good day at clinic

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CJ had a clinic appointment on the 30th. During this appointment CJ’s ANC was at 1600, this is back down to where they want them, but since his counts have been going up and down instead of staying consistent the doctors changed his chemo dose. They did this for a couple of reasons. First CJ’s counts have been going up and down since the beginning of the year. Next, CJ has grown since he has got to the maintenance stage. He has grown 3 inches and 5 pounds in the last six months. We have to go back on April 13th the check his counts again to make sure they didn’t adjust them too much or not enough. CJ did do well at clinic getting his chemo this time. After a little talking into it, he just laid on the bed and held my hands and let them do it. He found out how much faster it was and didn’t hurt. We still had a few tears from nerves, but other than that he did very well.

CJ has started t-ball practice and has his first game this weekend. He has been practicing most of the last month and had a practice game last night. You have to love t-ball watching all the 4-6 year old kids learning something new. Most are looking around, playing in the dirt, setting in the grass, but not CJ. CJ pays close attention to everything that goes on. If the ball goes into the half of the field he is in, he is running after it. His favorite part is batting. He is pretty good at it too. All he wants to do anymore is practice t-ball. He gets really excited about going to practice, and wants everyone to come watch him. We went to get his baseball pants and socks, and can’t wait until he gets to wear his black pants and purple socks. I will post pictures after his games.

Year one down

Posted by: Mommy

We had a big day on our last chemo day. First we had CJ’s normal chemo, and then his sleepy test, (spinal tap). First at clinic CJ’s counts were 3500. This may seem good, but not for the maintenance stage. During maintenance the goal is to keep CJ’s ANC between 1000 and 2000. This is ideal because it is high enough that the risk of infection is not extremely high, but it is low enough that the doctors know the chemo is working. If CJ’s counts stay high for a couple of months in a row they will increase his chemo. CJ did well at his chemo and sleepy test, no big fits were thrown. We had to share the big room at OCO this time, and I think the fact that CJ knew another little boy was on the other side of a curtain getting ready for the same thing made him want to be brave. We had a week of steroids after the chemo, which is usually a bad week, but this month wasn’t as bad as usual. I know CJ does better the more he gets to get out of the house and now it is getting warmer he gets to play outside more.

Another reason that this was a big week was because March 6th was the one year anniversary of CJ’s diagnoses. It is hard to believe that it has been a year since that awful night that changed our lives forever. It is also amazing how far CJ has come since that long night. You look at him now and he doesn’t seem sick most of the time. Just looking at him from that bald heading little boy with the cubby checks, to his now still the tallest kid in his class, with his thin frame and full head of hair, he looks perfectly normal. We don’t have people see him and ask what is wrong. We did our best this entire time to treat him as much like a normal little boy as possible. We knew that one day he is going to get over this illness and be a normal boy just like everyone else, and we didn’t want him to feel any other way. CJ is strong and brave and he is my hero for being so tough. I know it has been hard on him, it has been hard on the entire family. But now the rough part is over. We made it through. Now he is playing t-ball with all the other little boys and girls his age, and I feel so happy to know that he is winning his fight.

CJ is 5!

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Another month passes and another chemo appointment comes and goes. CJ is right on track with his treatment. His ANC was 1900 this past month so they didn’t have to adjust his medicine as they thought they might last month. He is responding just like he is suppose to. We had a rough time at the clinic this time. CJ got in his head that he didn’t want chemo, and fought tooth and nail to stop it. After all said and done he got his chemo and I got a fat lip from a head butt to try to stop me from holding him still. I had a few flash backs to the beginning of his treatment when every visit was like that. I guess I should be thankful that these bad reactions are few and far between anymore.

On a good note CJ turned 5 years old this last month. With the bad weather we didn’t do anything big, but had cake and ice cream with a few presents. When I asked CJ what kind of cake he wanted for his birthday all I got was a square one. After a little more questioning I got him to tell me he would like a square cake with balloons on it and the number 5. So that is what he got, plus he got to help decorate it. He loved helping me with the balloons and his little brother was doing everything he could to get a bite of cake before it was time. CJ also had cupcakes at school on his birthday, and got to help decorate those too. It is nice to see him take pride in doing things like that, and he got to tell all of his class he made the cupcakes.

With the snow we had also comes sledding. CJ got to go sledding a little and play in the snow. Him and his little brother had a lot of fun throwing snowballs and sliding down the hill. CJ also taught Hunter to make a snow angel. Not sure Hunter got the whole concept, but lying in snow is a fun thing.

CJ also got signed up to play t-ball. Now all we have to do is wait until it starts. He is very excited about playing. He tells me all the sports he wants to play when he gets bigger (which is almost every sport out there), and wants to know when he can play them. So the fact that he is starting on his list is a big step for him. I think his family is more excited than he is.

rough start to a new year

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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.

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.

trick or treat

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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.

a good day

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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.