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.

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.

Interim Maintenance finished

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Interim maintenance phase of CJ’s treatment is now finished. Today was his last dose of methotrexate, or energy juice as CJ calls it, through his port. His anc was just under 1000 today. Since it is up from last week Dr. Raj decided to give CJ a little bigger dose of chemo today. He also let us know that his counts will come down from this, so for the next two weeks at least we are still home bound. We have to go back to the clinic next week for a count check just to make sure the chemo didn’t bring CJ’s counts too much. The next phase will start after his counts come back up enough to receive chemo again; the doctors are hoping two weeks.

As for the holiday weekend, we will be home still. The silver lining to this dark cloud is that we can see Corydon’s fireworks from our front yard. We just can’t have our party this year, because of CJ’s counts this low. Hopefully next year will be better, when we are settled into a more normal life. Well, at least we will be into our new normal knowing that our lives will never be same as they were before cancer. I am sure everyone knows that life can change in a second and never be the same again. Sometimes it is good, and sometimes it is bad, but life is what you make of it. We are bound and determined to make this into a good thing. I just I to keep telling myself it is all about attitude. After all the only disability in life is a bad attitude.

Freedom short lived

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We had five days that we didn’t have to be stuck in the house this last week. CJ got to get out of the house and go swimming, and spend some time with his dad at his house. We didn’t do anything big, even though we spent almost an entire month stuck at home. Well I guess we missed out because when CJ went to the clinic today his ANC is back down to 800. According to the doctor this is normal, and it means that the chemo is doing its job. His counts are going to go up and down during his treatment and not to worry, but just take the precautions they set when his counts are in this range, which means staying at home. CJ can go outside and play with his counts where they are right now he just has to limit it, and only do it at home. We can’t take the chance of catching something from some where else.

The clinic visit today was a fast one. Anyone who has ever had to go to the clinic knows that this is unusual; a two hour visit is the norm, not the exception. Today’s visit took less than 20 minutes. This short of a visit was good and bad. First the good, we didn’t have to set and wait at the clinic. We got to go over to Kosair after a quick visit. The bad news was since we were due Peg shots today; we had to wait there for a bed. I guess they were also expecting a two hour clinic appointment also. We had to wait almost two hours before they had a bed for us. This normally is not fun, but since CJ was feeling pretty good today they let us wait in the playroom at 7 West.

CJ really got to know the playroom in March after spending most of the month there. He was very excited that he got to go back there and play while we were waiting. As soon as we walked into the playroom, CJ went for his favorite toys during our last stay at Kosair. They have a police car that has sirens and a handcuff on the front of the car that shots out and grabs stuff. He played basketball for a good 30 minutes of our wait, and we also played games and even pretend cooked some lunch.

After our wait in the playroom we went to our room at 7 East, which upset CJ quit a bit. He knew what was coming and told the nurse and me how much he didn’t want “mean pig shots.” The best part about the Peg shots is that they are fast, and then you have to wait an hour before we could leave. By the time we left CJ had made friends with all the nurses that were around, and even left with a Thomas the Train balloon that the child life people brought by.

After the Peg shots you have to watch for soreness, a rash, and irritably. CJ on the other hand was in a good mood, without the slightest mark on him, and has run around the house and played Wii since we got back. I just wish the nurses could see CJ right after his treatments. They would all be surprised how active he gets.

Home bound no more, maybe

Posted by Mommy

I am glad to say after being stuck at home, inside for almost a month now, CJ’s ANC has finally came up to 1500!! I guess they found the magic dose of chemo last time, enough to do the job, but not too much to make his counts too low in the danger zone.

We had another long day at the doctor today. We started at the clinic at 8:00 am for his regular appointment. CJ got his Vincristine though his port at clinic. Then with his port still accessed we went to Kosair for a sleepy test as CJ likes to call it or a spinal tap in more technical terms, with his Methyltrexate.

CJ seemed to be in a very good mood all morning. He wasn’t happy about getting his port accessed but accepted it, and then after he got his chemo at the clinic they gave him chemo beads. They have a long sting and lots of beads that represent different things. They include letter beads with his name, one for getting his port in, one for losing his hair, one for getting his finger poked, and one for getting chemo. From now on every time he gets anything done, such as chemo, Peg shots, or a spinal taps he gets beads to add to his chain. It kind of gives the kids something to look forward to since they have to come back so often.

CJ likes to go over to the hospital for a couple of reasons. First we park in Kosair’s garage and his gets to ride in his cart over the walk way. In CJ terms we take the long walk, but truth be known, I take the long walk while he rides in the cart. Next, every time we go register for an outpatient procedure, we go to the vending machines and he gets to pick out a drink and a snack to take with him. He loves pushing the buttons, getting the snacks out by himself, and then if change comes out he is amazed. The funniest part is that I can pack his lunch box full of snacks, but they are not good enough unless they come out of the machine, even if it is the same snack.

Finally spinal tap went fine. CJ was calmer than usual during the procedure. He woke up fine as usual; a happy drunk is the best way to describe him. The only thing they did different is not only did he get the Methyltrexate during the spinal tap, but also in his port after the spinal tap was over. After five hours at the doctor/hospital we left to go home. On the way home CJ got sick. This is the first time the chemo has made him sick, but it is also the first time he has done the Methyltrexate and Vincristine plus a spinal tap on an empty stomach. He has had a hard time keeping things down since. As for my list of job titles, puke catcher is added at least for the day. I feel so bad for the poor guy, he is finally able to leave the house and he gets sick. Here is hoping for a feeling good weekend, so this being sick doesn’t last.

Good News, Bad News

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Well we went back to the doctor today, and we had good news and bad news. First CJ’s counts were up enough to get his chemo. They again gave him two kinds that come along in this phase, Vincristine and Methyltrexate. CJ did very well at clinic. It was one of the fastest trips we had, not because of what we had to do but there just weren’t that many kids in there this morning. This is very unusual; the clinic is usually packed at all times.

The bad news is CJ’s counts were barely up enough to even get chemo today at an ANC of 540, the minimum to receive chemo is 500. They didn’t increase the dosage this time since last time it dropped his ANC count by 1100. Since his counts are so low and the chemo tends to drop them even lower we have to be extra careful. If CJ gets any fever or anything else from the long list of symptoms they give you to look out for, we go back to the doctor and very likely the hospital for a stay. That is why we are still home bound for at least ten days when we have to go back to the clinic. We still have to limit the amount of visitors, and make sure any we get have no illness.

For more good news, when we got home today, CJ was in a good mood wanting to play. The chemo doesn’t seem to affect him the way most people picture chemo in their heads. He has never gotten sick to his stomach or extremely tired because of the chemo. In fact it seems to do the opposite for CJ that is why he calls it energy juice. Most days after he gets chemo CJ wants to eat, usually more than he does on a normal day. After eating he wants to play, and play and play. A lot of times he plays the Wii, boxing is his favorite. Anyone who has played the Wii knows boxing is a very tiring game. The only bad part about all this is when CJ does get tired he crashes hard. His mood turns quickly from good to bad, and nothing short of sleep will get him out of this mood. The mood is really bad when he hasn't taken his medicine for the night yet, and the fight is on to get medicine in him before he goes to sleep.

Tonight we watched the TV show Wipeout, CJ loves to watch it and made his own “Knock out game” as he calls it in the middle of the living room. Then he would run the course several times showing me how much better he is than the people on TV. One thing is for sure CJ’s imagination has not been effected from his treatment.

Still Waiting

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CJ has come long way in the last three months. When we first started going to the clinic everything upset him. He cried to get his vitals done. Now he can tell you what step is next and helps the nurse take all of them. The finger poke to find out his counts was a big deal and what he dreaded most, and he had to be held still to get it done; now he is setting in the chair by himself picking a finger to poke. When the doctors came in the room three months ago it was automatic tears. Now he jokes with them and doesn’t mind getting listened to. Even the port access is easier now. We are bragging on him on how tough and big he is getting.

CJ had an appointment on Tuesday this week. He was brave and tough for the finger poke and ready to get his straw put in when they told us his ANC is still at 400. His counts have to be at a minimum of 500 to get any chemo. Since they were too low they sent us home on lock down again and told us to come back on Friday.

Friday we went back to the clinic for try number two to get chemo. After CJ explained to the nurse how to take vitals he played in the chemo room with Vivianne who was there to get her monthly chemo treatment. CJ got to see how brave Vivianne was getting her port accessed and decided he could be even tougher. We went to get his finger poked, which he didn’t even want to sit on my lap to get it done, and picked out a finger to get poked. He even talked to the nurse the entire time she was doing it telling her how it is done. After a short wait the doctor came to the room and told us his counts are still at 400. That means we went home without chemo and have to come back next Wednesday to try again. I asked the doctor what we could do to make the counts go back up. He told me that only time could make them go up. The worse part about CJ’s counts being down and not getting his chemo is it delays his entire treatment. These delays are to be expected, but it doesn’t make them easier.

Being stuck at home for a week and a half means you have to be creative to keep little minds and hands entertained. One thing that we have done is indoor swimming. We put a small blow up kiddy pool in the living room and filled it with balls. When you remove the balls this same pool can be put over the ottoman and the coffee table to make a tunnel, add a blanket and it is a cave. We have had indoor picnics and craft time to help fill the time. We have also started doing school time during Hunter’s nap each day. We practice writing letters and numbers, CJ also loves dot-to-dot puzzles. When trying to get him to color he informed me he is just not the coloring type. CJ really enjoys school time each day. He prefers numbers over letters so we have worked on adding and subtracting, the balls from the pool are great for this, especially when baby brother comes and grabs one or two.