Alyssa had her routine follow up appointment yesterday in Cincinnati. And it went really well🤗. Dr. Nelson wanted a consult with an endocrinologist regarding her steroid wean. Dr. Howell was awesome and talked about several different things regarding how hormones in the body react differently after chemo/BMT. We now have a full calendar showing each time she’ll wean down (every 3 weeks). At this rate she should be on the lowest maintenance dose sometime in March and (fingers crossed) will finish the wean in April. He did say that if there is any issue with the taper, then he’ll just slow it down and wait for her body to adjust. Any type of illness may require a boost, but that would only be for a few days and then she would go right back to the scheduled dose. All in all it sounds like a solid plan and it was nice to see it all laid out. Her swelling should slowly subside but he was fairly sure she would have to be off steroids completely for a month or so for all the swelling to disappear.
At our appointment with Dr. Nelson we were talking and he caught us off guard when asked Alyssa what her long term plans were. She was like “for the weekend?” He laughed and was like no, like your “life” long term plans. I can’t put in to words how happy it made me to actually be talking about the future. We’ve spent the last 14 months taking everything one day at a time. It’s going to take some time, thinking about long term plans. Alyssa has a lot to figure out but she’s got some time. Her “big girl” after college job (whatever that turns out to be) will still have to wait until after February when she’ll be cleared to work. She will also need to decide if she’s going to stay in Bowling Green or come back to Louisville. These are all good problems to have.
Her labs were all good and he said he’d like to see her back anytime before the end of the year. Again, this took us by surprise and I mean in a good way. So she’s looking at next appointment in mid-December and she’ll finally get her port removed at that time also.
Alyssa has planned a little impromptu trip to see a good friend who lives in Boca Ratan. She’ll fly out next Monday and come back the following Friday. The change in scenery should be really good for her and I’m happy she’s starting to do “normal” things again.
All in all, this is exactly what we have been praying for since her BMT. it’s still very possible that there will be some bumps in the road, but the closer we get to the 1 year mark on her BMT, the less likely there will be complications from the transplant.
Site created on September 7, 2018
Send me emails on supporting a friend in tough times through stories, articles, videos and more.