Saturday, May 21, 2011

Mastocytosis

I was waiting to post this past week because we were supposed to be getting some biopsy results from some skin taken from one of Abigail's mysterious blistery bumps. But alas, they didn't come in on time, so we wait.
It's been a weird week emotionally and I'm trying to come to grips with a few things. I have been trying to do a bit more research on mastocytosis. Late last summer we heard the word for the first time. I researched a bit. We saw a specialist (she sucked) and she said she didn't think she had it. We decided not to pursue anything more unless we saw more issues.
Fast forward just a tiny bit, and Abigail is diagnosed with GERD, something that could be caused by her low tone, mastocytosis, or just something that some people have. Never think twice about it.
Then after the removal of the tumor in April we hear that mast cells are the issue again. We aren't certain what that even means, soooooo....we make an appointment with a new specialist. And warm weather hits.
We are back where we were last summer. Abigail has lots of little bumps, some big bumps, they all itch, and unlike the usual 'allergy' things people get they all have blisters on them. She has no runny nose. No itchy eyes. No sneezing. Just itchy blisters all over her little belly, back, arms, and legs (and one on her face).
So I begin to research again. I read about masto. I talk to some other people with it. And I fight the words I keep hearing. Mastocytoma=mast cell disorder even if we don't see any other signs. And the spots all over her, look like a mast cell flare up. And the fact that they came just weeks after we had to increase her medicine because her GERD was causing problems, looks like a mast cell flare up.
So Thursday I began the descent into a fit of rage. I keep telling myself that it's perhaps a coincidence. Maybe the biopsy will come back as something other than mast cells. Maybe I'll be surprised. Then I'm interrupted by the need to give my daughter more benedryl to keep her from scratching until she bleeds.
I remember this emotion (all though much more intense it seemed) when we first learned about NF. It's the 'denial' aspect of trying to work through something new. It wells up from somewhere deep inside, and I believe that if I can just concentrate hard enough that I can will this to not be true. I can pretend away the facts and go on living.
But reality has a small grip on me during these thoughts, and I know for the sake of my daughter I must move forward and get answers.
And when wakes up from nap, I turn on some Nichole Nordeman on Pandora, and we dance until all I can do is enjoy myself. We dance until we are both laughing and I am full of joy. We dance until I realize, that even if she has another stupid label coming, that for now all is right in the world.

video

1 comment:

  1. She is so cute! Sorry to hear you have another diagnosis heading your way.

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