Last week John was sick and very tired. I thought that something was wrong because he didnt have his usual energy. We have to get blood taken twice a week so I assumed that something was off. When we got the results back I saw that I was right.We had to get a transfusion of blood and platelets. That put off chemo until this week. If his red blood cells and his platelets are low his body can not handle the stress of chemo also. Other than not feeling well and his dad and I constantly waking up to care for him and give him medicine the week was pretty uneventful.
Today started his 17th week/ round and is a 5 day chemo. We hydrated him all night through his G-tube ( stomach tube) so we thought that he would be ready to start this morning. We had an appointment at 8:45 so that he would be done and ready for his scans by noon. He wasn't hydrated enough so we had to wait and get fluid. then we tested his urine and hydrated and tested and hydrated and so on...
He was finally ready around 11:30 but there wasn't enough time before his scans. We went over to radiology and he had an MRI done of his head and CT of lungs. He was able to do the MRI without sedation which is a first for him. He was very still and didn't complain. That cut back on the amount of time we had to stay there because he didn't have to go to recovery.
We then had to go back to the clinic to get our scheduled chemo. Since the scans took so long we were only able to get one of the drugs that he needed. For the rest of the week he will get an increased dose of Itoposide to make up for the missed dose today. The doctor said that it shouldn't affect the way he feels or anything. He also is connected to a pump that is hydrating him 24 hours a day until Saturday. The bags have to be changed , which usually means the middle of the night. At least his port is only accessed once this week. Hopefully by the end of the week we should have the results of the scans. We were finally able to leave the hospital around 4:45 but we have to be back again at 9:30 tomorrow. It was a very long day and he was very tired.
The pictures below are ones that were taken today. the first one is from tonight. He is sleeping in a chair in the living room in front of the TV. He has his food and fluid hooked up on the pole and of course his bucket next to him. The other picture is from today at chemo. He was drawing a picture.