As I sit here sipping on a glass of Apothic White wine I thought I should maybe write something more current. So far a lot of positives which is of course really good! The beginning of Tom coming home was of course as expected: lots of pills (LOTS of pills), lots of vomiting (lots of vomiting), extreme fatigue, etc. We were going to the doctor's on the daily, his counts were doing this and that and we were of course at the edge of our seats asking a million questions... he's been doing well.
In fact, Tom is probably the doing the best out of everyone within his group of transplant patients. He soon went from every day visits to having a day off, to having two days off a week, to only going in two days a week, and as of this week he may be going down to one day a week starting this coming week! His bone marrow biopsy came back negative for leukemia and 99.77% the donor's cells and they wanted to see at least 98% so that was great. He's beginning to have more steady energy and thus beginning to be more "Tom-like" if you will. It's wonderful to see.
For awhile he had zero energy and was constantly nauseous and vomiting and then he started having a good day here and there where he would be able to do something for a couple of hours, but would then be absolutely wiped out the next day. Then that cycle sort of became an every other day sort of thing and then slowly the energy level increased to where the energy spurts lasted longer and then slowly the wiped out days faded out... and now he's doing pretty well. The only down side is he has to limit his sun exposure with long sleeves, long pants, tennis shoes, and a big straw hat... because his anti-rejection meds cause extreme sun sensitivity.
Financially: Whew! We are so incredibly grateful for the love and support we have received. The folks in the UK have managed to pay most of our medical bills off for us and have had another giant fundraiser tonight. The fundraiser here in Corning managed to keep us afloat for a few months and essentially leave us stress free! We are SO SO SOOOO incredibly blessed to have so many wonderful people who love us so much and are so willing to give. On top of that, a slight detail caught my eye on a payment we received from an insurance premium Tom bought into that was supplementing the the state disability. In any case, going forward they will be paying us what we were getting from the state so we have had that huge weight lifted as well! God is so good at making it always work out... but we also couldn't have done it without the help of all of our Earthly angels as well.
Going forward:
Moving along, if he continues this way things will be so good. That said, because he's doing so well they've been cutting back on his anti-rejection meds and whatnot... which eventually puts you at risk for graph vs. host disease as you stop suppressing the immune system. So typically around day 100 or so when they have folks sometimes stop taking the anti-rejection meds all together, people can develop acute graph vs host... which from someone we know who had this, is about a four day hospital stay and some meds so long as you respond well. So that's a bit daunting... on one hand you're cheering that he's getting to take less pills, but on the other hand you know there's this large ominous cloud awaiting in the future that may or may not rain on the positive parade. Enough of that doom and gloom though it's just merely a possibility, nothing more.
SOOOOOO, because Tom is doing so well, I've decided to start the job hunt. I had a follow up with my hand surgeon today and I'll be released back to "full duty" in six weeks. Which gives me six weeks to knuckle down and attain a full time position somewhere. Only problem is, I was reminded today that while I can be around children and could wash my hands and change my clothes before coming home... if I catch anything off of these children or carry something home with me that I'm immune to... I could be putting Tom at extreme risk. So, I have a phone interview on Monday, a physical meeting elsewhere Tuesday, and Tom has a doctor's appointment Wednesday at which I will ask the doctor if this is an okay thing or not. If it is... please put in a good word with the man upstairs for Tuesday's meeting. Great place, great pay, benefits, vacation time, and peers with their BA's rather than the bm (bare minimum) which means it's a place that values continued education and developmentally appropriate practices (or so I can hope).
There we have it... raise your glasses to progress and almost a year of ups and downs behind us and to the last month of up, up, ups and a continuum that direction!
By the way, have I mentioned what an amazing husband I have? He's a pretty remarkable guy. If nothing else, this whole experience has made us really realize how special we are to one another... takes a lot to spend nearly 24/7 together for a whole year and still be going. Not saying I didn't endlessly love him before, but I think everything has just been brought to some different level entirely. Our whole lives have been put in a different perspective and it's truly wonderful. Right, goodnight y'all.
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