Start of a very long week

Posted by Mommy

CJ had a really good week last week, and he was due one. After another week on steroids his counts were up to 3200. This makes me think the only good thing about steroids is they make his counts go up. After he ended the steroids his attitude was better and his aches were down. He got to get out of the house and spend the night with his dad. He also got to go to the zoo. He rode around in his wagon with Hunter looking at all the animals. We spent the most time making duck calls at the ducks and trying to get them to call back. Hunter is really good at this.

I could tell on Sunday CJ was starting to feel at little bad, which usually means his counts are coming down. He was being moody and wanting to take naps. Hunter went to Ganny’s house Saturday night and stayed until Wednesday morning, because we knew what this next week was going to be like. This was a very good thing as CJ doesn’t handle Hunter wanting to play with him very well when he doesn’t feel good.

Tuesday we were scheduled to be at the clinic at 8:00 am, and then we were expected at Kosair’s OMO by 9:30 am to start the longest day of out patient treatment. I was told last week to expect at least 8 hours. Clinic went fine; CJ was in a good mood and let the doctor examine him without complaint. His ANC was only 750, which is the minimum it had to be to start chemo this week. We were out and headed to OMO around 9:00.

When we arrived at OMO around 9:15 we were told they didn’t have a room for CJ. This did not make any of us happy. CJ had to have a spinal tap, so he had not had anything to eat or drink all morning. The only good thing about having to wait on the 7th floor is CJ got to go to the play room to wait. We played in the playroom for 2 hours without a room. CJ was getting tired and hungry so we went back to the waiting room to watch TV and rest. By this time CJ was very cranky and fussing. I tried to comfort him as much as I could, but I wanted to lady at registration to hear him to know how bad of a thing they were doing to make a four year old wait this long without eating and drinking. Luckily he fell asleep for the next hour. After he woke up we finally got a room, 3 ½ hours after arriving at OMO.

After getting into a room I started pulling at things in the suitcase I packed to keep CJ busy on this long day. First Greg and CJ played against me on go fish. CJ really enjoyed that. Then it was time to get his port accessed. CJ was not in a good mood by this time and it took three of us to get the job done. Shortly after that the sedation lady came in and started to take the edge off. I sent Greg down to McDonald’s as soon as CJ was out. By this time it was after 1 pm, and all three of us were starving, since there was no way any of us would eat since CJ couldn’t. As soon as he woke up from the sedation he was hungry. He had to get some liquids in him before he was allowed to eat. As soon as he could he was eating French fries. When the spinal tap was over they hooked CJ up to liquids before he could start the hour long chemo. It took 2 ½ hours before they started the chemo, then an hour of chemo, and three more hours of liquids. We had an evening of watching movies, reading books, and playing go fish and tic tac toe, all that I had packed for the long day along with snacks, along with the computer to help Greg and I not go nuts.

With two hours of liquids left we were moved to 7 West so OMO could shut down for the day. All I could think is if they would have had a room waiting for us like they were should had, we would have left by now. When going to 7 West we went back to the playroom. They had a room for us, but it wasn’t clean yet. It didn’t get cleaned until 8 pm. We played Candy Land and Chutes and Ladders, along with basketball the next two hours before finally leaving at 8:50 pm.

CJ had to leave his port accessed for the next three days. We have to have a home nurse come and give CJ chemo on Wednesday, Thursday, and Friday. Wednesday the home nurse came to give CJ chemo. It went pretty well. Hunter was napping, and CJ just woke up from his nap about 30 minutes before the chemo. He wasn’t real happy to have it done, but he didn’t fight it either. Hopefully now that he has met the nurse it will go better the next two days. Friday the home nurse will un-access his port and we will have the weekend off before going back to the clinic on Tuesday to start over, minus the long day. We will still have to do the chemo four days in a row. CJ also has to start taking a pill every night. This is a challenge, so if anyone has any suggestions on how to get a stubborn four year to swallow a pill let me know.