Maintenance - Week 1

Well, we've completed most of week 1 on Maintenance. So far, it's mostly okay. It's different, not having the nurse come on a Monday morning. I haven't freaked out over lack of counts yet. Hopefully, I'll be able to continue to maintain my cool. No appointment tomorrow, either. It's nice to be making other kinds of plans. I'm going to take Matthew to my friend's house to play on the Wii with her daughter while we visit. I still haven't ventured to take him many places, but this friend's baby is also immune compromised, so I know they're also really careful about germs and exposure. It'll be wonderful to spend the day with friends, for both Matthew and for me!

Also this week, my sister-in-law will be coming with my niece, who Matthew LOVES to play with! They're bringing cupcakes.

It seems like we're taking the first steps into a much happier time for both of us. Hopefully, the whole family will feel the effects of that.

Week 1 was a little rough, because of the steroids. I really don't think most kids deal with them the same way Matthew does. They're really hard on him. He is always an emotional mess when he's on steroids. They all are, but it gets pretty insane with him. During his steroid treatments, it is my full time job to care for his needs, and he won't do any activity alone. If he wants to watch TV, I have to watch with him. Being in the room with his isn't good enough. There is no independent activity. I love spending time with him, but during these times, nothing else gets done at all. I'm glad they're only 5 day pulses, but even so, I will be counting down the months now, based on how many more steroid pulses he has. 1 down, 28 more to go.

He also gets really hungry on steroids. He kept me running every minute during the day all week. There were dishes all over the house from his food needs. That's a good thing, because he needs the extra padding. He was looking pretty thin lately, and the nurse and doctor had both asked about it. I was worried we were going to have to take some kind of action, like appetite stimulant drugs. Eventually, if they won't eat, it leads to a feeding tube, which I really want to avoid. I don't think that will happen with Matthew, though, unless he gets bad mouth sores.

It's been roughly 24 hours since his last dose of steroids, and already, he's content just to be in the same room with me, and he didn't quite finish his bowl of cereal this morning. It's wild how fast the main effects of that drug wear off.

It'll be nice to see how this week goes, without the steroids. He'll be introduced to a new form of a chemo he's had lots of times. Methotrexate - which he's had in his IV plenty of times, and in his spinal fluid lots and lots of times - but this time it'll be in pills. It seems like some of the kids are getting really sick from it, but I think they have higher doses of it for their body weight because of different study arms. I hope and pray that it's not too hard on Matthew, because this will be the new normal, and for a long, long time.

Here's to a good new normal!