The last two weeks have not been very exciting, but that is how we like it. As for CJ’s medical status, he is doing pretty well. We started the second phase of treatment which consists of a chemo pill nightly, an antibiotic three days a week, a daily antiviral medicine daily and weekly lumbar puncture (the sleepy test as CJ calls it) with chemo to replace the spinal fluid. This makes our weekly trips to the clinic last about five to six hours. He also has to get a couple of PEG shots, which go right into the muscle on his thighs. These are not very pleasant, but quick to do. CJ’s legs are sore after so he doesn’t like them, but he doesn’t like any shots.
CJ’s attitude and appetite has changed dramatically without the steroids. He is up and playing a lot more, and eating a lot less. He has lost about six of the sixteen pounds he put on. Most of the swelling has gone away from his body, which makes him feel a lot better. We also found out he gets about a two month break before steroids begin again, and then they still won’t be for as long as it was before. His anc number has dropped a little. It started at 1600, to 1500 the following week, and 1400 last week. This is to be expected with the chemo pill. The doctors are still happy with his scores. Anything over a 1000 and he doesn’t have to be on complete lock down. We go back to the doctor on Tuesday the 28th for the final lumbar puncture during this phase. We will have the PEG shots the following week, and the second phase will be finished.
The weekly doctor trips have become easier. CJ still doesn’t like the finger poke to get the blood test done, or getting his port accessed, but it is not as big of a fight as before. I am hoping one day soon the fight will end and he will just accept it.
We did have a little draw back last Friday and spent the day at the hospital. CJ was vomiting and had diarrhea for a couple of days in a row. I wasn’t sure if it was his medicine or not, since he hadn’t gotten sick before but we did change medicines. When I called the clinic they told me to come on in to get CJ checked out. Once we got to the clinic we were sent to the hospital for IV fluids and blood tests. We found out he was getting dehydrated and had a stomach bug. He is feeling a lot better now.
As for our home life, we are trying to get a routine down, but it has not been easy. Some days CJ wants a nap, and some days he doesn’t. We are trying to figure it out together. I have tried to keep a steady bed time and wake up time to help. Hopefully since it is getting warmer and his numbers stay up we can go and do things more, but it is still a day by day thing.
Note from Mammaw Kitty: Sheree has sent pictures that I will add later. I’m sorry I haven’t been doing a very good job of keeping the blog updated. This is a rough time of year for us accountants. Things will settle down a little now and I can get my focus back!
Phew, the phases will get a bit easier and then you'll hit Delayed Intensification. Sadly, it is as bad as it sounds. BUT you have survived this so you can survive that. We pray for you all daily and wish their was more we could do. But I know there isn't.
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