Wednesday, July 25, 2012

Two Weeks of Waiting.....

First of all here are Edward's hilarious beach pictures from the beginning of July.....









Over the last 2 weeks we have been playing the numbers game, and we have NOT been winning!  Eddie's darn neutrophils have been bouncing all over the place, but have not yet risen about the desired 750 mark.

This is Katie by the way, so you can expect a 5th grade type explanation of things/cussing/typos/etc. hahaha.  Basically neutrophils make up the largest percetange of what white blood cells are made of, and neutrophils are used to measure if the body is ready or not for the next round of chemotherapy.  So we came back from Will's Eye on the 11th and went to UVA on the morning of the 12th for a CBC (Complete Blood Count).  This involves me, my mom and Eddie, going to the Oncology floor where the nurses check all of his vital signs and then take a small vial of blood from his PICC line ( I don't know what that stands for, and I SHOULD!  Peripheral Interarterial Central Catherter???? I am too tired to google it right now... lazy...) anyways it doesn't hurt him at all, but the blood is sent to the lab, and then we wait.  and wait.... and wait...... until the lab results are back.......We expected to have fluids started and get admitted to the 7th floor, which usually happens. We have never NOT (double negative, I know I know) made counts before so we were not expecting Eddie to have a ANC (Absolute Neutrophil Count) of 730.  He needs 750.  Please, please, please, I beg the doctor.  Nope, they said, we have to go home and wait a few days.   For 20 darn cells? ahhhhhh! SO disappointed.... So me, my mom, and Eddie, packed up all 8 ( not kidding ) bags that we brought to the hospital and lugged everything out to the parking lot to go home.  We were very sad and decided to take Eddie to the toy store on the "way" home and buy him 3 toys, and then..... oh, what do yo know? Sweet Frogs is next door to the toy store, so all three of us had frozen yogurt for lunch! This all happened on Thursday.

Bring on the next few days of waiting.  My mom went home.  Mike and I had a nice weekend with Edward. We didn't do anything special, just played and laughed, and enjoyed our extra time.  Waiting, waiting, waiting for Monday, our next scheduled CBC.

AND THEN COMES SUNDAY EVENING circa 5 p.m.

Me:  I think Eddie feels kinda warm.
Mike: Yeah, me too, we should check his temperature.
Thermometer:  Beep. Beep. Beep. 100.7
Me: Oh Shit. Here we go again.
Mike:  Well maybe it wasn't right, lets try the other thermometer.
Me:  Whatever...
Other Thermometer: Beep. Beep. Beep 100.9
Mike: Well, I will call the on-call doc.
Me:  I will pack an overnight bag.  I know we are going to end up at the hospital tonight......

* Edward goes to bed, no tylenol allowed in case it masks a serious infection, the on-call doctor said to come straight to the ER if his temperature reaches 101.5.  Thankfully, it never did, but Mike and I sat on the couch later that night and had this conversation.

Me: There are 2 more beers in the fridge.  If we end up going to the hospital tonight, you and me are chugging those beers before we leave.
Mike: Screw that, I am packing them in my bag and drinking both of them myself at the hospital.
HAPPY 3 YEAR ANIVERSARY MIKE! hahaha.  What a brat!
 
MONDAY MORNING of the 16th: Long story short, all 8 bags are packed, I haul Eddie and the riduluously packed stroller to the hospital, blood drawn, sent to lab...... 190 Neutrophils.    190????? WHAT!! They went down?  UGH, obviously he is getting sick, and whatever he has is driving his white blood cells down, down, down. We had a bad feeling because of the fever, but we didn't think his counts would drop that fast....
And so I pack up the bags and Mike walks me to the car, Eddie and I go home. With sad faces.


He had low grade fevers, not high enough to be admitted, but high enough to make a new young Momma worried all week!  He had a runny nose, cough, and was tugging at his ears.  He wasn't sleeping at night and was only drink 2 ozs out of his usual 6 oz bottles.  My Mom and Aunt Annie came down to visit and spoiled him rotten, but they both agreed, he wasn't himself.  We took him to the pediatrician, but no ear ache.  We all had our money placed on our bet that he had an ear ache. We were all wrong, just a summer cold, that was wreaking havoc on his little chemotherapy/worn out immune system.  Aunt Annie gave him a TRAIN to make him feel better, hahah, and maybe it worked???????  He loves riding on his train.  She also brought 25 tracks that connect so he can ride it all around the house.  I would like to shove these darn tracks.... well, Aunt Annie, if you get a packed in the mail.... hahah I would never.  He loves it!  But now our living room is a train station.   How many times a day do I stub my toe on a train track... don't ask me to count... Then on Friday, my mom and aunt Annie went home :(

Bring on the next weekend of waiting.  Mike and I had a nice surprise Satutday morning.....squealing, playing with his toys, running all over the place!  He started eating much better and drinking a little more too.  Edward was even better on Sunday.  We were so happy to have our Edward back, and we spent the day waiting, waiting, waiting for Monday morning, our 3rd scheduled CBC. I wrote this letter on facebook to "encourage" his neutrophils:
Dear Neutrophils,
I know we have a love/hate relationship.
Tomorrow, we need 750 of you to show up on Eddie's CBC.
So get your shit together..... or else.
Love,
Katie
* My mom called me immediately and scolded me for using the "s-word" but I told her that desparate times call for desparate measures....
MONDAY  MORNING of the 23rd:  Long story even shorter.... 500 Neutrophils..... still not enough, come back on Thursday, they said.  And so here we are on the eve of our 4th sheduled CBC.  I am ANXIOUS, so damn anxious, I can't sleep.  I. just. want. to. cross. off. cycle. number. 5. and. then...... at least we can say, "only one more round of chemo"..... and we. can. take. that. PICC. line. OUT!

We will let you know tomorrow how it goes..................

2 comments:

  1. I'm on pins and needles just dying to know if he made counts today. PICC- peripherally inserted central catheter (but that's beside the point). I LOVED your banter about the last two beers!!! It's nice to see that you two are keeping your sense of humor about you. It's so easy to get bogged down in the stress. Gotta find the fun where you can. Big squeezey hugs for Eddie.

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  2. Hi Katie - It's Katie Duffy, Tom Gorman's sister. I just wanted to let you know that I have been following Eddie's progress, and your blog entries are great. You guys seem to have really kept your sense of humor, and Eddie looks like he doesn't have a care in the world! Hopefully soon this will all be a bad memory - for you not him! It will be like his NICU experience - when he's older you'll talk about it and he'll look at you like, "Whatever, Mom. I don't remember and have no clue what you're talking about! I'm fine!" I am thinking of you all, especially Maggie's little preemie buddy. I know TubbyG wants them to get together someday!

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