Finally Got Started

Today was a good day. They did yet another xray to look at Max's central line and the surgeon felt that it was good enough to work with. They have been drawing off of it for two days now, but wanted to wait to start the chemo until they were sure they were not going to open him up again. Once the chemo starts working, the risks of infection will be that much higher. Josh spent the night with him again and Uncle Greg and I spent much of the day there. Max was in good humor, and enjoyed cruising around his room in the "go cart" as he called the stroller like thing that they pushed him to radiology in. I think he was pretty happy to get out of his room, too. They started the chemo this afternoon, first giving him his first dose of cyclosporene orally in a some chocolate milk, then later on giving him the steroids and ATG via IV. The ATG was a 5 hour drip and I left before it was over, but his body seemed to be tolerating it well when I left. He also has started taking an anti-fungal, benadryl, and tylenol. Max does not much like taking the oral drugs and it has taken a lot of negotiating, begging, pleading, and even some bribery to get them in him (and they have been giving the benadryl via IV for now) but today was a bit better than yesterday. We were told that the steriods have moodiness as a side effect. This means we should expect sudden bouts of crying for no good reason, mood swings, and burst of anger. So, basically he is going to act three, except more so.

Max's portocath is working well. It has taken him a bit of getting used to, though. But, it is nice that they do not have to stick him with a needle for everything now. We just learned the hard way that he can't run around when on the IV. He was playing and bent the needle, so it had to be removed and a new one put in. This involved a lot of panic on Greg and my side and a lot of screaming on Max's side because he just didn't want to sit still for it and there wasn't time to explain to him what needed to happen (they had to get it back in before it clotted), but hopefully he will adjust well. He likes to sit up and hold my hand when they put needles in him, and he needs to lie down for this. We will work through this, though.

He has an awesome view of Boston Harbor, and can see the airplanes taking off and landing at Logan. Hopefully he won't have to stay too long, but it is nice that his room offers him so much to see. The staff at MGH has been great. Today's nurse, Elise, who will be back tomorrow, was especially wonderful, taking time to really explain everything that was going on.

I guess that is it for now.