GVHD and progress

Where to start? We are still being told GVHD. Our doctor says that Mikayla's case is similar to cases before special transplant drugs like Tacrolimus were around. The Tacro is supposed to prevent this type of GVHD from happening. Who knows maybe we got a bad bottle of the stuff cause it ain't doing it's job. She is considered a severe case. I won't go into detail about how she looks anymore because it's kind of a pointless thing to do. It has settled down a bit. The previous "bad" spots are changing and the old "good" spots are starting to look like the previous bad spots. Kind of confusing. It is like everything wants or needs to break out to a peak before it tapers off. We don't know if this will happen again. One thing that is hopeful is that where the new skin is that skin looks good in color. To my eyes it looks very painful, but Mikayla is doing well with the pain. I think the Dr. has the right mixture of pain drugs to keep her comfortable. Her steroids make her have extreme moods. She is very vocal when she wants things. Most of it is from being scared and some is from the pain. We can not have any visitors for some time to come. Mikaylas Christmas will be spent here in the hospital. We will do the best we can to make sure that she gets everything from santa that she requested. We did get two really solid pieces of good news amongst what is happening now. Mikayla still only has GVHD in the skin and not the GI tract or liver. The other tidbit that really gives us hope is that Mikayla is cancer free. Our road so far has been long with a lot of good times. For the most part she has sailed right through the cancer. The GVHD is by far giving us more fear than the cancer ever had. I think its just a visual thing. You couldn't see the cancer and somehow it wasn't as real as what is going on now. She is asleep finally. Most of her day today was spent yelling at doctors and nurses. I hope nobody takes it to heart because underneath that grumpy facad is still the same sweet Mikayla that most have come to enjoy.