Sunday seemed to be an okay day. Reece felt pretty normal and my parents spent part of the afternoon playing with him. We both slept well the night before, but by the end of the day, after my parents had cleared out, the weekend’s events had caught up with all of us and we were all tired. I left the hospital to sleep at home and Terry stayed with Reece overnight. I left around 8 pm and Reece was close to nodding off. Apparently around 9 pm, Reece awoke to the beeping of the machines and had a hard time falling back asleep. He was homesick. He misses home, our family, his things. He was pretty matter-of-fact about the next morning, but it was an emotional evening for Terry and Reece. I told him that I was at home that night and even though I was in our house, I was homesick, too. I reassured him that without our family together, it doesn’t feel like home.
Yesterday, Reece had his first rounds of radiation. He handled them beautifully and sat very still the entire time. He watched “Happy Feet” while it was happening; the doctor commented on how amazed she was to see a four-year-old sit still. He sits on a bed with his legs together and his knees in the air. His feet are taped to the bed. They put rubber gloves on his hands and tape his hands to the sides of his knees. They tape his head to the bed so he knows where he needs to keep it positioned. It is just masking tape, so he could easily wriggle out of it–I think young kids often do. Then, he sits for roughly 8 minutes, they rotate him and he sits for 8 minutes more. It is important that he doesn’t move so that the proper amount of radiation is distributed to his entire body. Should he start moving, they could opt to sedate him. Since he receives two rounds a day and you can not eat for six hours prior to sedation, he would not be able to eat anything until basically supper. I am very relieved in how well he is doing with the procedure.
One special “treat” if you want to call if that of radiation is that Reece actually gets to leave his room. He opted for a wheel chair ride both times versus walking (simply because I think he thinks the wheelchair is fun). Once he got to the radiation department, he ran down to the machine–he definitely still has some energy. During this time he is also disconnected from his lines, so he has some freedom of movement and when he gets back to his room, they allow him to play for a while without hooking him up.
After his first round of radiation in the morning, I surprised Reece with a big Bat Cave toy! For some reason, Batman is the man of the hour around here. The Bat Cave kept him playing most of the day on the floor, which is awesome. There may be days when he doesn’t want to get out of bed at all, so the more we can keep him interested in things that he can play with off of his bed, the better (in my humble opinion). Tomorrow I am bringing him the Joker and his funhouse, so he will get to play with the “bad guys” as well.
After his second round of radiation, late in the afternoon, Reece came back to his room and was a little punchy. He was calling the doctor and tech in radiation “mean” and when he got back to the room he was hiding for the nurses so they had a difficult time taking his vitals. I don’t blame him for feeling that way at all. We still have to parent him through it and provide consequences if he doesn’t cooperate, but we gave him some leeway on it. The pouting and negative comments are his way of exerting some sort of control.
After dinner, Reece began spiking a small temperature and falling asleep. I think everything started catching up with him. They will take cultures when he has a fever to see if it is due to infection, but the doctor explained that in the BMT process it is very common to have fevers and right now it is likely due to the chemo in his body and the associated inflammation. They put him on antibiotics overnight, but when he woke up to go to the bathroom, he refused to take Tylenol for me. He drank some water and we read some books and he fell back asleep. By 4 am his temp was back to normal, so all seemed well.
Today’s focus was rescue vehicles, which is one of his favorite topics. We read lots of books and played a DVD on how fire fighters do their jobs. Terry and Reece spent most of the day’s free time putting together his new Lego fire station and fire trucks. As far as radiation was concerned, he sat well again today. He did have a sunburn-like appearance to his face mid-day, but we think it is a side effect from the antibiotic he is on for his fever. They can regulate the medicine accordingly, so hopefully it is nothing more than that.
Reece has been a “hit” with the docs and nurses. The two things people have consistently said are 1) he is very cute and they heard that was the case before they met him in person and 2) he has crazy, thick hair. Both are true! We’re halfway done with radiation and Terry goes back to work tomorrow. Hopefully, it will be a quiet night and a smooth transition.