Monday, July 27, 2009

Week two, better than the last


Posted by Mommy

We made it through week two of this hard phase. The good news is this week was much better than the first. CJ’s mood, tiredness, and overall feeling bad left only a day and a half after being off the steroids. The chemo didn’t make him feel as bad this last week either. We got to get out of the house with his ANC up. We didn’t do a lot, but he did get to visit a few people that he hasn’t got to see in a while. Getting out of the house did put him in a good mood, and made him very talkative.

This week we started back up on the steroids for the next seven days. He also got the same chemo treatment that he has received the last two weeks. The bad part about this doctor visit was CJ’s ANC dropped all the way down to 600, which is barely enough to receive his chemo at all. The doctors say this is normal and means everything is working correctly. The combinations of being off the steroids for a week and the chemo made them drop. I asked if his counts would come back up this week being back on the steroids but it is a toss up. With three weeks in a row of this chemo treatment it usually makes his counts stay down for a while, that is why he doesn’t get any treatment next week, to let his counts come back up before the next round.

The next round will consists of chemo four days in a row, then off three days and chemo four more days in a row along with starting to take a chemo pill daily. Most kids get delayed at this point because their counts don’t come up within the two weeks, so to expect that.

Just a reminder that CJ’s fundraiser at St. John’s Church is this Friday starting at 5 pm; it will be a lot of fun and a nice night out with fun stuff for the entire family, so come and join us in supporting CJ. Thanks in advance for everyone who can come.

Monday, July 20, 2009

We survived week one.


Posted by Mommy

Week one of delayed intensification is behind us. It was not a pleasant week at all. The new chemo, which looks like red kool aid takes all the energy out of CJ; and the steroids make you wonder if they do more harm than good. The steroids not only effect CJ’s moods and eating habits, but just make his poor little body hurt. He wasn’t as hungry this week as he was the first time we were on them, but he was only on them for a week. They do one good thing and that is make CJ’s ANC go up. It was 2700 at the clinic today which is more than it has been since he has been diagnosed. That means we can get out and go places, but when your body hurts and everything makes you mad it is best to stay close to home.

Last week we had two doctor’s visits on Monday for chemo and a sleepy test, then on Thursday for more mean pig shots, or Peg shots. The Peg shots were very hard on CJ this time; thank God they were the last ones he gets. He cried from the time we left the clinic until the shots were done, about an hour and a half. All he would say is he wants to go home now. Someone from child life came in to try to cheer CJ up with toys and to play, but he wouldn’t talk to her and barely looked at the toys she brought. After the shots were done he finally stopped crying even though we had to wait another hour before we got to go home, just to make sure he didn’t have a reaction to them. His legs were sore from the shots this time, and they usually don’t bother him.

We got to get out of the house a little this past week. CJ visited his dad, and went to a Yard Sale with his Mama Amy. He also got to visit Pap’s Chris and ride a horse around the barn yard. I am not sure who had a better time CJ or baby brother Hunter.

This week CJ is off the steroids but got more of the kool aid chemo. At the clinic today I was having flash backs of the first month of treatment. CJ was not feeling very good, which makes him clingy, and emotional. Everything from getting his blood pressure to getting his port accessed was a fight. I was hoping we were over this part but the steroids bring out the worst in CJ. The clinic being extra slow today didn’t help. We were there for three hours, which made CJ very impatient. When the doctor came in to talk to us, two hours into the visit, CJ asked her if they forgot about him or if they are just slow pokes today. All I could say is he has been on steroids for a week. We are hoping CJ will feel better this week being off the steroids, but his counts are likely to come back down without them.

Monday, July 13, 2009

delayed intensification


Posted by: Mommy

Today was the first day of the dreaded delayed intensification phase. I say dreaded because there are several different types of chemo, Peg shots, steroids, and spinal taps over the next two months. Some weeks we might have to go to the clinic up to four times. Sometimes the chemo will take over an hour not counting the clinic appointment that usually last around two hours without chemo. Plus being back on steroids we get to face the weight gain, mood swings, and 24 hour a day food cravings. Plus CJ has to learn to take pills, and will have to start taking one every night until the end of his treatment.

CJ had to have an ANC of 750 to even start this phase and he barely made it at 800. He did really well today until it was time to get his port accessed. He did better than usual but he still has problems getting it accessed. Then after the chemo we went to Kosair for a spinal tap, or sleepy test. CJ was so upset by the time he got his sleepy test that they had to sedate him before he was completely hooked up to all the machines. They have learned not to fight it, since he doesn’t have any problem with sedation and was fully checked out at the clinic a half hour earlier. He was in a much better mood when he woke up, and didn’t get sick at all unlike the last time he had a sleepy test.

We came home and CJ was hungry. It is not constant yet, but just give it a couple of days. We go back on Thursday this week for Peg shots, or bad pig shots. This is another thing CJ hates. Then back to the clinic next Monday for more chemo. It is going to be a hard couple of months, and with his counts as low as they have been it looks like we will still be home bound for awhile. We are just a week short of being stuck for two months straight, minus a couple of days in the middle, of being stuck at home. But to look on the bright side it is much better to be stuck at home than stuck in the hospital.

CJ is having his fundraiser at the end of this month at St. John’s Church. Anyone who can come we will really appreciate it. There is more info about the fundraiser on the side of the blog page.