Monday, April 16, 2012

Day 18...

Okay, so today Miss Boots woke up with an attitude. Yesterday, she was up by 5 am, happily playing with all of her Lalaloopsies, big and small, and went steadily on until about 5 pm, when we both crashed out. Last night, she cried all the way through her bath, woke up intermittently because the mucositis is causing apnea and her oxygen levels are dropping way low, so they have to give her oxygen, which she hates. This morning, she woke up at noon when her daddy burst through the door bearing gifts, a manila envelope full of little trinkets and odds and ends from the Grand Prix that some of the ladies from his work, who adore her, put together, complete with two inflatable snake swords, so we can duke it out in case she feels the need to bite me again.

She was ecstatic to see her daddy, and gave the contents of that manila envelope minimal enthusiasm. She lay there and watched Ponyo, didn't say a word to her father about anything she's been up to this week, possibly because her activities for the week were pretty much limited to sleeping, fighting bath and meds, and vomiting. In other words, this was not normal behavior for her,and it was pretty evident she was not feeling well.

We fought to get meds in her, but once in, they stayed down, which is a good sign, and her pain meds have been weaned down slightly, with no complications so far. Thanks to an episode of Nurse Jackie, I now realize that they Fentanyl they are pumping into my baby round the clock is stronger than morphine, and she has to be taken off slowly so that she doesn't go through withdrawals. I want to throw up just thinking about it.

Right now, she is happily playing with a volunteer, and it seems that things are moving along in the right direction. Her counts are at 294 today, and she needs to be at 500 for three days in a row in order to go home, plus be weaned off the Fentanyl, weaned off the TPN and eating regularly on her own, and everything that is currently being administered through her tubes has to be taken by mouth without a fight. So, in other words, we are halfway there counts-wise, but we still have a long way to go, and once we go home, the fight isn't over. The doctor said that the graft-vs.-host disease could set in at anytime, and my life is about to get a whole lot more complicated before it gets any easier. But with the rise of children dying from cancer I seem to see lately, what is the alternative?

The fact of the matter is that this child is scaring me more than anything else. Lately, usually when I'm fighting her to take her medicine, she will tell me that she's scared. When I ask what she's scared of, she says that she's afraid of the dark, but she will say this at odd times, like when the light is on, or in broad daylight, when it's not dark at all. I will say just this, and she simply repeats herself, that she's scared. Knowing my daughter all too well, I figured she was using it as an excuse to get out of taking her meds, until yesterday, when she asked me randomly as we were playing if Heaven was dark. I told her that it was not, that Heaven is light all the time, even at night, and I asked her why. She said, "Because I'm afraid of the dark. I don't want to go to Heaven if it's dark. I don't want to die. I want to stay here with you." Of course, I started to cry, and this seemed to upset her more, as she tried to grind the tears out of my eyes with her tiny fists the same way she does hers (Imagine this. This works out to be essentially her lightly punching me in the eye).

Where she got the idea that she is going to die is a mystery to me. I have never said this to her, no matter how desperate I have gotten to get her to take her medicine, no matter how frustrated I have been, nor has anyone else said this to her or even around her. This is something I would never allow. I don't want that idea in her head. I believe in the Law of Attraction, and I have seen that in a child, and in a child as strong-willed as Sarah especially, it is especially strong. I have seen it in action where Sarah is concerned. She has a way of bringing things she wants toward her with uncanny accuracy. She doesn't want to ride in my car, but in Daddy's? Boom, my car won't start. Mommy said she has to wait for that new toy? Someone else will send one in the mail, or Child Life will bring it as a prize. So, I'm sure I don't need to explain why I wouldn't want any mention of death around this child when the force is so strong with this one.

And where did this little baby genius of mine get the idea, much less connect the dots, that death is darkness? As I have mentioned before, I am not in the habit of having philosophical arguments with my four-year-old, although, apparently, I totally could. The doctor says he is more than pleased with the way things are going, that she is progressing well, all things considered, and that we should be home in no time if she keeps doing well. It is my daughter that is scaring me senseless, when she says things like this.

Is this simply a fear, or is there something she knows that I don't? Is she simply scared of death when it is so imminent, as any other normal human would be, or does she know that her time is running short? Something within me tells me that since I carried her within me for nine months, since I spend 24 hours a day with her and since we are unbelievably in tune, that I would know if her time is running short, that I would be able to feel it if she were slipping away from me. But then the fear sets in in me, and I just don't know if that's true. How many other mother's have lost their children and didn't see it coming?

As I have said to the point of redundancy, and what I have been told more times than I count, is that there is nothing to be done but to have faith, to wait and see. While I do believe that children know more than they are given credit for, there is much to be said for experience. No matter how smart she is, she is only four after all, and she is certainly no match for the world-class oncologists monitoring her care. I put my faith in them, and in the wisdom God has given them.

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