Anniversary

Last week was our 8th Anniversary.  There's not too much to show or tell - this year's anniversary dinner was a pretty low-key event for obvious reasons.  In spite of everything, we had a lot to celebrate.

A simple meal from EatZi's with some of Ash's favorites - green beans and shrimp

Since her metastatic diagnosis, Ashleigh and I have often discussed that the last year has been pretty amazing.  Despite being a year marked by cancer treatments, most treatments had relatively few side-effects and up until two months ago we have predominantly been able to live our lives unaffected by cancer.  We have watched David grow through his first year into a speedy crawler with a toothy grin and infectious laugh.  Noah has blossomed into a wonderfully verbal and happy (if stereotypically contrary) two-year-old.  We have been loved and supported by family, our Sunday School, friends, neighbors, and strangers alike in ways we would have never dreamed.  We have reveled in simple joys as God has been teaching us to never take for granted a new sunrise.  And our love has grown deeper and more mature as we have lived out "for better or worse" in real life.

We had a great conversation over dinner about an a capella competition that doesn't exist - possibly inspired by recently watching Pitch Perfect 2 together.  Still, it was the most interactive conversation we had in a few days, and I relished it.  We discussed whether Redline was going to win (I assured her they would).  Maybe it's not the healthiest thing to play along with delusions, but I wouldn't have tried to jolt her back to reality (and the associated confusion and uncertainty) for anything in the world.

Something Ash got in her head somewhere along the way was that she wanted to wash each others' feet as part of our wedding ceremony.  For those not familiar - this is based in a story in John 13 where Jesus washes his disciples' feet as a way to show how we should love and serve one another.  The wedding planner initially balked at the logistics - removing footwear is not something attempted in a typical Baptist wedding!  Still, you won't be surprised to learn Ash held firm to her vision and I (the dutiful husband-to-be) tried to support her.  I think the result was great; we weren't front-and-center while this occurred in the ceremony, we did it off to the side while an A cappella group performed "Take my Life and Let it Be".  We re-watched our wedding video on our anniversary and I'm still really happy with how that turned out - shout-out to Jason, Shane, David, Nikki, Matt, and Rachel, our awesome GT A cappella buddies!

7/7/07 - We each wound up with one foot cleaner than the other

Each anniversary since then, we have repeated the symbolic act of washing each others' feet.  It served as a yearly reminder to us that our goal in marriage was to serve one another, to put the other's needs before our own.  This year the foot washing was a bit less symbolic than in previous years.  I helped Ashleigh walk back to bed after dinner in the picture above and she stepped in some spilled dinner along the way.  A perfect segue into our tradition!

The reason I tell the story is what happened next: I washed her feet and put away the basin, fully intending to let her end of the tradition slide this year since she wasn't really in a physical or mental state to reciprocate.  In a rare moment of lucidity (and, after 8 years, a not-so-rare moment of Ashleigh letting me know in no uncertain terms that I was being an idiot), she demanded I bring back the basin. :-)  Despite the pain and limited range of motion for which I would have gladly given her a pass, she insisted that tradition be followed - she wanted to communicate to me that she still, even now, wants to put my needs in front of her own and serve me, insofar as she's able.  That, ladies and gentlemen, is a love that deserves at least 62 more anniversaries to celebrate adequately.

Amazing People and Exciting Plans

In my last rather somber post I mentioned that despite a downturn in Ash's health, there are still many reasons we have to continue to be excited for the future.  Many of our big "praises" currently are closely tied to some amazing individuals who have been going above-and-beyond to honor Ashleigh.  The ball is rolling on some exciting plans that I want to share with you.

Just about all my posts reference that I'm not a big Facebook guy.  Still, if you are someone who makes regular use of that tool I might ask you to consider re-posting, or sharing, or whatever it is the kids are doing these days.  There are a few initiatives in the works to honor Ash that are in process, and I want people to be aware of them.

The first is an awesome T-shirt Fundraiser spearheaded by the amazing super-mom Andrea over at the blog Momfessionals.  Ever since the passing of the tutu Andrea has been a real friend of our family and has used her status and influence in the blog-world to help us out at every turn.  She is a great example of how to use whatever sphere of influence you have (whether that's cancer or just being an "average" mom) to effectively express faith in God.  I wanted to get this in front of you today, dear reader, since the deadline appears to be wrapping up soon.  Thank you, Andrea!

The famous tutu.  I should really post some pictures of Ashleigh wearing this out on a date with me - she got so many stares of open avarice from teenage girls who think she looks like a princess (and I agree)!

Along similar lines, there is a whole committee of folks actively working to make Ashleigh's dream of a gala event a reality.  The progress these folks are making is truly phenomenal and a fulfillment of Ashleigh's vision.  She couldn't plan it better herself - and that's saying something!  We have a date: August 13, 7-10 PM at the home of a truly gracious lady in Preston Hollow.

The Gala Location!

I'll share more details here as they come available, but for now save that date!  Several influential friends in the cancer community that Ashleigh has made along the way have been instrumental in helping make this happen, along with two different fantastic event planners and a group of Ashleigh's close personal friends.  The folks of Ally's Wish are helping to make this happen, and many many people and organizations are donating to the effort.  It's shaping up to be exactly the swanky shindig that Ashleigh dreams it will be (though I think everyone involved would shy away from wanting it called a 'shindig').

Tickets will be $100, and I'll publish the Eventbrite registration page as soon as it's up.  This is significantly less than the cost for a 'typical' society-event; Ashleigh wants it to be accessible for our friends to attend as a thank-you for all that they have done for us over the last year.

All of these efforts feed in to one goal that Ashleigh has: she wants to raise $100,000 for research into her specific type of disease.  Triple-negative, inflammatory, metastatic: any of those adjectives in isolation are bad news in the cancer world.  They are all indicators of aggressive, deadly disease and none of them receive very much attention from funding sources.  Ashleigh's post on Pinktober covers some of the issues at play - suffice it to say (in an admittedly sweeping generalization) that the rarer, more aggressive types of cancer are generally under-funded but are actually what kills people.

On top of directly funding primary research, Ashleigh wants her legacy to be funding research for many years to come.  So the funds we raise will go into an endowment that will pay out each year to directly fund research projects that would otherwise be overlooked and unfunded.  Our hope is that this will allow our cancer charity of choice, the IBC Network Foundation, to have a consistent source of funding they can count on each year, indefinitely.

To this end, the central page we are tracking all progress towards our goal is here.  The T-shirt funds, gala donations...everything is going to funnel to that central progress bar to track our progress against our $100K goal.  If you won't be able to attend the gala in August, consider donating there, or send a check directly to the IBC Network in Ashleigh's honor.

I can't say thank-you enough to all the individuals who are making strides like these to honor Ashleigh...though you will likely grow tired of hearing me try over the next month.

Deja Vu All Over Again

Hi Folks.  Many apologies once again for the long delay between posts.  We wanted to give you all time to revel in the joy of Ashleigh's previous post, and give ourselves and the doctors some time to investigate and process recent developments.  It's unfortunate that when you realize I (Brad) am the one writing the post, you can pretty much assume it's not going to be great news... 

Current Status

We were admitted to the hospital a little over a week ago because Ashleigh had a persistent fever she just couldn't seem to shake.  The severity varied greatly - generally it would rise through the day (sometimes as high as 103, but typically more around 101) then break overnight.  You will recall that fevers are generally bad things if you're on chemo due to a depressed immune system.  However, Ashleigh's immune system (specifically her ANC for the medical folks out there) was actually a bit elevated - either because of the booster shot she gets after chemo, or potentially as a response to an infection.

Over the last week despite the doctor's best efforts (and the involvement of the infectious disease team - think a real-live "House" without the surliness or limp) we haven't been able to pinpoint the cause of the fevers.  Since there seemed to be no infection to blame, the leading theory is that they are a direct symptom of the cancer in her liver.  The good news is they have been predominantly non-existent for at least the last few days.

Just like our last hospital admission about a month ago, what started as an isolated concern (the fever) seemed to rapidly spiral into several other issues.  Over the last week her "functional status" has decreased significantly - we're about back to where we were at the worst point last time with regard to her lucidity (or lack thereof).  She is regularly in pain, and the drugs it takes to manage that have their own deleterious effects as well.  The latest concern has been her platelets.  Healthy platelet counts are generally around 150, and anything below 20 represents a significant risk for bleeding.  I've lost count at this point of the number of platelet transfusions she's had - somewhere around 5 or 6.  Despite that, her counts regularly bottom out in the 6 to 8 range.

So we are facing some serious issues, and doctors unfortunately don't have all the answers.  Still, we have hope in God, who we know does have all the answers. 

Prayers

I would be remiss in this update if I didn't mention a few specific prayer requests:

+ Continued prayers for a miracle - that God would heal Ashleigh completely
+ That Ashleigh's mental state would improve
+ That her pain would be well-managed
+ That her platelet count would stabilize and not require more infusions
+ For wisdom for the doctors to continue to work out treatment options
+ Wisdom for us through difficult choices ahead

We have several things to be thankful for, praise God for, and even be excited about - but I'm going to update you about those in a future post :-) 

Deja Vu

It's ironic that we posted the last update about Ashleigh's miraculous recovery on the night we were admitted back in the hospital - simply because waiting around to be admitted in the emergency room gave us time to do final edits.  I am thankful beyond words for the intervening week between the two hospitalizations - to have Ashleigh at home and 100% "with it" mentally and physically was a real gift.  She and I discussed it, and I think the last hospitalization will end up being a very gracious gift from God, actually because Ash was so close to death.

What I mean is that we have never really feared being dead, simply because we believe that "to be absent from the body is to be present with the Lord" (2 Corinthians).  However, I think we both still feared the actual dying part.  But if dying looks like Ash made it look a month ago, it's really not that scary.  She was out of it, sure, but always in good spirits, slept a lot, and as comfortable as we could make her.  What I'm saying is that her last brush with death gave us both the confidence that, when the time comes to face it again, we will be able to face it together, unafraid.

So there's a lot about where we're sitting right now that looks very similar to how things looked a month ago.  Last time God heard our prayers and allowed Ash to recover at a neigh-miraculous rate.  We hope He does the same thing this time around.  After a pretty crazy month of highs and lows, there is only one fact that we can continue to rely on, one solid ground where we still find sure footing: God is still in control.

Remember that time I almost died in the hospital....but then DIDN'T?!?

Yeah, I don't totally remember it either so this post will be mostly made up of first-hand eyewitness accounts and some super depressing pictures that will probably make you cry. They made me cry. But then again, everything makes me cry, even with my super-duper happy drugs!

I read over the blog posts Brad wrote while I was in the hospital (way to go Brad! way to stay on top the blog and be totally awesome like that! goooo Brad go!!). Then I spoke with some friends that flew in town to be there to help me (and the boys) while in the hospital.

The two posts immediately preceeding this one were intentionally somewhat vague about how I was ACTUALLY doing at the time. I think the main motivation was that we didn't need 100 people in the waiting room of the hospital - but we DID need 1,000,000 prayers. So Brad tried to deliver accurate reports on my status without actually saying in so many words that the doctors thought I was dying.

If you've been following our story since the chemo days (oh, those good ol' chemo days...), you'd remember that I was one of the really twisted ones that loved getting chemo because I knew that I was being given something that could fight the cancer. So same deal now: I was excited to get the treatment plan (...ANY treatment plan) executed. We spent a lot of time hemming and hawing about what to do first. While we were trying to make a good decision, the cancer was filling up my lungs with fluid and my liver had a 6 cm met on it (I've never, ever heard of something like this before, ESPECIALLY in a week). I feel like I'm running out of ways to say I have the most aggressive breast cancer possible.

Somehow in the time it took to sign paperwork, or whatever else it is you do to get onto a clinical trial (looking back, what were we doing anyways?) - I took a nose dive. A great big nosedive. My body was shutting down. I was no longer coherent. I literally couldn't see straight.

The doctor was very forthright with my family and me - or, as much of me as was actually there. The options she gave us were: A) don't take the chemo and die peacefully at home (5-7 days), or B) take the chemo, my liver potentially fail (there was a high risk my liver wouldn't be able to handle the chemo at that point), and die in the hospital (1-2 days).

The Sunday after I was admitted, folks brought the boys by to see me - and, we thought at the time, perhaps to say goodbye.

We originally didn't share these photos since they look so sad.  But now they are a testament to how amazing my recovery has been - Thank you Jesus!!

 So this is how I saw my options: if I was dying either way, at least the chemo gave me a shot, however small. So I said go big or go home: chemo!

Thankfully when you are in this stage of dying they give you some excellent drugs that make these decisions not as stressful/scary. I was at total and complete peace. And mostly out of it. I feel bad mostly for Brad trying to make those types of decisions with a clear mind. Of course, I'm not sure I would prefer the reverse, either. :-)

Each day after the infusion we waited for the gauntlet to fall. For all my numbers - blood counts, liver function - to start tumbling. Instead, every morning I asked, "has my liver failed?" They kept telling me no. Something was working. Jesus performed a miracle in my body and instead of getting worse, day-by-day things improved. I had doctors with the most shocked looked on their faces - one even actually used the word "miracle". So I'm here. We don't know how long I'm here for, but I'm here right now- and I will take it!

Another visit just before discharge from the hospital - what a difference a week can make!

Continued Improvements

So the last time I posted (which to me doesn't feel that long ago) I left you with a pretty big cliffhanger in the form of a prayer request for an upcoming brain MRI.  We had that MRI on Tuesday and...


*drumroll*


NO BRAIN METS!

Sorry to those of you who assumed the worst due to radio silence.  I wish I had a better excuse, but this is probably what you should expect with me at the wheel instead of Ashleigh.  Thank you for your continued prayers, they are most assuredly working.  Not just for the big praise above, but also in lots of other ways I'll summarize in the next few paragraphs.

The rest of the week has resulted in continued improvements in Ashleigh's alertness, cognizance, energy, and pain level.  We had a catheter installed (inserted? placed? "installed" sounds too engineer-y) on Wednesday to drain some fluid around Ashleigh's right lung.  While there was some increased pain associated with that, it has ultimately resulted in her breathing much easier and getting off of supplemental oxygen entirely.

Her liver function has continued to improve, so it's no longer a concern as of this time.  Her counts are staying pretty steady thanks to booster injections and some platelet infusions.  Best of all, she's up and walking around frequently...really, more like doing laps around the floor to build up her endurance.  If you know Ashleigh you won't be surprised by her insistence to always do "just one more" trip up and down the hall before resting.

With the heavy caveat that we're still taking things one day at a time, the plan right now is to do her second chemo infusion on Monday then get her transferred to an inpatient rehab facility.  She would get lots of physical and occupational therapy there with the goal of continuing to increase her energy and independence to eventually get back home.

There are probably lots of other things a more exhaustive update would touch on, like the difficult tension between trying to plan for the future vs. the significant uncertainties that still exist around Ash's prognosis.  Or, around how the boys are handling this; for the first time, I think Noah is really in tune emotionally with the fact that something is "not right".  Of course as a 2-year-old he is pretty confused and can't understand why momma isn't her usual play-on-the-floor self...but then as a 31-year-old I have a hard time processing it sometimes too, so I can't really fault him.  Anyway, the point is there are still many many things we are praying for, like:

+ That logistics would work out for the plan I mentioned above (insurance and some doctors still have to approve this course of action)
+ For Ash's pain to continue to subside so we can wean her off the IV pump
+ For her to continue to gain strength, independence, and increased mental cognizance
+ For sweet time with family and friends, especially with the boys (we're going to try to take them for a visit tomorrow morning)

In closing, I'll leave you with a few pictures from the last week:

 The Boys visited on Tuesday with my sister (Ash's Brother and Sister-in-Law in the background)

 The great view out of Ashleigh's room

 

First Baptist Dallas's Fellowship Class was kind enough to bring their Tuesday night Bible study to Ash!  She's been a part of this group for almost 5 years now.  We're very thankful for these ladies.

Best friend from college, best friend from high school, and hair gel (Ash wanted a Mohawk).  Ash is super sad to be missing our friend's wedding this weekend, but she was nice enough to come visit Ashleigh on her way to the altar.  Congrats Kris and Dan!

Today a great friend from Florida brought Ashleigh's favorite food from Melbourne, Dakine Diegos.  My sister and her daughter visited, too.

A Good Day

I wanted to share a quick update since so many folks have been so diligent to pray for us over the last 24 hours.  THANK YOU for the prayers and other forms of support sent our way.

Over the last year Ashleigh has posted periodic "Praises + Prayers" updates to the blog that all follow the same format, and I tried to match that format in the post yesterday.  At the risk of breaking tradition without clearing it with Ash first, I'm going to do something slightly different tonight.  I want to share how today God answered specific prayer requests that I posted yesterday.

ANSWERS to Prayers:
+ Ash was a ton more alert today, laughing and visiting with family in the hospital room.  She was even able to walk all the way down the hall to the lobby on her floor and visit for a few moments there as well.  She was much more her usual self, telling stories and making everyone in the room laugh
+ Her pain was much less severe and much more controlled.
+ Her liver function looked about the same - no drastic changes, which is the best news we could hope for over such a short timeframe

Since you guys were so great to help get those crossed off the list today, I have a few more for you:
+ Ashleigh has a brain MRI scheduled for tomorrow morning.  Obviously the prayer request here is that we don't see any evidence of metastasis
+ The doctors are still worried about her pleural space; we have a procedure scheduled for Thursday to get a permanent catheter installed.  I'm tempted to not even post this one yet since Thursday seems like an eternity away, but just in case I don't get a chance to update between now and then you can be praying that goes well.
+ Her blood counts (e.g. white blood cells, platelets, etc.) were pretty low today from the chemo on Saturday, so she got a platelet infusion.  There will be increased risk of infection over the next several days, so pray that her counts stay high and she doesn't get an infection.
+ We're going to try to get the boys there to see her tomorrow morning, in the hopes that she's as awake tomorrow as she was today.  Pray for sweet time together as a family.

We have a talk about our experience with cancer that we've given a few times now to various groups.  One of the points Ashleigh always tries to make during the talk was how she's learned to enjoy each day as it comes.  She would always say something like:

 I woke up today without pain.  I am able to play with my boys, and am here talking to you.  If I die from cancer, those things won't always be true.  So why would I let the fear of what may happen later steal my ability to enjoy what I have today?

 Even in the midst of being in the hospital with all the uncertainty facing us, Ashleigh had many long moments today where we were able to laugh and enjoy the company of family.

Today was a good day.

Praises + Prayers (6/14/15)

Hi Folks.  I wanted to provide an update to all of you faithfully following the blog.  First, do me a quick favor: take a deep breath, and promise not to freak out.  Promise?  Good.  Here we go...

We were admitted to the hospital last Wednesday because Ash was experiencing some pain on her right side.  I won't bore you with too many details or the play-by-play chronology of the last few days, but here is the synopsis:

- Her pleural effusion (cancer in the lining of her lungs) is worse
- She has new liver mets, and indications are they are starting to affect liver function
- Her hips and back are hurting, making it difficult to even get out of bed (likely from bone mets)
- Her right side is hurting (some combination of liver mets, pleural effusion, or other issues)
- She has been pretty "out of it" due to anti-anxiety drugs and pain meds she's been on

We started a new round of chemo last night.  While it is the only option available to us that has a chance of treating her cancer, there is also a high likelihood it could cause liver failure.  So our options were to chance it with the chemo, or go home to hospice now.  Those of you who know Ashleigh and have been following the blog over the last year won't be surprised by her decision: "Go big or go home".

So with that as the background, here is where our heart is:

Praises:
+ That her liver was well enough to receive chemo at all (this was debatable for ~24 hours)
+ That she was well enough to come downstairs to the lobby and see the boys for a while today
+ For awesome doctors and nurses who have supported us over the last few days and last year.  Specifically for our main oncologist, who is a literal God-send to us.  She is the perfect balance between hopeful, supportive, realistic, and always straightforward with us.
+ For an amazing outpouring of support and love from our family and friends.  Help taking care of the boys, help with logistics, with food, and everything else we could possibly need
+ For a wonderful nanny solution for the boys (thanks to those of you who helped look!)
+ For my wife's continued good spirits, good humor, and hope.

Prayers:
+ That the chemo would be very effective at killing cancer
+ That Ashleigh's liver would process the chemo without additional stress
+ For increased times of alertness from Ash
+ For her pain to be well-managed, or preferably non-existent
+ That God would continue to get more glory from her life than from her death...but that either way we would be faithful to proclaim the hope we have that comes from our salvation in Christ.  The certainty of eternity with God, especially in the face of death, is the only reason any of us are functioning at this point.

 Two final points.  First, remember when you promised not to freak out?  Well you promised.  All our immediate needs are being taken care of.  No one needs to take drastic action (e.g. jumping on an airplane to come see us) and for the love of all that is good in the world please don't blow up Ashleigh's phone with texts, no matter how well-intentioned.  She's not in a condition to respond right now.  Please email either of us or call or text me.  My natural inclination is to avoid over-sharing like the plague, but I want to give you an update so you'll know how to pray.  I'm trusting you to not freak out - we aren't.  Which leads to point 2...

Second, whatever the outcome is from here forward, we want to continue to emphasize that God is in control.  Just earlier today our doctor was in here explaining that we really need to temper our hope that the chemo would be effective (she said maybe a 10% chance).  Ashleigh very deliberately and lucidly said "my hope is not in chemo, or in you (looking at the doctor), or in him (looking at me), but in a life well-lived and in eternity with God." Our faith allows us to face this situation head-on, not because of some cultural expectation or some psychological effect, but because of who our faith is in: Jesus.