Apologies for being a bit M.I.A. when it has come to updating this past week but in all honesty I needed a bit of a break. I didn’t realize that until my best friend Deena got here last week to spend a couple of days with Riley and I at the hospital. Having someone here in the room with us for an extended period of time I think let in sink in a little for me just how “not-normal” the way I spend my days here truly is. Not in a bad way, it just put me in a place of reflection I think. I’m by myself up here ALL week, all the time in a constant state of navigating my emotions and keeping positivity on the forefront. Being able to just sit and have conversation be it deep or mindless with someone who wasn’t leaving within the hour really put into perspective for me how much I’ve changed. Being this parent (as in “Mom of sick baby”) changes you. It has to, it changes everything. It changes the way you think, react and feel. It changes the way people look at you, talk to you, think about you. I’m now “perspective” for people when they are having a shitty day. I can’t tell you how many times I’ve heard different variations of this “you know I was stressing about _______ and then I thought of you and…well…what I was stressed about was stupid.” That’s an odd position to be in. I by no means want the journey that I’m on to belittle the day to day crap that others are going through but in reality I am happy to hear that people are letting go of the little things a bit each day and if I have something to do with that then SWEET. It is weird though. Whoever I was before…whatever people thought of when they heard my name is gone, and that is okay. I don’t think I knew who I was before anyway…I sure as hell didn’t understand my emotions or how my mind really worked but going through this has really taught me to focus, to pay attention and more than anything to be present in the moment. My life will no longer be made up of days but of moments and moments are all good, even the rough ones because they are mine and my attitude shapes them. I’ve learned to leave myself open to receive even the “bad” with the intention of good, keeping that mindset really has enabled me to maintain not just my sanity but to find happiness. It’s good stuff, I’m telling you…give it a whirl. 😉
As for little Riley she continues to be the trooper of all troopers. Her ANC started climbing last week as they introduced her to GCSF (the same medication I received to boost cell production for harvest) We started at 0 and then 50, the next day 100 and then 500…1400, 2600, 3100, 4000…go Riley GO! I refrained from posting these numbers daily or from running around outdoors shouting them at the top of my lungs because they can and will fluctuate. I myself am 150% aware of and prepped for that but I don’t want people to feel “WOO-HOO” one day and then “OH NO” the next if they go down. They will go down but then they’ll go back up…that’s simply just how this works. They stopped the GCSF 3 days ago and so her counts have been going down…again that is OK. I remember what it felt like to have my cell production ramped up and honestly I’m happy to see her counts down a little lower because it’s not a comfortable feeling to be running out of space in your marrow. Her ANC levels are within normal range for a healthy child…does that mean Riley is now a healthy child? Umm..no…not even a little. It was a nice thought there for a second though, huh? 😉 The ANC is simply the Absolute Neutrophil Count, neutrophils are a type of white blood cell that help to fight infection so yeah buddy we want lots of those but that is not all they are looking for but it is indeed the first “milestone” per say. The ANC is what they wiped out with the chemo, the fact that she does have counts back has lowered her risk for infections a bit and so they were able to take her off the pile of preventive antibiotics she was on. Next thing they are looking for is signs of engraftment; signs that her body is accepting the cells from my body and multiplying them on her own. Then they want to see T-cells, then see if the T cells are mine or hers (yeah, they can tell…so freakin weird) and then it’s all about function. Those T cells won’t do her a lick of good if they don’t work. They better work…I sent those little bastards in there with all the good intention I’ve got so fingers crossed they got the message. This journey is going to be all about baby-steps, small wins and lately we have gotten several and every one feels SO good. Here’s a lil list of some of the wins from the past week…ANC climbing, no signs of rejection, no one got barfed on, medication tappered off, one lumen hep-locked, no one got barfed on, we can now eat and drink in the room (HUGE win), her skin is still rash free and did I mention no one got barfed on? Lots of wins.
I am waiting on the doctors to come in for their rounds and fully update me on any new details for today. I did hear from my nurse that they are going to take her off the round the clock Zofran (anti-nausea med) and administer it only as needed. While I know that everything they’ve pumped into her little body is to help her it really is nice to see things slowly drop off and become “as needed” as opposed to “in order to function”. She continues to feel pretty good…still has her moments where she gives me the “I feel like shit” face but man it is the cutest little face and she has pretty much learned to just close those big blue eyes when that feeling creeps up and sleep it off. Please keep sending loads and loads of love our way. xoxo