Today came with Scott in a fog early this morning. Seems he took a bit to wake up. I wonder if he lies there each time he wakes, wondering if the nightmare has ended. Lots of sighs when we ask him things. Lots of frustrations when we get him up.
After he was awake, we did get him to make some laps around the hall each time he got up to use the bathroom. He walks on his feet properly now, but tends to gather a bit of steam as he goes. We have to get him slow down regularly to keep him from chancing a fall, or chancing us not being able to keep up with his IV pole. He did stop and say hi to Morlene, the cleaning lady that works on the floor, when she prompted him.
It is a hard thing to watch your child struggle so hard to do things that were not even a thought 2 weeks ago. He actually told Stephanie today "I'm trying." After we finished walking the first time, I told him I was quite proud. Then ask him (fully expecting no response) to give me a hi-five - and out came his hand, slowly and gingerly to do just that. Of course I started to get all weepy (Stephanie didn't help by telling him 'you're gonna make him cry Scott). As Stephanie said, that was probably the best hi-five I've ever had.
He does seem to try and talk more when he's up walking. I've no idea if there is anything physically that does that, or if he just feels better when he's up. He does look around in wonder a lot, but he also knows which room is his. We just try to understand what he does and does not recognize. It is very hard. He struggles greatly, and you just have to wonder if you've pushed too much and need to stop.
He had some cookies show up from Sara, who works with me. While walking, he started talking and just said "what kind of cookies?" You never know what may spark a reaction. Thanks for the sweets Sara, and the video in the mailbox - which Derry performed a "quality test" on tonight. He said he had to make sure it worked.
Another huge thank you to Susan. She arrived with the usual coffee for Steph, a gaggle of wrestling videos and another huge sack of food - which I promptly attempted to eat the entire thing. It seems I "stress-eat" and Stephanie "stress-starves". I can't say enough about Susan. I think I've mentioned here before that we met her sadly at the hospital when Scott first got sick. Her daughter was admitted and diagnosed with lymphoma the same day as Scott was diagnosed with leukemia. Mom's of kids with cancer tend to bond in a way that can't be explained.
And continued thanks to Scott's Chemo Angels. You guys are great.
As to where we stand - Scott's chemo is on hold for at least another couple days or more. We also spoke with the doctors today, and he'll certainly be in the hospital until at least Tuesday. Going to give the Lovimax a few days to work and do another scan for comparison. So a few days to just focus on him improving, without any drugs to get in his way. Oddly, we were scheduled to be over at Disney this weekend. Not exactly the room away from home we were counting on.