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Posted by Mommy

Just wanted everyone to know we did make it home on Monday night. CJ has a cold, nothing more serious. He is still feeling tired and trying to get over it, but not sick enough to need the hospital. We might have to stay home through Christmas, but better at home than in the hospital.

quick update

Posted by Mommy

Just a quick update, CJ is in the hospital. He is running a fever and anytime he gets a fever we go to the hospital. We don't have any information as of yet, but hoping it is just a cold and we won't be in here more than a couple of days. We won't know anything for sure we just got to wait and see how CJ reacts, when he gets the fever down and how long he can keep it down. Just send prayers for a speeding recovery.

no news is good news

It’s been a couple of months since I have update, but just remember no news is good news. CJ’s last couple of clinic appointments have gone well. The only changes that have been made is that one of CJ’s chemo pills the dose was increased. The reason for this is that he grew an inch in a month. He has tolerated the change just fine with no side effects.

CJ has made it through his first full year of maintenance without any hospital stays. During his treatment he has six months of intense chemo, two and half years of monthly chemo through his port, along with daily medicines during maintenance, and then five years of observation, before he is considered cancer free.

At home CJ has started kindergarten. He really likes school and his new teacher. He has been learning new words every week, and reading more and more. He loves to learn new things, and even likes doing homework.

We also got to use CJ’s zoo passes that he got from being good at clinic. Both he and his little brother loved the zoo. CJ says his favorite animal was the giraffe. It took so long to go since we were waiting for it to cool off before we went. We got to see the monkeys playing, the lion roared for us, and even the gorilla posed for a picture. It was a good day.

A good day

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.

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.

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.