This experience is something I don't think anyone can be prepared for. I have taken my mother to the cancer center for chemo for years but when it is children sitting there, it is so emotional. Yes, I held it together but it was hard. Here is my baby laying there with an IV in his arm with Benedryl, a steroid, and Remicade being put into his body. I know all he worried about was the IV. The nurse called it when we first got there. She was amazing, he didn't even feel it. He took a Tylenol (pill form) then the Benedryl was given through his IV. Next came the part we were not prepared for. The steroid! The nurse mentioned that it would cause a metallic taste and mints or lollipops would help. You know the point when your child begins to squirm and move around? We hit this point. I really thought he was going to start throwing up before he even got the Remicade started. He tried the lollipop, no help. The mints helped but he ate about 5 of them. Everything he ate tasted funny and yucky. This latest a long while. The Remicade took 2 hours but was nothing compared to the steroid. I wish I could take his pain and everything he is going through.
The noise in the infusion room reminded me of my last day with my dad. He was in the hospital, quiet, except for the machines beeping and making all their racket. All the machines beeped and made loud noises. The blood pressure machines were compressing and deflating. It was not loud but it was LOUD.
Trevor does not like to sit still so I knew it would be hard for him to sit for this long watching tv or playing a video game. He did it though. Once that medicine put the bad taste in his mouth, he didn't want to move.
He finally fell asleep. The blood pressure cuff would wake him up but he would go right back to sleep.
I wonder which medicine will win? The steroid which makes him wide awake or the Benedryl which makes him tired.When we got home he was still awake but says he is dizzy. I don't know if he is in pain from his JA but hopefully tomorrow we will know more.

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