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!
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