Sunday, March 13, 2011

Neutropenia 101

I thought I'd better hop back onto blogger before too much time elapsed.  So, here I am. Again.

For the last couple of weeks, I had a feeling that something was a little "off" with Faith.  You know that nagging feeling that comes from deep inside? The one that sets off some panic alarms along with worry and anxiety?  Yup, that's the one.    That "feeling" got the best of me and I called up Faith's hematology doc to take her in for what I was hoping to be a quick check and CBC.  Luckily for my frayed nerves, they were able to get her in the same day I called.   I grabbed Faith and my Bff Teri, and we headed off into town to the Children's Hospital Center for Cancer and Blood Disorders.  

Before I give you the scoop, let me share a funny about when I actually called to make the appointment.
Here goes:

Receptionist (we'll call her lady): Good Morning, Children's Hospital Center for Cancer and Blood Disorders, how can I help you?
Me:  Good morning, I'd like to make an appointment for my daughter to come in for a quick CBC.
Lady: Okay, what is your daughter's name?
Me: Faith Newcomb
Lady: Date of birth?
Me: April 16, 2009
Lady: Hmmmm, can you spell the last name?
Me: N e w c o m b
Lady: (silence...)  Umm, do you have an order for her to be seen?
Me: No, I don't, she's been seen there before, many times. She's to be seen PRN.
Lady: Hmmmm, I am not finding her in our system.  Are you sure she's been seen here?
Me: Oh yes, I am sure, she's seen Dr. Cook since she was 9 weeks old.
Lady: Spell her first name please.
Me: F a i t h.
Lady: Oh! FAITH! We know little Faith! Oh my goodness, I thought you were saying "Space" Newcomb!   Oh gosh yes, please bring Faith in at 1:45 to see the doctor.
Me: Thank you so much, I will have "Space" there then!

I got a good laugh out of bringing "Space" Newcomb to the check in counter when we arrived at our appointment :)

Anyway, long story short, after nearly 3 hours in the clinic, it was determined that Faith was heading towards being critically neutropenic again.  Her last count was 5.6, which was totally awesome...about blew the doctor away since she had been down to 0.1!

Here is a quick tutorial on neutropenia:
Neutrophils:  surround and destroy bacteria in your body.
The term neutropenia describes the situation where the number of neutrophils in the blood is too low. Neutrophils are very important in defending the body against bacterial infections, and therefore, a person with too few neutrophils is more susceptible to bacterial infections.
The body protects itself against the constant risk of infection by making a lot of neutrophils. They are your main defense against infections.
People with neutropenia get infections easily and often. Most of the infections occur in the lungs, mouth and throat, sinuses and skin. Painful mouth ulcers, gum infections, ear infections and periodontal disease are common. Severe, life-threatening infections may occur. Often the child must be hospitalized and receive intravenous antibiotics.

Okay, so we're clear on just what Neutropenia is, right?  Good.

Faith's ANC (absolute neutrophil count) was 0.9.   She's not even safe to take a trip to Target if she's not above 1.5.    So, without knowing how long she has been neutropenic again, we dodged a bullet in the fact that she did not develop a serious bacterial infection.  She did get a nasty case of strep throat, but she handled it well after receiving 2 injections of kick butt antibiotics.

So, Faith had to be infused with a dose of Neupogen, also called Filgrastim.  Filgrastim is in a class of medications called colony-stimulating factors.  It works by forcing the bone marrow to make more neutrophils, in turn, increasing the ANC.  

Tomorrow at 10:15, we return to the clinic to see just how much Faith's ANC went up.  If not enough, she'll be infused again.  And now, we'll have to be taken off PRN status at the clinic and go for regular CBC's again. Ugh!   Even with that "ugh" said, I am SO thankful for such wonderful doctors that take care of my little "Space".

Ending with a funny pic...not so funny at the time, but it is now.  Let me preface this by telling you that before this happened, I had JUST cleaned up an entire box of Raisin Bran that Faith dumped all over the place.  Now this??  

"Say what?  Milk falling from the sky? Where'd that come from? Who did that? Me?"

Yes, people, she dumped a FULL gallon of milk.  Fun times, fun times...


  1. So glad you got Space in so quickly!Little stinker!! :)

  2. Love the story about "Space" needing an appointment! We know all about Neutropenia as my Emily has DS and's no fun when their counts are low because you have to worry about every single little cold or bug that could come her way. I hope she gets better soon. Will she ever grow out of the Neutropenia or is there any solution to this problem cause I can't imagine having to deal with that for a long period of time?

  3. Hmmmm...maybe I am having second thoughts about her staying at my house with all the disastrous messes she has been making lately :) She better not teach Ella anything naughty!1 Oh wait, Ella wouldn't think of touching food, that's right!! Four more days....can't wait!!!

  4. I was wondering what was going on with her! So glad you updated your blog. I can't imagine having to get her blood drawn all the time and to worry over every illness. I guess I am wondering the same thing, will she grow out of this or is it fixable?

    Glad I'm not the only one constantly cleaning up after a little tornado!

  5. I hope Faith is feeling better soon and can avoid an infection.

    At least you have a dog to help you clean up. :)

  6. Hi... I just came across your blog as I googled Down Syndrome and Neutropenia. I have a 3yr old daughter with DS and neutropenia as well. I'd like to ask you some questions if that's ok. Please email me at Thank you and look forward to hearing from you.