Tues, 7.29 - Progress

There was progress today - for mom but not my blogging. I had this whole thing written out then somehow deleted it. So here goes round 2. Hopefully it's as good as the first.

It seems like the good days are generally preceded by good sleep at night. So for those of you saying you don't need more sleep, think again! ;) The fever seems to peak at night (and is a little elevated tonight as I type this), but they put ice packs underneath her arms to enable her to get some rest between all the usual activity.

Ganguly came in early this morning and was pleased with the progress she's made then repeated those sentiments this afternoon. The main progress is clearing of the lungs. I want to be careful to say that it's not necessarily the pneumonia as much as additional clearing. That's still great b/c if we can clear the lungs it will improve the blood oxygen level some more. And that will get to the follow-up bone marrow biopsy we want to have.

If we can get that done and the confirm the Leukemia's gone, it will give us additional treatment options such as GCSF. GCSF promotes the production of WBCs. That's why the Leukemia needs to be eliminated - no reason to speculate that it's gone and regrow some bad guys. The WBCs were at 0.4 today. Let's get these guys growing again! I told her we need them to go forth and multiply. She loved some of the cheers today on the blog I read to her.

She has improved to the point where they are looking to bring in physical therapists to start stretching and exercising her legs in bed, and potentially even standing the bed up and working on getting her out of bed soon. She is very excited about the prospects of that, and I assured her that the Cathi Armstrong bike work she did previously has most definitely better prepared her for these lung issues.

The improvement was enough that she asked for her laptop a couple of times today, and some of you may have even gotten emails from that time. But I snapped a couple of pictures that also show her newest hat - a tie-dyed one! She's got quite the hat selection already, and loves the different ones.

She wore the CPap mask the majority of the day, which is big because it is a lower 'horsepower' machine that her night nurse the past four nights (Kristi - we like her a lot) calls it a 'blower.' It was on for probably about 7 or 8 hours today at 60%. That's also positive since she needed 80% at one point yesterday with the higher-powered BiPap machine.

We also bought a whiteboard today for her to communicate with people who are not healthy enough to enter the room. They can now stand outside the glass door to write messages back and forth. Until it's in use though, I wrote 'Grow WBCs' in green on top and 'Beat Pneumonia' in black below it with a big red 'X' through it...Ghostbusters style. She pointed at it and said, 'that's the deal'.

Walt came in this afternoon when she had the CPap on and said, 'I thought you liked the BiPap better.' She joked she 'still had choices.' So while the BiPap may do a lot for her and ease her work a bit, she can talk better through the CPap and it does show stronger lungs. I had to laugh though when I told her if we can get the blood oxygen levels up then we'll get the biopsy, she was trying to have some ice. But Mom connected what I was saying and said, 'well let's putt the CPap back on and get going!' Definitely in control and clearly motivated to beat this.

The last story I wanted to tell today happened when Janice came in this afternoon. She was helping Mom and made a comment about when it's her turn to go through this (she also has myelodysplasia). Mom responded, 'We're going to get you a cure for this and change the way they treat this shit.' I had a huge smile, and it occurred to me just how powerful a messenger someone like Cathi Maynard will be for Leukemia treatment!