Sleepless Nights

I think the end of each phase of treatment becomes really hard on Matthew - and therefore all of us. It seems like with each phase, the effects of the chemo build more and more upon each other and before they are allowed to wear off, there's more chemo. In addition to that, his current phase involves escalating doses - higher each time we go in. So, I think it's getting to him.

He's had 4 appointments in this phase, and will have one more next Tuesday. Then he'll get a break before we move on to Maintenance.

He's getting to the point where I can tell all that build up is getting hard on him. He tries so hard to play all day, but by afternoon, he's always so worn out, and he gets super grouchy and whiny. Sunday, Justin made him lay down and watch a movie. It was the best move he could have made. Matthew isn't used to needing rest like that, but the truth is that he needs it. He may seem to be handling this like a rock star, but he still has cancer, and it's harder on his little body than he wants to admit.

He's losing weight again, which always concerns me. I'm lucky if I can get him to eat 1,000 calories in a day - it's usually more like 5-800. He's looking pretty thin, but not emaciated yet. I'm hoping his appetite and weight will bounce back during his upcoming break.

He has leg pain, and pain at the top of his feet. I've had to give him pain medicine more regularly than I like. But the most important thing is to help him stay comfortable.

He's been sleeping in our bed at night. He goes to sleep in his bed, and then joins us later in the night. He tosses and turns a lot. Sometimes almost violently. The other night, he was whimpering in his sleep, and I couldn't get him to answer me when I asked if he was in pain. I just gave him the pain medicine, hoping it would help him. When he finally settled down, I couldn't sleep. There are always so many scary thoughts going through my head. I just laid there and rubbed his head for a long time. Eventually, I drifted off to sleep again, but it was much, much later. The last few nights have been like this, but that one was the worst. Matthew, Justin and I are all really tired this week. I'm anxious for this phase to be over with, yet I'm still nervous about Maintenance.

One more week to go. We're now counting it down in days.