Every project manager knows there's a number of different phases we need to cycle through to lead a project to a successful finish. One of the things I've learned over the years - is that careful planning and organization up front can make quite a bit of difference - especially when you are in the thick of things.
For me personally, some amount of planning (large or small) also helps keep me sane.
Over the last day or so, it has become more and more clear that Callum's doctors have been very pleased with his progress so far, and are extremely optimistic about sending him home as soon as possible.
Yesterday they were discussing sending us home on Day 5, Thursday. Today, however, they threw us a "curve" ball and said well if all goes well with his chemo tomorrow, we think he can go home tomorrow.
But so awesome and cool!
But so scary and insane!
And - OH SHIT, are we ready for this???
So today has been a little bit more focused on the planning and prepping and as much as possible, organization of this "project" (for lack of a better term). My dear friend Amanda has graciously volunteered to begin consolidating a "master" distribution email list of friends and family who'd like to be kept up to date on everything that's going on with Callum, and to enlist help from folks, when needed. Since not everyone (e.g. our coworkers) reads this blog, nor needs the enormous amount of detail that I like to document here (for you, sure, but mainly for me), she has been taking the important nuggets from my posts and then consolidating them into a high level summary to send out to the list. By the way, if you are interested in joining the list, please email me and we'll get you added.
She (and I) have also received a number of fantastic ideas from our friends and family on ways to help support us through the long journey ahead (thank you!). I've happily volunteered a few of my closest pals to help her in that cause and see how we can delegate out various tasks or errands to take care of. It's not very normal for me to accept (let alone ask) for help - but I've definitely come to realize that this time is quite different from any other, and we'll need any and all help we can get. :)
The hospital has started doing their own "prepping" of sorts - Jon and I have spent a lot of time today with a number of the nurses - going through a checklist of "trainings" that we need to understand before walking out the doors. I got my first "mini" lesson tonight on how to clean and change the caps of Callum's PICC line, and flush it out - something which we'll need to do regularly once we're home. We'll get our "official" lesson with a PICC team nurse tomorrow. But in the meantime, our night nurse gave me a few caps and syringes with saline to practice the "feel" of connecting them together.
And then there's my own planning. Right now, Paul is staying with us at the house to help out - mostly - with Logan, while Jon and I have been back and forth to the hospital. But, once Callum and I are home, I know he'll be helping us out in other ways with Callum too. The three of us (me, Jon and Paul) plus my parents, most likely, will all need to keep in sync on when we gave Callum his last set of meds, any notes we need to keep track of on his eating habits or temperament, etc.
This will mostly be to keep us all straight because inevitably, I think, someone will forget something. But, I figure it'll also help to have the log handy whenever we attend our bazillion follow up appointments, or (I hate to think about it but I know it'll happen to us eventually) a trip to the ER.
I'm still tweaking them but after today's news of potentially going home tomorrow, I thought I better get at least a straw man together stat!
Callum has been doing great - Jon spent most of the day with us at the hospital and we even got out and walked around a bit (he loved visiting the hospital's train set). The doctors pulled him off his low-phosphorus diet, to see how his numbers look tonight, and they've also pulled back on his fluids. All in an attempt to prep him for going home.
The only issue, which cropped up around lunchtime and has gotten worse (more painful for Callum) throughout the afternoon and evening, are these little sores in his mouth (inner cheeks). It's a side effect of chemotherapy, called mucositis, and can be super painful. He's been having trouble eating and just cries out in pain while laying in bed, which has been pretty hard to bear. :(
We gave him some Tylenol tonight and I'm just waiting now to do another dose, to hopefully take the edge off and allow him to sleep through the night. We'll see how it goes, poor little guy….