Definitely been awhile since I last updated. I feel confident enough now, that if I write something positive, she won’t immediately relapse into some awful illness or hospitalization tomorrow. Not going to lie...that possibility is ALWAYS there, but it’s something we have learned to live with.
Alyssa had a routine follow-up appointment yesterday in Cincinnati. They have reduced her steroid which made her very happy. Her chubby face is the one thing that really bothers her and she CANNOT wait till the day comes and she actually has a defined chin and normal size cheeks. Dr. Nelson thinks in maybe 2-3 months the swelling should be gone. She will most likely be on the steroid for another 6 months, but at a significantly lower dose. We were literally minutes from walking out to our car to leave when her nurse practitioner called with some news...the labs they had drawn just an hour earlier came back and her potassium level was “alarmingly” low. Not knowing what that means exactly, we went back to the clinic where she was told she would need a bolus (an IV bag) of potassium. She was ordered up to the Day Hospital, waited almost 2 hours for pharmacy to get the IV bag up there, the drip takes an hour, then there’s a flush, then a 30 minute wait to get a new potassium count....UGH...NOTHING IS EVER DONE QUICKLY. So while we thought we’d be home by 1pm, turned into home at 6:30. Oh well, at least it was nothing too serious and could easily be remedied. So she will now add potassium to her daily pill popping, at least for now. All of her other lab work looked good, and her virus counts all came back negative. He’s going to stretch her appointments out to once a month. She will return in 2 weeks to have her port removed, the last piece of hardware in her. In the future, when she needs an IV infusion (and she will definitely need IVIG intermittently for the next several months), they will just do it through an IV pick in her arm. The IVIG is what boosts her immune system as her body is recovering from the BMT.
She has really felt good these past 4 weeks. She has somewhat moved back to Bowling Green, but we still see her quite a bit at either the lake or when she comes in for doctors appointments. She has started exercising daily by riding her bike or doing a very modified workout. She is being very good about her diet and trying her best to eat healthy. I do worry about the boredom...she’s not cleared to work for a while. Jared is busy with basketball and all her BG friends are working or in school. So she’s got a lot of time on her hands. She’s pretty resourceful, so I’m sure she’ll figure out a routine that keeps her busy.
All in all, I’d say we are very blessed to be where she is today. As time goes by, the worry becomes less, but of course, always lurking around a dark corner. We have learned to take it a day at a time and to be happy and grateful for where she is now. She’s cancer-free and in relatively good health, considering what her body has been through. She’s getting physically stronger everyday and mentally, I don’t know that there’s a tougher person out there.
Again, thank you everyone who has reached out to not only Alyssa, but our family. We’ve been through a lot in the past year and I am quite positive that we could not have done it without our circle of support.
(On a different note, we discovered that Hope (her rescue Pitt) has torn her ACL and will need surgery. The earliest we can get her in is August 9th and then there’s an 8 week recovery period that will require constant supervision (to keep her immobilized), physical therapy, etc. Yes, I’m thinking the same thing...at some point we are going to get a break 😬)