Saturday, January 26, 2013


Emma has had stomach issues (the runs) since she quit throwing up on Sunday.  She's also been very tired.  I wasn't sure if the illness was making her lethargic or if it was low counts.  So, I called the dr, and they thought she should come in for some blood work.

My Facebook Update:

When Emma found out it wasn't going to be a simple finger poke, she put up quite the fight. No crying, just curling up into a ball of steel (thanks, steroids), refusing to give us her arm, and letting us know she wasn't getting an arm poke. I briefly considered tackling the phlebotomist instead and letting Emma poke her in the arm to get her revenge! But I didn't. Emma finally complied. 

Life as a ninja is always an adventure.

Hemoglobin 8.6
Platelets 30
ANC 480

Not good numbers.

If you recall, an ANC under 500 is really low.  It means she has very little immune strength.  It's most likely due to her being sick that it's dropping low.  I would imagine if we can get her healthy again, overtime, it would increase again.

We feel like the androgens have helped her hemoglobin stay as strong as it is.  It's fluctuating from 9 to 8.6, but that's not a big change.  From pre-androgen experience, Emma's hemoglobin would normally have fallen low enough to need transfusions from illness like this.  So, it's nice to see that it's helping her that way.

Did I already say we are looking to change her to oxymetholone instead of danazol?  It's supposed to work better and some FA adults say it increased their immune system numbers too.  The danazol doesn't help Emma's immune system at all, so hopefully the oxymetholone would do something.

Emma's hospital/dr anxiety has gotten tremendously better lately.  She talks a little bit to the drs now instead of not at all.  She still glares at them and rolls her eyes when they talk to her (I wonder what they think - haha!), but she'll actually speak regularly at times now, which is new.  She told me today that she isn't scared like she used to be.  I'm so glad!

Oh, and it was funny.  We saw Dr W today, then Dr G2 walked by and said hi.  Then Dr L walked by and glared at her (being funny).  Then Dr G1 walked in and said hi to her for a few minutes.  He showed her pictures of his cat.  We might sometimes see one other dr walk by, so it was funny to see all four and for them to all make a point of making faces at her and saying hi.

Another funny is that, in the past month or two, three of the doctors have said something along the lines of, "Emma, I've been taking care of you since you were a baby!"  I corrected the first one who said that, but I haven't had the heart to correct the other two. never saw her as a baby.  She was three when we moved here.  It's just funny they all think they had her from the beginning.


Emotionally it's finally all hitting.  I was feeling some stress & grief through out everything as well, but now it's much stronger.  I feel like just crying and crying.  I don't even need a specific reason or thought or anything.  If I have a minute to myself, the tears are right there.

I'm having a hard time seeing her ANC so low so much.  I know it'll go back up (right?).  Why doesn't it work to simply will her counts back up to normal.  She's been pale and very tired.  Low hemoglobin affects everyone differently, and I've noticed once Emma's goes below 10, she has a hard time thinking as fast.  Then in the 9's, she is noticeably tired.  In the 8's, she becomes very stationary, only getting up when it's necessary.

I've stopped asking her to do very much work at all because I know it exhausts her.  When I see her walking around and then resting because she doesn't have energy to keep going, it makes me want to cry.  A child should be able to run and play.  She told me that she can't run very fast right now...and she can't.

I want there to be an option for a cure.

And, I also want to go to bed because I am suddenly about to fall asleep.

It always scares me when I publish an entry when I can't even remember what I just wrote...


  1. Oh Teresa. I am SO sorry. You're need to cry is COMPLETELY understandable!
    "Why doesn't it work to simply will her counts back up to normal." If only that were enough to fix so many things, right? I have continued to pray for her health, as well as for your strength and peace. I hope everyone else is feeling better!
    Take care of you! Thinking of and praying for you.

    1. Thank you so much, Krista! I appreciate your prayers & support so much.

  2. Emma is losing that baby face and turning into a BEAUTIFUL young lady! You must be one proud Mama to have such a STRONG daughter! Prayers!