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.

Update after first surgery

Lila's surgery went well and she is now recovering and sleeping beside her mama. She has already requested a Popsicle. 

The tumor is malignant as expected, but we won't know about the exact type and stage until tomorrow or Friday. 

They were glad that the tumor is not coming from her ovaries or uterus. It is very vascular, however, and to remove it would have made her lose a lot of blood and they didn't want to put her through a stay in the ICU and a blood transfusion without knowing what kind of tumor it was. 

They have a first and second guess about the tumor type, and both respond well to chemo treatments. She will probably begin chemo as soon as some pathology reports come in (first one tomorrow, second one Friday, then a DNA test with results in 7-10 days). 

The chemo would be used to shrink or melt away the tumor with a surgery possible later to remove the remaining mass. 

We are so humbled and blessed by your prayers! Thank you for loving our little girl. 

First photo post-surgery. Sleeping good.