The Weighting Game

My head has been spinning for a week now. I thought it would slow down over time, but it hasn’t.

It all started last Wednesday. Willow met with her hematologist. Apparently her blood work showed extremely low levels of neutrophils. For those just joining our story, neutrophils are a type of white blood cell needed to fight off infections. For some reason Willow’s body doesn’t produce enough of them, leading to a diagnosis of Chronic Benign Neutropenia. To help avoid problems Willow has been getting shots of Neupogen twice a week for the past several months. Neupogen sparks the production of neutrophils. The shots are working, but not enough. Willow’s neutrophils were dangerously low last Wednesday. Almost non-existent. So her hematologist spelled out the options.

#1) Give Willow 3 shots a week, instead of 2.


#2) Increase the dosage of Neupogen.

Both options made me cringe. As Willow gets older, it’s becoming more and more difficult to administer the shots. Have I mentioned I’m the one who gives them to her? She’s squirmy and recognizes what’s happening. Because of that I’ve poked myself, I’ve ripped her skin, I’ve wasted shots and I’ve caused many bruises. I can’t even begin to explain the guilt I feel. Adding to the fun, is the fact that Neupogen makes Willow cranky. We’re fairly certain she experiences bone pain as a side effect. We were warned about this is the beginning, but were hopeful that wouldn’t be the case. As time has gone on, it’s become apparent that Neupogen causes some sort of discomfort. Tylenol is the only way to tame it. Unfortunately it doesn’t cure Mommy guilt.

As I begun to weigh the options, Willow’s hematologist continued his examination. That’s when things when from bad to just plain nuts. That day, Willow weighed in at 18 1/2 pounds. Sounds fine, until you consider she’s been that weight for about a year now. While I was surprised by her weight that day, I certainly wan’t concerned. That’s because in the past year Willow has gone through so much. A leukemia scare, hernia surgery and three different stomach bugs. She also had feeding issues and became mobile, very mobile, causing her to burn off most of the calories consumed. But Willow’s hematologist thinks there’s even more at play. He’s concerned that the Neupogen is making her so miserable it’s affecting her appetite. In fact, he’s so concerned about her weight that mid exam he proposed taking her off Neupogen completely. That’s right. We went from increasing her Neupogen at the beginning of the exam, to taking her off it completely. Is your head spinning too?

Maybe she'd gain some weight if she'd eat something other than her foot!
Maybe she’d gain some weight if she’d eat something other than her foot!

So, here we are, a week later, no white blood cells, no Neupogen, no clue what the future holds. Willow’s hematogist wants to do a 3 month trial. Call it a waiting game, or rather a weighting game. I still have no idea what this will show. If she gains weight, how do we know it’s because of the absence of Neupogen? And what happens if she gets horribly sick during this time? The cold/flu season is literally around the corner. Are we taking unnecessary chances here? Or will it all turn out ok? Good golly I wish the spinning would stop.

STOP! My mom has had enough! And, aren't my pigtails cute, ya'll?
STOP! My mom has had enough! And, aren’t my pigtails cute, ya’ll?

Can I tell ya the kicker of it all? Just before bedtime tonight, my 8 year old son told me his throat hurt. Really? You’ve been healthy all summer long and now your throat hurts! Hilarious, eh?

I wish I could be all clever and end this blog post with some sort of inspirational line or something, but the spinning in my head is killing my creativity. It’s also puncturing my prayers. Hey! Alliteration! That’s creative, right? For the past week my prayers have been so scattered. The minute I mention Willow’s name a million scary scenarios run through my head. I often find myself wondering what happened to my prayer. Did I finish it? Or did it just fizzle? I better say “amen” just to be safe.

The ironic and embarrassing part is that my last blog post was about turning my worry into wonder. If you haven’t noticed, worry is making a comeback. Thankfully, the wonder part is still going strong. I “wonder” if that’ll change?

Life. What a fun ride, eh?
Life. What a fun ride, eh?

6 thoughts on “The Weighting Game

  1. I’m sorry you all are going through this stress! But she’s so darn cute. Hope it all gets figured out soon. Regarding the battle with the shots, you probably already know this but in case you don’t, I recently heard there is a topical numbing cream that people use on their kids before blood draws. Maybe this would help?

    1. Thanks for the support! Sadly, we tried the numbing cream, but it actually added to the stress. It needs to sit on her leg for at least an hour to work, and after a few times of using it, she started recognizing it and crying, even though it didn’t hurt her. 😦 If we need to go back on Neupogen, I may look into this Buzzy Bee product that supposedly vibrates and causes natural numbing while also distracting her. Thanks again! Love reading about your family on your blog, by the way.

  2. We were given your blog name because our daughter also just had labs come back with severely low neutrophils. 3 days later they are back up to moderate but we will retest in 2w. Hope your daughter is doing well and you have some answers soon!

    1. I’m glad you stopped by my blog. I pray your daughter’s next lab reading is encouraging! We’re still figuring out this whole neutropenia thing, but I’m here for ya if you have any questions. God bless!

      1. Thank you! I appreciate that and will be checking in our your little sweetie to see how you guys are doing!!!

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