At this point, I believe the last time I blogged was when we found out Tom had relapsed. Quite a lot has occurred since then. So the plan then was to stop his graft vs host medicine (cyclosporine) and hope that he gets graft vs host. Well, he didn't... and to make matters worse, the biopsy yielded more leukemia in mature form.
That day was quite seriously a mess. I was down in Elk Grove doing an environmental rating visit for a provider (this is roughly 20-30 min from the hospital and a 3 hour visit). Toward the end of my visit I glanced at my phone for the time and saw that there were multiple missed calls and a few very frustrated texts all from Tom. What happened? I'll tell you, turns out I left with both sets of car keys so Tom and his mom had no way to get to his appointment. They took a taxi for the ten mile ride which cost $40!!!! To add insult to injury, they then received the news that the leukemia had progressed, etc. and that Tom would have to go into the hospital the following day.
Long story short, I left straight away, took the rest of the day off and picked up Tom and Helen from the hospital. We took Tom in the next day which took a lot of convincing. The goal again was to more aggressively try to induce graft vs. host. They had assured him it would be a short visit with just some chemo and a dli (stem cell top up) and then he could go home... so about a week.
That was all true, he came home a week later and that same night took an ambulance in to the ER with heart palpitations. The next day he had a date with the doc and the doc said he was going straight into the hospital for monitoring until he recovered ... that lasted four more weeks. So really in total he had a five week stay. Five weeks!!!! He made it home the Monday before Thanksgiving so we were very thankful!
December 12th we received his next biopsy results. Tom had not yielded any signs of graft vs. host, but he also yielded no sign of leukemia. So remission again!!! Only they were/are worried that without further intervention it won't stay this way. So they had him come in the following week and do another dli with a bigger dose of stem cells and in outpatient. Because the first time they did the dli he had shown leukemia cells, they had to do chemo, but because he is now in remission there did not need to be more chemo. So now we sit and wait and hope for enough graft vs host to happen to do the job, but not so much that he suffers any harm.
The bright side is that this year he was home and feeling good for both Thanksgiving and Christmas. So lots to be happy about. There is however a lot of anxiety in the air about whether this will work, planning for the future and trying not to think too much about what-ifs, my grandmother is in the hospital (I just found out) after recently receiving a pace maker... my work is about to have the state on us and deciding whether or not we are worthy to maintain our contract, just so much. That said, tomorrow is New Year's Eve and we can only hope for a 2014 with wonderful news and happy events!
