Another week passes, and we get a week closer to going back to Austin. Amy has passed the 1/2 way point in the post-SCT first 100 days. Day #57 to be exact. If we are able to pass the remaining days as we have these last several, we'll both be pretty happy. The days, for us have been kind of boring. As it was during Amy's treatments in Austin, boring is good. I say it in jest. The picture with the post describes a bit of every day. There are worse problems to have, and we're fortunate that this is the main thing that we are dealing with right now.
It's too hot to be outside much, especially when she (we) need to avoid the sun. The suggestion is to avoid crowds, so avoiding prime time is key. Grocery stores are pretty much germ fests. This week I found myself going to get nail polish, gum since the tastebuds are off, and feminine hygiene products all so Amy could avoid a store.
But like in Austin, boring is good.
Not everyone who has a SCT is as fortunate. To a degree, given the technology of today, patients who have a SCT transplant are essentially trading one set of risks for another. They are trading the potential risks and side effects of a SCT for those that might come with a leukemia (or other blood cancer) treatment that doesn't involve a SCT. Risk vs. reward, when there are not any truly definitive answers at this point.
There are some 'exciting' possibilities with immunotherapy and LLS's 'Beat AML' initiative, but we didn't feel like we could really wait around!
Amy's dose of prednisone was cut again yesterday. That's good. She was started on it a week and a half ago for a rash that she developed. I'd post a picture, and while was was mild, Amy would not appreciate that!
Graft vs. Host Disease (GVHD) is what it was. Acute GVHD can attack patients in the first 100 days. Anything after 100 days is considered Chronic GVHD. Skin, liver, and GI tract are the common Acute GVHD sites. Joints, eyes, mouth, and skin are the common Chronic GVHD sites.
Non-sciencey explanation. It happens because when the new donor cells (umbilical cord stem cells for Amy and adult donor cells for others) start to reproduce and replace Amy's blood cells, they might see her skin as foreign. So, an immune response results...the rash. Or it could be vomiting or diarrhea. Chronic GVHD can happen anytime after the first 100 days. It might be day 101 or it might be 3 years later, you really just don't know. The other part is not every patient experiences it.
It is with that we go into another weekend. A couple of weeks ago we did catch an early show of 'Trainwreck' the movie. It was a good break from normal. And, I'm sure that we will find other things to do in the meantime. Some continuing ed for me, athlete schedules, and day to day keep me busy right now. Oh and reading. I'm re-reading 'To Kill a Mockingbird' because it didn't stick the first time. English was not a subject I particularly enjoyed.