**Disclaimer: I'm an engineer. I'm not a writer. I did not major in English. I prefer a mix of stream of consciousness and storytelling as opposed to a formal MLA style paper. If that really bothers you, I'm sorry and you will struggle through my posts.**
Originally, I thought this would be the best medium to distribute information about the journey we are on. I was wrong. Even though it seems the sporadic updates I've gotten today have felt fewer and farther between than I would have liked, it all really came at a speed that was too fast to distribute through this blog. So, I imagine going forward this may be used as a milestone platform. There will be honest, blunt communication of what's going on. There will also be some behind-the-scenes analysis of everything. I can't promise these will be short posts, but I can promise they'll be real and they'll be raw.
So, let's start with today. October 24, 2017. A day that will forever be etched into my memory. Unfortunately, in some respects, it will be one that I will never forget. Let's get started...
Long story-short, in June, Ashley, being pregnant with our second daughter (Diana), temporarily lost the right half of her vision in her right eye. (I don't know if it's right or wrong, but there were a LOT of commas in that previous sentence) After a short stent in the hospital (and a CT and MRI) it was determined that there was definitely something going on in her head. Fast forward a month (and several MRIs w/o contrast) and we delivered Diana early to expedite the diagnosis for Ashley.
The next step was to run an MRI with contrast. It revealed the same approximate images as the MRIs from weeks prior which led us the doctors (as there were MULTIPLE looking over our scans) to believe this was a low grade glioma. A brain tumor. Cancer. Not what we expected to hear in our thirties, but should we have been surprised? More about that in a minute.
So we are facing cancer. What to do?
Well, first off, we cried. Let's be honest here, it feels unmanly to claim that my first response was to cry especially in front of people; but I did, and I blame Ashley for that... not because she had a tumor, but because she has, over time, worn off enough of my rough edges to make me actually respond like a normal person to tough situations; rather than be emotionless and without external showmanship. This is my wife we're talking about. My best friend, my bride, my love. She's sick and I can't fix it. Not a fun conversation. Again, more on this in a minute.
Next, we turned to Jesus, the founder and perfecter of our faith (Hebrews 12:2). He would be the only one who could enable us to run this race set before us.
You know, it's a funny thing... about a year ago Ashley and I were having some pretty serious conversations after our small group one Sunday and we prayed specifically that God would give us a platform to make His name known; that he would enable us to garner the attention of a bigger group of people than we currently had and in doing so we would have the opportunity to proclaim Jesus' name. Now, if you had told me a year ago that I'd be sitting in a semi-uncomfortable chair in a Neuro-ICU room at UAB writing a blog at 12am after quite possibly one of the toughest days I've ever faced, and it was the answer to that prayer... I, honestly, would have doubts about actually praying that prayer. However, the more I live this story, the more I see one thing clearly... the Lord heard our prayer and faithfully provided. He has, for His reasons, set us on this journey. He is sovereign, and as hard as it may be, He truly is providing an opportunity to make His name known.
Anyways, that's quite a digression. We look to Jesus for strength, for comfort, for peace. I have absolutely no idea how we would be handling any of this process without Christ.
Through a series of doors closing (surgeon unavailability) and opening (finding another neurosurgeon and having an fMRI), God made way for an inoperable brain tumor (as it was situated in a very precarious spot) to be considered for surgery. The next hurdle was to schedule it at 3+ months postpartum as there needed to be sufficient time between the delivery and surgery to reduce the chance of some blood/clotting issues. Cue 10/24/2017.
Today (well, now, officially yesterday) was one for the books. [If you actually show me what book that is written in, I'll take it and toss it in a bonfire somewhere] The day started with us arriving at UAB around 5:15am and getting checked in for surgery. This surgery was certainly unique. We'd never thought we'd be at a point where we'd go through an awake craniotomy. Before you go Googling (please don't Google that), I'll just tell you it involves the opening of the head and the patient being awake during a mapping and resection (removal) process. It was our way of getting rid of 66%+ of the tumor so that we could chemo/radiate the remainder and move forward from this moment proclaiming how Jesus carried us through a monumental surgery/illness and proclaiming His name all the way to a church near you. Everything was going according to plan, 5:30am official check in,
7:00am wheelback make that 10:20am (3:20 delay) wheelback to the OR, a successful, 'without complication' prep for surgery which included getting Ash affixed to a table, strapped in and situated to be awakened for the mapping/resection. Every 2-3 hours I got a call from the OR with a semi-affirming report. At this rate, it appeared the initial 9 hour time frame for surgery was holding.
In the words of Lee Corso, 'Not so fast, my friends...' I received a call around 4:15ish to have a seat in the consultation box in the waiting area. My initial thoughts were, 'this isn't good, we still have 3 hours until the surgery is supposed to be finished'. My second thought was of a conversation that Ashley and I had last night (10/23/2017). Among other things in this conversation, we discussed the possible deficits that Ashley would have as part of the resection (including but not limited to the inability to communicate [at least in the short term]). Ashley's words to me were, "When I can't proclaim the Gospel and can't preach Jesus for myself; it will all fall to you. Take up that mantle and run with it. Boldly proclaim Jesus for me." ...Let's just pause here and take a minute to reflect on Ashley's heart and how, if you know her, this is exactly who she is. There is not a lot else (to some sadness on my part) that I remember about that conversation, but this keeps coming to mind.
Here's what the conversation consisted of between our doctor and me:
[A bulleted list will help me stay on point here... see what I did there: bulleted list, point...]
- Ashley had seizures basically from the start of the mapping process
- These seizures were nearly unmanageable and took quite an effort to settle her down
- After the first mapping attempt, a biopsy was taken to run in house to give a high level idea that he was in the right area and that the tissue was indeed tumor related
- The second attempt also ended shortly after it began with more seizures
- The initial pathology showed signs that the severity of the tumor was of a higher grade than we were expecting (which coincided with the seizures, etc.)
- The decision was made for Ashley's safety to end the procedure/surgery at that time without resecting any of the tumor (as it could not be mapped to know what was being removed)
- Ashley would be moved to post-op and the Neuro-ICU
- We've basically kicked a hornet's nest by poking, prodding and shocking the tumor. It (starting to feel like I should give a name to the tumor) will most likely respond with a fury in the form of swelling and additional seizure activity.
So from here, I had the privilege of relaying this information to Ashley's mom, sister and aunt. I gained a great amount of respect at that moment for people who have to routinely deliver crushing news to people. It is not easy and it is not fun.
They got Ashley settled in to the ICU room and after a few rounds of visitors to the back; here we sit (technically, Ashley is laying down and I'm semi-reclined in a vinyl chair). The long and short of what's going on now is that we are attempting to stabilize Ashley, control the swelling, continue to ward off infection, and make it through the next 48 hours. The doctors (along with my support) agreed that because of the seizing activity still occurring and the agitation that comes along with being intubated it is in Ashley's best interest to be put into a chemically stable state of sedation to allow her brain to reset and hopefully relieve some of the swelling pressure. If you want to read 'chemically stable state' as being put into a medically induced coma, you can; because, well, frankly, that's exactly what it is. Ashley is so tough and being the good redhead that she is has proven herself to be of high tolerance to the medications used for sedation. She's on a pretty good drip and has settled down for the night. That's basically where we're at right now. We are playing a waiting game.
It's funny how the phrase that's coming to mind right now is, "So, Brook Hills..." (all afforded credit goes to Matt Mason for making that phrase stick)
So, Blog Readers...
Here are some take aways and some things I really want you to hear from me:
- God is so good to us. It is ridiculous the amount of grace and mercy he showers and shows us.
- Ashley and I fully trust that God is sovereign over all things.
- Whatever happened today, happens tonight, will happen in the days to come will absolutely fall under that sovereignty and will not be of a surprise to the Lord.
- Though my heart and flesh may fail at times, God is the strength of my heart and my portion forever. (Ps. 73:26)
- Ashley and I had very pointed conversations about what would happen if a scenario like this were to occur. We very much did not expect this to happen, but we've tended to play the odds in every situation thus far on this journey. All of that to say, we unexpectedly expected this scenario and the bottom-line, after-the-dust settles message is: Jesus is the sole reason we are even able to take a breath and since we are only given so many of those on this side of glory; every one ought to point back to the Giver of life.
- [See the above point and read this line, really let it soak in] : "For to me to live is Christ, and to die is gain" Phil 1:21
- The prayers, support, encouragement, food, errands and outreach that we've experienced in this trial have, quite frankly, been SO overwhelmingly incredible. I cannot express to you how thankful I am that you would rally in support of my wife in this way.
- I may not communicate with everyone directly (though I am trying); please know that I see your messages and read your comments and they hit home every, single, time.
- My desire is that if you read this or have an interest in this journey that you will ultimately fall into the arms of our Savior.
Key areas of prayer in the coming days:
- No Seizures
- No Swelling
- No Infection
- Our girls would continue to be troopers and patient and understanding in a season that they don't fully grasp.
- For Ashley to make a full recovery from this surgical setback.
- For our neurosurgeon who may or may not be struggling with decisions leading up to this point [This is a big one for me] I need him to know that he made the best decisions possible with the available information and that he knows the comfort of Jesus presiding over all things. A praise that, because of him and his quick decision making to stop the surgery when he did and not pridefully want to press on, may have saved Ashley's life in doing so.
- For my mother in law, my sister in law and our family to understand (as best as possible) what's going on and how we can best process everything.
- That the Lord would continue to impress upon people's hearts how good He is and that we owe everything to Him, up to and including our very lives.
Congrats! If you've made it through this entry, you are a trooper.
Seriously, thank you for reading. I can't promise I'll update this every day or even to this magnitude, but I will strive to keep you up to date as best I can.