[Chad S]

bailie,
That's interesting you say initial biopsy showed 19% blasts and a week later it was 9-11%. My wifes was 20% then a week later was closer to 10%. That's why I list it as RAEB-1 in my signature, but really think it was RAEB-2.

My wife (Danielle) is doing very well. In fact, doing well enough that I don't like saying that because I don't want to jinx it. She had a 10/10 MUD on 5/22/2013. She engrafted on around day 12 and was released from inpatient care after 22 days. During that first 3 weeks she had elevated liver numbers and they never clarified if that was due to the chemo or GVHD, but her numbers are normal now. Twice her oxygen level got low enough that they did chest x-rays but found nothing unusual and she did fine on oxygen (with mask or through nose). She had spots that showed up on her skin and they did a biopsy and were basically inconclusive and those are now gone. She even had an enlarged lymph node in her neck that they tested for Epstein Barr Virus (EBC) and first test came back positive and second came back negative and the swelling went down on its own. I tell you all of this because each time something like this happened I was very worried, but the nurses and doctors did not seem to be worried and each time it turned out to be nothing. I say nothing, it was something but whatever it was they did not know and it was not long term. So the first 30 days post transplant your body will begin adjusting to the new marrow and recovering from the chemo, and all of the things that happen are not necessarily something to worry about.

Currently, Danielle is doing great. She walks the kids to school every day, she does light exercise daily, we've gone to dinner with friends. I have to say, the "new normal" is much better than expected. She did not have acute GVHD and is not showing signs of chronic GVHD although that could still come. As crazy as this sounds, the only thing I worry about is that the lack of any GVHD concerns me about Graph vs. MDS (there are initial for this but I have forgotten them). This is where the new immune system comes in and kills any remaining leukemia cells that could have been left behind after the chemo.

During your stay in the hospital, take your favorite pillow and blanket from home. Find out where the warm blankets are so your care giver can get one for you without requiring a nurse. Buy one of those small DVD players with a screen (they look like a laptop) and lots of DVDs. If you have an iPad, join Netflix and learn how to use it before you get to the hospital. Danielle took books but did not feel like reading, but she did watch shows and movies. Find out where the laundromat is and take several rolls of quarters, detergent and a laundry basket to the hospital. Get the detergent for sensitive skin. We had a bowl of candy for the nurses that I kept full and they all seemed to really appreciate it (I thought it might make them stop by more often!). Walk, walk and then walk some more around the hospital floor. Start your mouthwash before the sores show up and do it several times per day - get ahead of the sores (they suck!). And do the breathing treatments. All of this helps tremendously and it's easier to stay ahead than try and catch up.

After you are out of the hospital you will still go back daily for a while. Your care giver will learn how to clean out your port, and that is really no big deal. Life has been good. There are ups and downs, but I can't complain considering what I was expecting. We even have two dogs and a cat and that hasn't been an issue (she was not around them for the first 100 days).

Tell your care giver to get out each day and do something. We were not in our hometown so I stayed in the hospital with my wife. She slept most of the time so I had to battle some restlessness. I began taking a long walk each morning and that helped a lot.

Not sure why my replies are so long, I guess I have a lot built up in me wanting to come out! I hope this helps! Please don't hesitate to ask any specific questions.

Expect to be OK and you will do great. I wish you the best!
Chad