Sunday, April 22, 2012

Day 24...

It has been a crazy couple of days, and somehow, Miss Bossy B has gotten her days and nights switched around, where she sleeps all day and stays up all night. Her pain is not as bad, thank God, but she has been having these crazy reactions to the Cyclosporine, one of the medications she takes to prevent Graft-vs.-Host Disease, the dreaded enemy. It is causing redness in her skin and burning in her cheeks, and while "GVHD" has been bandied about by the doctors and nurses, I just can't bring myself to believe it. It doesn't feel in my gut that that's what it is. But I am not an oncologist, I only know my daughter, but I don't know what happens in the general population of BMT patients, and I am not going to negate what these nurses see on a daily basis. They are in the front lines, every day. I am in denial because I don't want it to be GVHD, because GVHD scares the bejeezus out of me. Sarah engrafted in record time. That is a blessing, but that could also be a bad sign, that something is not right, that there is lots of room for something to go wrong. The rash on her back, on her arms, on the back of her neck, however, doesn't lie.

They tell me that they almost expect to see GVHD rear it's ugly head in one form or another, that in mild forms, it is almost a good thing, because it means that the new immune system is working, and as one of our favorite nurses put it, there is a little "stomp yard battle" going on in her body over whose territory it is. I can deal with that, I kind of have no choice, but I am scared out of my mind. All I can do is pray that it doesn't get worse, that the voice inside my head that tells me that this is not GVHD but just my daughter's sensitive skin, one of the few traits she inherited from me, is correct.

Then there are the thoughts that come unbidden, the ones that I am entertaining more and more though I don't want to, the dreaded what if that comes and lingers in my mind. Evil thoughts born out of fear, what if this is all for nothing? What if I put her through all this misery, all of this torture, and I lose her anyway? Then I remind myself of the alternative, which seems unthinkable, but for religious reasons, people do it every day. They simply pack up their babies and take them home to die. If Sarah loses this battle, at least I will know that I did absolutely everything that I could to help her fight. I have to know that, or I won't make it even another day.

Then I feel totally selfish as I remind myself of all the mothers who are packing up their child's things from a hospital room right now, being forced to leave the hospital for the last time without their child. Don't they feel the exact same way, some of them? Like it was all for nothing? Or can they take comfort in the fact that they did the best that they could, that they were there as much as they could be? Is it enough to hold you together when your world is ending?

The thoughts come, and there is nothing I can do about them but let them serve their purpose, and send them on their way, and pray that I will never have to know what it is to live in a world without Sarah in it. All I can do is pray that my instincts are correct, and that it is simply the medication and not anything more serious. As for now, my silly girl is laying with her daddy and a stack of books, watching a movie before he has to go in to work. She will more than likely be up all night, and with the aid of some really strong coffee, so will I be.

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