Lila

Lila

Thursday, February 26, 2015

A few days at home

No huge updates to share. We are at home this week, settling in to the new normal of medications, feeding tubes, and cabin fever. I wish I could say that everything is super-awesome and we've got this situation totally under control. I don't think chemo works like that.

Lots of ups and downs. Epic tantrums. Medicine every 3 hours. Feeding tube getting yanked out every few days, despite our best efforts at taping. Lack of sleep all around. Kinda feels like we've got a newborn in the house.

Truth is, parenthood is difficult whether your child is sick or not. If you've got small kids at home, you know these ups and downs too. 

But we've got a lot to be thankful for. Great friends and family who are willing to sacrifice to make this work. Fine doctors and medical support. Food deliveries. And Callie is adjusting to her new role as big-sister/caretaker/inspirational speaker.

Having an iPad really helps. Also Netflix and princess dresses. Being at home is better for the patient's spirits than being in the hospital, but I do miss getting my daily caffeine dose from Suzie's Espresso in the hospital cafeteria (large latte, three shots, one sugar).


This afternoon is Lila's first outpatient chemo treatment. Hope that goes well. She's got a little hivey-looking rash that we are monitoring closely.

2 comments:

  1. Keeping you in our prayers thru this journey. We are friends of Carrie Thornthwaite. God bless, Stan and Pam Day

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  2. I bet your days feel very long and hard and your nights feel way too short. Praying for abudant strength and encouragement as you adjust to this new routine! The Lord will carry you when you feel you cannot take another step! Lots of love!

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