The Day No One Wanted

Peter did not feel very brave; indeed, he felt he was going to be sick.

But that made no difference to what he had to do.

― C.S. Lewis, The Chronicles of Narnia

There are days that you live through that you'll replay in your mind over and over again. You know, those kinds of days that are monumental, impactful, devastating, wonderful, full of big decisions, or even marked by a big event.  Yesterday, January 17th, 2020, will be one of those days for our family.  Before we get to the meat of what our day looked like yesterday, let's rewind a few months and recap some of what's been going on.  The next section will be fairly lengthy; so, if you don't have time to read the background or just want to skip ahead to our day yesterday scroll down to the section titled, The Day No One Wanted.

Facebook brought up an 11 year memory.  We were but mere kids.

As I started writing in my very first blog post, I'll take a minute to reiterate a handful of points:

• God is Good; The actual definition of the word!
• He is sovereign over (literally) everything
• Jesus' burden is easy; His yoke is light
• In Jesus, we live and move and have our meaning
• Regardless of circumstance, God's Glory will be made manifest

What's Been Going On

Brief Historical Timeline of Events:

June 2017: Ashley's vision went bananas leading to the discovery of something in her head

July 2017: Our second daughter was born a month early so Ashley could get an MRI and determine fully what's going on

October 2017: Ashley had an awake craniotomy in an attempt to remove (what was believed, at that time, to be low grade) a majority of the tumor only to discover it was a GBM; this is what kicked off the blog altogether.  IF you really want more details on this, go back to the first 4-5 posts.

November 2017 - January 2018: Radiation and chemotherapy were in full swing as part of the active treatment phase

February 2018 - February 2019: A year's worth of maintenance chemotherapy to hopefully 'pick up the stragglers' missed during the active phase

March 2019: New MRI baseline scan established, no more chemo, really there was no additional action addressing the tumor at all

March 2019 - June 2019: Uneventful in terms of medical issues.  Though Ashley's energy levels weren't awesome, she was able to handle her own.  She was able to resume driving and maintain a fair amount of independence.  Throughout this period we were on a regular bi-monthly scan cycle just to monitor how things were going.  Given the nature of GBMs, it's not really a matter of if it comes back, but when.  That's easy to say, but hard to digest.  All in all though, this was a much needed season of rest that God provided to our family.  For that, we are extremely thankful.

In the waning months of the summer last year, Ashley started to have an increased frequency of focal seizures in her right foot.  These weren't totally foreign as we'd dealt with them over the course of post-surgical recovery, active and maintenance treatment phases, etc.  The issue we started to run in to was that they were escalating dramatically in both frequency and somewhat in duration.  After coordination with her medical team, we started adjusting her meds and managed to at least curb the severity of these seizures.  

Last October, Ash had a seizure in her right foot that steadily progressed up through her calf and into her quad/hamstring area.  Despite the use of some "In Case of.." medications meant to halt the progression of those seizures, they were still climbing up her body (read as: growing from focal to generalized [which is no bueno]).  We wound up in the ER that night (which is a story in and of itself).  The seizure activity calmed down after a couple of doses of Ativan and a few hours of rest in an ER bay.

Because of all of this, we added another doctor to her team.  The Epileptologist we added is now the point man on the seizure medication with her neuro-onc team providing support.  We've gone through a couple of rounds of adding this/taking away that/changing dosages of existing meds.  I'm learning that there is VERY LITTLE literature (because, you know, I can't not research things) in the medical field when it comes to someone being on three, four, five or six different anti-epileptics.  Despite the expertise of the neurologists and epileptologists, every one is different and you never know what you're going to get when you start mixing all of these drugs together.  I've started to term this scenario as People Petri-Dishes.  Needless to say, Ashley didn't fair well on our first runs of medication adjustment.  There was some toxicity issues as well as ill-fated side effects from those cocktails.

After some conferences with her medical team (See, Thankful Conversations below), we came up with a solution that would help to curb (not eliminate) the frequency of the seizures while not completely incapacitating Ash.  That was the idea anyway.  For the past few months, Ashley's energy level has steadily declined and she still has two-three focal seizures (isolated to her right foot/lower leg) a day (compared to the 15+/day that she was having).  

We are thankful that the frequency of these seizures hasn't continued to rise.  God truly answered through the provision of her doctors' diligence in finding the right medication regimen to manage some of those side effects.  The decline in energy level has been pretty disheartening though.  She's able to put forth about an hour, maybe two, of being involved/present, but after that period she'll require a good couple of hours of sleep/dedicated rest to recover and do it again.  I know this has made for some discouraging moments in our house hold.  Not being able to spend as much time with the girls and me is probably want hits home the most.

Aside from the decline in energy, there has been increased difficulty in memory recall and finding the right words to use.  I've only noticed this over the past couple of months, but still, it's another noticeable change from what was 'normal'.  Even Ashley has noticed (at times) her struggle with finding the right words to use in normal conversation.  If you've talked with her lately, you'll likely have picked up on this as well.  She'll use words that are related to what she's trying to convey but they are usually inverse of what she really means.  It would almost be cute/comical if you didn't think about what could be causing it to happen.

As a side happening that is unrelated to Ashley's cancer, this past week she had a procedure on Wednesday to remove a cyst from the top of her head.  It has been there for years, but recently has started to grow and become uncomfortable.  A few weeks ago it ruptured and after going to her dermatologist, it was decided to remove it.  No one wants an infection and being that it had ruptured only increased the chance of that.  That procedure went smoothly, but has created a month's worth of wound care to manage and a patch of hair to grow back.  Not really a huge deal, but it certainly primed this week for us to be sensitive to medical issues and is one more thing on the plate for the next few weeks.

Anyways, back to the main thread... we've dealt with what feels to be a sense of decline lately.  It's been a tough few months.  I'm not sure if there is one thing to single out as being heavier than anything else, but multiple smaller factors have summed up to create a general atmosphere of burden.  That burdened feeling is what set the stage for us as we geared up for yesterday.  Ashley and I had a couple of conversations this past week leading up to Friday.  Those conversations went like this, "So, how do you feel about Friday?"... *we look at each other*... "yep, me too".  Which brings us to:

The Day No One Wanted

Yesterday started off relatively benign.  We got up, got ready and left out at morning rush hour to make it downtown for her MRI at 8:00.  [Side Note: SO SO thankful for Honey being in town to help with the girls during the procedure on Wednesday and for yesterday; cannot imagine having to have added the girls' drop off to the list]  Everything was fairly typical of a scan day.  MRI and then doc visit.  We went through a routine check in and systems check before the doctor came in.  During some of the cursory physical/neuro-tests, Ash struggled a little more than normal, but not enough to make any of us check up too much.  She's been struggling a bit more with balance since we modified her medications, so I really just associated with that with her struggles on those tests.

Once all of the checks were complete, her doctor came in.  (See, Thankful Conversations, for one of the biggest blessings that God has provided throughout this entire journey)  To start the conversation with the doctor, everything was (again) fairly routine.  We've almost gotten comfortable with these days because it has typically gone: MRI, doc visit, we go in with an unknowing but hopeful feeling, scan is stable, leave with an attitude of thankfulness and saying 'see you in a couple of months' to everyone. We'd almost conditioned ourselves to expect that to be how these days were going to go.

After a few moments of conversation and additional physical/neuro-tests, her doctor brought up Ash's MRI images.  The air of the room changed.  It went from a comfortable (relative), social, 'normal' routine to a stale, tight, unmistakably cold, anticipatory tone.  As her doctor began to explain how there is an area of swelling just to the rear of where the initial tumor is located, we all just sort of sat there with blank expressions on our face.  Upon the initial review, there wasn't a clear indication of what was causing the swelling.  It's very possible that all of this seizure activity has, for lack of a better term, caused irritation and as a result the brain has responded in the form of swelling a little.  It could be that microscopically, the tumor is progressing and causing the swelling and potentially, even, the increased seizure activity.  In any event, her doctor mentioned that we would re-image again in one month to check on things.  

We kept talking and working through scenarios of what the swelling was from, all the while, processing that something is going on.  The air grew heavy.  Though it wasn't a new mass on the other side of her brain, it was still not good that there was swelling.

We kept working through images with the doc while still focusing on the swelling and then we got to an image and her doc checked up a little.  [Keep in mind that she had just gotten the images from the scan (that was done about a half an hour prior to us being in her office).  It hadn't been officially read by the doctor reviewing the radiology.]  When she checked up, she pointed out a small spot.  The news had gone from an, as yet, unexplained swelling to a pit-in-the-stomach spot in a click of the mouse.  

You always hear of the phrase, stunned silence, and in that moment, I experienced it.  That apparent silence felt like an hour and yet it came and went in about 2 seconds of actual time.  

We then started to unfold what that spot likely was.  Tumor progression.  

Keep in mind, at that point during the day, the scans hadn't been officially read yet and tumor board doesn't meet until Tuesday, so there hasn't been a confab of Neurologists / Oncologists to discuss and analyze what's really going on.  These are all cursory looks; not good, but still theoretically open to interpretation at this point.  Things we know for certain; there is an apparent spot that shows up, there is swelling, clinically Ashley is struggling in some areas.  It's not a far stretch to say that something is definitely going on.  Therefore, we are operating under the premise of tumor progression.  Until such time as the tumor board meets on Tuesday, we still don't have a definitive marching orders.

Once we worked through all of the images and different treatment scenarios, our doc visit came to a close.  We left.  We drove home.  We parked in the driveway.  We sat.  We prayed.  We are thankful for God's graciousness.  For His mercy.  For God being in control.  For His solid foundation upon which our hope is placed.  Those five minutes in prayer at the top of our driveway did wonders to temper the blow of the news we had just received.

Later that afternoon, I got a call from the nurse practitioner.  She advised of the doctor's plan to go ahead and start Ash on a small course of steroids.  And so, today marks the start of that...  We'll have a better idea as to what the next steps are once the tumor board meets on Tuesday.  For now, we assume it is tumor progression and prepare for what the next steps are (be it: chemotherapy, radiation, etc.).

Thankful Conversations

I just wanted to a minute to point out some conversations I'm thankful for:

A set of conversations (via phone calls, emails and face-to-face) with Ash's medical team while trying to figure out her medications (of which we are still modifying from time to time to keep finding a better balance) was so appreciated.  They (specifically being her Neuro-Onc and Epileptologist) were so attentive and compassionate.  God has certainly extended a blessing to us in the form of this team. I'm positive there are doctors who will do the things the way they want to do them regardless of the patient's input.  We have not had that experience throughout a majority of this journey.

A second (set of) conversation(s) that I am the most thankful for: those with Ashley's Neuro-Oncologist.  She is absolutely one of the biggest blessings we didn't even know to ask for as we started out on this journey.  From our first meeting with her in her regular office (not the oncology clinic) to yesterday, she is such an encouragement.  She is intelligent, God-fearing, compassionate, helpful and genuinely invested in Ashley and how she's doing.  No matter what the future has in store, Ashley and I will forever be thankful that God provided in such a wonderful way.

Where Do We Go and What's In Store

God is so gracious!  He is merciful!  Whether healthy or ill, God is good.  He provides richly.  Jesus reigns over all and is the only source of life.  These are reminders we use when the path is darkened by our immediate circumstances.  Circumstances may guide our feelings, but faith in Jesus is what lights the path.  Focus on the path, not the circumstances.

We will have a much clearer picture on Tuesday evening of what our next steps are going to be.  Speculating, we will begin a new phase of our journey soon in the form of a new treatment regimen.  It is unlikely that the steroids are the end-game for what we saw on the MRI yesterday.

Regarding our household: The difficulty of the past few months has only been made bearable as we've had to lay it down at the Cross.  Glimmers of light and moments of rest trickle in through unexpected means that God has graciously provided.  He's never left our side in these moments of struggle.  As much as I fail (which is often, just shy of constantly, actually) at keeping my eyes on Jesus to run the race with endurance, I am weary.  The routine of taking care of a household, my family, work and extraneous tasks do well to drain more mental energy than physical.  The only real source of energy/stability has been/is Jesus and being directly invested in to Scripture.  There are plenty of moments when I have been short with my kids, not patient with Ashley, and I've just failed at being a decent human being to those around me... those moments are only redeemed by Jesus.  He is life.  There are no other sources of life.

The future is likely to hold some intense struggles for Ashley and our household.  Those struggles can quickly mushroom into full on suffering.  Through all of this, though, I'm reminded of Paul's words and will use these repeatedly in our household:

...for I know that through your prayers and the help of the Spirit of Jesus Christ this will turn out for my deliverance, as it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death.  For me to live is Christ, and to die is gain.

Philippians 1:19-21

Here are some areas I'd ask you for prayer for my family:

• Peace.  Regardless of what's determined on Tuesday, we still have some issues to address (the spot if it is tumor progression / swelling being the forefront if the spot is not actually tumor progression).  Pray for peace to blanket over Ashley.
• Discussing the future with our girls.  Our oldest was two the first time we went through treatment.  I'm sure she didn't really grasp what was going on at the time, but she's about to turn five and is smarter than I am.  Our youngest, who is 2.5, is coming into her own and will surely understand more than I'm giving her credit for.
• For Ashley.  An all-encompassing plea for her.  For her emotions, her physical strength, her heart, her rest, her energy, her hopes/expectations... for her as a whole.  I know that she is not thrilled with even the thought of having to go through treatment again.  It is SUCH a struggle.  It's the definition of HARD. 
• For schedules: be it treatments, my work, kids' daycare, appointments, etc.  There are so many spinning plates; to ask for logistics to be smooth.
• Wisdom for the medical team and for us.  There are so many parties involved, especially as we expand treatment options, that it'd be easy to just to blindly follow what's laid out in front of us.  Pray for clear, thought through courses of action that are both effective and with as minimum of collateral damage as possible.
• Patience.  Both for us and with us.  No doubt, this is one of my weakest areas.  When it comes to Get it Done mode, I'm quick to drop my compassion and patience in favor of plan execution to make sure we get things done.  This is not an area I can afford to be slack in.  Pray that God would increase this fruit in my heart.  Also, as  the demands for treatment increase, our response time and flexibility with communications/schedules decrease.  I am one of the worst at responding to texts/messenger/emails (I have plenty of references if you doubt me), but I promise I will do my best to get back with you.  Ashley will, no doubt, be moving slower and so will I.
• Joy.  These moments of struggle/suffering have a tendency to cloud Joy.  They have a weird way of masking it so that it seems harder to find.  Please pray that joy would be made manifest in our heart.  That whatever trial is put in front of us, would be faced with a joy that is only given by God.  
• Opportunities.  One of the main reasons we are going through this journey is to make much of God.  To expand the Glory of His name.  He is sovereign over everything and the sustainer of all things.  Suffering produces a steadfast faith and it is this faith that makes much of opportunities that God puts in front of us.  Pray we would be bold and faithful to take advantage of those opportunities.

If you've stuck with this whole post, go reward yourself with some coffee or ice cream (or both)!  Thank you for sharing your time with us.  Thank you for praying for us.  Thank you for encouraging us.  Thank you for being you.

*note: I've proof read this post like 6 times, but there is likely something I have botched... please forgive me... it's been a while since I've written one of these.*