Posted by: Mommy
CJ’s monthly chemo was on Tuesday. His ANC was 1700, just about perfect. The rest of his numbers were pretty good also. After last month’s melt down at clinic I have been talking to CJ a lot about chemo and why we have to do it. I have been doing my best to get through to him that sometimes we have to do things even if we don’t want to, and that is no reason to throw a fit. I also explained to him how much easier it is when he is good at chemo and holds still. After a month of talking we got to go see if it paid off. CJ was in a good mood on chemo day, he had no problems with his blood test, or the doctor giving him his check up, but this is pretty normal. Then the nurse came in to give him chemo, and brought help just in case. CJ was the perfect angel. He even talked and joked with them the whole time. One of the nurses was asking him about the zoo, and if he knew they had some dinosaurs at the zoo now. CJ looked at her funny and as serious as he could and told her she had to be wrong because dinosaurs are extinct. After chemo was finished the nurse went and got him free zoo passes for being so good, so he could see the dinosaurs. I am very proud of CJ, and hope this will be the new norm. After it was finished he told me it just hurts a little, but he is tough. I tried to tell him if he used the magic cream they gave him it wouldn’t hurt at all. He said he was tough and he didn’t need it. He has never like the magic cream, so we let him go without as long as he wants to.
Next week CJ starts kindergarten. He is very excited about it, and asks me everyday how many more days until he gets to go to school everyday. CJ has always loved school, and loves to learn. We drive down the road and play games where I give him a letter and he tells me words that start with that letter, (usually animals). He also wants to know how words are spelled, so far I am able to tell him, I just hope he doesn’t get to the hard words soon, since I am terrible speller.
Thursday, July 22, 2010
Thursday, July 1, 2010
take the good with the bad
Posted by Mommy:
CJ had his monthly chemo on the 22nd of June. It started out very good. He was in a good mood, had no issues with the doctor, or the finger poke. He was just talking and playing the entire time. His ANC was 1900, which you can’t get better than that. It is not too high that the chemo is not working, and it is not too low where he is at risk of an infection. I was very happy with this since the week before we had to go to our family doctor because CJ’s allergies have been acting up. His eyes were getting yucky and needed some drops to clear them up. Like I said everything was going good. That is until we get to the chemo room. As soon as we walked into the chemo room, which is a big room with several big reclining chairs, toys, TV’s, and lots of fun looking things, CJ decided he wanted to go home. To bad we hadn’t got the chemo done yet. After three times cleaning his port area, and two nurses and myself making him hold still we finished chemo. The normally easy thing that doesn’t take 5 minutes took 20 minutes. We left with both me and CJ upset. All he would tell me is he didn’t want to get chemo today. I tried to explain that sometimes we have to do things we don’t want to do, I know I didn’t want to help two nurses hold my son down to put these chemicals into his body that I know makes him feel bad for the next couple of days, but we have to. By the time we got home he was over it, and playing just as nothing happened. I know it can be a good thing that CJ is very strong willed and stands up for what he wants, but some days I wish he would just go with the flow, it would be so much less stressful on both of us.
Thursday, May 27, 2010
My son the flirt
Posted by Mommy
CJ went the clinic this past Tuesday for his monthly chemo. This month he also had to get a spinal tap or sleepy test as CJ calls it. Chemo was a little rough this month. CJ got into his head he didn’t want chemo and there was no changing his mind. His ANC was 2300, which is a little high, but not high enough to do anything such as raise his chemo dose again.
After an emotional chemo we took the long walk across the pedway to Kosair. We get up to OMO on the 7th floor with no waiting. That is always good. Sometimes there could be up to a couple hours of waiting with a child that can’t eat or drink. But this time we got right in and with CJ still a little mad about chemo that was a very good thing. Then our nurse Nikki walked in. This nurse was very petite and pretty. CJ became an instant flirt. The normal process of getting CJ hooked up to the monitors is usually a pain at best. This time he was asking to help the nurse in any way he could. Not a single bad act or mean word came out of CJ’s mouth. He was brave the entire time, and acting as if he is the perfect angel every parent wants. So I decided that we need to keep Nikki, and send her to the clinic during CJ’s chemo days. Now if I could just talk her into it.
Medals 4 Mettles
Posted by Mommy
CJ was lucky enough to participate in the Medals 4 Mettles program. This is a program that has people volunteer the run marathons and mini marathons and then give their medals to people who have struggled with medical problems. It is done all over the US, but in Louisville several dozen medical students from U of L ran in the derby mini marathon, and gave their medals for participating to the cancer patients at Kosair.
CJ’s medical student’s name is Sam. He was very nice and we believe he will make a very good doctor. We want to thank him for running thirteen miles in the rain, to finish the mini marathon just so CJ could get a medal.
Thursday, April 15, 2010
counts check
Posted by Mommy
We took CJ back to the clinic on Tuesday to get his counts checked. They wanted to make sure that they didn't adjust his chemo too much during the last visit. His ANC was at 1500. This is back down where they want it, and hopefully we won't have yoyo counts again.
CJ started his t-ball games last weekend. He is loving t-ball. All he wants to do is practice baseball. He wont stop until you make him, no matter how long he is playing. I love seeing him enjoying something so much. He had a game tonight and hit the ball on the first swing both times up to bat. He also caught a ball on one bounce and go a couple more on the roll.
Tuesday, April 6, 2010
good day at clinic
Posted by Mommy:
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.
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.
Friday, March 19, 2010
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.
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.
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