Posted by: Mommy
We have had a busy month this past month. First let’s start with CJ clinic appointment this past week. We got mostly good news. First CJ’s ANC was 2500. This is a little higher than they like it. But since CJ had 5 weeks in between his chemo they are not worried. If his counts stay high the doctors will adjust his chemo pills. But this month they left it the same to make sure it is not just the extra time. The good news is CJ can play T-ball this spring. He is very excited about it, along with the rest of the family. Everything we can do to make his life more like a normal kid is good.
Last week has been a rough week for our family. It started with CJ getting the stomach bug that is going around. The doctor’s at the clinic said almost everyone that has been through the clinic has had it. It is nearly impossible to avoid it. After CJ got it on New Years Day he spread it to the rest of the family. The funny part is we try so hard to keep illnesses away from CJ, and he is the one giving it to everyone else. So after getting over the bug, CJ then had to have his chemo followed by steroid week. Needless to say it has been a fun week.
Before all this happened we had Christmas. CJ was in a Christmas program at school. He had a couple of songs to sing with his class and did very good. He stood up proud and sang them both. He also had Christmas parties with his class.
Then we had several family Christmas parties to go to, including Santa coming at the house. CJ was very excited this year. He woke up around 4 am and came to tell me that Santa came. I let him know that it was too early to open presents yet and tried to get him to crawl in bed with me for a couple of hours until his little brother woke up. This didn’t happen. So me and him got up, went into the living room and watched cartoons. I was lying on the couch half asleep, and CJ kept coming over to me whispering what he was seeing in the presents and the stockings. By 5 am when Hunter woke up CJ knew what a couple of the presents were (the ones in bags) and what was in everyone’s stockings. Then when Greg brought Hunter in CJ started telling us who got what. CJ got lots of presents, but when asked at the clinic if he got anything good, he said no. So I guess Santa shouldn’t try so hard next year.
In a few weeks CJ will turn 5 years old. He seems more excited about this than he was about Christmas. I can’t say I blame him, being 4 years old for him was hard. Everything started shortly after his birthday last year. So here is to looking forward to CJ being 5. It is truly going to be a good year.
Sunday, January 10, 2010
Wednesday, December 2, 2009
Happy Holidays
Posted by: Mommy
We went to our monthly clinic visit on Tuesday this week. Everything went fine. CJ’s ANC is still at 1700, and all his other counts are good too. As long as his counts stay in this range they will not have to do anything extra or adjust any medicines during maintenance. We did have to go over to Kosair after the clinic appointment to get a sleepy test (spinal tap). These will happen every three months during maintenance to check to make sure no cancer cells go to the brain. They also give him chemo in the spine to replace the spinal fluid they take. CJ did as good as I have ever seen during the sleepy test. We did have some tears from nerves, but no fits. This is a step up from his norm. We did start steroids Tuesday, which is never fun, but last time was not bad at all, since CJ wasn’t stuck at home the entire time. We are all hoping that it goes as smooth this time around. Plus with all the holidays coming up we don’t have to go to clinic again until the beginning of January, Yeah!!
We had a very good Thanksgiving. CJ got to get out and take day trips to see most of his grandparents and great grandparents over a four-day stretch. He got to play with lots of cousins and had a good time; with lots of good food everywhere he went.
Everything has been going good, CJ is just his normal self anymore, except the fact his hair came in quite a bit lighter than before. That doesn’t bother him one bit. Just looking at him you would never think this is a kid with cancer. I thank God every day that CJ has done so well with his treatment. I also thank God for all the support all our family and friends have showed us through this year. Happy Holidays to everyone, and thank you for all you have done for our family.
Tuesday, November 3, 2009
trick or treat
Posted by: Mommy
We went back to the clinic this morning. CJ was in a good mood so everything went well, with our appointments being 4 weeks apart CJ doesn’t mind going as much. We got all good news from the doctor. All of his counts are in a good range, and his ANC is 1700, which is right where they want it. This means the chemo and all the medicines are working just like they are suppose to. We do start steroids again today for the next five days. This will be a test since it will be the first time he is on steroids during school, since it was fall break last time. He did really well on steroids last time, with less mood swings and food cravings, so I am hoping it goes as well this month.
CJ is doing great with preschool, everyone is so glad he is back. CJ has even got to take a couple of field trips. His class went to Deere Farms, which is just next door to the school. They got to go to the corn maze and pick pumpkins. Next they got to go to the firehouse in Georgetown to see the fire trucks. This is nothing new to CJ, since Greg is on the fire department in New Middletown, but he had fun none the less. I am sure he told everyone how the fire trucks worked.
CJ also got to go trick or treating twice this year. First on the Wednesday before we went to Trick or Trunk at St. John’s where CJ got to play with his friends and get quite a bit of candy in a little amount of time. For this one he was the red power ranger. Then he dressed up as wolverine and went trick or treating with his dad on Halloween night. It is great to see him get to go out and do things like any other four year old does. Not long ago I was wondering if he was ever going to get to act like a normal kid again. Now everyone he is around just treats him like a normal kid. He is even starting to look like his old self, with holding on to his normal weight, and getting his hair back.
Tuesday, October 6, 2009
a good day
Posted by Mommy
Today was the first time in a month that we had chemo through CJ’s port. Not having anything done in a month I was hoping that CJ would take it well, with little kicking and screaming. We have had problems from the beginning with CJ getting his port accessed. When I see kids at the clinic kicking and screaming through everything it makes me remember our early days of taking four people to hold down this little sick boy to get his port accessed. You just wondered how this little weak child could keep four grown people from holding him still. How we dreaded every treatment because of the pain and stress that CJ was being put through. Today at clinic was a good day. CJ sat in the chair and got his port accessed and his chemo all by himself for the first time today. I feel that we have finally hit a milestone. I know being in maintenance itself is a big milestone in CJ’s treatment, but the fact that he didn’t kick or scream he just sat still and let the nurse do what she had to do. He wasn’t mad after it was over like our normal clinic visit. CJ has grown up so much in the last seven months it is hard to believe it is the same little boy, and that he is only four years old.
We got all good news at the clinic today. CJ’s ANC is 2000. At this time in his treatment that is a very good number. The doctors want to keep his ANC low enough that they know the chemo is working, but high enough that he won’t get sick at the drop of a hat. According to the doctors CJ looks great. He does have to start steroids today which we never like, but know it is a necessary evil. He also keeps up with his normal chemo pills nightly, and weekly. But the next trip to the clinic isn’t for 4 more weeks.
The last two weeks have also been good. CJ has been going to preschool three half days a week. He loves being back, and hasn’t had any problems with the time he has missed. Ever since CJ was a baby he has been a very smart little boy. He knew lots of things before most kids his age. He was speaking in complete sentences when most kids barely spoke a few words. Since we did do lots a school work while stuck at home he is right along with the rest of his class. I was a little worried about being on steroids and going to school, but it just worked out that chemo week is on CJ’s fall break. Everything else is going good.
Tuesday, September 22, 2009
Preschool starts
Posted by Mommy
We went to the clinic today to get CJ’s counts checked to make sure they didn’t need to adjust his chemo pill doses. After arrive at 8:15 am, (a half hour early) we found the clinic empty. Everyone scheduled at 8 am was late. Being the first ones in they were very happy to see someone could make it one time, well early. The entire appointment took about 15 minutes. CJ’s ANC was at 1100, which is just where they are trying to keep it. Also since it is over 1000 we got to okay to start back at preschool.
After the clinic we also got the okay to get a dentist check up. The rules of a dental appointment while being treated for ALL, are first you have to be in maintenance stage. Next, you have to have your appointment within one week of the last blood test so the dental appointment can be approved, and last you have to take another antibiotic one hour before your appointment. After the clinic appointment I called our family dentist and told them I need an appointment within the week or after then next clinic appointment. They just happened to have an appointment today. CJ was very brave going to the dentist for his first cleaning. He talked to the hygienist the entire time asking what everything was, and how it worked. She explained to CJ what she was going to do step by step. One of the first steps was to count his teeth. Without missing a beat he told her you don’t have to count them I have 20. She looked at him and said that is right you should have 20. He just told her I know, as if he is an expert. He set very still and let her clean his teeth. The dentist came in to look at them and told us he has perfect teeth. They are straight, clean, and perfectly spaced. CJ was very happy to leave with a new tooth brush, dinosaur floss, tooth paste, and Scooby Doo stickers. He even got a compliment on his hair due.
Speaking of CJ’s hair, in the last couple of weeks he has went to bald to looking like he just got a buzz cut. His eyebrows are back in and so are his eyelashes, as thick as ever. We have offered to shave his head just so he wouldn’t look like everyone else at preschool, but he told us that his head might get cold if he does and he doesn’t like wearing a hat. CJ is very quick witted, especially for a four year old. You never know what he is going to come up with, and he doesn’t forget a time.
Well preschool starts tomorrow, and the entire family is excited. I will be starting back part time at work tomorrow also. We are looking forward to finding our new normal.
We went to the clinic today to get CJ’s counts checked to make sure they didn’t need to adjust his chemo pill doses. After arrive at 8:15 am, (a half hour early) we found the clinic empty. Everyone scheduled at 8 am was late. Being the first ones in they were very happy to see someone could make it one time, well early. The entire appointment took about 15 minutes. CJ’s ANC was at 1100, which is just where they are trying to keep it. Also since it is over 1000 we got to okay to start back at preschool.
After the clinic we also got the okay to get a dentist check up. The rules of a dental appointment while being treated for ALL, are first you have to be in maintenance stage. Next, you have to have your appointment within one week of the last blood test so the dental appointment can be approved, and last you have to take another antibiotic one hour before your appointment. After the clinic appointment I called our family dentist and told them I need an appointment within the week or after then next clinic appointment. They just happened to have an appointment today. CJ was very brave going to the dentist for his first cleaning. He talked to the hygienist the entire time asking what everything was, and how it worked. She explained to CJ what she was going to do step by step. One of the first steps was to count his teeth. Without missing a beat he told her you don’t have to count them I have 20. She looked at him and said that is right you should have 20. He just told her I know, as if he is an expert. He set very still and let her clean his teeth. The dentist came in to look at them and told us he has perfect teeth. They are straight, clean, and perfectly spaced. CJ was very happy to leave with a new tooth brush, dinosaur floss, tooth paste, and Scooby Doo stickers. He even got a compliment on his hair due.
Speaking of CJ’s hair, in the last couple of weeks he has went to bald to looking like he just got a buzz cut. His eyebrows are back in and so are his eyelashes, as thick as ever. We have offered to shave his head just so he wouldn’t look like everyone else at preschool, but he told us that his head might get cold if he does and he doesn’t like wearing a hat. CJ is very quick witted, especially for a four year old. You never know what he is going to come up with, and he doesn’t forget a time.
Well preschool starts tomorrow, and the entire family is excited. I will be starting back part time at work tomorrow also. We are looking forward to finding our new normal.
Thursday, September 10, 2009
Maintenance is here!!
Posted by: Mommy
Maintenance has finally arrived!! We went to the clinic on Tuesday to make it official, and with CJ’s ANC at only 900 it was close if we got to start or not. CJ did the best he has ever done at getting his port accessed. He fussed a little, but no kicking and screaming, that is a big accomplishment. He got his chemo and off to the hospital we go with five new prescriptions. He had to get a sleepy test (spinal tap) right after the clinic visit, this didn’t go as well. Just like the ones before he is fine until it is time to hook up the monitor. That is when all hell breaks loose. Along with a couple nurses we have to hold him down to get the monitor on him, which are just stickers. Then it is a quick slip of the sedative to relax him. It only takes a few moments and he is out of it. The doctor does the spinal tap in less than 10 minutes, and within another 10 minutes he is what I like to call a happy drunk. He is checking out his hands, since he is seeing double, and finds it funny. The nurses can’t believe that this is the same child that was kicking and screaming a few minutes before.
We don’t go back to the clinic for two weeks and that will be to check his counts. If they are in the right range everything stays the same. If they are too high or low his chemo pills will be adjusted. We are going through steroids right now for five days after he gets chemo in the clinic. They have his steroids in pill form now, which has cut back on fights about taking medicines, since CJ is becoming a pro at swallowing pills. This is a good thing considering he will have to take at least one pill every night for the next two years. The steroids are no fun as usual. CJ’s moody; no sleeping, tired behavior is in full swing. He is not having the hungry spells, but this might still come. I am hoping since he is only on the steroids for five days this won’t happen.
Now that we are in maintenance as long as CJ’s counts stay above 1000 he can go back to preschool. He is really looking forward to going back to school. I am also looking forward to this, so I can go back to work at least part time. We can finally find our new normal. CJ’s hair is coming back in which will make normal easier. Right now he has little soft peach fuzz all over his head, and dark eye brows coming in. From what I can tell his hair is going to be straight and dark, just as it fell out. He never really had a problem with not having any hair, so it might not make a big difference. The best thing is he won’t have to wear a hat every time he walks out the door. He is not a hat person. Plus looking like a normal kid will be great for school.
Maintenance has finally arrived!! We went to the clinic on Tuesday to make it official, and with CJ’s ANC at only 900 it was close if we got to start or not. CJ did the best he has ever done at getting his port accessed. He fussed a little, but no kicking and screaming, that is a big accomplishment. He got his chemo and off to the hospital we go with five new prescriptions. He had to get a sleepy test (spinal tap) right after the clinic visit, this didn’t go as well. Just like the ones before he is fine until it is time to hook up the monitor. That is when all hell breaks loose. Along with a couple nurses we have to hold him down to get the monitor on him, which are just stickers. Then it is a quick slip of the sedative to relax him. It only takes a few moments and he is out of it. The doctor does the spinal tap in less than 10 minutes, and within another 10 minutes he is what I like to call a happy drunk. He is checking out his hands, since he is seeing double, and finds it funny. The nurses can’t believe that this is the same child that was kicking and screaming a few minutes before.
We don’t go back to the clinic for two weeks and that will be to check his counts. If they are in the right range everything stays the same. If they are too high or low his chemo pills will be adjusted. We are going through steroids right now for five days after he gets chemo in the clinic. They have his steroids in pill form now, which has cut back on fights about taking medicines, since CJ is becoming a pro at swallowing pills. This is a good thing considering he will have to take at least one pill every night for the next two years. The steroids are no fun as usual. CJ’s moody; no sleeping, tired behavior is in full swing. He is not having the hungry spells, but this might still come. I am hoping since he is only on the steroids for five days this won’t happen.
Now that we are in maintenance as long as CJ’s counts stay above 1000 he can go back to preschool. He is really looking forward to going back to school. I am also looking forward to this, so I can go back to work at least part time. We can finally find our new normal. CJ’s hair is coming back in which will make normal easier. Right now he has little soft peach fuzz all over his head, and dark eye brows coming in. From what I can tell his hair is going to be straight and dark, just as it fell out. He never really had a problem with not having any hair, so it might not make a big difference. The best thing is he won’t have to wear a hat every time he walks out the door. He is not a hat person. Plus looking like a normal kid will be great for school.
Monday, August 31, 2009
good news at last
Posted by Mommy
We had good news at last today. We went to the clinic last week Tuesday with CJ’s ANC only at 200 and is hemoglobin a little on the low side, so they had us come back on Friday. Friday his ANC was up to 500 but his hemoglobin down a little more. It was border line on him getting another blood transfusion. They decided they would give him a couple more days and if his hemoglobin didn’t come up he would have to give him another blood transfusion this Monday. We came into the clinic this morning ready for anything. We were thrilled that his ANC is up to 1100, and his hemoglobin is up also. That means maintenance starts next Tuesday! We have to go in early on Tuesday for another sleepy test, and chemo. He will also have to start taking a chemo pill daily and steroids five days a month.
We have been practicing taking pills this week so we can be ready. After talking to the clinic’s therapist about methods on getting kids to take pills, CJ is becoming a pro at it. We started with Nerds candy since they are so small, and then we moved up to mini M&M’s, and finally regular size M&M. He is excited that he won’t have to taste the yucky pills, and wants to be the best pill taker in the whole world. I told him to keep practicing and he could be. We even have Hunter clapping for CJ every time he swallows a piece of candy. I just hope this continues when we get the pills and he has to take steroids at the same time.
We are just so glad that we are out of the scary part of his treatment. We are looking forward to getting back to normal, or at least starting our new normal. For the most part we will only have to go to the clinic once a month. This means preschool will be possible in the near future. Just keep praying for no relapses so the next two years will go by fast.
We had good news at last today. We went to the clinic last week Tuesday with CJ’s ANC only at 200 and is hemoglobin a little on the low side, so they had us come back on Friday. Friday his ANC was up to 500 but his hemoglobin down a little more. It was border line on him getting another blood transfusion. They decided they would give him a couple more days and if his hemoglobin didn’t come up he would have to give him another blood transfusion this Monday. We came into the clinic this morning ready for anything. We were thrilled that his ANC is up to 1100, and his hemoglobin is up also. That means maintenance starts next Tuesday! We have to go in early on Tuesday for another sleepy test, and chemo. He will also have to start taking a chemo pill daily and steroids five days a month.
We have been practicing taking pills this week so we can be ready. After talking to the clinic’s therapist about methods on getting kids to take pills, CJ is becoming a pro at it. We started with Nerds candy since they are so small, and then we moved up to mini M&M’s, and finally regular size M&M. He is excited that he won’t have to taste the yucky pills, and wants to be the best pill taker in the whole world. I told him to keep practicing and he could be. We even have Hunter clapping for CJ every time he swallows a piece of candy. I just hope this continues when we get the pills and he has to take steroids at the same time.
We are just so glad that we are out of the scary part of his treatment. We are looking forward to getting back to normal, or at least starting our new normal. For the most part we will only have to go to the clinic once a month. This means preschool will be possible in the near future. Just keep praying for no relapses so the next two years will go by fast.
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