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Wednesday, September 15, 2010 9:25 PM CDT
Well it has been a logn 6 year journey we have been on together. We met with Dr. George today and he told us that we have finally cleared the last hurdles and that she has survived long enough with any relapse that she is probably safe from Neuroblastoma coming back. This means we have probably beaten the bullet. He said he know of only 1 case in which the cancer has come back after 5 years. He told us that there would be no more scans and that we only had to come once a year to the survivor clinic. We were through with seeing him, although he would drop in to see us when we visit the clinic. There is such elation in being dismissed by the oncologist. God does answer prayers and each of yours has meant so much to us.
I don't intend to post here again for a while. I will probably post in November, on her 5th year anniversary of finishing all treatments. I will check back from time to time to see if anyone posts anything.
May God bless you as he has our family.
Sweet Caroline, Charles, Nancy and Katherine.
Saturday, June 19, 2010 3:03 PM CDT
Just thought I would write a note to say that Caroline is doing great. Her hair is growing back real good (finally). She has not been having any problems lately. She went to see a Neuropsychologist a couple of weeks ago and Nancy and I go this next week to see the results of their tests. Caroline has been having a few issues with school, especially math, and we felt that we needed to see if this could be results of chemotherapy.
Taking the girls to see Toy Story 3 this afternoon.
Keep praying for the cure.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, March 4, 2010 8:56 PM CST
Well, we went to the survivor clinic on Tuesday and they said that Caroline still does not weigh what she needs to weigh. She has only gained 2.5 pounds since last July. We must fatten up our child. They said this is probably already effecting her height. We also got 2 referrals to new specialists. She is going to see a dermatologist so that they can help figure out why Caroline still has little hair growth. We will also see a neuropsychologist. Well, at least she is living. It was 5 years ago last week since she had her last stem cell transplant. Thank you for all of the prayers on her behalf.
Please leave us note when you drop by.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, February 20, 2010 10:16 AM CST
Hello, I hope everyone is doing well. Caroline has been doing great and everyone else is doing great. Caroline has an appointment with the Survivor Clinic on March 2. I will try to update again at that time.
Praying for all those who still face the disease.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, December 22, 2009 7:56 AM CST
Merry Christmas everyone! I apologize for not updating, but things are going great here at the Johnson household. Caroline is doing great with no major problems. She has these stomach aches off and on, but we have no idea why. It is not so bad that we need to go to the doctor. Her and Katherine are excited about Christmas and so are we.
May God bless you in this Christmas season and hope you stay safe for the future.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, October 27, 2009 7:16 PM CDT
We went to the pulmonologist yesterday and Caroline has been diagnosed with mild asthma. The doctor said that the cause is probably her birth defect and not her cancer. She said that she will need to take Singulair daily and then use her inhaler as needed. She said that she is not exhailing all of the air that is in her lungs, but it is really not a major problem. The doctor said her goal was mainly to help Caroline not be the last kid if they run a race. She wants her to move to the middle of the pack. While we were there, the doctor told us that she had the H1N1 vaccine and it was up to us if we wanted Caroline to have it. She did not want it, but we made her get it anyway. Not many people have the vaccine, especially in our area.
Pray for Nancy, she is not feeling well today. She has run a temperature of almost 100 all day. She is going to see the doctor tomorrow and hopefully figure out what is wrong. I hope it is not the flu.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, October 19, 2009 5:35 AM CDT
Caroline is 11 years old today. She has survived many things. She was born with an omphalacele at birth and survived this birth defect. 5 years later was diagnosed with Neuroblastoma and survived that and the treatments to kill the cancer. Now, she is a healthy and mean as a snake (not really) 11 year old. The Lord continues to bless her and us as a family.
May God bless you this week.
Charles, Nancy, Katherine and Sweet Caroline
Monday, October 12, 2009 5:01 AM CDT
Wow, I had not realized that I had not updated the page since July.
Caroline is doing wonderful and has had no problems with anything in a while. She is finishing up her first 9 weeks of the 5th grade and her grades are good. She has had no medical problems in a while. We do go back to see the pulmonologist at the end of the month though. We had a little scare with the flu in the house. Katherine developed the Swine flu last month and we were worried that Caroline could catch it, but she didn't and we were blessed.
Caroline had her day for Cure that she raised over $1000. If you would like to give money in her honor, go to http://www.firstgiving.com/curekidcarolinejohnson. You can donate through December. All of the money raised goes toward fighting childhood cancer.
Well, I hope that you all are well and I hope that it won't be as long a wait for me to post again.
Charles, Nancy, Katherine, and Sweet Caroline
PS - Caroline will turn 11 next week on Monday, October 19. Please send her an email birthday wish. Her email is cjoct1998@att.net. She would love to hear from you.
Tuesday, July 21, 2009 4:38 PM CDT
I asked people at Facebook to check out this page because I would explain about the doctor visit, and I had not update here. That is smart of me, duh.
Caroline went to the pulmonologist on Monday and we found out that she has a little touch of asthma. The doctor, Dr. Sedor, told us that Caroline's breathing was not obstructed but appears to be somewhat restricted. In one of the breathing tests, she showed that her breathing capacity is only at about 72% of the average child her age. To make sure about her breathing capacity, they are going to schedule a more extensive test at Scottish Rite that will determine what he actual breathing capacity is and it may be at or near 100%. She was given an inhaler to use to use when she has the breathing episodes to see if that will have a positive effect or not. We have to keep up with this and go back and see her in late October. She is not sure of what the cause of the problem is, it could be either her birth defect or the cancer treatment. It rarely bothers her now, but we want to make sure that she is doing well. Continue to pray for her that this breathing situation clears up and she doen't have to take any medicines.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, July 13, 2009 10:13 PM CDT
Well we had a great vacation and got home this evening. We spent the last week in Florida at Flagler Beach. This small town is about 30 minutes south of St. Augustine and about 25 miles north of Daytona. We all had a great time and Caroline played and played and swam and swam. She loved jumping and playing in the waves of the Atlantic the most.
Please pray for the Morgan family. Last week both Ryan and his mother, Missy, passed away after their battles with cancer. You can read about it by visiting Ryan's website, www.superryan.blogspot.com . It is amazing that Ryan was diagnosed 5 years ago with Neuroblastoma and that was a month ahead of Caroline. They went through the same treatments with Ryan always one treatment ahead of Caroline. Caroline has been cancer free now for four years, but Ryan's cancer came back and came back with a vengence. We have been told that if it comes back, then there is little that can be done. We always worry and pray that Caroline's never makes a return visit. During this same time, Ryan's mother was diagnosed with Breast cancer and it was very agressive. Last Wednesday, Missy passed away and then on Friday afternoon, Ryan passed away. Please pray for Ryan's dad, Les, and his brother and sister. Our plans are to go to the memorial service on Saturday.
Pray for all of the children and families that are dealing with this disease.
Charles, Nancy, Katherine and Sweet Caroline
Tuesday, July 7, 2009 7:41 AM CDT
Well we hope that you had a great 4th of July.
Caroline had her 6 month checkup last week with Dr. George. We had it rushed up because of her complaints about her breathing. She arrived at Scottish Rite at 11 am and had her scans at about 1:45 pm. We went straight over to the clinic and she finally was able to see Dr. George at about 3 pm. This meant that she was not able to eat anyting that day till we ate later at about 5:30. The scans were clear and he said that her breathing sounded fine. We are scheduled to see a pulmonologist on July 20th. This was set up by our pediatrician. Dr. George said we just need to wait and see what the pulmonologist says. She usually only complains about her breathing in the evening or when she is tired.
Right now we are in Florida on vacation. We are in Flagler Beach, which is about 30 miles above Daytona and about 40 miles south of St. Augustine. We come here each year. We hope that you get a chance to enjoy your summer.
Please remember to pray for Ryan Morgan and his mother. He has been in a lot of pain as he deals with his return of Neuroblastoma. His mother is dealing with Breast Cancer and is not doing well. Pray that the Lord will take care of the Morgan family as they deal with 2 with the monster known as Cancer.
Charles, Nancy, Katherine, and Sweet Caroline
Friday, June 12, 2009 10:50 PM CDT
Just a note to let you know that we are a little concerned about Caroline. She has been complaining about having trouble breathing in the evenings. She says that she is having to take extra breaths and that it hurts to breathe in deep. We went to see her pediatrician on Thursday afternoon and he ran some blood tests and these came back ok, or at least that is what the nurse said this morning. He said that her breathing sounded ok yesterday. We also have noticed her getting a lot of bruises, but of course, she is an active 10 year old. I guess that anytime your child complains of not feeling good and says she has trouble breathing you worry and then if your child has had cancer, you worry a little bit more. Please pray that we figure out what is going on. I may call Dr. George next week. We are supposed to go see him next month and have her 6 month round of scans. Just pray for her.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, May 20, 2009 9:55 PM CDT
Hope things are going well for everyone. The girls have the rest of this week and 2 more weeks to go before they are through with school. Nancy finishes up on Friday of this week with her 3 year olds and my middle schoolers finish up Friday also. Caroline has field day tomorrow and was suppossed to get a t-shirt that we thought would fit her. When she brought home the shirt today she was given an adult medium instead of a youth medium that we ordered. Nancy is going to go to the school in the morning to hopefully get it straightened out. She was not a happy camper. She had to come home from school yesterday, complaining of aching all over. We determined that it was from playing around after she ate lunch. She said that she was assigned to be a dog and everyone was pulling her around from one side of the yard to the other. The school couldn't reach Nancy, so her teacher called me and scared me half to death. I got in touch with Nancy's mom and Nancy was with her and they went and checked her out. She was playing full strength by the end of the day. She is complaining of a continuous runny nose today. We have not heard when her next set of scans are and will update when we hear.
Katherine is doing great in school. She has maintained straight A's thoughout this freshman year of high school. She got awarded the "Most Outstanding Freshman" award in band last week and also the "Most Outstanding Woodwind" award and another award. We were notified that she will be receiving an honor at awards night at school next Tuesday evening and another honor on Wednesday afternoon. We are so proud of her.
Please continue to pray for some of our friends, especially Ryan Morgan. Check out his website, at http://www.superryan.blogspot.com as he is going under a new treatment. He had been told that there was no further treatment that could be done to stop his Neuroblastoma. The treatment he is getting now is a new experimental treatment for ones that have exhausted all other treatments.
Love,
Charles, Nancy, Katherine and Sweet Caroline
Tuesday, April 21, 2009 8:16 PM CDT
Hope things are going well for you as things are going well for all of us. We have finally overcome the sick bug around here.
I was sick before spring break and then during Katherine's week of spring break, she came down with strep and then last week Nancy had strep. Caroline so far is the only one to not come down with anything and she has the weakest immune system.
Nancy's father, Winford Truitt, passed away on April 11. He had lung cancer and had been in the nursing home for several years. His funeral was on April 13.
Katherine has an interview tomorrow afternoon with Tanner Hospital. She is wanting to volunteer at Higgins Hospital this summer and has to be interviewed. She wants to do something in the medical field and is leaning strongly toward being a doctor.
Caroline has been having fun playing softball. She had 3 games this past weekend, winning 2 and losing 1. She had a game this evening in Carrollton at 6 and they lost to the same team they lost to on Friday night. She has not gotten any hits and she has overcome her fear of being hit. She will have to miss the doubleheader this Friday night due to us going to Relay for Life in Carrollton. She always likes to walk with the survivors at the start. She also likes to visit all of the booths and eat and play and run around and anything else there is to do there.
I hope you have a great week.
Charles, Nancy, Katherine and Sweet Caroline
Sunday, April 5, 2009 8:13 PM CDT
Well I hope things are going well for everyone. I apologize for not updating recently, but Caringbridge has changed a few things and changed how to access the author sign in. After several emails with customer service they finally gave me the way to access the page.
The girls are starting spring break this next week while I am finishing mine. I wish we had the same week off so that we could go somewhere. Caroline has started softball and is enjoying it. She had a doubleheader the other night and they tied the first game and won the second. I think their record is 1-1-1. She did get hit with a pitch and it hit her in her lower back and left a nice bruise. She refused to bat on her next at-bat and the team had to take an out. She did go back in the outfield and play. I had a lot of people asking about her the next day or so, but she survived and said that she would bat when they play again.
Hope you have a great week.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, March 1, 2009 7:23 PM CST
Well we had a little snow here and Caroline played outside for a little while. She wanted it to snow more than it did, but she did play some. She has started softball and is having a great time playing. She had her first practice last week and she has a couple of more practices in the next few weeks. I am not sure of when her first game is. She has hit the ball pretty good and is doing good at fielding. She is slowly gaining weight (very slowly).
Continue to pray for all of our friends who are still battling cancer.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, January 29, 2009 5:15 AM CST
Things are going well for us here at the Johnson household. The girls are busy into their 2nd semester of school. Caroline has been feeling great and is registering today for softball. I am going to do my best to get a new picture of Caroline up by the end of the week. We have a new computer and it will be easier to upload a picture now. Our old one lost the ability to connect with the internet for some reason. It was 4 years old. We bought it while Caroline was undergoing treatment in the fall of 2004.
It is nice to just be normal.
Pray for a friend of mine. Her name is Jill Cavan. She was diagnosed recently with a type of eye cancer. She is a teacher in North Georgia and she doesn't believe that her chances of keeping her eye is that good.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, January 19, 2009 8:22 AM CST
Good morning
Things are going well here at the Johnson household. I forgot to update the page last week when I finally heard back from Erica at the clinic. Her scans were totally CLEAR! What a relief. We appreciate all of the prayers that we get.
I just thought about something the doctors said when we were at the clinic. They were saying there were things they were learning all the time about neuroblastoma survivors and some of the questions we had they were not sure about. The thing that struck me was something that they told us about Caroline. They said that they don't have a lot of survivors who were Stage 4, high risk. We pray for the day when all of the neuroblastoma patients survive and are cured. Everyday that goes by beyond her treatment without her cancer coming back means that her chances get even better.
I will be trying to remember to keep you updated on Caroline's struggle to get fat. I have had several people come up and offer to get her a fat transplant, saying they had extra that she was welcome to have. We have had 2 transplants and think we'll skip any more of any kind.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, January 8, 2009 9:05 PM CST
Hello from the Johnsons. It has been almost half of a year since I have updated and I don't know how many people still check out our site, but I felt that I needed to update the page.
Caroline had her first visit to the Survivor Clinic on Wednesday and it was a long day. We started out in the morning with us leaving the house at 6 am and arriving at the AFLAC clinic at about 7:45. We then had to go across the street for Caroline to begin taking her contrast (always a fun experience). At about 10, we headed back over to the Medical Office Building (MOB) to have her audiological exam to check her hearing. We had to carry her contrast with us. They checked her hearing and determined that only her high frequency hearing has been damaged and that was not part of the hearing that effects her speech. We then went back to the hospital and she was able to have her scans by about 11:45 am. We hope to hear back on the results of the CT in the next few days. We went down to the cafeteria for lunch and then headed over to the MOB again for her appointment with the survivor clinic doctors. We met with 3 doctors while we there. We met with Dr. Meachem who is the medical director of the clinic. She is actually an endocrinologist and we discussed everything that Caroline has gone through. They shared with us a report that showed all of the procedures and every chemo that she was given during her treatment. They determined that Caroline is severely underweight. She only weighs 48.5 pounds and we are going to be working to bulk the girl up. After we met with Dr. Meachem, we then got to meet Dr. Patton, who is a neuro-psychologist. We discussed some behavioral issues and how we can deal with these. We then discussed the oncology with our last doctor. When we finished there, we then went upstairs and Caroline had an EKG and then an echo-cardiogram. We finally were able to leave a little after 4 and since Caroline had done so well, we went back over to the hospital and she got to pick out a Webkinz from the gift shop. We were back on the road by 4:30 and back into Bremen by about 5:45 or so.
As soon as we know something about the scans, we'll post something.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, June 24, 2008 10:03 PM CDT
Clear Scans!!
Caroline had her 6 month scans done today and they were clear and even the spot that was in the December and February scans were gone. It seems that every scan that she has had since she was cleared of cancer has had something suspicious showing up. Well, Dr. George said they had to find something and they found a raised spot on her pelvis, but he said that had nothing to do with her condition and that a lot of people have this and it is nothing for us to worry about. He said himself that the Radiologist must have been looking hard to find something going on in her. Her blood looked excellent and all of the numbers wer in the good range. He said the only numbers showing any variance were two concerning her liver. He said one number was a little high and the other was a little low, so he said averaging them together should be in the middle. Dr. George has scheduled us to go to the survivor clinic for our next appointment in 6 months. He said that we need to start getting ready for the next phase of treatment. He said that we will go over all the things we need to be aware of that can happen with her as a result of her chemo and radiation. He said we have been told this stuff earlier, but we have probably put in the back of our mind. Now it is time to bring it to the front. They also will prepare a passport of all of her treatment for her to have when she becomes an adult and need to share with her adult doctors later in life. She is 9 and still has 9 years to go till she becomes an adult. I did ask Dr. George if we were out of the woods yet and he said he couldn't say that. He said he has had a patient who was clear for 7 years after treatment before the cancer came back. He did say that every year that she is cancer free improves her odds of staying free.
Thank you for all of your prayers and please continue to pray for her and the others who are going through their battles with cancer.
Charles, Nancy, Katherine and Sweet Caroline
Saturday, June 7, 2008 1:10 PM CDT
I am sorry for not updating for a while. Things are going well around the Johnson household. Caroline seems to be doing very good and we have not had any more problems with her tongue. We do go back for our 6 month scans on June 24th. Please pray that the mysterious spot that appeared in December and February scans will have disappeared or at the least that it has not changed. We will have the scan around 10 and visit with Dr. George that afternoon.
Nancy and the girls finished Vacation Bible School yesterday. Nancy taught a 1st grade boys class and Katherine helped out in her room. Caroline enjoyed her classes.
Well, I will update again after we have our scans.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, April 29, 2008 10:03 PM CDT
Well the Lord must be doing something for Caroline. We had a great visit with Caroline's new dentist at Scottish Rite today. Let me go back to last week and recap what was going on before.
Last Monday, Caroline went to our dentist in Carrollton for her cleaning. Dr. Ayers looked over Caroline's mouth for a routine examination and discovered a lesion on the side of her tongue that alarmed her. She stated that she had not seen anything like what she was seeing and asked Nancy when we were scheduled to go back to see our oncologist? Nancy said that it was not till June and Dr. Ayers said that what she saw needed to be seen about before then. She wanted us to go see an oral surgeon at Scottish Rite soon and tried to set up an appointment. She was not able to do so before Nancy and Caroline left and Nancy headed home. Nancy called me and told me what our dentist had told her and I then immediately got on the phone to Dr. George's office and asked them about what Nancy was being told. To make a long story shorter, we got an appointment to see a dentist at Scottish Rite who deals with Cancer patients and we ended up getting an appointment for this afternoon. Nancy's sister, Melanie, is a trained dental assistant and she looked at Caroline's mouth and said that it appeared to be a serious looking lesion but that it was probably in its early stages and that is why our dentist wanted us to see someone immediately. I saw the spot myself and Nancy saw it at the dentist office. Last week we began to ask for prayers that whatever it was, for the Lord to take care of the spot and Caroline.
Let's now fast forward to today. We headed to Atlanta this afternoon and before we arrived, we asked Caroline to let us look in her mouth. We saw no spot on her tongue. We started wondering if we made a trip for nothing. Caroline got in the office and was looked over by an intern and then we met Dr. Jack Thomas who looked at her and said that he did not see anything. He said that the mouth is a window to how the body is doing. He said that the mouth also has a way of healing and changing rapidly. He asked us to watch her over the next month and if anything shows up we are to call them immediately and bring her in that day for them to look at whatever is there. He also said that he would like to start working with her because she is probably going to be dealing with major issues with her teeth over the next few years. He told us that chemo and radiation changes the chemical makeup of the saliva and the mouth and that she may require more work than a regular dentist may be able to handle. He said that our dentist has done a beautiful job with the fillings that she has had to have over the last 3 years, but that fillings have a 50/50 success rate with cancer patients and that we they start to fail you don't need to make the fillings bigger. He said that she will need to have crowns because they have a 99% success rate. We decided that his dealing with pediatric cancer children gives him an edge over regular dentists that she will start to see him now. So the Lord provided 2 things for us today, a disappearance of the lesion and someone to help care for her in the future.
Now something else that is going on with Caroline is that she has been having stomach pains over the last few days. We don't know if it is something related to having diarhea yesterday or something else. She has stated that the pains are very sharp and located where her original tumor was. She also has said they are not like a regular stomach ache. She went to see the nurse at school this morning but has complained about them since then. We have decided that we will see how the complaints go through Friday and if they continue, then we will call the oncologist. I am hoping that is related to the little bug she had yesterday. So please pray that these pains just go away.
I hope that this was not too long of an update.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, April 21, 2008 9:56 PM CDT
I apologize for not updating since early March.
I need to update you on Caroline and ask for your prayers. Today, she went to the dentist for a normal cleaning and the Dentist found a strange area on her tongue that had white spots and Caroline had been complaining of it hurting occassionaly. The Dentist said that she had never seen this before and asked when we were going back to see our Oncologist, Dr. George. Nancy told her that it was not till June. Dr. Ayers, the dentist, said that she needed to be seen by someone earlier than that. They tried to get in touch with an oral surgeon at Scottish Rite. Nancy called me and I in turn called Dr. George's office and spoke with his nurse, Erica. I told Erica what the dentist had said and she said she would talk with Dr. George. Erica called me back and said that Dr. George said it was not common to have mouth problems as side effects. He suggested a dentist that they use with Cancer patients at the AFLAC center and he is also at Scottish Rite. Dr. George felt that he has probably been exposed to more things than our dentist. Erica is going to set up an appointment and we hopefully will find out what is going on in Caroline's mouth. It always seems that there is something that there is always something else that goes on with her. We still don't know about the spot on her lungs and now the spot on her tongue. Oh well, you gotta have faith that God will work everything out ok for us.
Caroline got a hit tonight at softball and got on base and then got an extra base when the throw to first was off. She got tagged out going to third on a hit. The ball hit her in the head and she got upset. Nancy asked her if she was upset because she got hit or because she got out. Caroline told her that she was out there to have fun and did not care if they won, but she was happy that they did win the game and she said she would like to make it home one time.
Pray for her.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, March 6, 2008 5:21 AM CST
I spoke with Dr. George's nurse, Erika, yesterday and she told me that Dr. George looked at previous scans and that this spot was not on any of the scans before December. He said that the good thing was that the spot had not grown or changed from the December scan to the February scan. He said that he does not believe that it is a tumor and that it is apparently scar tissue. He said that he did not know why it did not show up till now. He said that when we do our next set of scans in June that they will look closely at this spot again and see if there is any change in the area then. They asked how Caroline was feeling and I told them that she seems fine and has not complained of any pains in her chest area or anywhere for that matter. I guess that we will just have to wait and see if it is anything to be worried about. Please pray that this spot will disappear or at the least that it is nothing to be concerned about.
Caroline has evaluations today for softball. She is very excited and had a great time last year. We had to go buy a new glove yesterday because we could not find her glove from last year.
Katherine is doing great. She had a meeting on Tuesday with her advisor from the high school to register for classes for next year. Hard to believe that she will be a 9th grader and turn 15 in December.
Please pray for Nancy. She has had a pain in both of her arms for several weeks and she has an appointment with her doctor next week to check it out. She thinks it might be a pinched nerve.
I got some good news this week. My school's 8th grade writing scores came back and we had a 19% gain in the scores and have the highest scores in Carroll County.
Pray for all of us, but especially for Caroline and Nancy.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, March 2, 2008 1:26 PM CST
We found out the results of Caroline's scans from this past Monday. I called over to Scottish Rite and left a message for Dr. George's nurse, Erica, to call me back. She called back late Friday afternoon and told me that the spot on her lung is still there. They said that it has not gotten any larger and it looked the same as it did in December. She said that the report stated that it appeared that the spot is scarring. That is the only information that we have. She is not scheduled to have scans again till June. I am going to call tomorrow and ask them to go back and check the earlier scans before December to see if there is any evidence of a spot. I don't see how something could all of a sudden come up in December and it be scarring, without it being there already. Apparently Dr. George is not worried about this or we would be scheduled for tests sooner than June. Keep praying for Caroline that it is just scarring and not something new.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, February 20, 2008 9:48 PM CST
Hello from the Johnson house.
Please pray for Caroline on Monday morning. She will have her chest CT at 9 am at Scottish Rite. They are rechecking the area that was dark on her scan in December. According to Dr. George, they believe that it is nothing but an area where her lungs might have been partially collapsed from laying on the table. She is only having the Chest CT and not the full chest and abdomen CT that is done every 6 months. Nancy and her mom are going to take her over to the hospital. I would go if this had been a regular CT and doctor visit. Hopefully we'll hear something before the end of the day.
Caroline is doing well and she enjoyed looking at the lunar eclipse tonight. She is doing well in school, except for her times tables. She is trying out for softball again this year. She moves up to an older age brackeet this year. I hope she enjoys it as much as she did last year.
Katherine is doing well also. She has a project due Friday in her writing class. She is growing into a beautiful young lady.
Nancy and I are also doing well and just trying to survive living with 2 active daughters.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, January 21, 2008 8:56 PM CST
I am sorry that it has been over a month since I have updated the page. Things are going well here at the Johnson household and when things are going well, then you kind of forget that there is a need to update. I am going to try to do this at least once a month now. So here are how things have been since before Christmas.
Caroline is doing well. We are waiting to hear when her scans will be for next month. She had a spot that was present during her last scans in December. They are probably a shadow or from where her lungs were partially collapsed while she was on the table. Dr. George does not think, nor does the radiologist believe, that it is something that we need to worry about. We are doing the scans just as a safety precaution. These will only be of her chest, around the area the spot showed up. She won't have her regular CT done again till summer. As Dr. George told us, we are now through with the MIBG scans. We are over 3 years out of her first stem cell transplant and will be 3 years out of her second next month. She is doing so great with the only side effect being her hair not coming back fully. After knowing all of the risks for side effects, the hair problem is not a bad one to have. Caroline is working on a project for her 3rd grade class. She is doing a report on the Wright Brothers. She is excited and also is planning on participating in the talent show. We have yet to decide what her talent will be. I think she should do a comedy routine, but I think that her shyness might prevent her from doing that.
Katherine is doing great in school. She is loving band and is finishing up her Science Fair project. She is growing into a beautiful young lady. Hard to believe that she is 14 and in December will be able to get her learner's license. Any donations towards buying her a car would be greatly appreciated (just kidding).
Nancy is doing great. She is still working at the preschool at the church 2 days a week and looking after all of us the rest of the time.
I have started my classes for doctorate. I am doing an online program through Walden University. It is not easy and is very time consuming. I should be through in about 3 years. Katherine asked me would she have to call me doctor and I told her yes and she said I could be Doctor Daddy. I told her that would be just fine.
Please pray for Callie Sewell. She is the daughter of Caroline's kindergarten teacher. I believe that she has had Wilm's Tumors years ago about the time that Caroline was born. She has been free of cancer for several years. She is at Egleston and is on a respirator. They are not sure if her cancer is coming back or if there is a type of viral infection. She is now 17 and is a very sweet girl. It was a blessing having her mother as Caroline's first teacher at that critical point when Caroline was undergoing treatment. Just please say a prayer.
Till we meet again,
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, December 19, 2007 7:59 PM CST
Merry Christmas
Caroline went to have her scans yesterday and also to see Dr. George. Things went very good for Caroline. She drank her contrast with no problems in the morning and she did not get too upset when they had to put in her IV for the CT. She did well with the scans and we were able to get through by 11:45 and had plenty of time to visit the gift shop and then have lunch before her appointment with Dr. George. We had a good visit with Dr. George and he informed us that her blood counts were great and that her scans were good except for one area. Now we drew in a deep breath and then he explained about the one area. He said that there is an area in the back of her lungs that showed a dark spot. He said that according to the info from the Radiologist, it appeared to possibly be where as she was laying down, part of her lung may have been collapsed and that would show up as a dark place. He said that they did not believe that there is a problem. He did order her to have a chest CT in February just to make sure that there was nothing. He said that it is just a safety precaution. He said that we would have a full set of CT's done again in 6 months and then see him again at that point. He said that we would not have to have the MIBG again, unless there was something suspicious showing up again. He said that we was very pleased with how she was doing. We did discuss our concerns about how her hair is not coming back like it should. I expressed a desire to find someone who could find out why it is not coming back. He said that he would discuss it with some dermatologists at Emory and see who they recommend. He will get back with us on this issue.
Caroline got to attend her class Christmas party full time for the first time she has been in school. Last year she only got to stay for the first part of it before we had to leave to have scans. I made sure this year that her scans were on a different day. Both her and Katherine are out now for Christmas break while I have to go back tomorrow for one last day. The girls are both looking forward to Christmas and all that comes with it.
We wish all of you the best the Christmas season and we ask that you pray for us and all of those who are going through this devastating crisis.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, December 2, 2007 9:13 PM CST
Well i do apologize for taking so long to update the page. Today is Katherine's birthday and she is 14 today. Things are going well here at the Johnson household. Caroline is doing well. We are scheduled for scans on Dec. 18th. We have to be at Scottish Rite for CT scans at 8:30 that morning. That means leaving Bremen no later than 7 am that morning. She will see Dr. George in the afternoon to complete the day. She was originally scheduled to go to for scans on the 19th, but I was able to ask them to reschedule. She has not been to a Christmas party at school since she has started. The first year was due to her getting ready for her transplant and then the next 2 years she has had scans on those days. So this year, I asked them to help her out and they did. She is excited about Christmas and is asking for several different things. Hopefully Santa will be able to grant most of the requests. Today, we went to the Lighthouse Retreat Christmas Party. We were not able to stay for an extended period, since Caroline had her church Christmas program this evening and she was supposed to be at practice at 4 pm, but we made it back around 4:30 pm. The kids did really good. We did get to see our family partner from last year, Carolyn Norton, when we were at the party today. She is such a kind a loving person. Caroline did have her picture made with Santa and hopefully I will get that picture uploaded on the page soon.
As I said, Today was Katherine's 14th birthday. We took her out to eat last night. We invited her boyfriend and his parents to go out with us. She had a great time and said it was one of her best birthdays ever. We gave her her gifts tonight and she got some clothes and some shoes and then we gave her her big gift, a new piccolo. She almost started crying when she opened the box and found it. She has been playing since she got it. She just stopped a while ago so that she could go to bed.
Keep praying for us. Pray that Caroline's scans will go well and that things have stayed on the good side. Pray for all of those who are still battling the disease.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, October 23, 2007 4:54 AM CDT
Hello, I hope that you have been doing well. We have been pretty good around here. Caroline had a great birthday this past weekend as she turned 9. It is hard to believe that my baby girl is growing up. She had a fun birthday party last Thursday with several of her friends coming over for a spend the night party. We convinced Nancy's mom to allow us to have it at her house, as she has a little bit more room than we do. Caroline had a movie night theme and they watched a few movies. I will try to upload some of the pictures in the photo album page. The girls had Thursday and Friday off from school (Fall Break) and then both were in a parade on Saturday here in Bremen as the town had their annual Townfest. Katherine marched with the band and Caroline walked with her Brownie troop. Things are continuing to go well for Caroline. She has not had any problems with her health and we feel blessed. I cannot say the same about me, except that I am blessed also. I wrecked and totaled my motorcycle on the 9th of October. I tried to straighten out a curve and went off the road into a ditch. I flipped about 4 or 5 times and the bike probably flipped twice in a separate direction. The bike came to rest about 10 to 15 feet away from me pointing back in the direction I had come from. I was able to get up out of the ditch and discovered that I didn't have any broken bones, but did have a bad case of road rash on my left arm. I went to the hospital in an ambulance and was released from the emergency room. I was told by several who saw the accident scene that they could not believe that I managed to escape with no broken bones. I can only say that God was looking after me. Well I pray that you will be blessed.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, October 8, 2007 5:27 AM CDT
Hello to everyone. Well it has been 2 and a half weeks since we last updated. Things are going good around here. We are trying to finish up the first 9 weeks of school and hoping we can finish up ok. Caroline has a timeline project that she has to turn in on Tuesday. The project shows pictures through out her lifetime. It is interesting to look at how she has changed over the years, especially the year 2004. She started the year with a head of long flowing blonde hair. She finished the year with no hair. Of course it was the year that she was diagnosed and then began her treatment. Of course the best thing that is being shown by the timeline is that it continues on beyond 2004 and will continue. One thing that I have noticed by the pictures that she has on the board is that she has a smile on all of them. Her smiling has to be a theme that keeps us all going. I will admit there have been and will be some times that she does not smile, but usually it always come back. She has been complaining of her throat hurting this weekend and had a croupy cough Sunday morning. We will keep a watch and see if it gets any worse before we take her to the doctor. Katherine is doing great in band. They had a band competition on each of the last two Saturdays. They did a really good show and got 3rd in their class at the competition at Bowdon, and got 2nd in class this past Saturday at Central of Carroll in Carrollton. She has been pretty tired with an away football game on Friday night and then having the band competition on Saturday. On both nights, she did not get in till around 1 am. They have to go to Jefferson this Friday night. She wouldn't trade it for anything. Nancy and I are doing good. We spent Saturday from 12 pm to 11:30 pm at the band competition and discovered that we got nice and pink. Caroline stayed with her grandmother and went to Nancy's family reunion on both Friday night and during the day Saturday.
Please continue to pray for us and for those others who are fighting Cancer. Caroline won't have scans done again till December.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, September 20, 2007 5:26 AM CDT
I guess that I have not lived up to the plan of keeping the site updated every couple of weeks. I hope things with all of you are doing well.
Now for an update of the Johnson family.
Caroline is doing great. She is your typical 8 year old girl (about to be 9). She is doing good in school. She is in the middle of her school magazine sale and if you want to buy a magazine from her, please email me and I will set you up. She has been trying to sell to anyone she can. She even tried to sell a magazine to her sister. She is after the prizes you get for selling certain numbers. I had to purchase two myself. She was supposed to have been the grand marshall for the homecoming parade last Friday here in Bremen. There was a thunderstorm that moved through the area and it delayed the parade and then they cancelled the parade due to lightning. She was very disappointed. She started Girl Scouts last week as a Brownie. She is very excited about this. So we'll be hitting you up for cookies later on. That same night, I went to a function at the Univ. of West Georgia that a service fraternity put on. They were supporting the Rally Foundation. They were doing a bicycle ride through Carrollton on their way from Birmingham to Atlanta. They did the ride that day in honor of Caroline and I spoke on her behalf since she had Girl Scouts. Health wise, she is doing wonderful and even has a little more of her hair coming in. Hopefully one day, she will have her long flowing hair back.
Katherine is doing great and loves being in band. They are getting ready for their first band competition next week. She is doing good in school, but some of her classes are a little more challenging this year. I have confindence in her.
Nancy is still working every Tuesday and Wednesday at the preschool at church. She enjoys doing this and finds the work with the two year olds rewarding. It also allows her to be on call to do whatever needs to done for the kids.
I have deacon ordination on Sunday. Please pray for me that it will go well for me.
Continue to pray and support all of our friends who are still traveling on the dark road of cancer.
Charles, Nancy, Katherine and Sweet Caroline
Monday, August 27, 2007 5:17 AM CDT
I hope all of you are doing well. It has been longer than I thought since my last post. Everything seems to be going good here at the Johnson household.
Caroline has been doing real good, with no health issues (except for an occassional sneeze). We don't go back for scans till December. She is doing good in school and enjoys her teacher. She is already making plans to do the school talent show, even though she does not know when that will be. I think she plans on singing or dancing to some music from High School Musical 2. When it came on TV last week, she had her cousin come over to spend the night so that they could watch the movie.
Katherine is doing good in school and loves being in marching band. They were supposed to have marched this past Friday night at a scrimmage game, but the weather was bad and they cancelled the game about 10 minutes after they had started. Her first real game is this next Friday night when Bremen plays Heard County there. She is loving her language arts class at school, but does not seem to be liking her reading class that much. She will do well though.
Nancy is doing good also. She is getting ready to help out with the preschool program at the church again this year. She will be an assistant for 2 days a week. She also will be helping out with the church's kids music programs on Monday afternoons.
Things are going well for me. School has been going smooth so far this year. I was elected as a deacon at church on Sunday. This is a big honor and I am actually one of 4 men elected who have not been ordained. I guess the church wanted some new blood.
Keep praying for Caroline and all of the other kids touched by cancer.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, August 9, 2007 5:17 AM CDT
Greetings to everyone. Things are going well here at the Johnson household. The girls started school yesterday and things seem to be going good for them. Caroline is in Ms. Jackson's class in the 3rd grade this year. Ms. Jackson was Katherine's 3rd grade teacher also. So far out of 4 years of school for Caroline, she has had the same teacher that Katherine had for 3 out of 4 years. She was excited that there is a girl who is blind in her classroom and that she is making friends with her. She was so excited to be starting school and getting to see her friends.
Katherine started 8th grade and is still trying to figure out all the new things going on this year. She is loving band and her band director just can't stop bragging on how well she is doing. Marching band is tough, but she seems to have everything down real good. She has made several new friends from being in marching band.
Nancy is doing good as she is the shuttle driver to get the girls back and forth and is waiting for preschool to start after labor day. She has been helping her mother with some catering jobs lately.
School starts for me this morning. We are expected to have around 515, but we have had ton of moveins this last week to register, so we'll see. I have some good teachers and staff members.
Thank you for all of the prayers that you have given up for Caroline and our family. Please continue to pray for us and I will try to update in a couple of weeks. When things are going well it is hard to update as often as when things are going bad. At some time, we will probably say it is time to end the journaling, but for now we will do it every couple of weeks.
Charles, Nancy, Katherine, and Sweet Caroline
Friday, July 20, 2007 6:13 AM CDT
Finally, I post again.
It is so hard to keep up writing on the webpage when things are going so good. I am going to make a point to update every other week.
We got home from Florida last Sunday night. We had to go to Jekyll Island for a conference and stayed there from Saturday July 6th thru 11th and then left to go to Flagler Beach, Florida till the 15th. The girls had a great time and now have nice dark tans. Caroline really enjoyed the time in Florida since she got to play with her cousin, April. I did a stupid thing while in Florida. I was on a surf board with my prescription sunglasses and I got hit by a wave. When I came up out of the water, I had no more sunglasses. That was about a $300 mistake not to take them off before I went in the water. The next day, my brother in law made about a $600 mistake with his. Life goes on though.
Katherine started rookie camp for band yesterday and finishes that up today. Regular band camp begins on Monday. She really is enjoying this and is happy that she joined the band this past year. She is really growing up and becoming a pretty young lady.
Continue to pray for us and for all of the children who are going through the cancer journey.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, June 28, 2007 6:14 AM CDT
We returned last Saturday from the Lighthouse Retreat and boy did we have a great time. We met so many new friends and such sweet people. Caroline had fun, but there are very few times when she does not find a way to have fun. Katherine met some new friends and our housemates, the Millers, were such wonderful people. There were 4 other families there who had a child with Neuroblastoma and it was great to hear their stories. I cannot describe how beautiful that Rosemary Beach is. The girls say that they loved Rosemary more than Seaside last year (Nancy still likes Seasides community atmosphere better). We had some great family partners to help us. One of them, Jen, was nurse from New York who came down and Caroline just fell in love with her. Caroline did a little dance number for the talent show to a piece of music from "Happy Feet." Jen made a costume of a Penguin to dance along with her. I will give a few more details later.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, June 12, 2007 9:07 PM CDT
I wanted to let you know that we got the results of Caroline's scans on Friday afternoon and they were negative. So we are clear again. We will have a CT done again in December and we are once again on the 6 month cycle of scans. Caroline is happy that she won't have to have the MIBG for another year (she hates taking the SSKI because it tastes so terrible). Caroline has been sick for over a week and she went to her pediatrician yesterday and she has an ear infection in one ear and has swimmer's ear in the other. She has been told that she cannot go swimming for 7 days and then after that she can only go in with ear plugs. She got an antibiotic and ear drops. We leave next Monday to go to the Lighthouse retreat, so hopefully Caroline will be ready to enjoy the trip. We will be at Rosemary Beach this year.
Continue to pray for all of our friends.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, June 7, 2007 5:27 AM CDT
Yesterday started off as if it was going to be a quick day, considering that we had an appointment with Dr. George at 1 and the MIBG scan at 2. Nothing goes as plans. We got in to the doctor's office before 1 (around 12:45) and finally got back to see Dr. George around 1:40. We then had to rush through the appointment so we could get over to the hospital and we walked in the radiology waiting room at 2 pm. When we walked in, they told us that they had to put an inpatient through first and we would have to wait for 40 minutes. We waited for about an hour and a half. They brought us back and then a doctor came in and said he needed to have his patient seen first because she had been sedated. The techs came in and asked if we would mind waiting a little longer and we said that we would wait. They told us that we were not as critical a need as the other patient. We understood this and said it was no problem. Caroline actually got tired and fell asleep in the chairs outside of nuclear medicine. A nurse came by and asked us could she bring a warm blanket for Caroline and we said yes. Nancy said that while I was gone to the restroom with Caroline that a doctor had come by and asked if he could do anything to help us with. The people there at Children's are always so nice and wanting to do anything to help you. We finally got in around 5. The woke up to go in and while laying on the talble, she fell asleep during the first set of pictures (about 20 minutes). We don't know how any of the scans looked, but from the pictures that I saw yesterday, they unofficially and nonmedically looked good. We got out of there at almost 6 pm and when we got to I-285 it was a very slow go. It took us 30 minutes to get from 400 to I-75 (about 5 or 6 miles). We got home at 7:30 and were glad that we were home.
I forgot to mention that while we were in the waiting room at the doctor's office, we got to see Les. Les is Ryan's dad and he talked about how good the scans looked for Ryan earlier in the day (he had his MIBG at 8 am). They mentioned that they may be getting to go to the Lighthouse retreat the same time we will be going, on June 18. Please continue to pray for Ryan and all of the other kids who are going through tough times.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, June 2, 2007 12:11 AM CDT
I know that it has been a while since I have updated, but when things are going well, there seems to be less of a need to update. School is out and both of the girls got their grades and made straight A's. Katherine got her CRCT results back and exceeded in all 5 tests and Caroline exceeded in 2 of the 3 tests for her. I have some smart girls here. I guess they get it from their momma.
Pray for us next week as Caroline has scans on Tuesday and Wednesday. She has to be at Scottish Rite on Tuesday at 10:30 to start taking contrast for her CT and then get her injection for the MIBG to be done on the next day. We will let you know of the results.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, May 17, 2007 5:19 AM CDT
I apologize for not updating since almost 2 weeks ago. Things have really been hectic around here with the end of school approaching. Nancy finishes up with her kids today at the preschool while the girls and I have till next Friday. Caroline has field day today and is excited. On Monday night, Caroline got a hit and scored a run. She was so excited and after the team won their game, the coach took the team out to get an ice cream. It was the first game that they had won all season. 12 - 2 is a nice margin of victory. Katherine had her band concert last week and played real well. She has been busy as ever in doing a lot of projects for the end of the school year. I think each teacher wanted them to do some sort of project. I have been busy with finishing up the school year and trying to hire teachers and getting test results back.
Pray for all of us that we don't go crazy before it is all over.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, May 6, 2007 8:51 PM CDT
Well, another week has come and gone. Things are going well for us here at the Johnson House. The girls went after school on Friday to see the new Spiderman 3 movie. I was at Six Flags with some of our gifted students for math and science day on Friday.
We are all anxiously awaiting the remaining 15 days of school. Caroline has 2 or 3 softball games remaining for the season and Katherine has 2 soccer games left. I think our social calendar is filled for the rest of May with the girls school and athletic events and my school events. Please pray that we will survive.
Please pray for Ryan, as his cancer is making a return and if you haven't read his site, please do so. I think I posted his site address in a previous post.
Well I wanted you to know that we are all doing well and please keep praying for us that Caroline's cancer does not make a return.
Charles, Nancy, Katherine, and Sweet Caroline.
Wednesday, April 25, 2007 9:02 PM CDT
Things are going well for us here at the Johnson house. We are gearing up for Relay for Life on Friday evening. At school tomorrow we are having our End of CRCT celebration/Relay for Life Program at the end of the school day. We are doing several things to get ready. We have had a kiss the pig contest going and I fear it may be me kissing the pig. We also are having a teacher student talent show, and I am doing a little Elvis. If we reach our school goal of $3000, they are going to tape me to the wall of the school. So it should be a fun day for me tomorrow.
Caroline and Nancy are going with the 2nd grade to Stone Mountain on Friday. They should have a good day and hopefully will make it home in time for us to make it to the Survivor's Reception at the relay. Caroline also has a boyfriend now. He is a boy in her class and I don't know if I can handle having both of my girls having boyfriends.
Well we have 4 weeks of school left and then summer begins. Pray for all of our friends, especially Ryan.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, April 17, 2007 5:30 AM CDT
Hello from the Johnson house. Things are going well around here. The girls have been doing great and enjoying life. Caroline has been enjoying softball and played again last night. Last night she did not get a hit (her first time at bats not to get any hits) but did not care. She just enjoys being there and playing. When the coach had here not go out on the field for an inning, she raised her hands and went woo-hoo. She was not wanting to go on the field, she just does what the coach says with no complaints. She announced to me yesterday that she has a boyfriend at school. She is proud of that. Now both of my daughters have boyfriends (oh what am I to do?). Katherine went to Blueridge with her 7th grade classes for a science field trip and she had a blast. She had to hike, look in a creek for animals, disect owl pellets, and other science stuff. She played soccer Saturday and her team came up just a little short, losing to Carrollton 3-2. My school begins the CRCT today and the girls here in Bremen do not start till next Monday. Pray for all these kids taking the tests.
Please pray for Ryan. His scans came back last week showing that his Neuroblastoma has returned and he begins a new treatment schedule soon. You can visit his website at www.superryan.blogspot.com and give them some encouragement. Ryan and his family were the first Neuroblastoma family that we met after we discovered Caroline's cancer. In fact, we were one treatment behind him back in 2004 - 05. You have read my fears for returning Neuroblastoma on here before. With his returning and he doing the same treatments that we did, it scares me a little for us. But, we have faith that God will take care of this monster for us and for him.
Charles, Nancy, Katherine, and Sweet Caroline.
Sunday, April 8, 2007 6:16 AM CDT
Happy Easter!!
Today is the day to remember the risen savior.
I apologize for not writing for the last couple of weeks. The girls are finishing up their spring break and go back to school in the morning. We got back Friday from visiting Pigeon Forge and the Great Smoky Mountains. We had a great time and the girls visited the National park for the first time. We took a lot of pictures and will update the photo album this week with some of them. Things are going fairly normal for us as a family. Caroline will have scans again the first week in June. She is going to have both the CT and the MIBG. She is having the MIBG again to confirm what the doctors believe they saw in February, that the uptake was due to her anatomy and not a new tumor. We found out last week that we are going to the Lighthouse retreat again in late June. This will be our second trip, with our first being last June. We will be going to Rosemary Beach this year. The Lighthouse retreat is a week in which the family is taken care of and to take your minds off of cancer. There is a link at the bottom of the page for you to find out more about the Lighthouse retreat. Please pray for one of our friends, Ryan, as his hormone levels are rather high and that is something that is not wanted. The Neuroblastoma being present can raise certain hormone levels and is an indicator of something going on. It is not always true, so you then have scans to see if there is any activity.
Caroline has two softball games coming up this week. One on Monday evening and one Friday evening. She really is enjoying this. We'll let you know how things turn up. Katherine has soccer games each Saturday and have not played in a couple of weeks. Maybe it will start warming up soon.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, March 25, 2007 6:42 AM CDT
Caroline had a great day yesterday with her first softball games. She played two games on Saturday morning as it was their opening day. All 3 of the Bremen teams for ages 7 & 8 played each other. Caroline hit the ball at one of her at bats in the first game, but she was thrown out at first. Everybody in the stands were cheering her on. She got to play outfield for the last two innings to finish up the game. She was happy and we came home for about 30 minutes before she had to be back for her second game. I had to take Katherine to her soccer game at 11 and Caroline had her 2nd game at 11:30. Katherine's team has been struggling a little, but they did get their first goal of the season yesterday and played a lot better than they have the rest of the season. While I was away, Caroline got a hit in her first at bat and did make it to base when the first base player could not handle the ball. Nancy said that everybody in both stands just exploded when she got on base. I guess everyone is so proud of where she is right now. I had one of the other dads tell me at practice that he thought that no matter how well Caroline plays, that she is a winner just to be able to be there and play. Katherine and I made it back to watch the bottom of the 4th and the 5th inning of the game. Caroline got to bat a second time, but struck out at the plate on three swings. She said that the day had been one of the most fun days of her life. I have never been more proud of her than I was yesterday.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, March 13, 2007 8:07 PM CDT
Things are going well here at the Johnson house. Katherine had her first soccer game last Saturday and they came up a little short and lost to one of the Douglas county teams. They are playing each Saturday. Caroline did not get to attend her first practice last Friday night due to a fever, but she went to Saturday morning's for a little while. I don't think that she felt the best and she was very cold. We left after about 20 to 30 minutes. She has been feeling better this week, except for this cough that just won't go away. She has her next practice for softball on Thursday, but I doubt that she will get to play that night due to the rain that is expected.
Nancy's grandmother passed away last week and she was buried last Thursday. She was 82 and my dad came over and helped with the services.
It is nice to have just normal things going on for a while and not have to worry about any cancer things. We are working toward Relay for Life at school and the kids are working hard to raising money.
Keep praying for us and other families that have been touched by cancer.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, March 5, 2007 5:25 AM CST
I hope that you have had a great week. Things are going good around here (except for Nancy's bout with the stomach virus last Thursday). Caroline had her evaluation for softball on Saturday morning. She had to catch 3 balls that were grounders and then throw to first base. She then had to take 3 at bats and try to hit them and then on the third run to first base. There were a bunch of girls trying out and she was called last night by her new coach. The coach is one of the mothers of one of her friends. She was happy and has her first practice this coming Friday afternoon and Saturday morning. We have already had to buy her cleats, a glove, a bat, and a few other accessories. We now have to buy her a helmet and to be like all the other players, a bag. We have been out each afternoon practicing her throwing and her hitting. Pray for her and please pray for me.
Katherine was in her school beauty pageant this past Saturday night. She was so lovely and looked so much older than 13. She wore a pretty gold gown has had her hair cut and she was just the prettiest girl there (especially in mine and Nancy's opinion). She did not make the top 12 (there were 61 girls in this thing). I am so proud of her wanting to do this and coming out of her shell. I appreciate my mom and dad for coming over and also Nancy's mom.
Please pray for Nancy's grandmother. She is in the hospital for an infection and is not going to last much longer. The doctors pulled everything off of her (fluid, monitors, oxygen, etc.) and now they are waiting for the end to come. It was strange that when you look at her in the hospital bed, there seems to be an aura around her body. I was told about it and last night I was able to see it for myself. They have asked me to sing a couple of songs at the funeral when she does pass on.
Remember all of us,
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, February 21, 2007 2:33 PM CST
We got home just a little while ago and had a good visit with Dr. George today. The important news that you have all been waiting for is that it appears that there is NO NEW CANCER.. He explained that the MIBG isotope is taken up in 3 places in the body (liver, spleen, and jaws) and that as the body processes this it moves into the gut or intestines. From the CT scan it showed that there is some of her gut that has filled in the space that once held her tumor. He said that with Caroline's insides being totally different than everybody else (due to her birth defect and them having to stuff all of her insides back into her on day 7 of life and then Dr. Ricketts stuffing them back in after her tumor resection) things are just showing up strange. Dr. George was relieved when he talked with us today. He feels that things are ok now and that we will go back to having scans every 4 months (we were at the point that it was every 6 months) and will have both the CT and MIBG in June. He said we will do this since she gave us a scare. We appreciate all of the prayers that were said on her behalf and believe that God answered these prayers. Please continue to pray for her that God will keep her cancer free and back to NED (no evidence of disease). Please pray for these other children who are going on this terrible journey. We saw a lot children today who are in the middle of treatment.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, February 15, 2007 5:09 AM CST
Well the scans are done now and the waiting begins to find out what they really mean. Caroline did her MIBG yesterday and was in a really good mood. She played around with Seth, who is a new tech in Nuclear Medicine. He kept her laughing most of the time. We got in around 3, but actually arrived early and could have gotten the scans completed early if registration had told them we were there. But, that is neither here nor there. We finished up the scans around 4. The computer that the doctor looks at the scans was down, so she had to come over to where we were and look at them to see if she needed any further pictures. She told us that she had seen Caroline the day before, of course from the inside, meaning she had seen the CT. I asked her if she had seen anything on the CT and she said that she was encouraged from what she saw on the CT because the spot where the MIBG is showing something appears to be where the tumor was and that it is filled in by what appears to be her gut. I asked her how things appeared on the MIBG and she said that it is still showing a spot, but that she did not have the previous scans to compare to and couldn't tell us anything till she had a chance to see those. So again, we have a picture that is not clear to us. We go back next Wednesday to see Dr. George and hopefully the picture will become more clear at that time. In December, the CT was clear but something showed up on the MIBG and that is what seems to be happening again. Please pray that God will show the doctors what they need to see. Pray for all of us.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, February 13, 2007 8:41 PM CST
Well round one of scans are complete. We did the CT today around noon and then had to wait till about 2:15 to get the MIBG injection. I wish that Radiology scheduling could get together with Nuclear Medicine scheduling. This was the first time that we had to wait around to have the injection. We had to wait for the isotope to arrive in the afternoon. Nuke med told us that we should have had the CT scheduled for later in the day. Oh well, that is over with hopefully till later in the year. They have moved CT to the new part of the building and they have a new waiting room that is part of the emergency/ortho peds waiting area. It was very nice and we now don't have to get the IV in those small cubicles. They have nice new rooms to do this in now. We arrived on time around 8:30 and Caroline started drinking her contrast around 9:00. She did well on the first glass, but had a hard time getting down the second cup and that is why we didn't have the scan at 11 like we were scheduled. Over all though, she did well. The nurse put in the IV in her hand (we insisted this time they put it there) and she got it in on the first time. Caroline did not even cry (that much). We have no idea how the pictures have turned out, but the radiologist insisted on taking a couple more after he looked at the first ones taken. We have to be there tomorrow afternoon for her MIBG scan at 3 pm. Caroline's teacher is going to have the students exchange their valentine's cards in the morning while she is there. Caroline tried to talk the Nuke Med nurse into trying to reschedule her MIBG scan to the morning. The nurse said that she could, but the only time they had open was 8 am. Nancy and I said that the 3 pm time was just fine. I hate driving on the north side in the morning rush hour (the afternoon today was almost as bad as the morning).
I forgot to mention that last night, my dad called to talk with Caroline. While he was talking to her, he asked if they could have prayer together. We heard only one side of the conversation while we were at the dinner table. The part we heard was the blessing. She told us that when he asked if they could pray, she offered up the one that she could think of at the moment. Dad prayed for her while she prayed for the food. It is interesting living with her sometimes.
Keep us in your prayers and thanks for those that have already been lifted up.
Charles, Nancy, Katherine, and Sweet Caroline
Friday, February 9, 2007 10:28 PM CST
An update on Caroline today. She woke up in the middle of the night last night and started throwing up. She did this several times into this morning. We think that she must have caught a stomach virus. She seems to be doing OK tonight, but she has not eaten more than maybe 4 spoonfulls of chicken broth. She wanted to go to the Daddy/Daughter dance so bad tonight, but we knew that she did not need to go. That was a battle, trying to convince her that she didn't need to be there and she believed that she felt good enough to go. Katherine came to the rescue when she told her that she would play with her and that finally took her mind off of going to the dance. She didn't really want to dance with her daddy, as much as she wanted to go and be with her friends. This evening, one of her best friends, Taylor, called her to check on her. Caroline barely got a word in, but it was sweet and it brought a big smile to her face.
Continue to pray for us.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, February 6, 2007 4:22 PM CST
Things are going well for us at the Johnson household. The girls are doing well in school and I am over my sickness of last week. We are anxiously awaiting next week's scans. We have the CT on Tuesday and the MIBG on Wednesday. Caroline is not happy about having to do the MIBG on Valentine's day. She has not been able to go to a Valentine's day party at school for the last 2 years and this makes #3. I think I mentioned why she missed them last week. She really cried hard about it last night and she told us that she didn't want to have a scan that day and we told her we didn't have a choice. We said that we definitely will do our best for next year.
Katherine is continuing to get better and better on her flute. She is going to be in a beauty contest the first week of March. It is a school contest and we have been working to help her fill out her application. She has to say what she wants to do in life and things like that. She will make a pretty contestant.
Continue to pray for us in that God will take care of what is going on inside of Caroline's body. Pray that he will give us strength to face whatever may come.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, January 30, 2007 5:04 PM CST
I apologize for not updating in the last few days. I have been under the weather with a stomach virus of some sort and have missed the last two days of work. I am hoping that I will be back to normal by tomorrow. The girls and Nancy have not been effected by the bug and hopefully will not have to deal with the pain of last couple of days.
Caroline is doing well and has not had any physical problems to mention. We are still anxiously awaiting our next scans next month. The one downside about Caroline having her scans on Feb. 13 and 14, is that she will miss the Valentine's day party for her class. She has always missed this party the last two years. Two years ago she was at Egleston in the middle of her second stem cell transplant and then last year was having a scan. She was not happy when we told her that she would have to miss it again this year. Since we don't have to be at the hospital for her MIBG scan till 3 pm, we are going to see if her teacher will allow her to exchange her valentines that morning. I know that this is a minor deal to us, but to her it is a big deal.
Caroline has decided that she wants to sign up for softball this year. We went and registered her on Monday. She is determined to play ball this year. She hasn't participated in sports since soccer after her treatment ended. She has to have an evaluation in March to determine what team she will get to play with. She does not have much experience with this, so pray that she will do well.
Katherine is doing good in school. She is doing exceptionally well at playing her Flute. She started playing in November and practices every day. She says she almost has one of her songs memorized and is working at her second piece getting down almost as well. She really loves playing.
Continue to pray for all of us.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, January 25, 2007 12:03 AM CST
I just got word from the doctor's office and the report shows a clear bone scan. Thank you for your prayers. We still have to go through the other 2 in Feb. (CT and MIBG), but this is one less worry for us. Keep on praying.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, January 24, 2007 9:03 PM CST
New Update
Caroline did not make it to school today. She was very sore from her shots and could not walk this morning or even use her right arm. She had a slight temperature and she ended up staying with her grandmother. She was able to walk more this afternoon. She still was rathr hot this evening. I think that she will be able to go to school in the morning. We still have not heard anything from Monday's scans. I am going to put a call in tomorrow to see if they can tell us anything. I don't even know if Dr. George has seen the results. I will call Erika (his nurse) to find out.
Wednesday, January 24, 2007 5:11 AM CST
Caroline had her shots yesterday. She had to get 5, with 2 in her right leg, 2 in her right arm and 1 in her left arm. I called Nancy on my way home from LaGrange and they were in the Dr.'s office. Caroline was upset at the thought of having to have 5 shots and I talked with her and reminded her how brave she had been on Monday. That really does not do much for an 8 year old girl. But I told her I loved her and that she would do fine. I had to go to a seminar last night, so I didn't get to see her till after 9:30. I asked her how they were and she told me that they did not hurt at all. She told me that the nurse said that these were magic shots and they wouldn't hurt. She said it was magic. She has only complained about her legs being sore before bed last night. The Lord has made her strong and we know that whatever may come of all of this, he will continue to bless her.
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Monday, January 22, 2007
Today has been a very looooong day. We made it to Scottish Rite at 10:30 and were supposed to be in for her injection for the bone scan at 11 am. We got in for the injection a little after 11 and then they had to get a line in her arm. I mentioned that she has not been successful in having her arm stuck. They said that would try it anyway. They thought that they had a good line and then sure enough, it blew. I then suggested that they try her hand. The hand worked until they were almost finished and then it blew. They checked to make sure that they had gotten most of the isotope in her and they determined that they had. We were then told we could leave and make sure that we were back at 2:30 for the scan. We decided to leave the hospital and go to Perimeter Mall for lunch and to look around to waste some time. We got back to the hospital at about 2:15 and thought it would not be a long time before we got in, but that was not to be. The guy from nuclear medicine came back at about 2:50 and said it should be about 20 minutes before we would be called back. He said that there had been a problem sedating someone earlier and it had knocked them off of their schedule. At about 3:30, the guy came back and said we should be in within 10 minutes. That time also came and went. At about 4:00 they came back and took us to wait outside Nuclear Medicine. We finally got in around 4:30 (2 hours after we were supposed to be back for the scan). The scan lasted for about 45 minutes and we were finally able to leave and come home. We have no idea when we will hear something. We figure if the scans are clear, we should hear something within the next couple of days (we hope). But what if something does not look right? Will they wait till after we have our next 2 scans (Feb. 13 and 14) or wait till we have our next doctor visit (Feb. 21)? I hope that it will be neither in that I plan on calling by Thursday if we don't hear anything any earlier. I have a workshop in LaGrange the next two days, so I will be back in my office on Thursday and have time to call.
Let me tell you that Caroline did so wonderful today. She had a great attitude an when it came time to get stuck, she was very brave and held her arm out for both tries. She had her famous sense of humor going. When the man putting in her line said that he had to do good for his boss, Caroline asked who was his boss. He pointed to the nurse standing behind him and she said "your boss is a girl?" Then after he said yes, she said, "girls are better than boys, girls are better than boys!" She was a chatterbox and did not pitch any fits today. She did buy a stuffed animal at the gift shop and even paid for it with her own money. She was so proud that she bought it and even did comparison shopping to make sure it fit within her budget.
Please continue to pray for us.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, January 20, 2007 11:16 AM CST
We got a call yesterday afternoon telling us our schedule for Monday's bone scan. We have to arrive at Scottish Rite at 10:30 AM so they can put an IV into her hand. They will do the injection at 11 am and then she has to wait 3 hours for all of the bones to absorb the injection. She is to have her scan at 2 pm and they said it could take 1 hr. to 1 1/2 hrs to complete the scan. I had forgotten how long this process took. She hasn't had a bone scan in a couple of years. Please pray that this will go well for us and that her scans will come back negative.
Caroline had two of her friends over last night and one spent the night. They had tons of fun and it was nice and lively. It was interesting hanging out with 3 2nd graders. Katherine went to her friend Lauren's house and watched scary movies. She got home this morning.
We continue to have faith that God will take care of everything.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, January 16, 2007 5:25 AM CST
Things are going normal here at the Johnson household. The girls enjoyed their extra day off from school yesterday. Katherine had a friend stay over after church on Sunday night. Caroline has invited 2 girls to come over on Friday night and keeps asking me "now home many more days till my sleep over?" Things seem to be as normal as possible. Caroline had her first major bike wreck on Sunday afternoon. We were riding down a hill that is near the house and Caroline decided that she needed to scratch an itch. She took an arm off the handlebars and when she went to put it back up, the bike started wobbling and she crashed on the pavement at the bottom of the hill. I was in such a hurry to get to her, that I dropped my bike and broke the front brakes somehow. She was screaming when I got to her and she skint (I guess that is a word?) both of her knees up, an elbow and part of her left butt cheek. She keeps fussing about having to wear her helmet, but after her fall she told me that she sure was glad that she had her helmet on. She also told us that she was going to take some time off from riding her bike.
She has not complained of her legs hurting for a while, but has started complaining of her stomach hurting. When you are waiting around to find if cancer has returned, it seems like we worry about every type of pain that she tells us about. At least with the pains from the bike wreck, we know what is causing those. Please remember to pray for her as we have the scans coming up this month and next. She will have her bone scan next Monday. She went to the dentist yesterday for her cleaning, and no new cavaties.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, January 9, 2007 5:22 AM CST
UPDATE
We found out yesterday when our scans and doctor visit will be. She will have her bone scan on Monday, Jan. 22 at 11 AM, her CT on Tues. Feb. 13th at 11 AM, her MIBG on Feb. 14th at 3 PM and the appointment to see Dr. George on Feb. 21st at 10 AM. Please pray for Caroline and remember to pray for her at these times.
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Sunday, January 7, 2007
Things are going well here at the Johnson household. We are awaiting to hear when Caroline's different scans will be scheduled. She is supposed to have a bone scan this week, but haven't heard back from Scottish Rite about that test. We did get a call Friday from radiology that she is scheduled for some scan on Friday, Feb. 16th. We have no idea what scan and we are guessing it would be the CT. I am going to call them tomorrow to find out when and what is being scheduled.
We appreciate all of the prayers and encouraging words since we found out there is something that showed up on the MIBG last month. Caroline seems to be as normal as can be. She has not had any leg pains lately and has only complained about an arm pain today. I am praying that these pains are just normal growing pains. Caroline does not to be aware that we are a little worried and we don't want to scare her for any reason. We did let her teacher know about what is going on and told her that we would let her know if we found out anything. I met with my superintendent last week and told him about wht was going on with Caroline, so that he could have a heads up in case this turns out to be cancer coming back. He told me that they would work with me. I informed my teachers when they came back on Wednesday and told them if I had to be out for an extended amount of time what would occur. I want to be prepared just in case. I have faith that God will take care of all of this. Maybe it will be just a bad scan and the new ones will be different.
I think the hardest part of this for us is the waiting. When you don't know if there is something there or not, you think about all kinds of things. Please pray that this time will pass easy for us till we find out what is going on in that little body. We appreciate all of the prayers and the comments in the guestbook. Please leave us a note as it really helps us out knowing that you are encouraging us along.
Katherine is doing great and is looking to finish up the 9-weeks up this week. She is doing great in band and loves the flute.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, January 3, 2007 11:02 PM CST
NEW UPDATE
Caroline's urine tests came back and show that her catechlomine levels are all normal. This means we now have to wait for the scans we will have to redo. This at least shows us that if it is cancer, it is not too active (yet). Keep on praying and hopefully everything will come up normal.
January 2, 2007
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UPDATE
I heard back from Dr. George on Caroline's blood and that her potassium levels were normal and that would not be a cause for her leg pains that she has been having. Still no word on the urine tests. I will update when I get that information. Also, no idea on when the bone scan will be. Thank you for all of the prayers. Please keep them coming. A big thanks on the notes of encouragement on the guestbook pages.
Friday, Dec. 29th, 2006
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I hope that you have enjoyed your Christmas holidays and are awaiting New Years. The girls have had a great break and got a lot of gifts from Santa, us, and their grandparents. I again apologize for not updating, but I was waiting to hear something back from the scans she had 2 weeks ago before I posted again.
We went to see Dr. George today. One of the first things he did was to ask how things were going with Caroline. We told him of the little things we had noticed (leg cramps, loss of high frequency hearing in the right ear, a small knot on her rib cage). After going over these things with us he then brought up the scans and he said that there was something that is showing up in the one of the scans. I knew something was going on when we had not heard from him or his nurse for the past two weeks since the scans. We knew that others who had scans around the same time had already heard. We cancer families keep up with each other. The scan that was not so good was the MIBG scan. This scan uses a radioactive isotope that looks for the neuroblastoma cells. He told us that there is a slight uptake showing in an area where she has some calcification of the previous tumor. He said that at first he didn't notice it, but that the radiologist pointed it out and he then said it was there. There is nothing showing up on the CT scan so it does alarm him. It is bothering him that the scan is showing something that the previous 2 MIBG scans have not shown. He said that it will be interesting to see if the catecholomine numbers are up. Catecholomines are hormones that are put out by the sympathetic nerve system and if there is active neuroblastoma, then these numbers can be higher. We will find out the results of the urine tests next week. Caroline has had pains in her legs from cramps in the middle of the night several times over the past month or so and Dr. George said it should be muscles, but to be sure he is having Caroline do a bone scan in the next 2 weeks. We also drew blood again to check her potassium levels and have not heard back from those results yet. We are hopefull that the potassium level is low since that can cause leg cramps. He is also ordering a new CT and a new MIBG in the next 6 to 8 weeks. If there is something growing, it should show up when we do the next scan. It is frightening to think that we may have to go through this again. We have faith that God will work these things out. We ask that you lift Caroline up in prayer that things will look normal in the coming scans. We are concerned, but will not panic till we have proof that something is there. God will deliver. I did talk with Dr. George about treatment plans in case that the cancer is coming back. He said that it would be extremely tough to beat, but that there are new treatment protocals for recurrent neuroblastoma and that we would fight it hard if it is back, but that we first need to find out what is going on inside of her. I promise to update more often in the coming weeks. Please drop us a note on the guestbook page.
We are still surviving and living in faith.
Charles, Nancy, Katherine, and Sweet Caroline
Friday, December 15, 2006 5:30 AM CST
Merry Christmas
I apologize again for not updating for a while. I wanted to update today to remind you to listen to 94.9 on your radio. They are doing their Wish-a-thon and see if you can listen for Caroline's story. It goes for 36 hours, so we don't know when they will play her story. You can also donate.
Caroline went to Scottish Rite on this past Tuesday and Wednesday. She had her CT and MIBG injection on Tuesday and then she had her MIBG scan on Wednesday. She did great in her time there. We won't know any of the results till we go back to see Dr. George on Dec. 29th. Hopefully if there is something that is of a concern, then they will let us know before then.
The girls are finishing up school today. They are eagerly awaiting the big day. We will go next Friday to my parents' house to spend Christmas with my family and come home on Saturday. We will spend Christmas here.
I wish all of you a merry Christmas and hopefully I will update before too long.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, November 25, 2006 7:27 AM CST
I hope everyone had a great Thanksgiving day. We have so much to be thankful for with our family. We are so thankful that Caroline is doing so wonderful. She is growing and being so active each day. It is hard to believe that it was a year ago today that we were at the airport flying to Orlando for our Make-a-wish trip. We had such a wonderful time. Sometime in December, be sure to listen to 94.9 to listen for Caroline's Make-A-Wish story. They are doing their radio-a-thon for Make-a-Wish, and Caroline told her story to broadcast. It is definitely a different story, as she had the interviewer laughing the whole time and her talking about snot. We go on the 16th over to Atlantic Station in Atlanta for the party to wrap up the radio-a-thon.
Th girls are doing great and are working hard at school. Katherine is about to be "13" and I will offially have a teenager in the house. We are having a party for her on her birthday, Dec. 2. It is one of those that she invites boys to. Pray for me.
We traveled down to visit some of Nancy's family in Florida on Wednesday. We drove down to Jacksonville that day and got there at about 6 pm. We had lunch with them the next day and then drove back later on Thursday and got home at about 11 pm. It was great to see all of the Leopards (that is their family name, not a bunch of cats). It was great to have them see how well Caroline is doing. They are such sweet people (even Jack).
We go over on December 3rd for the Lighthouse Christmas party in Alpharetta. It will be great to see some of our great friends that we got to meet this past summer. We are looking forward to this.
Please remember to pray for us this next month. Caroline has scans on December 12 and 13. They will do a CT on the 12th and also give her the MIBG injection on that day, then on the next day they will do the MIBG scan. Please pray that these scans continue to be negative with nothing showing up. Our goal is to be Cancer Free for 5 years so that she will be finished with checkups (and as of this month, we are 1 year down with 4 to go).
I will try to write more often. I have found out that when things are going well, you don't write as often. So, in a way, pray that I don't have to write that much. We want to live as normal a life as possible. In case I don't write before Christmas (which I probably will), Merry Christmas.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, November 7, 2006 5:14 AM CST
I have not updated in a couple of weeks so I felt I needed to let you know what has been going on with the Johnsons. Caroline has been a lot better and finished up her antibiotics and doesn't have to go back for more shots till after Thanksgiving. We did find out that we go back for her CT and the MIBG scan on December 12 and 13. We won't see Dr. George till Dec. 29th. He is only in the office 2 times in December, the 15th and 29th and since she will be missing school 2 times that week, we felt that she could wait 2 or 3 weeks to see him. Caroline had fun during Halloween. She dressed up as Super Girl and enjoyed going trick or treating. She continues to do well in school. At midnight, last night, the girls forced me to go to Walmart so that I could get them the Cars DVD. This is not the first time I have had to do this. In fact, when I got there, the lady in the Video department asked me about coming again for my daughter. Katherine is doing good. She has decided that she now wants to be in band. We tried before she started middle school to get her to be in band, but she said no. Now she has changed her mind and wants to play flute like her mother. The band director at her school told her friend that she would have to have her schedule changed. She told me last night, that she wished she would have listened to me about band. Nancy and I played with a group of 25 at church on Sunday night. We played 4 hymns with the congregation and 2 other songs. I think this is what pushed Katherine more to want to be in band.
I hope you have a great week.
Charles, Nancy, Katherine and Sweet Caroline
ps. We were eating at Longhorns on Saturday evening and the song "Sweet Caroline" came on and Caroline thought it was so neat. We told her that was where we got her nickname from. She even told the waitress about her name.
Wednesday, October 25, 2006 5:13 AM CDT
Caroline has been under the weather for the last few days. She missed school Monday due to a real bad cough and her saying that her throat hurt real bad. We decided that if she went to school, the nurse would probably have called for us to pick her up. She had a visit yesterday to the pediatrician's office for her to get her shots. While there she got 3 shots, 2 immunizations and her Flu shot. They also said that she had some fluid on one of her ears and a sinus infection. She got a prescription for this. They also made a referral for her to go see an ENT doctor due to her never ending runny nose. She was limping around the house last night due to her pains in the legs. When I got home last night, the first thing she wanted to show me was her band-aids covering where she got her shots. I guess she wanted to make sure that I knew that she was wounded.
Sunday was a great day. We went to the Off Therapy celebration that Cure does each year. It was at Six-Flags and after the celebration we spent the remainder of the day in the park. Caroline had a blast and rode a lot of rides (maybe why her cough was so bad on Monday). It was neat to see some of our friends that we have known through the hospital or at the Lighthouse retreat. There were some people there who had been off therapy for over 20 years. There were several that had been off therapy for over 25 years, with one there who had been off for 27 years. It gives us encouragement. They told us that when they started in 1980, they had about 7 kids off therapy. This year, including family, they had invited 2200 people for the event. They had each person come up on stage and sa how long they had been off therapy. Caroline at first refused to do this, but we finally got her to go up with Nancy and Nancy told the audience that she has been off therapy for 11 months.
My God continue to bless you and continue to pray for us and our Cancer friends.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, October 18, 2006 5:26 AM CDT
I hope things are going well for all of you. It has been a little over two weeks since I last updated. Things are just so normal around here that te only thing to update would be just normal things. Caroline and Katherine are both on their fall breaks this week. I had mine earlier the week before. They are enjoying the activity of doing nothing. They did go with their cousins yesterday and saw a movie in Douglasville. We are getting ready for Caroline's 8th birthday, tomorrow. We are having a small party for her at 6 pm and then she is having a slumber party. They are doing that over at Nancy's parents' house (more room) and plus I have to get up and go to work on Friday. It is hard to believe that we have gone through so much with her in these last 8 years. She came into the world fighting to survive. She had the omphalacele at birth and had a surgery the day she was born and another 7 days later. She grew up into a beautiful little girl that we thought had the distinction of having no belly button. Then when she was 5 we discovered that she had Neuroblastoma. She has survived this and as of next month, she will have been off treatment for a year. We thank God for every day that we have been able to have her. We thank all of you for the prayers that you have said in her behalf. We are looking forward to Sunday for the Survivor Celebration at Six Flags. This is sponsored by CURE for Childhood Cancer. It will be our first survivor event.
Thank you for being there for us and may God bless you.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, October 2, 2006 5:02 AM CDT
I know that some of you think that we might have dropped off the earth, since it has been over 2 weeks since my last post. Things are just going great and it is just mainly ordinary, regular things that are happening here. Katherine and Caroline are doing great in school. The only problem we have had with Caroline is that she sometimes gets in these moods where she doesn't want to go to school for one reason or another. We are working on this and the last week or so has been fairly smooth. Her school counselor is helping us with some incentives to keep her going. Nancy is enjoying working at the church preschool again. She is only an assistant working with 2 year olds 2 mornings a week. Things are going good with me also. We finish up the 9 weeks on Thursday and then we have a workday Friday, followed by fall break on Monday and Tuesday of next week. I have to work on those 2 days, but with no students or teachers. So it is a break of sorts for me too.
Continue to pray for us and those who are still fighting this terrible disease.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, September 16, 2006 9:51 PM CDT
Just a note to let you know about the doctor's appointment yesterday. Things went well and Dr. George said that she still looks good. He could find nothing wrong with her and has scheduled her to have 2 scans in December. She will have the MIBG and the CT. She gets the MIBG once a year now. This scan uses a nuclear isotope that will attach itself to any cancer cells (especially neuroblastoma) and then they scan her the next day and if she lights up, then there is a problem. But, we have 3 months before we have to concern ourselves with that. The hardest part of going to the doctor is having her stuck for drawing blood. That is actually the reason that I go to the doctor visits (to hold her down). Pray for Katherine as she goes with her youth choir tomorrow evening to sing in Fairburn. They went last Sunday and sang in Columbus. Pray for me, as I have to fill in teaching Sunday School in the morning.
Today, I was adventureous. I had a board of directors for the Georgia Association of Educators today and I rode my motorcycle through downtown Atlanta. That was definitely different. The only bad part about the trip was that my rear end has still not recovered from the ride. I think I am going to have to get a different seat.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, September 11, 2006 5:22 AM CDT
I guess I need to update you on things here at the Johnson household, as I haven't updated in a couple of weeks.
The girls are doing ok. Caroline was out sick from school on Friday. She got sick and threw up on Thursday night and Nancy decided to just keep her home. She has had a loose tooth and it came out during the day on Friday. Friday evening the tooth fairy came and left her $5. Boy, I remember when I only got $.25 for a tooth. The cost of inflation. Both girls got their progress reports this past week in school and are both doing great. Katherine got all A's and Caroline did just as well. We sure have smart girls. On Saturday, while Nancy was gone to Atlanta, the girls had to go with me to one of my school's softball games. Instead of going to the field, they decided to stay up in my office and play there. They had a good time, with Katherine playing on my laptop and Caroline watching TV and drawing. She left the artwork on my desk for me to hang.
Nancy, her mother, and my mother went Saturday to the Quiet Heroes luncheon in Atlanta. They said that it was a very moving event. They said that the food was not too hot (my mother even said that she knew that it was not the food that she paid $125 for). Nancy brought home a nice bag with things that they had for the mothers of cancer patients. All of the money raised goes to Curesearch and Cure Childhood Cancer. One of the main women that is Chris Glavine, Tom Glavine's wife.
Pray for Caroline this week as she has her doctor's appointment on Friday with Dr. George. The main thing that I hate is here having to be stuck for them to draw blood. She has her IEP meeting at school on Thursday at 2 pm.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, August 27, 2006 9:31 PM CDT
Well, I have not updated in a couple of weeks and I guess I need to let you know what is going on in the Johnson household.
Caroline survived her baptism last week by her grandfather. My dad got new waders so that he would not get wet when he baptized her(his previous pair had a hole in them), but things did not go exactly as he had planned. With her being on the short side, she almost fell into the baptismal pool and he had to reach over to move her to the small platform for her to stand on and when he did, water went down in the waders. He said that is why he always wears shorts. He did not shrivel up too much. Katherine and the youth choir presented their musical tonight at church and did a fantastic job. They are going to present in a couple of weeks to a church in Columbus and then the next week in Fairburn.
Both of the girls are doing great in school. Nancy has just gotten over a bad sinus infection. She is starting back to work a little. She will be working with the pre-school program at the church as an assistant with the 2 year olds. It will be only 2 days a week. She had to give up her teaching position 2 years ago when Caroline got sick.
Things are going well for me at school. I have had to fill 2 new teaching positions. I have a new 8th grade teacher starting in the morning. I am still looking for a 6th grade science and social studies teacher.
We have heard over the last few days from people who read Caroline's site. My father had a funeral of the mother of a friend of mine from Manchester yesterday. There were several people there who mentioned that they had been keeping up with us and Caroline. We met a lady tonight at church who had just moved to Bremen from Douglas, Georgia in south Georgia. She said that she had been keeping up with Caroline on the site since she had her surgery in November of 2005. Her husband had been visiting the church last Sunday when Caroline was baptized. She said that he just cried when he saw this occur. We ask that you continue to pray for us and keep dropping us notes of encouragement from time to time. You don't have to write a volume in the guestbook.
Thanks again for being there for us.
Charles, Nancy, Katherine and Sweet Caroline
Monday, August 14, 2006 9:48 PM CDT
Greetings from Bremen. Things are going well here at the Johnson household. The girls are in school and doing great. Caroline actually missed school today. She had run a temperature the last couple of days and Nancy carried her to the doctor. She has been coughing a lot and her nose has been extra runny. Her pediatrician said that she did not have a sinus infection. She believes that Caroline's immunity is not where it needs to be and likened her to an infant who does not have a lot of immunity. The good doctor said that Caroline has had a bad allergy and gave her some Zyrtec to take to help her out.
Katherine is doing good in school and is learning a lot. She is enjoying the 7th grade. She has 3 gifted classes and 3 regular classes. She told us tonight that she already has a 95 in her gifted science class. I know that she is going to have a great year.
My school is getting more and more students. I just found out today that I am going to have to hire an extra 6th grade and 8th grade teacher due to growth. If you know someone looking for a teaching job, send them my way (I need one english teacher and one math/science teacher).
Nancy is staying busy and I think enjoying the girls getting back to school. I think she has some time to do some things she wants to do.
Pray for Caroline on Sunday morning as her granddad is going to baptize her. Pray that she won't get cold feet (other than from being in the water, though that shouldn't happen due to the water being heated). We are proud of her.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, August 2, 2006 5:22 AM CDT
The girls went to meet their teachers yesterday. Caroline is excited and has Ms. Harris. She seemed very nice (according to the Nancy and the girls, as I was at my school) and is located in a mobile classroom for the first half of the year. It is hard to believe that Caroline is about to be a second grader, as it was just 2 years ago we were wondering when she was going to be able to make it to school due to her cancer. Katherine me her teacher yesterday. I am not even going to try to mention her name, only that it is Swedish. She saw several of her friends and she is excited about going back.
I have to tell you about Caroline's Make-a-Wish party she went to this past Saturday. She was invited to the party that is getting ready for their Wish-a-thon that is in December. They were doing interviews for 94.9 Lite FM with Randy and Spiff doing the interviews. To start off, Caroline was her typical bashful self. We had to do 4 things before she could play the games at Dave and Buster's. She got stickers for each thing she accomplished. The first thing was that I had to review a write up about her from the information they had requested, so they could read about her story on-air. The second station was getting her picture made, then the third was to go to an art station and put her hand-print on a large picture and draw her own picture. The last thing to do was to be interviewed for the radio. While we were waiting for the interview we got to eat some food. While we were waiting she started coming out of her shell more and more and then in preparation for the interview, Spiff came over and started talking with her and she became a comedian. When Randy arrived to do the interview, he asked her what her name was and she replied "My name is Shirley." She went on about this for a minute and then he said, " Your name is Shirley?" She replied back, "No, my i'm Caroline, but it is only my nickname." She went on with him with him laughing at her for several minutes. He then came over to interview me about what she had been through. While he was interviewing me, Caroline kept trying to tell me something in my ear. Finally I let her tell me and she said that I had to say what she had said on air. When he finished interviewing me, I told him that Caroline had wanted me to say something. So, as he put the mike up to me, I said "Caroline wanted me to say 'world of Snot.'" He started laughing and said to Caroline, "is that what you have been bugging your dad about?" Caroline looked in the microphone and said "World of Snot." She later told me that she was saying "say I am full of snot." Oh well, there is only one Caroline.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, July 24, 2006 9:27 PM CDT
Well we must share with you news about Caroline. Yesterday, we had Dr. Junior Hill preaching at our church for both the morning and evening services. He is a great evangelist and there were several who came forward for profession of faith and baptism. Caroline came forward last night. We have been discussing this with her for the last week or two. We do not know when she will be baptized. But, she knows that she has accepted Jesus in her heart. This was a very special moment in our family's life. Katherine made her profession of faith last fall, so this completes our family being saved.
Be in prayer for Katherine on Thursday. Our church youth choir is singing the National Anthem that day at the Braves game at 12:55 pm. This is the same day that they are having the faith day. There are a lot of church groups going that day.
On Saturday, Caroline and I are going to the Make-A-Wish Interview Party. This will be where we will be interviewded for 94.9 during their Wish-A-Thon in December. It will be from 10 to 2 and while we are there, we are dropping off Nancy and Katherine at the Mall. They are only allowing the child and one parent. Pray that Caroline will not be shy and speak up when she is interviewed.
I hope that you all have a good week.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, July 17, 2006 5:40 AM CDT
Well we made it home last night around 7:15 pm and we are glad we are back. The girls enjoyed themselves, especially the last part of the week when we were in Florida. Caroline spent the time playing with her younger cousins, April and Noah, my sister Terri's children. Caroline and April were almost inseperable. Nancy got a chance to do what she enjoys doing most while at the beach, laying out and getting sun. I spent the first part of the week in meetings and then when we got to Florida on Wednesday, I spent a lot of time riding my bike (motorcycle) around town and up to the Mantanzas Inlet and down to Ormond Beach. I guess next time I will get a little braver and ride in to Daytona. I will post a few pictures from the week up in a couple of days.
Caroline is doing good and this Thursday will be the 2 year anniversary of our discovery of the cancer. We came in from our vacation that year and two days later she developed the lump on her neck that alerted us to the Neuroblastoma. What a wild ride these two years have been and now that she has been declared NED (No Evidence of Disease) we feel so blessed. Please pray for those children that are still facing this dreaded monster and continue to pray for Caroline that it does not come back. Neuroblastoma has this tendency to let you think you have it whipped and then rears its ugly head a year or two down the road. Dr. George told us earlier this year that if we can make it 5 years, then we should be in the clear.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, June 25, 2006 10:19 PM CDT
Well it has been over a week since I last updated.
Things have been going well here at the Johnson household. The girls are enjoying their summer and have been swimming a lot since Nancy's parents put up a pool over a week ago. They usually spend their afternoons there and have been getting darker in the sun. I guess they want to look tan for their next trip to Florida.
During the week of the 4th, I will be at the NEA convention in Orlando while the girls stay here at home. I will be back for a couple of days and then we all go to Jekyll Island for a few days. I will be in meetings, while Nancy and the girls lounge around the pool. The latter part of that week we will travel down to Flagler Beach and spend time with my parents and my sisters' families for a few days. When all of this is over, we will be getting ready for school to start in August.
I have decided that I am going to try and update the page at least once a week. I have found that it has become harder to update the page. After talking with other parents, they say that is usually the case after your child has started to get better. I don't want to give up writing the page, as it has been a way for me to share our feelings about the journey that we have been on. I know that at sometime we will close this book out and try to put the cancer behind us. With scans now set at every 6 months and doctor visits every 3 months, we feel that maybe the cancer is getting behind us. We have been changed and are continuing to deal with the changes. We thank you for joining us on the journey and hope you will continue on for a little while longer. Please pray for all of those families that are facing the trials and tribulations that cancer brings with it. For now, we feel we are blessed and hope that you are blessed also.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, June 13, 2006 11:20 EDT
Caroline went this morning to Scottish Rite to have her abdominal CT done this morning and then a visit to Dr. George this afternoon. We got wonderful and great news. Dr. George said that the scans show nothing new and that there was nothing showing up as any active disease. He told us that we can consider ourselves NED, No Evidence of Disease. This has been our goal since we got off of treatment in November. The scans that were done in December and in February both came back with suspicious places, but Dr. George said that everything about her looks great. He said that the only thing that we had to worry about was her being too silly. She was a character with him as she always is. We go back to see him in September and we won't have scans again till 6 months from now. We thank the Lord for all that he has done in Caroline's life and in ours.
Be sure to look at the new pictures in the photo album of our trip to the Lighthouse Family Retreat last week.
Sunday, June 11, 2006 7:10 AM CDT
We had a great time this last week in Seaside, Florida at the Lighthouse Family Retreat. This week was so awesome and the girls hated for us to come home. The water was almost crystal clear (the mostly due to seaweed here and there). Caroline had never been to a beach on the gulf side and was truly amazed at the white sand. The girls made some great friends and we had two loving family partners, Elspeth French and Carolyn Norton. Each day started out with a devotional led by Dustin Crider, who is a drug rep who visits Bremen every two weeks to see our family doctor and other docs in town. Then the girls would go with the family partners and have their breakfasts and do activities for two hours while the parents went to what is called "Common Ground." This was a time where each of the 12 families would share their experience in dealing with childhood cancer. And during this time of sharing, we each found that we all did have a "Common Ground" in which we understood what the others were going through. The afternoons were usually free and then we had different things going on in the night (parent's night out, a Luau, a picnic and concert, and a talent show). Nancy and the girls may tell you they have some sort of video of me dancing in a hula outfit, but I will deny it until they force me to admit I danced in a hula outfit. We met so many wonderful families with children who are so special. Malinda Mayton founded this program 7 years ago and it is such a precious ministry. Check out the link at the bottom of the page to see more about the program. I almost forgot to mention the family that we shared a house with for the week. Their name is the Hawkinson family and they are from Lawrenceville. Their daughter Abby (11 years old) had a brain tumor and is doing very well now. We enjoyed them and their daughters are so precious.
I'll update with more later as I have to finish getting ready for church.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, June 4, 2006 10:00 PM CDT
Well Caroline is excited as can be getting ready to leave in the morning for the Lighthouse Retreat in Seaside, Florida. She has been counting down the days and she has been asking a lot of questions about how will it take to get there and what things can she take. Everyone else is excited too. We plan on leaving in the morning as close to 5 am as possible. We need to arrive there no later than 12 pm (CST). The trip is supposed to take a little over 6 hours, but I figure if we add a couple of extra hours in, it will give us time to eat breakfast on the way and take two or three breaks. Our church is having Vacation Bible School this week and we will have to miss it. That was the only thing the girls hated about having to go this week. Today, Katherine said something about having to miss bible school and Caroline asked her, "You mean you don't want to go to the Lighthouse retreat?" Katherine told her that she wanted to go, but that she was going to miss going to bible school. Please pray that we will have traveling mercies.
Check out the new pictures in the photo album. Check out the picture of Chicken Little and see if you can guess who is who.
I will try to update and put some pictures on the web when we get back at the end of the week.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, May 30, 2006 10:03 PM CDT
Well it has been over a week or so since I last updated. I guess you have thought that we have dropped off of the planet, but we are still here. The girls have had a good time being on vacation so far. We leave on Monday to go to the Lighthouse retreat in Florida. Caroline has been counting down the days. When we get back, she will have a CT done on Tuesday, June 13th. I finished up with our school year on last Friday and my teachers finish up tomorrow. I bought a new motorcycle a week ago and finally got it home yesterday. Dad kept it till I had time to get it.
I hope to update a lot sooner than the week before, but of course we will be gone next week. We'll post some pictures from Florida.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, May 18, 2006 9:26 PM CDT
Well it has been over a week since I last updated. Things are going well around here. The girls are finishing school tomorrow. What a difference a year makes. Caroline finished school without having to be in the hospital this year and is on track to go to the 2nd grade. Katherine has had a good year. We are going in the morning to her awards day program at the school. I will go into work after it is over. We were notified last week that she would be receiving some sort of honor. She is going to check out afterwards (I had to not say anything about that). We are proud of what our girls have done this year. We still have another week to go till I get out of school (hopefully the natives won't be too restless.
We are counting down the days till our Lighthouse retreat trip. Nancy says it cannot get here quick enough. She just wants to lay on the beach. The only downside to this is that the girls will have to miss vacation bible school this year. It also starts on June 5th.
Nancy got jury duty the week we get back from Florida, but we have sent in a request for a deferral since Caroline has a CT scan and doctor's appointment on Tuesday June 13. We sent in a letter from Caroline's doctor saying that he was requesting that she be excused. He said that it was important that she be there for the scans and the doctor visit.
Hope you have a good week.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, May 9, 2006 5:32 AM CDT
It seems that every time that I post on the page, I am always apologizing for not updating lately. So, let me apologize again for taking over a week to update.
Things are going well here at the Johnson house. The girls have the rest of this week and all of next to finish the school year. They are excitedly waiting for summer. On Friday, Caroline had RAD Day at school (Read All Day) and carried her sleeping bag and some of her favorite books. Nancy went by and read to the class. She read Caroline’s favorite book and also read Alex’s Lemonade Stand . Also on Friday, Katherine was inducted into the Junior Beta Club at her school. She was only one of twelve students inducted from the whole school. Her principal told me that they had raised the standards this year. She had to have straight A’s for the first 3 nine weeks. We are very proud of her.
On Saturday, Nancy and I drove the girls down to Ellaville for them to stay the night with Caroline’s Las Vegas buddy, Kimmy. She and her sister had a dance recital and asked the girls to stay with them and see it. It takes about 3 hours to get there and then Nancy and I came home. The girls did great (minus Caroline deciding at 1 am that she wanted her Mommy) and they came back Sunday afternoon.
Continue to pray for Caroline’s next scan on June 12. We go down to the Lighthouse Retreat on June 5. The Lord continues to bless us and we pray he does that for you to.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, April 30, 2006 8:50 AM CDT
Good morning,
Things are going well here at the Johnson household. I have noticed that I have not written in over a week. It seems that all of us who update our children's pages do the same thing. With Caroline doing good, it seems I post a lot slower than I did when she was sick. So I take it as a blessing to be updating a lot fewer times.
We got word on Caroline's next scans on Thursday. She will have to have her next CT done on June 13. This will be the week after our Lighthouse retreat trip.
Caroline seems to be doing extremely well. Her hair is getting longer (not so much thicker) and that makes her happier. She has a couple of loose teeth that she cannot seems to lose. She seems to have more stomach aches lately, but it seems to happen when it is near a meal time. The girl is getting taller and taller. When she wears shorts, all that you notice are her legs. She is doing great in school and has moved into third grade reading material.
Well school is drawing to an end. The girls have only 3 weeks left and I have 4. Hopefully we will all make it through the end of the year.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, April 22, 2006 5:43 AM CDT
CHECK OUT THE EASTER PICTURES
Caroline has had a pretty good week. Both of the girls are on Spring Break this week. It seems a little late to have Spring Break because they have four weeks of school left when they come back to school on Monday.
The only rough part of the week was earlier when she had to go to the dentist on Tuesday and have a filling. This makes her third filling that she has had and still needs another. The dentist believes that all of the chemo has had a bad effect on her teeth. She is still slow on some of her new teeth coming in and slow on losing some of her old.
On Wednesday, the girls and their cousings went to see Ice Age 2 in Douglasville. They said it was great and they had the whole theatre to themselves. On the way home they ran into a storm and had to wait under an overpass while it hailing.
Yesterday, our school finished up its Relay for Life drive with an assembly. I invited Nancy and the girls to come over and watch. I am really proud of our school. They went from raising under $100 last year to raising nearly $2700. At the end of the program I introduced Caroline to them and explained why we raised the money. Last night began Carroll county's Relay for Life. Caroline walked in the front of the survivor's lap with 2 other children who had survived Cancer. She and Katherine enjoyed the Relay and Caroline was running all over the place. There was a couple of times last night that she just ran off by herself and made us have to hunt for her. We figured that if anybody had taken her, they would return her because we know that she would have either talked their ear off or she would have whined, wanting either me or her mother. We left just before the storm passed through. We also saw a couple of people who came up to Caroline who were wearing her bracelet and said they had bought it last year at the Relay and wanted to show they still were praying for us.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, April 17, 2006 10:07 PM CDT
CHECK OUT THE PICTURES IN THE ALBUM.
I keep apologizing each week for taking so long to update. This is how you can tell things are going well for families, taking so long to update. It is when something is going wrong when we have to update each day.
Things are going well here. The girls began their spring break today. They only have four weeks of school left and have been ragging me in that I had to go to school this morning and that we still have six weeks of school. Last week the girls had a pretty uneventful week, minus Caroline starting gymnastics last Wednesday. She really enjoyed this. She wanted to do something this spring, since Katherine was playing soccer and we wouldn't let her. Her age group was combined with the next older group and we felt it wouldn't be safe for her. Caroline keeps asking each day how many more days till Wednesday. On Saturday, we went to my niece's birthday party in Peachtree City and went out with my parents afterward for dinner. We had a good time at Nancy's parents yesterday for Easter and did the Easter egg hunt thing. We were pretty tired afterward and came home and crashed till time for church.
Friday is the Carroll County Relay for Life. Caroline will get to go to the survivor's reception before it and we will walk the initial lap with her. We always enjoy the event. I have a GAE convention to go to on Saturday and Sunday, so Friday will be a great evening for us to have some fun. I am proud of my school. This is the first year that we have raised money for this event and we are right at about $2000.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, April 9, 2006 9:53 PM CDT
My apologies for not updating for over a week. Things have been busy around here with the girls doing the CRCT testing this last week and several other things going on. If you get the Times-Georgian (Carrollton Newspaper) I hope you have had the chance to read Lawanna Musick's articles in last Sunday's and today's paper on Caroline. She called me up a few weeks ago and said that she wanted to do an article that would draw people's attention to childhood cancer. We told her that would be fine and she called me a couple of weeks ago to get background information and then used information from this website. We got to know Ms. Musick last fall. Ms. Musick is head of the Miss West Georgia Fair Pageant and she chose Caroline to be the Grand Marshall of their parade. She also took us out to eat at one of Caroline's favorite restaurants and had both Caroline and Katherine help crown their winner.
The girls finished their CRCT this week, with Caroline having 3 days of testing (Tues. - Thurs.) and Katherine's lasting all week. We have been getting ready at my school as we start testing tomorrow morning. We have really been working hard to get our kids ready and even had a CRCT pep rally at school on Friday afternoon.
We have been dealing with Ants in the girls bedroom this last week. We thought we had them taken care of till we were getting ready for the girls to go to bed tonight and there they were, hanging out under Caroline's bed (and on her bed, her books, her night table, etc.). I will call the exterminator in the morning. The girls have been sleeping in the living room a few nights, off and on.
Katherine went over to one of her friends house this last Friday night for a birthday party sleepover. Caroline wanted someone to spend the night with her, so her cousin Amber came over and spent the night. They did real good till about 4 am (when the storm came though) and they moved from sleeping in the living room to sleeping in our room with us.
Well I guess I better sign off for now. I promised to update before the week is out. The girls finish this week up and then they are off for Spring Break (late, after Easter). We in Carroll county only have to go 4 days this week with Good Friday off.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, April 1, 2006 8:52 PM CST
We had a great trip to the big city of Ellaville today. Caroline got to see her friend, Kiimmi. We left out this morning after 10:30 am and stopped for lunch in Warm Springs at the Bulloch House. The food was wonderful, especially the fried green tomatoes. We then stopped in Manchester and showed the girls where I went to high school and showed them where I lived when I was in high school. Of course the building that I went to school in has since been demolished and replaced by newer buildings. It did look nice, though. Things looked different around the old house, and it is amazing how things seem so much smaller than you used to remember, especially after being gone for almost 20 years. We made our way down south through Talbotton, Geneva, Buena Vista, then Ellaville. We got there after 2 pm. It was great for Caroline and Katherine to spend time with Kimmi and her sister, while Nancy and I got to visit with her parents. It is amazing how many things we have in common with them. They are such a sweet family and they want the girls to come back the first week in May to go see Kimmi and her sister's dance recital in Americus. Nancy and I will take them down and then they will spend the night and the will bring them back up to us the next day. Caroline made sure that she called back tonight to say that we got home safely (around 8:40 pm).
Don't forget that time changes tonight and you move your clocks forward 1 hour.
I have had a fairly good week off this last week for spring break. I have been looking around for a new motorcycle. I want something that I can ride around locally and take the girls for a ride on. My Dad has one and he has got me infected with the fever. I hope to get one within the next couple of months.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, March 29, 2006 7:34 AM CST
Well my spring break is half-way over. It has been kind of slow this week (Monday at the dentist and rain yesterday). Nancy and I are going to get out and do something today. Just waiting for her to ready to go.
The girls are doing great. Katherine had her first soccer practice last night and was so happy to finally get started. Caroline has been playing around and is wanting to do something, we just are not so sure of what she is going to do. Her age soccer group combined with the older group, so we decided to not let her play this season. Hopefully there will be enough of her age group in the fall. Saturday, we are going to visit Kimmi. She is the 14 year girl that Caroline hit it up with in Las Vegas last December. They just fell in love with each other and so we are going to make the drive down to Ellaville, Georgia Saturday morning. It should take us about 3 hours to get there. We are going to go back roads and I am going to stop in Manchester to show the girls where I went to high school and where I lived and also the church I went to then.
We are practicing online for the CRCT this week. I want the girls to their best next week. Bremen is giving their test all of next week. We in Carroll county are giving ours the next week for three days and then two days the next week. If you have children who have to take the CRCT, make sure that you take advantage of the OAS. If you need help in accessing it, contact your child's school.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, March 22, 2006 5:11 AM CST
I must share with you what Caroline is learning to do. She is learning to read books on her own, with no help from Mom and Dad. Now she has been reading books this year already, but she is now toting a chapter book around and sitting there reading all by herself. Nancy said that when she took Caroline to the dentist yesterday morning, Caroline had her book and was reading all the way to Carrollton. At one point, she even told her mother to turn the radio down because she couldn't concentrate. She even carried her book with her to church last night to read while waiting for church to start (we are having revival and Nancy and I were in choir practicing before church started). It is so awsome to see your smallest child start maturing.
Nancy and I celebrated our 14th wedding anniversary yesterday. I want to thank Nancy for marrying me and providing me with two wonderful children. I think I definitely got the better end of this deal.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, March 18, 2006 10:52 AM CST
It was a year ago today that Caroline got out of the hospital following her second transplant. Things sure have changed in a year's time. Caroline is doing great with few side effects of the treatment. The biggest side effect has been the amount of hair that she has not grown back. But, that is changing still with a little more growing each day. Her last scans were basically clear (just a little cloudy from an upper respitory infection days before). In school she is doing great, especially with her reading. All I can say is that we have been blessed in what God has done in our lives.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, March 13, 2006 8:17 PM CST
My apologies for not updating since last Tuesday morning. The girls are doing great and are patiently waiting for Spring Break. Their spring break starts the Monday after
Easter (April 17?). My spring break is the week after next (last full week of April). Next year we will all have off the same week (first week in April).
I have had a rough couple of days. Late Saturday night/early Sunday morning I started itching under my arms. When I got up yesterday morning and got in the shower, the heat from the water stimulated the histines in my skin and I discovered that I was having an allergic reaction to something. When I got out of the shower, I was developing huge welps all over my body and I started itching like crazy. I went to Walmart and got some benedryl to control the itching. I took two pills and was out like a rock. Needless to say, I missed both the early servic and the late service. During the afternoon, the welps came back and stayed with me through the night. I had to sing with the men's quartet last night and I went and stayed through our time of singing and then came home to take more benedryl. In the middle of night I woke up scratching and itching up a storm. I took 2 more benedryls and then went back to sleep till it was time to get up. I did not go to work today so that I could go see Dr. Parrish. He loaded me up on drugs (steroid shot, steroid pills, Allegra, and Zantac). He also gave me a lotion that was supposed to ease up the itching. It worked a little. The best thing that has worked on clearing up the spots on my arms and legs has been the benedryl. I took two pills a couple of more times this afternoon and night. Right now I am not itching and I thank God for this. Dr. Parrish said it was definitely an allergic reaction to something, but as to what we don't know. I am hoping that this will stay under control for the rest of the night tonight and during the day tomorrow so I can go to work. Please pray that this hurry and get out of my system.
The following was an article from yesterday's Atlanta Journal- Constitution. Read what the article says about funding for childhood cancer. Some of the information is true about Carroll county also. Every year Carroll County schools donate the largest amount for Relay for Life. My school is going to help do this also. In the future maybe we will look at doing something else? Of course we have a lot of employees in the school system who are Cancer Survivors and the money helps benefit them. Write me back and tell me what you think about this issue.
"Kids' cancer research merits more attention" By BRUCE PRESCOTT Published on: 03/12/06 in the AJC.
The American Cancer Society's Relay for Life is the world's largest fund-raising relay event, with more than 4,500 events in the United States and additional ones in other countries. In Georgia, there are more than 150 events. Gwinnett County's is the largest Relay for Life event in the world.
More than 3 million Americans will participate in relay events this year in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate more than $400 million with the expectation that their time and money will get us closer to a cure for cancer.
But which cancers will benefit from that money?
There are roughly 100 different types of cancer; each one takes different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the American Cancer Society budgets its income (donations) according to the largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will be only about 12,500 children diagnosed. Also like any other financial entity, the American Cancer Society and Relay for Life look for creative ways to promote their cause in order to maximize the inflow of funds.
Gwinnett County raised nearly $2.3 million dollars in its relay last year, with 1,716 cancer survivors participating and 10,000 people taking part. The Gwinnett school system donates the most money — more than $1.1 million. Ninety-five percent of Gwinnett schools participate.
To promote the relay, organizers search for "Honorary Chairpersons" — people who have battled cancer and survived or are still battling cancer, but are survivors! The honorary chairpersons are presented at a large kickoff pep rally with guest speakers, recording artists, testimonials and all the fanfare. They're paraded across a stage for all to see who we are fighting for. We want to help these people! At the 2003 relay, my 4-year-old daughter Shelby was an honorary chairperson. There were 20 that year — 19 children and one adult. Shelby was the youngest.
Shelby was diagnosed with the childhood cancer neuroblastoma on Nov. 30, 2001. Only about 600 cases (some reports say 1,000 or more) of neuroblastoma are diagnosed each year. Half of these children will die within five years. Since Shelby participated in the Relay for Life, I have learned a lot about the distribution of donations within the cancer world.
As I mentioned before, the cancer society distributes its funds according to the greatest need or the greatest number of patients affected. According to the society's funding chart for 2002-2003, $132 million was given to cancer research — and only $7 million of that amount was given to childhood cancer research.
Donations for the same time period were nearly $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides and many other help programs, as well as smaller amounts for fund-raising efforts, salaries and other administrative expenses.
One side note: When we tried to get a brochure on programs for children diagnosed with cancer, there wasn't one.
Anyway, back to the distribution of funds. Based on the above breakdown, if you had donated $100 to Relay for Life hoping to show your support for the honorary chairpersons, $12.50 would have gone to research adult cancers, while only 70 cents would have gone to childhood cancer research. How much of that 70 cents would be for neuroblastoma research? None!
Let's look at this from another angle. Gwinnett Relay For Life's group of honorary chairpersons was 95 percent children, but only 0.70 percent (that's right, less than 1 percent) of the donations would go toward childhood cancer research.
I think there's something wrong with this picture. Don't you?
I'm not trying to get people to stop donating and participating in Relay for Life. The American Cancer Society does a lot of good for the adult world of cancer.
But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations.
When Shelby was first diagnosed, the drugs used in her protocol were all "hand-me-down" drugs developed and tested for adult cancers. Once they went through the five to 10 years of testing to be FDA-approved for adults, they had to go through another five to 10 years of retesting and reapproval for use in children. Not one drug that was used in Shelby's treatment was designed specifically for neuroblastoma — or any other childhood cancers.
If childhood cancer is your priority, here are just five of the many organizations I would recommend:
• CURE Childhood Cancer
• The Aflac Cancer and Blood Disorder Center at Children's Healthcare of Atlanta
• CureSearch/National Childhood Cancer Foundation
• The Children's Neuroblastoma Cancer Foundation
• St. Jude Children's Research Hospital.
These organizations are strictly dedicated to childhood cancers and other life-threatening diseases in children.
You may think I'm biased because I'm the parent of a child with cancer. I also am the husband of a woman with cancer. My wife was diagnosed with breast cancer in October. Her mother died of breast cancer seven years ago. There is a huge need for funding in all areas of cancer research, but please take the time to pick the right organization to put your money into.
If it's breast cancer research or colon cancer research, by all means, get a team together and walk in the relay. But don't walk in memory or honor of a child. It will only be a waste of your time and resources.
The Prescotts' daughter, Shelby, was a kindergartner at Gwin Oaks Elementary School. She died Oct. 22, 2004. She was two months shy of her sixth birthday.
I hope that you all have a great day tomorrow and please continue to pray for Caroline that the cancer stays away. Also pray for all of our other friends who are either fighting cancer or who have gone through the treatment like us and want the disease to stay away.
Charles, Nancy, Katherine, and Sweet Caroline
Tuesday, March 7, 2006 10:18 PM CST
Caroline did a great job of singing at the school talent show tonight. She sang a Hillary Duff (not Dugg as I spelled it yesterday) song and was so pretty. She is getting some hair and had enough that Nancy could put her hair up in a couple of pig tails. Check out the picture above. Isn't she so cute. I had a PTO meeting at my school and so I didn't get to see Caroline till I arrived at her school before she performed. I was just taken back at how cute she looked. I such pretty daughters. Katherine is looking so beautiful and mature these days.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, March 6, 2006 5:25 AM CST
I hope that you are your families have had a good week. The girls have done well this week, except for a rough weekend for Katherine. Katherine went roller skating with her friends for a birthday party on Saturday. She said she had a great time, but when she got home she remarked how sore she was. She said she had skated better than she had ever skated, but that she had fallen several times real hard. She changed clothes and then she came and showed us her knees. She has large bruises on her knees and also on her elbows. She said that when she was skating she took a few hard falls onto her knees. She also had a huge blister on the bottom of one of her feet. That evening she moaned and groaned and finally went to bed. Yesterday, Katherine was like a zombie and was so sore. We finally had to break the blister so she could walk on that foot. She told us last night that she had no intentions of going skating for a while. Hopefully she won't moan and groan too much going to school this morning.
Caroline has been your average monkey this last week. She has been getting ready to participate in the talent show at school on Tuesday night. She is singing a Hillary Dugg song. She made up her mind that she wanted to do this and no one pushed her into it. Pray that she doesn't get too shy and won't sing. We decided against the Rogaine. Someone sent us some shampoo that is supposed to be good for helping hair grow. Caroline could not wait to try it out. I guess she thought that it would make the hair grow overnight. It did make her hair look more full and more manageable. In fact, she is so used to her hair going every which way, she said it looked to normal and laid back. She tried to mess it up and could not get it to look like it normally has. She gave up and went to bed.
Keep praying for us. It will be nice to not worry about what is going on inside her for a few months. Hopefully we can get into the routine of doing normal things.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, March 1, 2006 5:08 AM CST
Well, yesterdays visit to the Doctor turned out to be pretty good. We had the CT done yesterday morning and it was quicker than we have ever had one done before. Since they only wanted to look at the lungs and that area, she did not have to drink the contrast. That process usually takes around 2 hours and we have to struggle with Caroline having to drink the contrast with apple juice (she won't try anything else). The only thing they had to do was give her an IV line in her arm. That in itself was not an easy thing. They put the first line in her right arm and they hit a valve in the vein. They were able to draw some blood out for testing from this line. They then had to put a line in her left arm which worked. The only thing we had to wait on for having the scan done now was just wait our turn. There were a lot of kids having scans done. After we had the scan, we saw that we actually had time to get something to eat before we had to go see Dr. George. We decided to go downstairs to the cafeteria. It was OK, but after spending so much time in the hospital last year with Caroline, we determined that hospital food is still hospital food. We got to the clinic before 1 pm and got back to see Dr. George a little later. We had not seen Dr. George since October, with the last two visits seeing a PA (physician's assistant). He remarked how well that Caroline looked and he checked her over. The only thing that he said about Caroline that was not good was that he was surprised how little hair she has had come back in a year's time. We spent some time talking about this and he even suggested that we might want to try Rogaine, even though it is not to be used by children under 18 (it originally was used as a blood pressure medicine). He then went and checked the CT and came back and told us that the spot that was in the last CT was gone. He said that the Radiologist noted that there was some cloudy area in the bottom of the lungs and three lymph nodes that were slightly enlarged in the middle of the chest. Dr. George said that those things could easily be from where Caroline had her respitory infection a couple of weeks. We will have to have another CT in 3 to 4 months though. I asked him about the elusive NED (no evidence of disease) and Dr. George said not yet but that we are heading that way.
We want to thank each of you who prayed for Caroline as she went to the Dr. yesterday. We believe that prayer works.
Caroline got a new bike on Monday. She was getting a little big for her 12" bike, so I decided it was time to move up to a 16" bike. She immediately had me to remove the training wheels and she hopped on and started riding like the had been riding forever. The only bad thing that has happened was that she had her first bike accident and I was probably the cause of it. Ever since she has started riding things we have played a game where she rides past me and wants me to try to touch her and she tries to avoid me. Well we have done this with her riding her trike, electric car, other bike and now this new bike. When she came by me, I reached out with her hat I was holding and I popped her on the head. The next thing I know she has a wreck. Luckily the only thing that got hurt was a little place on her thumb. Good thing she was wearing her helment.
Continue to pray for us.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, February 23, 2006 5:14 AM CST
DAY + 365 Post Transplant
A year ago today, my beautiful daughter had a new birthday and was given her own cells back to recreate her blood system. It was her second stem cell transplant. Boy, what a difference a year makes. She is doing a whole lot better than a year ago. If you have the time, review the journal history of the things that she went through last year. She now is back in school and yesterday at school she went to the library and got to check out her first chapter book. She was so proud of that accomplishment. Be in prayer for us next week when we go and have her CT on Tuesday, Feb. 28. The biggest thing to pray about for her is that she will drink the contrast easily. She hates doing that more than anything else about having a CT done.
Please remember Katherine too. Boy what a difference a year makes in her life. Last year she was having to be away from us for over a month a couple of times and she now is maturing so much into a beautiful young lady.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, February 19, 2006 9:35 PM CST
Thank you for all the prayers for Caroline this last week. She has finally gone a couple of days without a fever. She still has a cough and we think that the antibiotics that she was prescribed must be doing their job.
The girls are off for tomorrow, while I have to go to school. Bremen is like most of the schools in the area and are off tomorrow for President's Day. Carroll County on the otherhand has school. I made sure on Friday that I reminded the students that we had school. I hope they show up.
Continue to pray for us as Caroline has her CT scan on Tuesday, Feb. 28. On Thursday, we will celebrate Caroline's new birthday as it is the anniversary of her 2nd Stem Cell Transplant. Without that infusion of her own cells, she would not have been able to survive after the heavy doses of chemo. The thing that I remember the most about this time last year was the sores that she had all the way through her digestive track. She looked so puffy and was so very sick. I know I have said this a lot over the last few weeks, but boy what a difference a year makes. Her hair is finally growing out and she has been in school all year (with the exception of all of last week).
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, February 16, 2006 8:53 PM CST
Hope things are going well for you.
Caroline is still sick and has had a fever since last Saturday morning. She has run a temperature ranging from 101 to over 103. She went to the doctor on Monday, but they said that everything looked clear and said that if she was not better by Wednesday, then they would prescribe an antibiotic. Well yesterday came and she has not gotten any better. She has had a cough for the last few days and tonight she has finally complained of her throat hurting. If it was a sinus infection, I would not think that the fevers would last up to a week. Since our pediatricians don't know what is causing the fevers, we may look to Dr. George if things don't get much better. It is possible that with Caroline's immune system weakened from the events of the last year and a half, it may be that she just is having a hard time getting over what may take us only a couple of days to get over. Pray that this series of fevers will break.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, February 12, 2006 9:16 PM CST
Caroline has got a bug of some sort. She has run a temperature of 102.4 to 103 off and on yesterday and today. She has developed a cough, but overall seems to feel OK. She has not complained of any throat pain or muscle pain. Nancy is going to take her to the pediatrician tomorrow and hopefully they will tell us it is something that can either be medicated or if viral, we'll wait it out. Katherine still feels OK and has not complained of anything, in fact she had her sickness the week before last. Caroline has had a runny nose for the last year and the doctor told us last visit that she will probably have the same runny nose throughout the winter. Just pray that she will get better soon.
Caroline did something this week that we were real proud of. On Wednesday, she came to us and said that she wanted to go out and ride her bike. We told her that was OK and that we would go out with her. Then she said, I am 7 and I need to ride without training wheels. We asked her if she was sure and we told her that we would remove them. After we took them off, I pushed her one time and then she was off riding by herself. Within, 30 minutes she had learned to start and stop herself. I remember that it took several times to get Katherine to ride by herself. Not bad for a little girl that we thought was might have to have physical therapy just a month or so ago.
A year ago this Thursday, Feb. 16 will be a year ago that we went back in the hospital for the 2nd transplant. On Feb. 23 it will have been a year from the 2nd transplant. We thank all of you that have prayed for our little girl and thank God for how she is doing. God does answer prayers and we know that it was through his grace that she is here and is a strong vibrant girl. Please remember that she has scans on Feb. 28 to check and see what has happened to the spot that was on her lungs on the last CT in December. We know that God will take care of her and us. If you want to see how we have been blessed, take a moment and read the journal over the past year and how life has been so good.
May God continue to bless you.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, February 6, 2006 9:32 PM CST
It is hard to believe that we have had over 200,000 hits on this website since August of 2004. We feel so blessed to have each of you visiting with us and keeping up with our family. We are so happy that the news you read from us now is positive and that Caroline is doing so great and wonderful. If you go back and look at the journal history, you see how things have gone up and down and back up again for our Sweet Caroline. God continues to bless and hopefully at the end of the month the scans will show "NED", No Evidence of Disease.
Caroline was one upset cookie this morning. Early this morning, around 5 am, she woke up and came and got in bed with us. Before she got in bed, I opened up the blinds and showed her the snow falling and the backyard coverd in white precipitation. She was excited and said that she couldn't wait to get up and play in the snow a little later on with Katherine. Well, when it got time to wake her up at 7, the snow was melting and it had turned to a rain. When we woke her, she said it's snowing very excitedly. I had to break the news to her that it was disappearing and she pitched a major league fit. She got over it and we told her that she had an advantage over some kids at school. She actually saw the snow on the ground and saw it falling from the sky. She accepted it and went on her way.
Please continue to pray for all of our friends.
Charles, Nancy, Katherine, and Sweet Caroline
Friday, February 3, 2006 5:18 AM CST
I hope things are going well for you and your family. Things have been pretty normal around here this week. Well, except for us starting to come down with some bug this week. Katherine missed two days of school with congestion, coughing and fever. I did not feel the best in the first part of the week and I went and saw my doctor yesterday and he gave me a shot, some antibiotics, and reminded me I need to keep taking my blood pressure medicine. Nancy has just in the last couple of days started getting congested and her throat starting to hurt. She is blaming Katherine and me for this.
Tonight is the Daddy-Daughter dance in Bremen and I am taking Caroline. She informed me real quick that we were going the day they sent the flyer home from school about the dance. Last year would have been the first time that she could have gone, but it was between transplants and she could not go in public places at that time. She is very excited. I was scheduled to announce the Temple High - Bowdon High basketball game tonight, but Caroline definitely comes first. Nancy is picking up her flower this afternoon and she is going to wear a dress that Katherine wore one year to the Daddy-Daughter dance. We will post some pictures after the event.
Thank you to all who have been praying for Caroline over this last year and a half. She amazes me how strong and vibrant she is becoming. Her hair just continues to grow and hopefully soon, we won't even see her scalp (her hair is so thin and fine). She is doing great in school and having so much fun being a normal kid. This week she was chosen to be the Star student for her class. They have this huge poster that she has to answer questions about herself on. Some of her answers on the sheet went as follows: When I see people I want to ...hug them. Three reasons that I am special - 1. I am a cancer survivor. 2. I have no belly-button. 3. I got to skate with stars in Las Vegas and was on NBC-TV. There were several other questions that I cannot remember, but it was nice to hear some of the things she said. When she gets it back, I will post some of the other answers.
Pray for all of the children with Cancer.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, January 30, 2006 5:22 AM CST
Things are going ok here at the Johnson household for another week. Well, that is minus Katherine being sick over the weekend with her throat and sinus botherine her. I don't know if she will make it to school this morning. She did run a low grade temp yesterday morning and missed church. Caroline is doing great. The only thing that she complains about is that Katherine does not play with her enough. She is doing great in school and has moved up to level 18 in her reading books that she brings home every night. Caroline went to the dentist and they discovered that she has more caveties and has to go back and some some fillings. Katherine went on Thursday as well and her teeth were great and they applied sealants on them to protect them. Boy, I wish they had had sealants when I was growing up. Then I wouldn't have to have all of the crowns that I have and need now. The girls on Saturday went with their cousin for a birthday party at Libby Lu. This is where girls get to go and have make-overs and get their hair put up and get to dress up. When they got back, Katherine had her hair still up and she was gorgeous. They told me that they even put Caroline's little bit of hair up too. They had a blast.
Well we have Caroline's scan in less than a month from now, on Feb. 28. Continue to pray that whatever the doctor saw on the last scan is not there anymore and she will have a clear scan. We are shooting for them to say NED, No Evidence of Disease. That would be a great thing a year out of transplant. Continue to pray for all of our other friends who are facing this beast also.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, January 25, 2006 10:11 PM CST
Things are going good around the Johnson household. The girls got out of school early today. They had early release day so their staff could have staff development. Tomorrow the girls go to the dentist. Caroline goes in the morning to have sealants put on her permanent teeth. I think that her teeth have taken a beating from the chemo. Katherine has go after school for cleaning. Oh the ordinary things that they have to do. Looking back over a year ago and what unordinary things we went through, it sure is nice to have ordinary things.
I had to visit the funeral home tonight. Bonnie Phipps' husband passed away early yesterday morning. Bonnie and I taught together for several years at Temple High before she moved to administration and became principal at Temple Elementary before she retired. She has been teaching pre-school at her church for the last couple of years. Her husband had an esophgial tear that lead to infection and ultimately caused his death. She told me tonight that he held on through their anniversary on Monday and passed away after 1 am on Tuesday. She said that they held hands all day long and looked at a picture of his grandchildren all day. Pray for her and her family.
Thank you for taking time out of your day to keep up with our family. Please don't forget to just drop a note in the guest book. It is always encouraging to see notes from you and reminds us of how many of you have been praying for Caroline.
Charles, Nancy, Katherine, and Sweet Caroline
Saturday, January 21, 2006 5:40 AM CST
My apologies for not writing all week. It has been a pretty good week around the Johnson house. Caroline has been feeling good, except we still can't get rid of all this stuff in her head and nose. The last time that we saw the doctor (December) they said that it would probably last throughout the winter.
This last Tuesday, Caroline stayed afterschool with her teacher to get her extra help like she normally does. With Caroline having missed over half of her Kindergarten year being in the hospital and being sick, we got her extra help to get her back to where we thought she needed to be. She went two days a week to work with her teacher for an extra hour. On Tuesday, her teacher told Nancy that Caroline did not need to come back. She said that when Caroline goes to the next level of reading books in a week or so, she will be at level 17, which is a 2nd grade level book. So there was no need for her to get extra help. We praise God for what he has done to help her. Please remember that we still need your prayers before her Feb. 28 CT scan. We want her scan of her right lower lung to be clear.
Yesterday, Caroline went out and played with some of our neighbors. She played outside for a long time and had a great time. She is a professional player.
A year ago today, we were getting out of the hospital for our first stem cell transplant. We went and stayed at the hotel for 3 days till the doctors allowed us to come home. I had to go to a meeting in Atlanta yesterday and passed by where we stayed. It felt strange in a way remembering everything that she went through in the hospital. Boy things are going good.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, January 15, 2006 9:27 PM CST
Well it has been pretty quite around the Johnson house this weekend. The girls finished the week at school, getting report cards earlier in the week. Both of the girls are doing great in school. Katherine got all A's this week and Caroline got all S's. Both were rewarded for their grades. Katherine got a new calendar and a new CD (Music inspired by Narnia) and Caroline got a new CD (Herbie Soundtrack). We try to reward the girls for doing good in school.
We looked back at the Journal history and noticed how things were going a year ago. We were in the hospital with Caroline improving from her first stem cell transplant. This next Saturday will be the anniversary of her getting out for the first transplant. Boy, how things have changed. I have been listening to Steve Green's latest album, Somewhere Between. I wish I had this album a year ago as it is reaches out to people who are going through trials in their lives. One of the verses from one of his songs says, "thank you for the storms that keep faith alive." I think that we have to look at the events that happen in our lives not as something because we have done something wrong, but a way for us find how much God loves and we must always trust in him.
Charles, Nancy, Katherine, and Sweet Caroline
Wednesday, January 11, 2006 10:11 PM CST
Caroline was a very big girl this morning. She had 3 teeth pulled by her dentist. They were all on the top and needed to come out so some teeth that were coming in would have room to slide into place. She had to be coaxed to open her mouth at first and just to have the gel to numb the gum for the shot. I even put the gel on my gum and lip to show that it was not going to hurt her. Well, that was a fun experience for a while with my mouth numb. She eventually opened and Dr. K put it on and then she gave her the shot. One of the teeth was very easy to pull. The second tooth broke while being pulled and she had to use a tool to dig it out of her gum. I am glad her gum was numb, and even though it was she still felt a little discomfort. The dentist finally got it out and then went to work on the 3rd tooth. It took about 15 minutes and then it was done. She got to pick 3 prizes out of the treasure box and that made her happy. She didn't like having to have the front of her mouth packed with gauze. I promised her a big prize and she has yet to pick out what she wants. She mentioned a new CD and I told her that it was her choice. We thought that Caroline would probably not feel like going to school, but Nancy called me about an hour later and said that Caroline wanted to go to school. I told her that if she wanted to go then send her. Well that is problem #2 that has been taken care of this week. Let's hope that this is a trend that continues. Let me change that, I have faith that this is a trend that will continue.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, January 9, 2006 9:30 PM CST
Just an update from this morning's visit to the physical therapist. She told Nancy that Caroline looks wonderful and that there seems to be no need for physical therapy. She said it appears that things are looking good for her and that if we notice something in the future then we could let them know and they could check it out. So one problem down, on to others. The Lord works things out all of the time.
My entry about continuing to write and keep updating was not meant to say that we would stop soon. This journal is a way for us to keep you updated on Caroline and also serves as a type of therapy for myself. It is always a joy to read what others have written and lets us know that there are people continuing to pray for us. So I don't see us stopping the page any time soon. Reading CampJack's page just made me think about the day when there will be no need to keep you updated. That day will be here, I have faith in that.
Charles, Nancy, Katherine, and Sweet Caroline
Monday, January 9, 2006 5:30 AM CST
Caroline and Katherine had a great weekend. They play so well together (except when Katherine wants some alone time and Caroline doesn't always understand). They spent some time with their grandmother on Saturday evening so that Nancy and I could go out to dinner. That is something that we don't get to do a lot of. Yesterday, we celebrated the girl's cousin's, Tori, 2nd Birthday. School is already back in swing and the girls are having their homework, so it's a regular routine thing we have to get going.
Caroline goes to the physical therapist this morning for an evaluation to see if she will need PT. I mentioned earlier that she has had problems running. Yesterday, I asked her to run for me and she looked normal. Maybe she won't need any therapy, but it would be nice to rule it out by a professional. Caroline goes on Wednesday morning to have 3 teeth pulled. She has two teeth at the top that just refuse to let go and she has a new one coming in. She has 2 teeth coming in on the bottom where she lost 2 already, but there is not enough room. They will pull one on the bottom to make room for the 2 coming in there. We have tried to prepare her for this. She was busy telling her cousin the other day about how they will stick a needle into her gum. I am going to leave work to go to the dentist that morning. I don't know why when she has to have something painful done, she wants her daddy.
This morning, I read where one of the parents of the other sites, CampJack, has decided that they need to move on with their lives and will stop posting. I don't know when that time will come for us. With there still some questions about future scans and little things going on, I know we will keep it going for a while longer. I am not sure how many of you want to hear about the little things going on. Please pray that we make the right decisions about this.
Charles, Nancy, Katherine, and Sweet Caroline
Thursday, January 5, 2006 7:26 PM CST
A year ago today, Caroline got her first stem cell transplant. It was an important day because it was a new birth. The stem cells recreated her blood that was killed off by the harsh heavy doses of chemo that she had over the previous 6 or 7 days. She stayed in the hospital for 16 more days before we were released to our half-way house for the weekend. Boy how things are different a year later. It seems like I say that each time I write, but it is so true. She is actually starting to look like she has hair. I fixed her a rooster doo this afternoon till she pushed it down. I actually suggested to her that we shave it all off again so that it might grow better. This idea was shot down by both Caroline and her mother.
The girls started back to school today and they had pretty good days. Caroline was scared of going, but she went and enjoyed the day. Caroline asked her mother how many days of school that she had to go this week and Nancy told her just Thursday and Friday. Caroline responded by saying "Yea!!" A typical student.
Caroline has to go for a physical therapy evaluation on Monday morning. She still has a funny stride when she runs. We want to make sure that she develops normally and that there is not something else there.
Continue to pray for us that whatever the spot was on the last CT goes away and that she will have a clean scan in February.
Charles, Nancy, Katherine, and Sweet Caroline
Sunday, January 1, 2006 10:00 PM CST
I hope that you got the chance to see NBC this afternoon and see the Brian Boitano Skating Spectacular. It was the event that Nancy and Caroline traveled to Las Vegas to see. AFLAC was the sponsor and they sent 10 girls and a parent for each child. Caroline was shown on the segment about the girls traveling there. They showed her skating and also at one point they showed her being held by one of the skaters and it looked like she was going to fly right into the TV screen. It was really neat to see that. A big thanks to AFLAC for letting Caroline experience such an event. Before the show came on this afternoon, Caroline got a call from her friend Kimi. Kimi is a fourteen year old cancer patient who is from Ellaville, Georgia. Her and Caroline hit it up real big. Caroline was so giddy when she was on the phone with her and after they hung up, she wanted to know when we were going to go visit Kimi. I told her that we had to find out where Ellaville is and so we looked on the internet. Ellaville is north of Americus. I told Caroline we would have to make plans to go and it wouldn't be this week. Caroline wanted to know why not and still didn't seem to understand when I showed her a map of Georgia. Distance is still a foreign concept to a 7 year old.
Charles, Nancy, Katherine and Sweet (Skating) Caroline
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