants one with long hair like she had before we cut her hair.

I saw a lot of my Central friends at the Temple/Central game. The game came out in the favor of Central (20 - 0). I saw a lot of the kids who were in middle school when I was there and they kind of looked at me strange with my Temple clothes on. I appreciate all of the people who stopped and had to know how Caroline was. It is amazing how many people know about her and are praying for her.

Caroline's counts came in this afternoon concerning her blood. Her white blood count is the lowest it has been. It was at 0.15 and her ability to fight infection is at 0. The nurse told us that if she gets a fever, we will need to come in to the hospital and we will probably have to stay in the hospital till they would be able to find out what would be causing a temperature. Hopefully we will not have to worry about that.

I had a good experience today with our insurance company. Some of you may know that we've been having some problems with the home health company. I finally called our case manager for State Merit and told her about the problems. This afternoon a representative from the company called me and wanted to do whatever was necessary to make things right. I could have changed companies, but I told the case manager that I was willing to give them one more chance. She said that she would get on top of the situation for me and she did. Despite what we hear about insurance companies looking out for the bottom line, they also look out for us too.

Thursday, August 26, 2004 9:41 PM CDT

Today was an ok day. Caroline did not go to school, but she did feel better as the day went on. We are still working with the Bolus feeding and made it up to 120 ml per hour for an hour and a half. She does this 3 times a day and then 60 ml per hour for 10 hours at night. We reach the goal rate of 140 for the bolus feeds tomorrow. She seems to be tolerating this well. She has fell in love with eating chicken noodle soup lately. We are going through 2 or 3 cans a day now. Before she had chemo, she was wanting Trix yogurt and now it is soup. They say that her taste can change. It is good that she is eating along with the tube feedings.

We are going to try to go to school again tomorrow. We are going to try to set up a meeting so we can get homebound started and get her qualified for special education. She would qualify for OHI (other health impairment) and it is primarily used to make sure that there are accomodations and modifications made for her learning.

Katherine is continuing to do good in school. She is one smart girl. She loves going to school (after we finally wake her up). She is enjoying being in Mrs. Carter's class.

Nancy took time out for herself today and went and got her hair cut. She had her mother come over and watch Caroline. I felt back in the groove of things today by going and sitting in Juvenile Court to speak on behalf of (and sometimes against) some of my students.

Continue to pray for Caroline and other children with this disease.

Wednesday, August 25, 2004 9:30 PM CDT

We made our trip to Egleston today to meet the Transplant team. Dr. Chiang was very nice and told us everything that you could think about concerning stem cell transplant. We found out today that when we are through with the phase of treatment that is going on now (5 rounds of chemo and surgery) we will transfer our care there to Egleston. This will involve two transplants. We hope that we will get to have Caroline's stem cells harvested within the next week or so. It depends on two factors now, her blood count rising and State Merit approving the procedure. Oh, to be at the mercy of insurance companies. When Caroline goes for the transplant procedure, she will have high doses of chemo applied that will kill cancer and kill off her bone marrow. About 7 days or so later, she will have the transplant and have to stay at the hospital for about 3 or 4 weeks. When that time is over, we will have to stay within a 20 minute distance of the hospital (knowing Atlanta traffic, that probably means finding a hotel next door). She will get to go home for about two or three weeks and then we do it all over again. We figure that the target date (pending surgery goes ok) will be about 3 or 4 months. Looks like we will be staying in the hospital for Christmas. One of the hard parts for our family is that to be a visitor, you must be 16 and there are no exceptions. This means Katherine can have no physical contact with Caroline while she is there. They said they have a play room that is divided by a large glass window where they can play on opposite sides and can talk to each other. This will be very hard on both of these girls. Even though they can want to kill each other at any given time, they love each other dearly. We will probably also need some volunteers who would be willing to stay with Nancy from time to time. I will need to work a little bit and will need to come home and spend some time with Katherine. During these times, Nancy will need some good company. There will be times when Nancy will come home and I think I can handle things myself, unless someone is bored and wants to spend time with me.

We appreciate all of the gifts that people have been bringing and the donations to help us offset costs. Nancy, Alice, Caroline, and Katherine are going Saturday to find a wig. I would go, but I have to supervise some community service workers at the school that morning. I have suggested that Caroline go for a new look and be a red head.

Caroline's blood counts dropped a little today and will probably drop even more before Friday. Dr. George said that this last round of chemo will probably drop them to the lowest, but they will recover. We hope she will get to go to school tomorrow. That is in the Lord's hands.

Continue to pray for Caroline and all other children who are facing this terrible disease. I encourage you to go to the following site, Kaitlyn's page. I put the site as one the links at the bottom of the page. This site is about a courageous girl from Austrailia. I found this site and on it she has sites of other children with Neuroblastoma. She also has sites of little angels who are no longer with us. I have spent several hours looking at some of these sites and they will touch your hearts.

Tuesday, August 24, 2004 10:01 PM CDT

Caroline had a pretty good day today. She went to school for about an hour or so today. She got tired and came home, but she was pretty happy and active by the time the afternoon came around.

We changed her feeding routine today. She has started to have bolus feeds three times a day for an hour and a half, and then at night she goes on continous feeds for 10 hours. We are starting her at 80 ml an hour during the bolus feeds and will up it each day by 20 ml till we reach 140 ml.

We got some good reports from her blood counts. All of her counts were up, even her hemoglobin count was higher than it had been last week. She is taking neupogen each day to build up her white count and it seems to be working. They should drop in the next few days as the results of the last chemo take effect. But hopefully they will rise back up quickly and will allow us to have her stem cells harvested. We go tomorrow to meet with the transplant team at Egleston.

A long time friend of Alice contacted her today and has decided that she wants to give Caroline a wig. She has been in touch with some experts in Atlanta and they have told her what Caroline needs to get and that the best thing for her would be a synthetic wig. We appreciate this generous gift and Nancy and Alice are going to look and pick out one for Caroline this weekend. I would mention her name, but I don't know if she wants it known that she is doing this. I know others have offered to get one for her and she can always have more than one.

The Lord continues to bless us each day.

Monday, August 23, 2004 9:52 PM CDT

Caroline got her ng tube put back in this morning. The nurse who came showed Nancy how to do it herself. She has felt a little tired today, but was a little inquisitive tonight. She was asking questions about why she did not have a belly button? Why did she have to be sick? When can she get a wig? Questions that are tough to answer.

The first question was kind of easy to explain, but hard to put into terms that a 5 year old can understand. I explained that when she was born she had part of her organs in a little sack outside of the tube that connected her to her mommy (an Omphalacele). I explained that when they stuffed everything back in her and closed her tummy up, that there was no place for her belly button (I hope you like my fine medical terms).

The second question was probably the hardest. We told her that we don't know why God lets us get sick, but that God has a plan and he knows about her and is helping her to get better. I told her that God was working to make her problem in her stomach to get smaller and then they would take it out. It was at this point she asked me "Are they going to cut me open?" I told her yes and that it would be just like when they took out the place at her neck (biopsy). She then asked what if she woke up while they were taking it out? We told her they would put her into a deep sleep and she wouldn't feel it. The little girl is not a dumb cookie (she must take after her momma). She wants to be fully aware of what is occuring to her.

She really wants to get a wig. We so far only have found wigs that are synthetic. They say if the child is under 6, they are better anyway due to the growth of a child's head. She wanted to know if we could get one tomorrow. I told her that we couldn't get one that fast. She wanted it so she could wear it to school. She is very conscious of her little bald head. She has wisps of blonde hair on her head. She has a pretty round head (and I do believe that does come from me if you ever saw pictures of me bald 3 years ago).

Continue to pray for us as we travel this journey.

Monday, August 23, 2004 9:52 PM CDT

Caroline got her ng tube put back in this morning. The nurse who came showed Nancy how to do it herself. She has felt a little tired today, but was a little inquisitive tonight. The asking questions about why she did not have a belly button? Why did she have to be sick? When can she get a wig? Questions that are tough to answer.

The first question was kind of easy to explain, but hard to put into terms that a 5 year old can understand. I explained that when she was born she had part of her organs in a little sack outside of the tube that connected her to her mommy (an Omphalacele). I explained that when they stuffed everything back in her and closed her tummy up, that there was no place for her belly button (I hope you like my fine medical terms).

The second question was probably the hardest. We told her that we don't know why God lets us get sick, but that God has a plan and he knows about her and is helping her to get better. I told her that God was working to make her problem in her stomach to get smaller and then they would take it out. It was at this point she asked me "Are they going to cut me open?" I told her yes and that it would be just like when they took out the place at her neck (biopsy). She then asked what if she woke up while they were taking it out? We told her they would put her into a deep sleep and she wouldn't feel it. The little girl is not a dumb cookie (she must take after her momma). She wants to be fully aware of what is occuring to her.

She really wants to get a wig. We so far only have found wigs that are synthetic. They say if the child is under 6, they are better anyway due to the growth of a child's head. She wanted to know if we could get one tomorrow. I told her that we couldn't get one that fast. She wanted it so she could wear it to school. She is very conscious of her little bald head. She has wisps of blonde hair on her head. She has a pretty round head (and I do believe that does come from me if you ever saw pictures of me bald 3 years ago).

Continue to pray for us as we travel this journey.

Sunday, August 22, 2004 10:26 PM CDT

Well, most of today went pretty good with Caroline. She was pretty active most of the day and played around on her video games with Katherine and even had her cousin Lance over. This evening was a different story. She was taking some medicine and she got sick. She ended up throwing up her feeding tube and we had to remove it. We decided since the home health nurse is coming tomorrow, we would let her put it back in. The nurse will be coming every Monday, Wednesday, and Friday to do blood work and changes her bandage on her line on Mondays. With all of that going on tomorrow, she will probably have to wait till Tuesday before she goes back to school.

We have heard that Bremen High is planning a blood drive in November and they are doing it in honor of Caroline. The word we have is that the kids are very excited and are also planning on doing some other things. The cheerleaders have made a basket or something with Blue Devil items in it (As long as I don't have to use them - you know with my relationship to Temple). We really appreciate these things and I guess the "girls" are blue devils.

Saturday, August 21, 2004 9:31 PM CDT

Caroline came home from the hospital today at about 2:30. She finished up her chemo around midnight and then finished the rescue drugs around 6 am. She has had a pretty good day. The doctor told us that the chemo could or would make her sick while she was taking it, but probably wouldn't effect her later like the first round did. She has been pretty active since we got home this afternoon. She was very happy to see Katherine and they played together a lot.

We are going on Wednesday to meet with the transplant team at Eggleston. Since her marrow was clear, they plan on trying to do a stem cell harvest as soon as her blood counts recover from this round of chemo. The third round of chemo will probably begin on the 9th of September.

Please pray for Katherine. She is having a hard time with both of us being away with Caroline. She has been staying with Nancy's mother, but sometimes a girl wants her momma. She is doing good in school and has just started soccer practice this last week. She is playing U11 soccer and is very sore from the running. It probably didn't help that she had PE this last week and her legs were already sore from running there. We appreciate the things and gifts that people send to her. It is hard sometimes for little sister to get lots of gifts and her being left out. She gets overwhelmed by the attention that Caroline gets. She is doing better each day.

Caroline told us tonight that she did not want me to get my head shaved. She said that if we got it shaved, we would have to wear a hat all the time and since she didn't like to wear them, she thought we might not like wearing them. We told her that it was up to her if we shaved my head.

Please remember Ryan Morgan and his family in your prayers. He is a 6 year old boy with the same cancer as Caroline. He is one round ahead of us in his treatment program. He is a pretty spunky boy and has great parents and an older brother and sister. They live in Woodstock and his chemo is 5 days this time. We will do that one next time.

Friday, August 20, 2004 4:00 PM CDT

Well it is Thursday afternoon and things are going ok for today. Sorry I did not get to do an update last night. We did not get a room at the hospital till about 4:30 yesterday afternoon and we didn't start chemo till about 10:30 pm. She was feeling pretty good last night before we started chemo and played around with her papa Johnson till we kicked him out at 10pm. Today has been a little different. She has slept most of the day and just woke up about an hour ago. She got sick earlier today and we had to stop her feedings for a couple of hours and they just started up again. We will have another round of the chemo drug tonight around 6:30 and hopefully we will get to go home sometime tomorrow morning.

I would like to say a special thanks to April Garner and Nurse Lisa at Jones Elementary for helping me earlier today get some paperwork completed on Caroline. I had to have it done today and they dropped everything to help us out. They were super. If they ever want to come work in Carroll County (which they probably won't) i'll help them find a good school. The whole staff at Jones Elementary are wonderful and I am happy my children attend such a good school.

I want to say a special hello to the men at Huckaby's store in Brooks. They meet every morning for coffee and Dad has to bring the latest printout of this journal. We appreciate them and the others who check out her site daily. It is amazing to see that in just four weeks, this site has been hit almost 4000 times as of this afternoon. Thanks for all of the encouragement.

We got some good news today from her bone marrow biopsy. The tests came back negative that there was no cancer in the marrow. We will probably go next week and visit Egleston. This will be where she will have the stem cell harvest and later on will have the stem cell transplant. Once her blood counts go up (they are expected to drop significantly after this chemo treatment) we will have the harvest. Doctor George told us today that we will probably look at surgury after the third or fourth round of chemo.

Keep on praying.

Wednesday, August 18, 2004 11:09 PM CDT

Caroline did not go to school today. She woke up this morning and was very sore from the biopsy and could hardly walk. Nancy made the decision that she should stay home for today. Her classmates made the neatest thing for her and her teacher, Mrs. Pam Sewell, brought it by to Caroline after school. They decorated a cover sheet that each kid drew in their face into an oval and had their individual names under the pictures. In large letters were the words "Caroline's Snuggle Buddies." She also brought by a framed picture with all of her classmates on the floor surrounding the sheet on the floor of her classroom. She also brought by work for Caroline to work on while she is at the hospital. We will take her to the school room while she is there on Friday. These kids are getting a lesson in life while in Kindergarten.

A special thanks to all the people who have done so much for Caroline and all of our family. Words cannot express how much we appreciate your loving kindness. I hope that you will take the time to read some of the messages that people have left for us on the guest book page. They are very uplifting and special. It is amazing to see how the life of this little 5 year old is touching so many people and how far and wide people are praying for her. God has a purpose for her life and I don't believe that he is through with her yet.

We are supposed to check in at the hospital at noon tomorrow. We hope that we will only be there through Saturday. I will try to update the page while at the hospital, but forgive me if I miss a day.

Tuesday, August 17, 2004 9:47 PM CDT

Caroline went to the hospital today and had a bone marrow biopsy. She did very well and recovered from the procedure very quickly. When she came back to post op and woke up from the anesthesia, she was very playful with me and was also very thirsty. When we came back to Bremen, she walked from the car to the restaurant (Fincher's) and surprised her grandmother at well she was feeling and told her that she was hungry. She has been eating well tonight and has done well back on the feeding tube.

Plans are for her to go to school tomorrow if she feels well. I believe that school is one of the most important things for her to do (of course as an educator I would think that).

We go to the hospital at noon on Thursday to begin the second round of chemo. We saw Ryan today. Ryan is a 6 year old boy who is one round of chemo ahead of Caroline. He also is stage 4 of Neuroblastoma. His parents are letting us know what to expect. He also had a bone marrow biopsy today and will begin his third round of chemo on Thursday. This lets us know that we will do another biopsy in 3 weeks.

So many people are writing to us on this website and it gives us all encouragement. I know that God has a purpose in Caroline's life. Caroline wants everyone to know that she appreciates your prayers and best wishes. Continue to pray for all of us.

Monday, August 16, 2004 10:34 PM CDT

Caroline had a good day today.

She went to school at about 10 am and stayed the remainder of the day. She really enjoyed school and is making friends. She got a gift today from a boy named Bailey Bowden. Bailey was in her preschool class last year and he was supposedly her "boyfriend." (I don't know about that?) In the bag were coloring books and crayons and then a picture of them together at their preschool graduation. Caroline told Nancy that out of the whole bag, the picture was what she really liked. We had to go to Walmart tonight and buy a frame for the picture. She put the picture on the stool beside her bed. When I asked her if he was her boyfriend, she just smiled and nodded her head. Oh Lord, she is just 5. What am I going to do if this boy thing starts this early? Oh, oh, oh, oh, oh.

Her blood counts were way up today. Her white blood count and her platelet counts shot way up. She has the bone marrow biopsy tomorrow at noon. The nurse said today that everything should go fine since her platelet count went up. Thursday we go back for round #2 of chemo.

Concerning her hair, she is still losing her hair. She wore a cute pink hat today to school and she looks pretty cute to have thinning hair. I think she gets that from me.

Keep on praying, because I believe we are seeing results. Her spirits are high and she has lots of energy.

Sunday, August 15, 2004 10:10 PM CDT

Well today was not a bad day.

Caroline was pretty active in playing around today. She is getting pretty good at the Playstation 2. We washed her hair and cut out some of the knots that had developed. She has a few bald spots now and probably will lose the rest of her hair tomorrow or Tuesday. She has pretty good spirits. Denise Rogers came by to talk with Caroline this afternoon. Denise is undergoing chemo for her breast cancer. She has lost her hair and she showed Caroline how she wears a wig and a bandana. She brought Caroline a bandana and a few other things. Caroline's head feels almost like velvet and reminds us of when she was a baby with brand new hair. Unlike my hair, hers will return. I guess the days are getting closer to when I will have to shave my head. Her cousin Lance (her best buddy) is also planning on shaving his head.

Keep on praying for Caroline.

Saturday, August 14, 2004 10:08 PM CDT

Well today started off well, but was kind of tough in the evening.

She had a great day and was full of life through most of the day. She was playing around like there was nothing wrong with her. She got out of the bed and played with her stuffed animals and played with Katherine. But she played around a little too much when she forgot that the feeding tube was in her nose and she started to run and pulled it out. It scared us at first, but we called the home health company and they told us not to worry. They got to our house around 9 tonight. It took a while but we finally got the tube back in her after having a few problems. The nurse was great and had a great attitude. She had to come from Gainesville, where she had to put an IV tube back in a little boy. She finally was able to leave here around 10:30. Caroline did not like the tube going down her throat, but when she agreed to drink some Sprite at the same time, it went very smooth. It didn't hurt that Katherine and her Nanna were on the phone praying at the same time for everything to go OK.

Another fine example of how prayer is making this ordeal a lot easier.

Her hair is coming out a lot faster. We will probably have to cut her hair even shorter tomorrow. We are finding it all over her back and in her bed. She has kind of accepted the fact. She just hates getting it all over her hands.

Please pray for Nancy and Katherine. I think they are taking these stressful days harder than I am.

Friday, August 13, 2004 10:03 PM CDT

We did not have to go get a transfusion of platelets this morning as we thought we might last night. The nurse called this morning and said that if there was no bleeding or severe bruising, then she should be fine without one.

We are losing hair more rapidly today and tonight. We had to have a discussion this afternoon explaining what and why she was losing her hair. She has said that her scalp is sore and tender. It probably won't be long before we both have about the same amount of hair

Thanks to my mother for the picture on the site. I made the picture by promising her $5 if she would let me make a picture of her smiling. She held me to the offer. She is no dumb blonde.

Keep praying. I have had so many people tell me how they are praying for her. I appreciate all of the churches that have added her to their prayer lists.

Thursday, August 12, 2004 10:05 PM CDT

Well we got a little bad news tonight from the doctor. Caroline's platelet count is below 10. We will probably have to go to Scottish Rite in the morning to have a transfusion. When a child goes below 10,000 to 20,000, a transfusion is required. We will get a call in the morning telling us when to come. If the count goes this low, a person can start bleeding uncontrollably.

Other than this news, today has been a fairly OK day. We had her Nana and Papa (Charles and Inez) come to visit her this evening. She enjoyed playing around with her grandparents. Also, one of her favorite cousins, Lance came over and had her pretty active. Lance is a sophomore at Bremen and she loves him greatly. He is one person who can usually get her happy. We have talked about having him move in to keep her happy, but I have no desire to have another child (especially a 15 year old boy - I deal with that age group enough during the day). He is a great guy.

The hair has started falling more rapidly today. I am scared that my hair will have to sooner than I thought if I am going to shave it off.

Keep on praying for her and thanks for that.

Wednesday, August 11, 2004 9:39 PM CDT

Caroline did not go to school today. We had decided to wait and go to school later in the morning so that she would not get so tired. The nurse called this morning and gave Nancy the blood counts and from the information she gave, we decided that going to school today would probably be the best. Her blood counts were down and the one that indicates her ability to fight infection was down to zero. We felt it would be safer to be at home. Caroline cried when Nancy told her that she would not get to go. The doctors explained that her count would go down after the chemo, but would come back up prior to her starting the next round.

Our cat had to go to the doctor today. She has an upper respitory infection. No need to worry, cats or other animals generally do not transfer their colds to humans (at least that is what the vet says).

Caroline finished her fluid bag today. She let out a shout of joy when I told her I was removing the bag. She asked how long she had to wear the other and I told her I didn't know.

We started seeing the first signs of her losing her hair today. She had several hairs that were on her shoulder and her back. It appears that the process has begun. Please pray that she will not get too upset.

Tuesday, August 10, 2004 8:41 PM CDT

Before I get started about Caroline tonight, I have a request from my other daughter. She wants to let everyone know that she spells her name "Katherine." It must be a ten year old thing, but she would like for everyone to know that she spells her name with a K>

Caroline didn't last long at school this morning. She got to school in time to do the fire drill and was the leader in class. She got to hold the flag as they said the pledge and lasted through circle time. About 9:30, she told Nancy that she was tired and Nancy took her home. She plans on going back in the morning. She ate her favorite food for lunch and supper - Cheese Pizza. The owner of Papa's Pizza to go here in town has told Caroline that anytime that she wants a pizza, it's on the house(She says that is her favorite pizza). She told us that she wanted Papa's Pizza tonight. Thank you to them.

She is up to 40 ml on her feeding tube and will go up to 45 in the middle of the night. We are hoping by tomorrow afternoon we can do away with the fluid bag. She told Nancy today that she wished that she could go to school by herself. Nancy told her that she could drop her off and pick her up at the end of the day. Caroline said that she meant that she wished that she didn't have to carry the feeding bag and the fluid bag.

Thank you again for all of the prayers.

Monday, August 9, 2004 9:51 PM CDT

Today was a great day. Caroline got to school a little late. She didn't want to go to school at first, but I came home from my school and Nancy and I got her up and going. She went in a little shy, but enjoyed her day. She lasted all day long and loved it. She said that she could not wait to back tomorrow. She is going to be the leader in her class tomorrow. Pray for tomorrow, because home health will be coming (probably to the school) to change her dressing on the line and to take blood. The blood part is not the problem, it is removing the bandages around the vaso-catheter that will hurt.

She is still eating good and we are at 30 ml an hour with the feeding tube. We had to unclog a blockage in her ng tube tonight, but once it was cleared, things started moving along well.

Keep on praying for her.

Sunday, August 8, 2004 9:30 PM CDT

Well today was a better day in the Johnson house. Caroline has done well on her feeding tube and we are back up to 20 ml an hour and she has eaten chips, hotdog, hamburger, some of Tearl's cake squares and a few other things. She was in a pretty good spirit and we even went over to Tearl and Alice's house to have hamburgers. When we asked her if she wanted hot dog or hamburger, she said both. She actually ate some of both.

The plan is for her to go to school in the morning. She made a deal with me that she would even wear her new glasses to school. She finally tried them on this afternoon and said they were ok.

Please continue to pray for her and our family. Sometimes we get a little stressed, but things are going well.

Saturday, August 7, 2004 7:45 PM CDT

Well today Caroline got a new haircut. She is cuter than a button. She has it short in the back and off of her neck. It gradually gets longer toward the front with bangs at her face. It is kind of a wedge look. It makes her look older than five. She was not too happy about losing her length. Katherine and I had our hair cut first before her.

We had a setback today with the feeding tube. She complained of a stomach ache this morning and the doctor on call had us give her a couple of hours with no feeding. When we resumed following the hair cut, we lowered the feeding to 30 cc per hour. About noon, she threw up. The doctor told us to give her a couple more hours off of the feeding and to start back at 10 cc and progress 5 additional cc's each 12 hours. She told us this is common with patients just starting feeding tubes. She has had a better afternoon and she ate popcorn and had tacos (minus the shell) tonight. Keep praying that she will do better with her feedings.

Thanks to all of you who have been praying and who call the prayer line. We feel that God is working and has a plan in store for Caroline. Keep the faith.

Charles

Friday, August 6, 2004 11:30 PM CDT

Well the tube feedings are going well. We are doing a continuous feeding and she started at 20 cc per hour and has progressed 10cc more each 12 hours. She currently is at 40 cc per hour. We get to stop the fluid bag tomorrow at lunch. Caroline will be happy to rid of this tube.

Pray for us in the morning. We are going to get our hair cut (Caroline, Katherine, and Charles). We have to start getting ready for the probable loss of hair. We are going to have Caroline's hair cut short. Nancy decided that she could not do this herself. Her hair stylest will do the cutting. We decided that we should make it a family affair in that she wouldn't be the only one getting her hair cut. We will be getting a hair piece that fits under a hat. This will hopefully help with transition and allow her to feel more comfortable going to school. I am also considering having my head shaved when she loses her hair. I had it shaved a couple of years ago as a bet with the students at Central Middle School if they raised over $10,000 for Relay for Life. They raised over $14,000. If I shaved once for Cancer, I can shave it again.

Thursday, August 5, 2004 10:47 PM CDT

Today was not as good as yesterday. She had to go to Atlanta to go to the clinic. On her way, she got sick. When she got to the clinic, she found out that she had to have a feeding tube put into her stomach. The doctors felt this was the best way to help her gain weight. She weighs only 32 pounds. We will do this a while to get her some meat on her bones. On the way home from the clinic, she got sick again and then when she got home, sick again. She did eat popcorn and apples tonight.

Our home health people showed up around 10:30 tonight to get us started on the feedings. She will probably have to miss school on Friday (even though she said she planned on going). Caroline has a great class at school with a loving teacher. It is great to have a teacher who is a parent of cancer survivor. It has helped take a huge worry off of my shoulders concerning her education.

I (Charles) started back to work today. The day went pretty smooth. Only having to deal with the new dress code we put in place this year. Carroll county schools has been very supportive of me and is doing anything I need to see that I am there for Caroline.

Hopefully Caroline will be in school on Monday. Please pray that she will get stronger and be able to go on Monday.

Wednesday, August 4, 2004 6:46 PM CDT

Today has been a pretty good day.

Caroline went to her first day of kindergarten today. She stayed for about an hour and a half, but it was a start. Nancy stayed with her till she said she was tired and was ready to come home. She has already told Nancy that she wants to go by herself on Friday. She has to go to the clinic tomorrow, so she will have to miss school.

She has been eating good since last night. She ate a piece of pizza for lunch and had some spaghetti tonight. Please continue to pray that she will eat. The doctors will determine tomorrow what to do about her weight. The options are feeding her through her line or to put a line into her stomach through her nose. Both have their advantages. It is possible that she might be put back in the hospital to make sure that this works. It all depends on the gastro-intestinal doctor.

Thanks for all of the prayers. They are really working.

Tuesday, August 3, 2004 2:17 PM CDT

Well we are at home today. Caroline has been feeling a little better. She wanted to go to school, but we decided that Wednesday might be a better day for trying school.

She is still on fluids and is carrying a bag with a pump and her fluids. She will stay on them through Friday. She goes back to the clinic on Thursday and may have to be put on some dietary help through her line.

Mitzi, our cat, came home from the animal hospital this morning. She had her claws removed on all four paws. It was either have the claws removed or remove the cat. A special thanks to Dr. McCord of the Bowdon Animal Clinic for providing the gift of having this done at no charge. Both of the girls love Mitzi and would hate to see her have to go somewhere else.

A correction from yesterday's journal. The correct number for Caroline's prayer line is 770-636-0001. It is amazing how many pages we are getting throughout the day and night. We were up at 4 this morning with Caroline as she got sick. There were at least 4 or 5 pages at that time of the morning. People are telling me they are calling that number several times a day. We keep it sitting on the kitchen table so we can hear it vibrate throughout the house. What a blessing to know that so many people are praying and caring for Caroline.

Monday, August 2, 2004 11:52 AM CDT

Caroline finishes her first round of chemo today. We are hoping to go home this evening. She has to start eating or we may be forced to return in a few days. Please pray that she will start to eat better.

Remember to call the prayer line at 770-646-0001. You can leave a message or simply enter 733 (code for praying for you).

She came home this evening around 7:30 pm. She will be at home hopefully for another two weeks before beginning her second round.

Sunday, August 1, 2004 1:37 PM CDT

This page has just been created. Please check back for additional updates.

She is undergoing Chemo today and hope to come home on Monday, Aug. 2nd.

Please continue to pray for her.

You can call her prayer line at 770-636-0001. You can leave a voice message or can enter 733 as the code for "Praying for You."

Click here to go back to the main page.

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