Another Day

The hardest part of writing is getting started.  That may not be true for everyone, but it's absolutely the case when I want to put an update together.  I usually spend a couple of hours writing and editing posts (at least for the ones that aren't quick updates).  If I don't think I can do it all in one pass, I put it off and wait until I can find those moments.  Well, with the hustle and bustle of life lately, 'a couple of hours' chunks don't really avail themselves very often.  I say all of this to say, I owe you, the reader, a bit of an apology.  We have done a poor job in recent months of providing updates on Ashley and the journey our family is walking.  We appreciate those who have reached out in the absence of those updates to check in and ask how things are going.

So here we are, four months since our last update.  It's been a bit of a mixed bag in terms of how things are going.  Here's a high level run down of the high points.

Let's start with the medical information.  Four months ago we were in the midst of chemo that was hopefully thwarting the growth of the tumor.  For all intents and purposes, based on the latest scans, there wasn't any significant change in the tumor. We wound up completing a second course of that chemo.  Once we finished that round, it was decided to take a break from that chemo until (at least) our January scans (citing side effects, clinical performance and a relatively neutral impact on the tumor).  She is still on her infusions every three weeks of Avastin (which is a chemo that essentially reduces the body's ability to create new blood vessels; thereby starving any new parts of the tumor from growing).  She's been on that infusion for a while now and as to whether it's doing what it's intended to do... well, we haven't seen any offshoots gain significant ground and the side effects are relatively mild so we're holding course with that one.  Other than the chemo and some minor adjustments to her daily regimen, nothing significant has changed on the medicinal front.

Clinically speaking, this is where we've seen the biggest change over the past quarter.  Wanting so desperately to have a better report to share, the changes have not moved in a positive direction.  We last wrote that Ashley is having to use a walker full time.  That's not changed.  We have struggled with some stability issues more so in recent weeks.  She's had some decent falls that have left a few bruises, but thankfully (by God's grace) nothing has been so severe that we've had to seek medical attention.  Her memory is starting to wane as well.  There have been several instances of repeat conversations taking place within 15 minutes of each other.  Speaking of conversations, speech and finding the right words to use is one of the most tangible examples of decline.  This has become of one of the more difficult streams to navigate.  It's taking more effort to chain together thoughts and express them in a way that can be easily understood.

So what does this look like in our day to day?  How are we navigating things?  How's everyone doing?  All good questions and all questions that I seem to get asked periodically.  Let's work through some of that now...

All in all, those two paragraphs above sum up where we are: Medically things are "stagnant" and Clinically things are in a state of decline (steady, albeit noticeable).  One of the things I want to guard against is fatigue in continuing to report 'decline' every time we write these updates.  Know that there really is a noticeable change from period to period, and it feels like when we start to level off something else seems to crop up.  Such is the nature of this disease though.  For all of the 'decline' we seem to experience, there is also a component of reprieve that comes with it.  Everything has a balance to it.  Are we declining clinically in the areas of speech, memory and stability? Yes. Is fatigue still significant? Yes.  And though we are seeing these things fail more and more, it has spurred on a sense of urgency to use them while we have them.  To that end, we've had a good handful of opportunities lately to get out and do things with the girls.  From eating lunches at school, to Christmas performances, to field days... we've taken every chance we've had to enjoy those moments together as a family.  We've gone and done things together as a family on weekends to soak up as much as possible.  I say all of this to say, in the difficult moments of realizing that circumstances are only growing more difficult, we've had to be aggressive in finding ways to enjoy the blessings we've been afforded.

Here's the bottom line: There are days that it feels like we are on the last leg of this race.  There are days that seem better than others.  We ultimately don't know what the future holds or how long God will bless us with days together.  Truth be told, shifting mindsets from trying to figure that out to embracing the moments that are directly in front of us has been somewhat freeing and calming.  We may be in for a really rocky 2022, for that matter we may be in for a rocky end to 2021... it honestly doesn't matter; what matters is that we recognize this for what it is.  This is all a trial.  For as desperate as some moments feel, the One who presides over it all in His Sovereignty is the focus.  May we be found faithful in these moments He's given us.  Oh that He uses these trials to drive us deeper into relationship with Him! About two months ago, I added this prayer into the fold with our girls during our bedtime prayers.  "Thank you for another day together as a family" As we trudge forward, those words gain value for each passing day.  It is a blessing. 

As we are preparing to enjoy the Christmas season, our focus is on the miracle that is 'God with Us'.  Jesus, the Lamb of God, is absolutely beautiful.  He is the reason for the season.  He is the reason we are held together.  For the Glory of God.  I pray earnestly that you and your family find time to dwell on the miracle of Jesus' birth.  That you realize that He is the Lord of all.  That you would take every opportunity with those around you to reflect on that.  That you would enjoy every moment given with your family.  That you would be eager to tell others that you love them, and at the end of the day... you would rest in the Peace that only Christ can give.  For every hardship, disappointment, trial, victory, enjoyment and situation you find yourself in... remember that you have a Father in Heaven who loved us SO much that He gave His only Son... genuine belief in Jesus leads to eternal life not the perishing we are due.  My excitement of Christmas is only rivaled by the excitement of Easter and in a week as we celebrate the coming of the Lord; my eyes are set on the cross and the victory over death.  For the Glory of God.