Well now with a delicious cup of brewed coffee at my side I thought I'd blog about something that doesn't particularly have to do with myself or Tom.
When Tom was discharged from the hospital there was a lady in there that was a week behind him transplant wise, but actually discharged less than a week after him. She was sort of the star-patient having shattered everyone's recent "records" (it was quite a competitive group of patients). She was doing really well and as far as I know with her labs and whatnot, she still is; However, she did begin to lose feeling in her toes within a week, then it went to her ankle, then up her leg a bit, to her knee, up her thigh, to her hip... and now her arms as well as of a couple weeks ago. Poor lady can't walk, she can't even pick up her legs to keep from dragging in the wheelchair. Instead, a nurse wheels the chair while her husband holds up her legs. They apparently have no idea what's causing it and seemingly must expect that it will pass, but her poor husband seems at his wits end trying to stay very positive (which he hands down does like it's no problem at all) and trying to help his wife regain feeling. It's crazy to think that here she went from the top to being completely reliable upon others. That said, please pray for her.
While Tom was in the hospital, his next door neighbor (so to speak) was an elderly lady who'd had quite the complications. Her transplant had been the week before Tom went into the hospital (I believe... it was definitely before we were in there though) and upon transplant her lungs immediately shut down! She then spent four days battling to stay alive in the ICU and made it back into the bone marrow transplant ward. We saw her up a couple of times and her poor husband never left her side for weeks... literally. He was in that ward for weeks! He eventually decided to go home for a nap one day and then began taking walks here and there. In any case, she seemed to be making good progress and when we left they had said they expected she would be about a week behind Thomas as far as discharge. Sadly, we haven't seen her at all. A large part of me wants to know what happened... is she still in there or did she unfortunately pass away? On the other hand, the other part of me I think knows what the answer is likely to be (with a 30% mortality rate for bone marrow transplants) and doesn't want confirmation. The daughter of Tom's transplant day twin (who's 76 and doing really well) often speculate. While I totally understand HIPPA laws and the whole privacy thing... I just wish someone could tell us if she'd passed so that way we could maybe offer to bring dinner to the poor guy. I can only imagine, after getting to know him over the month we were in there, how he would be feeling if this were true. Likewise, if they're still in the hospital I think he could probably use a friendly face. So, another prayer there please.
Lastly, when Tom was in the hospital for chemo in January, he met a newly diagnosed fella who was starting the hyper cvad regimen (what Tom did up at Roseville). This guy was so amazingly positive going in and then ended up back in the hospital with a secondary infection (much like how Tom's experience last fall was) and was in for probably over a month!!!! After just having spent a month in there doing his induction chemo. He was so sick!!! He was in there through most of Tom's transplant stay even. Well he got better (thankfully) and we later saw him in the doc's office ready to go in for another round of chemo which also went well, but then again he is now in the hospital and even had to do ICU time up at Roseville (where they live) and I think is still in the hospital. He's having a difficult time and I know his daughter's high school graduation is coming up soon... so please send lots of prayers for them as well. Heart wrenching.
This whole experience is so crazy at times. Tom has certainly had his scares and secondary stays and the amount of times I thought I may lose my husband .... I just wish there was something I could do for these others. Tom and I were saying how it's such a crapshoot as far as how you end up and it really is! Though he's made it through the transplant, as I mentioned last night he's now entering the risk zone for acute graph vs. host and then after that little time frame there's another like 9 months to a year of chronic graph vs. host possibility, there's the 40% chance of relapse, there's just so much and when things go well you just wonder if that means you'll draw the short straw elsewhere. I suppose all we can do is keep hoping and praying and trusting that his youth is on his side, but man is it awful watching others go through these difficult times. I suppose I've officially made this entry about us now, but I just wanted to make sure that the stories of the others were told and prayers were said. Much appreciated. Have a wonderful weekend! We're going on a river tour today with Tom's dad... should be lovely!
Saturday, May 18, 2013
Friday, May 17, 2013
Over a month at home :)
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.
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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