Tuesday, November 24, 2009

Week Two

I'm posting tonight this morning, glad with the knowledge that others in this house do not know I write a blog and read it because I'm about to get all sad for our situation and it's one that many others would be doing backflips if this was all there was.  But for me and my daughter it's hard to see some cold hard numbers about what this "medicine" is doing to Rachael.

She had bloodwork and labs done today and the numbers aren't fantastic.  It's all a bunch of medical blah blah blah but the two numbers they are keeping an eye on are her neutrophil counts and liver function.  The normal range for the neutrophil is between 1700 and 7300.  The last two labs she had done were at 2440 and 2960.  Today it was 560.  Which means she is pretty immune-compromised.  I had thought if we were home I could have sent her to school and gone to work because she is feeling so great but today we were told to not take her into crowds and call immediately if she runs a fever.  So obviously the cesspool of kid-germs school would not be an option.  Grocery stores aren't an option.  And she got a mask, which she hates.

Next week they will test it again and if it's below 500, they will stop interferon and test again that week and wait until it goes up before they start again.  So being here longer looks like a very real possibility.  Which wah, wah, I might have to be here five or six weeks instead of four but it is still very depressing.  I would say that I don't know how the people who have to be here for months on end with no end in sight do it but the truth is, they just do because they don't have a choice.  And it just sucks all the way around.  I find most people sleep all day and one guy spends every waking moment completely inebriated.  It's a house filled with cancer and depression.  Nice place, clean, well stocked, many amenities, pretty but not quite "home away from home".  Unless home is a place that drives you to drink.

Other than her inability to fight off infection, Rachael looks and acts extremely healthy still.  She had pretty much no side affects to today's infusion and she is still eating and awake all day.  Except one thing.  She is extremely irritable.  Extremely.  She has her moments of joy and spontaneous "I love you mommy" outbursts but they are tucked between bouts of frustration and rage.  It's scary because I know we are just at the beginning and I have heard horror stories about how this drug can seriously mess up a person's psyche.  These stories run the gamut from depression to rage that has led to abuse in a man who never showed signs of being abusive to suicide.  Interferon messes with serotonin.  Which is the "feel good" hormone.  So a big part of me is hoping that what I am seeing is normal five-year old angst but another part of me is bracing myself for the storm.

Right now she is sleeping and so beautiful and peaceful.  And in these moments I think, "Tomorrow I will do better by her.  I will play more with her.  I will cook with her.  I will read more to her."  But the reality is when I play with her I invariably and quite unintentionally irritate her and she stomps off saying she doesn't want to play anymore.  And when I cook with her she complains the whole time about everything and there is no joy there and when I read to her she tantrums when I finish because she wants more.  And it won't matter how many more there are.  I want desperately to make this better, easier.  But the truth is she is angry that she has cancer and I can't take it away.  And so she is angry with me.  Because I have told her so many times that I want to make it better.  That I wish I could take her pain away.  That I would gladly take this from her.  But I haven't done that and so she is mad at me.

I just spent the past ten days reading a blog from a woman whose newborn died at six days.  I found her blog while looking for support for my friend who just lost her three-month old.  The situations are entirely different from mine but one thing that really resonated with my life is this idea of "abiding".  Those who were willing to abide, who expected nothing in return but made it clear to her that they were always there and really wanted to know how she was doing are the ones who she leaned on and appreciated the most.  I want to abide with Rachael.  I want to be there with her and for her and expect nothing in return but I'm finding as her mom, her primary caretaker, her nurse, her disciplinarian, this is impossible.  And it makes me so sad.

Rachael, I hope you know how loved you are.  My baby.  My sweet girl. 


  1. I really want to say something comforting, but I'm not very good at it. Just know that you are all in my prayers!

  2. And I (and many others reading this I am sure) want to abide with Rachael. We can't do it like you can, we can't be there physically, BUT I do want to be available for you whenever you may need it.

    I wish there was some sort of answer..some way to make it easier for both of you. I don't know of any such thing (if I come across something though I will let you know!) but I do know that you are doing your best. In the end, that is all it will take.


  3. Ok...I meant abide with YOU as you want to Rachael...

    (maybe I really should look over things BEFORE I post them!)