The Tunnel

Tunnels are interesting creations.  They are passageways from one point to another.  Sometimes they are big enough for people to move through, sometimes animals create their own and even still, water has the ability to channel its way underground creating its own tunnel.  Tunnels are meant for movement; whether intentional or through the natural unfolding of life.  The thing about tunnels, though, is that there is a start and an end, no one lives forever inside of one.  There is an old saying that there is a light at the end of the tunnel. It is usually a phrase meant to encourage those who are in the thick of a situation.  When times are toughest, moments are darkest and encouragement is most needed. To see that light at the end of the tunnel, would signify that the darkness is soon to be extinguished by the light... that the journey is nearing its completion.

We are certainly in the midst of a tunnel right now.  

The sequence of events over the past couple of months have felt like some of the darkest we've faced.  I almost feel like hearing Ashley's cancer has returned was, in some ways, harder to hear than the initial diagnosis a couple of years ago.  Nevertheless, we battle onward.  We aren't going to stand here idle, we will continue to run the race.  A couple of months ago, Ashley had an MRI.  It showed a spot in the same general area as the original tumor.  Though disheartening, I was/am thankful that it wasn't any worse than it was.

Once we heard the cancer was growing again, we met with Neurosurgery to consider that option.  Given Ashley's disposition for seizure activity, surgery would not be considered an option unless we could get them (seizures) to stop altogether. If you'll recall, there have been multiple focal seizures on a daily basis for the past five to six months. Working with her Epileptologist and NeuroOncologist, we've navigated through the uncharted (quite literally) waters of the cocktail that is Ashley's medication profile. [Side Bar: If anyone is curious about any of the medications she uses, I'm happy to discuss that whenever; I'm starting to discover that a lot of people use a variety of these medications with varied experiences.]  We've modified dosages, added meds, subtracted meds, readjusted dosages again... the fine balance of trying to find the sweet spot.  Have we found it? Absolutely not.  Are we closer? Presently unknown.  The thing is, her seizures (while not generalized or totally debilitating) are an ever present reminder that something is awry in her head.  With all of these medications, we've been able to minimize their spread and control the frequency to some extent.  Her Epileptologist, though, thinks that in order to stop these seizures completely, we'd have to medicate at such a high dosage that Ashley would be so sedated that it wouldn't gain us anything.  So, given all of that, I don’t see a path where surgery would be considered an option.

It was a sobering moment to sit there and realize we were about to start back down the road we had only finished 11 months prior.  And yet, that's what we did.  We started a course of Temodar (chemotherapy) in February.  Historically speaking, it'd usually take about 10 days from start to finish for Ashley to complete the therapy and get back on her feet (five days of actual medication, and five more days of recovery because the ill-effects were a big *thumbs-down*).  This go around, it was really about 15 days from start to finish.  Ash didn't recover nearly as quickly as she used to.

We were slated for two rounds of Temodar and would recheck the status of everything with another scan in April.  Hopefully seeing a halt in growth, as well as, some stability in seizure activity.  I use the term 'slated' earlier, because that was the original plan; but as we've seen over the past couple of weeks, plans are only as good as the non-COVID-19 paper they are written on.  For the past week and a half, maybe two weeks, Ashley's seizures have not just been in her foot; they've also worked their way into her hand as well.  That's not usually a good sign that things are going the direction we need them to.  After speaking with her doctor over the course of a few days, she decided it'd be a good idea to go ahead and get a scan now.  It'd tell us a couple of key things: Is the Temodar being effective?  Is the tumor relatively stable (compared to the January scan)?

No: On both accounts.

To say that yesterday was a gut-wrenching, exhausting, down-right crummy day would be about four clicks up from what the day actually was.  More on the actual clinic experience in a minute, but in summary yesterday ended with analogous glimmers of light.  The tunnel's tracks are growing shorter.  The silhouettes of our shadows are beginning to take shape from the spill over of light entering through the breach.  Ashley's tumor isn't responding well to the Temodar, and it is apparent that the tumor is progressing forward in her brain.  It is obviously starting to cause some additional motor function issues (e.g. her hand-seizure involvement) as well as moderately increased pain in her (somewhat) daily headaches.  

Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God's power are being guarded through faith for a salvation ready to be revealed in the last time.

‭‭1 Peter‬ ‭1:3-5‬ 

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Let me speak to the experience of getting out and about yesterday, because this is something that needs to be reiterated.  I get that there are obvious circumstances that cannot allow for the social distancing (who knew that phrase even existed before two weeks ago) or sequestering of yourself or your family. We were an example of that yesterday.  We HAD to venture out to get an MRI, and we HAD to report to the doctor's office downtown for the reading of the scan and the next steps for Ashley's treatment.  

However (maybe I should capitalize this, because I want to emphasize this)... HOWEVER, these circumstances are much fewer and farther between.  As the care taker of someone who is compromised, I am legit having to ask for forgiveness from some of the anger that develops inside of me because of the negligence of others.  Is this 'self-quarantine' fun? No.  Is it hurting our economy? Yes. Is it helping to flatten the curve? I hope so, we'll know soon enough.  Is this an anxiety-inducing time? Sure, for some.  Is this an opportunity to look at life/priorities differently? Absolutely.  Perhaps these times (and let's be honest it's not really even been that much time where we've been inconvenienced) are an opportunity to simplify things.  To see what's important.  To grow closer to Jesus.  To develop bonds with your family.  To seek opportunities to serve others.  If everyone would do what they are being asked to do (i.e. isolate, sequester, quarantine, etc.) it is highly probable that this situation could resolve itself much faster.  We aren't going to get rid of it, but if we could spread this disease at a slower rate so as not to overwhelm medical infrastructure or annihilate the compromised it is to everyone's benefit.  

The actual doctor's visit was eerie as a whole.  I was on the verge of legit argument with the personnel trying to force me to drop Ash off at the door to review scans and make decisions on her own.  By the grace of God (<-- serious, literal statement), the fourth person I dealt with finally applied some common sense to what was going on and let me accompany her.  Inside of the clinic, there was literally NO ONE except medical personnel and even then, half of them appeared to be heading home.  So crazy!

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Back to the main topic at hand... Since the Temodar isn't doing much of anything, we are temporarily bumping up the steroids and adjusting seizure meds further.  Tumor board will meet on Tuesday to discuss options.  The issue now is that we don't have many.  Surgery is still a no-go presently.  Standard-of-Care Chemo (Temodar) is ineffective.  Radiation isn't really a consideration.  There is one more drug we can use that will essentially try to choke out the blood supply for the tumor (which would effectively prohibit it from growing any further and perhaps starve what's there to enable it to stabilize), but if that drug is ineffective we are likely out of approved options.  There wasn't enough of the tumor removed during surgery a couple of years ago to get us into many trials (although Ash's doctor is verifying this) AND given the current state of the medical world with COVID-19, it is also unlikely that the logistics of some of the trials could be worked out in the very near term.  Not impossible, but we shouldn't be anticipating success here.  Since most of the nation is longing for some sports talk (which is another check up on priorities), here ya go: We're essentially standing at '4th and Long' on our own 45; we've got one official play left with no play clock.  The play is selected, we know what the defense is running... now, can we make a play?

We went in to yesterday with a sense of peace but also with a feel of uncertainty.  Even though we've worked through a lot of scenarios over the past couple of years, we were not as ready for how the day would unfold as we probably thought we should be by now (wow that reads funny, but I think you get the point of what I'm trying to say).  To face our own mortality... is anyone really ready for that?  Understandably, Ashley and I were pretty upset when we loaded back up in the car after that appointment.

Remember your word to your servant, in which you have made me hope. This is my comfort in my affliction, that your promise gives me life.

‭‭Psalms‬ ‭119:49-50‬

On Tuesday, we'll know if the Board agrees with the current course of action.  If so, pending insurance approvals, Ash will start her (every-two-week) infusions of this new (to her) drug.  The side effects aren't terrible with this medication.  There are some risks of bleeding and what-not, but at this point... the risks vs. benefits are essentially moot. :-|

Some points of prayer for our family:

• for Ashley.  Virtually any emotion you've had while reading this post, apply that to Ashley.  Pray for that.  Emotional, physical, spiritual... you name it and it probably needs to be covered in prayer.  For the processing of all that's gone on in the past 36 hours.  For the mitigation of symptoms of increased tumor growth.  For her emotional health, as this is a REALLY heavy hour in this journey.  For her heart to be comforted as she struggles with all of the 'what if's' and forward looking interactions (time with our girls, me, family, etc.).  For her faith to be bolstered and girded up.  There is no doubt in my mind that she is one of the most faithful and resolved people, but to face yesterday and the news it brought, no doubt hit like a gale-force wind.
• for our Girls.  Both of them, individually and collectively.  The oldest is certainly capable of understanding what's going on.  The youngest is essentially as old as our first born was when we started this journey.  She (the youngest) is discovering her own world and doesn't really comprehend a TON of the implications of what's happening.  For their relationships with their mom; that they would have some sweet moments together.  For their relationships with each other, that they would continue to grow together and help one another out.  Pray that God would use this whole process to draw these two girls under His wing.  Pray that in all of this, he would redeem their little souls.  If this whole journey produced nothing else but the opportunity for God to extend grace and mercy to them in the form of salvation, this entire thing (every second of it) is absolutely worth it. 
• for the next few weeks.  As we gear up to start this new medication, that the logistics would work out smoothly.  For the medical restrictions to be loosened so I don't have to fight to sit next to my wife when she's getting transfusions.  For the world as a whole to be intelligent on how they approach COVID-19.  [It's serious and needs to be handled as such.  The faster we can flatten the curve, the faster we can develop treatments, the faster we can develop a vaccine, the better off we are ALL going to be.]  In these next few weeks, that we'd be able to curtail some of the physical symptoms Ashley's dealing with.  And, For sweet times and memories to be made.
• for the future.  In whatever may come our way, in whatever timeline that looks like... that above all else, we'd capitalize on any and every opportunity to preach Jesus.  From the beginning of this journey, this is what we'd prayed for.  

We know this is just a small snipet of God's masterful story that He's weaving together for His Glory, may we be faithful to always point to Him.  He is worthy; the only One that is worthy.

And we have confidence in the Lord about you, that you are doing and will do the things that we command. May the Lord direct your hearts to the love of God and to the steadfastness of Christ.

‭‭2 Thessalonians‬ ‭3:4-5‬

As usual, what set out to be a quick update turned into a novella.  It's likely been a difficult read in terms of both content and quality, but writing this blog post over the course of the day with two girls and a wife on day 6 of abnormal confinement has proven to be a challenge in and of itself.  Thanks for hanging in there.  No doubt there will be more frequent communication in the coming days and weeks, but this should be a good springboard to start from.  Thank you for the encouraging texts, emails, facebook messages, phone calls... Ash and I greatly appreciate them.  No doubt they are the product of God's grace through you.

Photo Credits: http://lovebephotography.com/