Wednesday, March 16, 2011

Leaving on a Jet Plane...

Don't know if I'll be back again!

I can't wait until Friday.  That's the day Faith and I head out to California to meet up with some pretty special people.  I am excited and nervous all at the same time.  I hate flying. HATE it.  Scares me to death. But, with a little help from my friends (aka, benzodiazapines) I think I'll be fine.

It's going to be a whirlwind trip,  leaving Friday, returning Tuesday night.  But, it will give a great start to Spring Break...when I will have the kids ALL home with  me  until April 5th.  Oy!

I plan to bring my laptop to post pictures from our trip, but I may just be having way too much fun to sit down to do that.

I need to tackle my mile long list of things to do before I leave.  I have so much to do I don't even know where to start.  Of course, I have to clean my house like I am nesting because I do NOT want to come home to a house that needs cleaning...and I had to farm out 5 kids to stay with family/friends and now I have to pack.  15 bottles of Faith's Pediasure and 30 packets of thickener will certainly give my back a workout hefting that through the airport!

Signing off...busy, busy!

Edited to say:  Faith returned to the hematology/oncology clinic on Monday...her ANC went from 0.9 to 1.9 with the help of neupogen!  Ideally, the doc would like her above 2.0, but she made the "safe zone" at 1.9.     We'll be seeing the doc again when we return to keep check on her ever changing counts.  But, for now, she's good!

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...

Sunday, March 6, 2011

Wait for it...wait for it...

Yes, it's me...returning to the blogosphere after a long, unintentional  hiatus.   I find myself missing the cathartic release that comes with pounding out my thoughts on the keyboard, as random as they sometimes are.

Much has gone on since my last post in November (November, really??), but nothing so noteworthy that I need to back step and write about it.

Except for one thing.

One slightly big thing.

Okay, one really big thing.

Roy moved out of our home on February 1st.   We decided to separate as the arguments between us were becoming constant and it was putting our home and kids in a toxic place.   I am filing for a legal separation this week, and after some time, we will decide if we want to finalize it as a divorce.   My heart is heavy and I am torn though.  18 years with the same man.  My WHOLE adult life. Six children. Love. Companionship. Family.  We have many bonds that I am finding hurt like hell nothing else I've ever experienced, save for the grief that came with losing my big brother. Yes, it feels like grief.   But, as some wise woman told me (thanks Mom!)  "it is better for the kids to come from a broken home than to live  in one".

So true, oh wise one. (And Mom, notice I did not say old wise one :)

Even though we don't live in the same house, we still share six beautiful, wonderful children.  We are still a family.   Roy didn't abandon us, he didn't disappear.   Even though I am officially a 'single mom', I am thankful that I don't have the additional burden of having to go back to work to support the kids and myself financially.  I am thankful that Roy works 2 jobs to support us the best he can.

I have to admit, at first, I was full of anger. Full of animosity. Full of bitterness and resent.  Mostly over the fact that Roy doesn't have the "harder" job of caring for six children and being on duty from sun up to sun up. (in other words, 24/7).  I was angry with him for being able to go to work, then go to his home and not have any responsibilities  there other than to take care of just one.   Himself.   Now, though, after 5 weeks of being apart, I have come to realize that he hurts too.  He is lonely.  He misses his kids.  He is stressed too.

Yes, some of those feelings of anger and resent are still there, mostly because this isn't the way I wanted my life and the life of my family to turn out.  But, for now, it is what it is, and I (we ) will make the best of it.   There is more peace in the house without the toxicity between Roy and much peace as there can be with 4 boys and 2 girls...I suppose it's all relative.

I am trying, with a lot of help from my friends and family (and to be honest, a therapist and medication too) to be the best I can be as ME.  Not just "single mom me", but ME.

I am counting down the days until little Faith and I leave on a jet plane to fly to sunny (hopefully) California to meet up with some friends with 47 chromosomes too.   March 18th can't get here soon enough!

Now, what would a blog post be without a picture of my princess?