Lila

Lila

Tuesday, March 10, 2015

Approaching the Nadir

Time to drop some science on all y'all. In chemo parlance, the nadir (pronounced like Ralph Nader), is the time after chemo when the patient's cell count is lowest, which means they are the most immunocompromised. It's your low point. For Lila's particular cocktail of drugs, the nadir usually arrives 10 days after the BIG dose.

Because she got her BIG dose last Thursday, we are approaching her nadir this coming weekend. The last nadir happened while we were in the hospital. Its effects were complicated by surgery recovery and general stir-craziness, so we're not sure exactly what to expect this time.

But that last nadir was a doozy. Her entire GI tract developed sores, which meant she didn't open her mouth (literally) for 4 days. No swallowing, drinking, or anything. Just drooling out the corner of her mouth and feeling listless. We were most grateful for the feeding tube at this time, which can also be used to administer medications and and keep her hydrated without an IV. Her counts were so low, she ended up needing a blood transfusion to help her recover.

Behaviorally speaking, Sarah and I become germ nazis as the nadir approaches. Want to grab lunch? I'm gonna need a blood sample first (kidding ... mostly). Callie has to change her clothes after school and the VERY FIRST thing we do upon returning home is wash our hands. And then maybe wash them again.

We also give her a shot of Neupogen in her thighs every day. Neupogen is like fertilizer for her bone marrow and helps her body produce new white blood cells. It's a small dose through a tiny insulin needle and really only hurts when it's going in. She is very brave about it, usually crying but not thrashing or pushing us away.

That concludes our lesson. Quiz next time I see you. Key concepts: Nadir, Neupogen shots.

Lila's spirits have been high recently and she has been full of energy and good cheer. Her belly is noticeably smaller too. Y'all be praying that she sails through the coming low point without incident. We may not be out-and-about much in the coming weeks, but we are so grateful for all the emails, texts, meals, and more. You guys are pretty great.

Lila loves to take selfies.



Oh yeah, and we have this other awesome kid too. She's reading everything in sight these days. She's also learning to ride a bike but keeps getting sidetracked by the need to draw road signs on the driveway.

After she drew this one, she looked up at me and said, "It's not the best diamond ever," and we both cracked up.


6 comments:

  1. Y'all are awesome.

    Still thinking and praying for you guys all the time!

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  2. Breathing...and praying. Y'all are on our hearts, especially this weekend. Love y'all!!

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  3. don't be afraid to make guests wear masks and "Scrub in" to come visit. Real friends don't mind helping you keep your wee one healthy. No one wants your baby girl to have to fight something else, too.
    You are all in our prayers!

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  4. Glad you keep posting... You seem to know when we get antsy for news! We're always praying, always worried that things are getting too heavy for you. Glad you guys are so easy to read! Ok, we would read every word even if you weren't... but dang, you write well! Thanks for keeping us all in the loop! You guys are pretty cool for doing that! -Epp

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  5. Thanks for posting. We are sending our love and good thoughts from Oxford, especially this weekend. Stay strong!

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  6. Been praying and thinking about you all often! Asking The Lord to give your sweet girl extra strength as she fights the battle in these next upcoming days!

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