I guess no news is good news in a way. Things here have been stable since Alex's birthday and her 100 day celebration. I would say that things are worse rather than better. But only because the doctors have been tapering her off all her medications and that is proving to be a difficult stage in all of this. She is having some minor GvHd creeping up on us. At this stage, if they determine it's GvHd, it is considered chronic. Right now it has not been diagnosed.
Over the last couple weeks we've had a few clinic visits and also a trip to the hospital to get an MRI. Alex has had some back pain so they wanted to make sure it wasn't anything serious. At this point I still don't have the results of that. We went into the clinic today and I cannot believe I forgot to ask about the MRI they did last week. Uggg! Today was all about what is going on with her stomach. She lost 4.5 pounds this last week. I think I put on that many trying to fatten her up. (that's a frustrating side effect from all of this too) :) Well, they are to a point where they want to diagnose the problem. SO... Alex is going to go in for a scope next week. It is an inpatient procedure so she'll spend one night (knock on wood)in the hospital. They will do a biopsy of her gut and somehow can diagnose if it's GvHd. So interesting!
From the beginning they were hoping they would see small signs of GvHd. So this isn't necessarily a bad thing. There is something called Graft vs Leukemia effect that is really helpful in dealing with relapsed leukemia. It's something that has to be diagnosed and then treated with Alex's best friend... the Steroid... but it is something that is treatable. It won't be any fun but we haven't been part of anything fun for so many years we wouldn't know how to play that game anyway. That is where we sit right now.
We've been home bound quite a bit. Not because Alex counts haven't been good but because she just hasn't been feeling that well. It's kind of like this weather we are having... no such thing as two good days in a row. On a good note, Alex's counts have been fantastic! In fact today we had some of the best labs I have seen so far. Her liver functions were the best I have ever seen since all of this. They are in the normal range with NO drugs helping that! YAY!
It's been 5 months since Christmas... since the transplant... and I have to say that there are SOOO many things that were NOT ON THE BROCHURE! I am so thankful that we haven't had any huge setbacks... major rejection problems... horrible side effects... but the day to day process of it all is excruciatingly boring and long. Alex was having a tough day with everything yesterday. Too many days of not feeling good... too many days and weeks of not feeling normal. I told her that we can't look at any of this as a day to day progress... we have to look back over the last 5 months and see how much progress has been made. It's not something you can witness with the naked eye. It was the same when she had her stroke back in 2007. To live day to day can make you crazy... you don't see the progress... they are just long days spent doing whatever you can to pass time. But to look back over a 6 month period Alex learned how to walk again... write again... drive again. The days were spent with occupational therapy and physical therapy but nothing was noticeable day to day. The same can be said with a bone marrow transplant. There is one thing I read when preparing for this journey that sticks in my mind now.... Alex and all of us are going to have to learn to live with a whole new normal. The normal we knew is gone. The new normal is something we will have to adapt to.
I will try to be a better blogger :) When I find out more about this scope situation I will update. Hopefully they figure something out and are able to get my girl feeling better. SHE IS DUE!
Please send good 'feel good vibes'. We need all we can get.
Thanks for tuning in :o)
