Heading Home

SEAN: Update on Charlotte: Great news! It looks like she may be discharged today around 4pmish! Once home she will continue on her medications and we'll be watching her closely. So thankful for everyone and your support!

SEAN: Charlotte is back at her home sweet home. She didn't eat much, but we did manage to get her two evening meds down. Since Charly has a compromised immune system, we have to keep our home stocked with Lysol, bleach, hand sanitizer, etc. Infection control is just one of the many things we'll become experts at to keep her safe and healing. Additionally, we're going to become very familiar with all types of chemo drugs and weird medical jargon.

ALYCIA: Finally, after 4 hours, Charly's discharge was finalized and we came home from the hospital. This will ultimately be a 2-3 year fight, with hopefully the most difficult being these next 6-9 months. Everything is dependent on how she responds to the chemo and the meds. She has already started chemo - right now it's 2-3 different meds that are classified as "Chemo". Then we have another half dozen to go along. Steroids (or "Scare-oids" as some of the nurses call them) are taken these next 30 days to increase the effectiveness of the chemo - vincristin (I'm spelling it wrong, but I don't want to get up and dig through the 300-page information booklet to get the right spelling). The steroids have caused Charlotte to have high blood pressure, so she's taking a med to get that back down. The steroids also cause acid reflex, so she has another med for that. We have Tylenol and something else for pain. Mostly she is complaining of headaches - a side affect of the steroids and high blood pressure - and jaw pain - that is a side affect of the chemo. We have Miralax - because the chemo will make her backed up. Another med for upset stomach from chemo. We also have to give her antibiotics every Monday and Tuesday, since she is so susceptible to infection.

I see our biggest daily battle will be to get Charly to eat, drink, and poop. Our biggest weekly battle will be to endure chemo up at the PCMC oncology clinic. Friday we go back up for a lumbar puncture, on top of Naomi's birthday party. My mom and Ashly, our neighbor, are going to back us up to help keep the party on if there is a time conflict. Then the rest of this month has weekly chemo treatments on Friday mornings. At the end of this month, there will be another lumbar puncture and bone marrow sample. What follows will depend on the test results. If her cancer cells are proving resistant, they'll step up the meds. But we hope we will see everything move in the direction we want it to.

Thanks again for the sincere offerings to help. I promise to use you all if something comes up. Today's funny/sad quote was Charlotte's response to dinner, "mom, the smell of that pasta is making my ears hurt!"

xoxo to all. Alycia

“Thanks Jana and the Mills crew! Our new addition is now named Cheeto.”

Our Primary leaders decorated our house for Charlotte's return.