Maintenance is here!!

Posted by: Mommy

Maintenance has finally arrived!! We went to the clinic on Tuesday to make it official, and with CJ’s ANC at only 900 it was close if we got to start or not. CJ did the best he has ever done at getting his port accessed. He fussed a little, but no kicking and screaming, that is a big accomplishment. He got his chemo and off to the hospital we go with five new prescriptions. He had to get a sleepy test (spinal tap) right after the clinic visit, this didn’t go as well. Just like the ones before he is fine until it is time to hook up the monitor. That is when all hell breaks loose. Along with a couple nurses we have to hold him down to get the monitor on him, which are just stickers. Then it is a quick slip of the sedative to relax him. It only takes a few moments and he is out of it. The doctor does the spinal tap in less than 10 minutes, and within another 10 minutes he is what I like to call a happy drunk. He is checking out his hands, since he is seeing double, and finds it funny. The nurses can’t believe that this is the same child that was kicking and screaming a few minutes before.

We don’t go back to the clinic for two weeks and that will be to check his counts. If they are in the right range everything stays the same. If they are too high or low his chemo pills will be adjusted. We are going through steroids right now for five days after he gets chemo in the clinic. They have his steroids in pill form now, which has cut back on fights about taking medicines, since CJ is becoming a pro at swallowing pills. This is a good thing considering he will have to take at least one pill every night for the next two years. The steroids are no fun as usual. CJ’s moody; no sleeping, tired behavior is in full swing. He is not having the hungry spells, but this might still come. I am hoping since he is only on the steroids for five days this won’t happen.

Now that we are in maintenance as long as CJ’s counts stay above 1000 he can go back to preschool. He is really looking forward to going back to school. I am also looking forward to this, so I can go back to work at least part time. We can finally find our new normal. CJ’s hair is coming back in which will make normal easier. Right now he has little soft peach fuzz all over his head, and dark eye brows coming in. From what I can tell his hair is going to be straight and dark, just as it fell out. He never really had a problem with not having any hair, so it might not make a big difference. The best thing is he won’t have to wear a hat every time he walks out the door. He is not a hat person. Plus looking like a normal kid will be great for school.