Thursday, January 07, 2016

Round Five Updates

This is Ruby's first 'intensification' round of chemo, meaning it's no longer getting her into remission, but rather solidifying it. (I think?) The protocol for Ruby this round is a one-hour infusion of chemo (one we've not had before) three days in a row, and she's hooked up to a continuous chemo (one she's had many times) for seven full days. That means she started at lunchtime yesterday (Wednesday) and the continuous chemo will run through next Wednesday at lunchtime. The constant hook-up is not ideal, but it *should* only be one tube. Right now she's hooked up to three: one for each chemo and one for fluids. I did talk to the team about fluids this morning; she's been hooked up to them since we've been here.

I am not a fan of the fluids hook-up because I have yet to receive a reason why she needs fluids. Ruby has always been drinking enough (they chart her diaper output, so it's easy to tell), she doesn't have a fever, and the fluids make her face a little puffy and her diapers too full too often. I seriously cannot keep that girl dry, so she has ended up with a diaper rash the last three stays when they've had her hooked up. When I brought it up during rounds this morning (the team didn't have anyone I had met before), they looked it up in their chart and couldn't find a reason to have her hooked up at all.

So they said they'd decrease it to only at night.....

Baby steps, I guess.

Ruby is still happy, eating well, drinking well. It's amazing to me how well she's doing, considering that typically patients experience the cumulative effect of chemo, making each round a little harder than the last. It's almost like it's been the opposite for Ruby. While we've noticed some fatigue when at home during rounds three and four, her general ability to handle the chemo itself (while hooked up) seems to be getting better with time. The first two rounds found her a little picky with foods or fatigued during the continuous drip, but this time, she's running around, as much as she can on her leash, eating everything she ever does. She took a hard nap this afternoon, but didn't act tired before it, and woke up ready to go. SO ready to go, in fact, that our evening consisted of her pushing her pole (instead of catching a ride on it) up and down two long halls, again and again. I had to hold onto the pole myself to slow it down because I was convinced she was going to push it over with the force she was giving. And her speed was seriously of the run variety rather than the walk....crazy girl!
Ruby did have one oral med today: Zofran, which helps with nausea. We've never used it outside of when she's actually hooked up to chemo because she's not had any issues with that. At dinner, I thought we might have our first bout; she had some deep coughs/heaves a few bites into dinner, followed by some tears and hugs from mommy. But then she picked up her head, said, 'More!', and was fine the rest of the night. This girl is so's not even funny.

1 comment:

Bethany Dixon-Ruggieri said...

So thankful that she is doing so well with the treatments:) your strength amazes me! Praying that 2016 brings Ruby healing and your family peace and comfort. Love from the Ruggieri's