Scatterbrained Update...

I pray as I type this that our Andrew's Army troops are well and encouraged with God's unfailing love and grace washing over each of you!  Each of you are more deeply loved than you could ever dare to imagine, so I pray that regardless of where you currently find yourself...  standing on a mountain top with breathtaking views having come on the heels of hard work shlepping up that mountain one step of faith at a time OR in a valley where you feel surrounded by the enemy on every side and some how those enemies never seem to tire (they are always well fed, well rested, and always exercising so their muscles are intimidating)?  In case you wonder where we are, we refuse to set-up camp in the valley because despite our extended stay there (like almost 6 years) it is not our home, but instead the classroom that God uses to refine us.  I guess that's why my most recent prayer has been "God what ever you are trying to teach us, please help us be quick learners and give us some reprieve."  We continue to choose to "not be afraid and believe" because we know the character of God who is the author of our life's story.  This does not mean that our life is any easier, instead I have to tell you the past 3 weeks have been brutal and relentless as Andrew's pain continues to be at an all time high, despite increasing the dose of some of his heavy pain meds (although we might be seeing some improvement, Andrew was able to stay at school for a full day two times this week, so that's a huge praise).  To give you an idea as to what type of pain meds he is on, we have to take him to see his oncologist tomorrow just so they can lay eyes on him and document that they've seen him because his oncologist and pain Dr are getting harassed by the FDA because of all the narcotics they write for Andrew (thanks to the opioid crisis in our country).  Just a quick PSA- we ALL struggle with some sort of sin (if we didn't, then we would be Jesus and that would be a whole other issue) and for some that comes in the form of addiction to pain pills.  If you, or someone you know, is battling this addiction, my heart goes out to you because I know you would give anything to get out from under it and had you known it would be this hard when you took that first pill you would have run the other direction... really fast.  The thing about this addiction that is so frustrating is that it not only negatively effects the person with the addiction and their family, but it negatively effects all the people out there who genuinely need these medications due to SEVERE chronic pain.  Andrew can barely get through the day with ALL of the pain meds he's on, so when there is a hold up on refilling his prescription because the pharmacy can't dispense what they have decided is too much at one time or refill it too soon or David and I have to feel like drug dealers anytime we are trying to proactively refill Andrew's pain meds in preparation for making sure the school has enough on hand, we won't run out while out of town, etc it sucks the life out of you (while scaring the day lights out of you at the mere thought of Andrew missing a dose of his pain meds).  I pray that anyone reading this does not take the sharing of my heart as a personal jab or judgement against you, but instead a plea to do what ever you can to help put an end to this opioid crisis.  I don't believe that vision is possible without calling on the Lord, so let's not leave Him out of this important conversation.

I apologize for getting off on a tangent, so to recap...  this has been the hardest 3 weeks of this journey yet (excluding the first 2 weeks after Andrew's diagnosis on Feb. 22nd) because Andrew has never experienced this level of pain and discouragement.  God has called me to reevaluate what I want more... His blessings (healing my boy) or Him (an intimate relationship with Him...  to know Him better).  It all relates back to leaving my boy on the alter (trusting God with his future whether that mean He chooses to heal him on this side of heaven or not) and taking him off when I get scared because I can only truly experience intimacy with God when my hands are open and willing to say "Thy will be done."  The lyrics from one of our favorite songs best sums up where I strive to let my heart and mind rest...  "your world isn't falling apart it's falling into place, stop holding on and just be held."  There is purpose for our suffering, so instead of clinging, we will be held by the One that holds our future.  Will you please continue to pray us through this lesson and this season?

The kids at Campbell Elementary raised a ton of money for TOKC (Triumph Over Kid Cancer) in honor of Andrew during Pediatric Awareness Month.  The paper dolls in the background are what the kiddos decorated as a symbol of being a part of Andrew's Army.  

This is how Andrew has been watching the Astro's play... reenacting every play!  He is not our sporty kid (which is a blessing in disguise because it would have been ever harder for him to have to give up something he loved because his body couldn't handle it), but the World Series has brought him a whole lot of smiles because its been fun to cheer Altuve (we always root for the little guys ;-) and team on as a family!

I haven't talked about Abby much lately, but she continues to be a sweetheart and pursue excellence at everything she does, whether at school, soccer, taking care of her siblings, etc.  Abby's happy place is on the soccer field and we absolutely love getting to watch her do what she loves.  Her nickname is "goose" because she's my wing girl, always ready to jump in and help where needed and eats up every second of a mommy and Abby date she can get (we try to build this time in weekly).  Will you please pray for her that she would never feel forgotten about and also that she would learn how to extend herself grace when she makes mistakes (we talk a lot about getting "better" not "bitter") or not even make a mistake, but not perform to her fullest potential?  It's hard for me to even imagine how a 10 year old is able to process and navigate this incredibly difficult journey, much less to do it with so much grace, but she does and does it so well (praise be to God and God alone). Thank you for praying for our sweet girl!

Here is Abby expressed in pictures this weekend...

This is the only pic I have of Abby playing soccer this weekend 😂...  in the middle of the pic you can see Abby and the girl she was defending.  Can you tell why we always root for the little guys/girls😉.  She may be tiny, but she is fierce!

 Playing basketball with the big boys at our church's Fall Festival!  This kid only has one speed...  full out fever...  ALWAYS!  These pics were taken before the game got serious.

 Helping Grace play games...

 Helping Grace at Gigi's Playhouse...

Watching David play soccer...

Grace continues to keep us on our toes as always...  On Wednesday at swim lessons she slipped off the step while she was playing, waiting for her turn, and went under water.  The mom of the sweet boy she was taking lessons with had a better view of her than I did and immediately yelled her name, so I ran over, stepped in the pool, and plucked her out.  Grace didn't cough or anything after I pulled her out (although she did cry because naturally she was scared), so we don't think she inhaled any water (proud of her for holding her breath that whole time, as she worked to try to get back on the step), but to say it was mortifying is an understatement.  Grace has developed a cough, so we took her to the ER last night to get a chest x-ray, just to make sure she wasn't developing pneumonia or unhappy lungs from her scary underwater experience.  Praise the Lord everything looked fine.  PRAISE THE LORD for His constant protection and provision for this kid!!!

Fall Festival fun...

Grace loving her time at Gigi's Playhouse!

Last weekend we had our second annual, hugely successful gala for Gigi's Playhouse!  Thank you to all that have supported Gigi's Playhouse, it is truly changing the lives of those with Up's as well as those that serve our kiddos and their families!

Our amazing board!

My hot date...

Some of my favorite people posing for Prom 2017!

Thank you, Andrew's Army, for hanging on through this crazy ride along with us!  Please continue to join us in praying that we will "not be afraid and believe!"  Believe that God can and will find a way to heal our boy!

Pop Quiz...

Thank you for once again joining us on the battlefield in prayer this week...  this week has been a rough one, watching Andrew suffer with extreme tummy pain and discouragement.  When the Dr's said that some people experience a lot of pain after PRRT from tumor death, I sort of dismissed the notion because I couldn't imagine Andrew's tummy pain getting any worse than it already was.  I now  know that it is in deed possible for it to be worse.  Every day this week Andrew would suffer from excruciating pain that not even the heaviest doses of pain meds could touch or they didn't even have a chance to touch it because he would throw up from the intensity of the pain, making us wonder if the pain meds even had a chance to enter his system.  He either went to school late or came home early almost every day from school, but then again I still see it as a miracle that he can even go to school most days anyway.  Tonight, Andrew found himself very discouraged because of the relentless pain that he uttered words that breaks a parents heart, saying "sometimes I wonder if it would be better if I wasn't even born because then I wouldn't have to deal with all this pain and you guys wouldn't have to deal with having a kid with cancer."  Wow... talk about conversations that take you out at your knees.  I'm assuming its natural to feel clumsy when it comes to how to handle such heavy conversations and to be petrified of not handling it well, but the good news is that despite the common saying "there is no manual on how to raise kids," there is a manual on how to talk to your kids about their own mortality, God's character, the schemes of the enemy, our identity, what it looks like to set our minds on things above, where our hope comes from, etc.  The Bible keeps us from feeling like we have to manufacture a good response, we can point the kids to what God says about stuff, the hard part comes when it's time walk out that faith/truth with them (put it into action).  For instance, Andrew also expressed that he feels like God has been quiet or feels far away lately.  I have certainly felt that way before, but not at 8 years old (maybe it's because I didn't even know the Lord at his age, but even when I did come to know the Lord, I can't remember a time when I felt like He was quiet until my adult life, when things got real).  We talked about what the teacher does when the children are taking a test...  she's quiet, so as God is allowing him to walk through this pop quiz, He may seem quiet letting him work through the test.  The test being the battle of believing your feelings (that God is far away and this suffering is too much) or your faith (what he knows is true, but can't feel or see it at the moment).  I feel like this is such a mature pop quiz, one that is meant for a grad school student and my boy is only in 3rd grade.  Clearly, God knowing all things, especially Andrew's heart and spiritual maturity, believes He is ready for such a tough pop quiz, but we would appreciate your prayers as Andrew continues to endure tummy pain (however, it IS better the past two days than it was all week.  Andrew has had terrible pain at night, but for the most part it has been minimal during the day and he hasn't thrown up in two days...  PRAISE THE LORD!) and draw near to the Lord, trusting that He is near to the brokenhearted and crushed in spirit and that His plans are not to harm him, but for a hope and a future.  

Andrew and Abigail often times ask me the exact same questions I have for God during my quiet time with Him, so as I share with them what God is teaching me and what we know to be true from Scripture, we get to model what it looks like to trust and hope in the Lord with an expectant hope, not a desperate hope.  You see, I'm realizing my hope in the Lord has been desperate and full of fear at times... fears that He can, but He probably won't, etc.  However, over the course of the past couple of months, the Lord has challenged me to rewrite my definition of hope... so here is where He has called me to camp out, Mark 5:36 (and, of course, it was one of the verses our pastor discussed at church today...  have I mentioned how much I love our church?)

"Don't be afraid. Just believe."

I am choosing to believe (with expectant anticipation) that God will heal Andrew in whatever way and time He knows is best, so I'm going to stop questioning the how, when, and what if He doesn't, until God says otherwise!  

Random pic of the 3 musketeers yesterday 

My Bible study girls and their momma's served at a nursing home today calling bingo.  It was such a simple act of service, but one that I'm certain mattered to the residents, especially to Leon.  All of the residents were in wheel chairs, but Leon was in a wheelchair because he was missing a leg, paralyzed on one side of his body from what I'm guessing was a stroke because his speech is very labored.  I knew there was something special about Leon, but it wasn't until we were about to leave and I crouched down to look Leon in the eyes and tell him how much I enjoyed getting to know him that I felt the Lord insist that I share the gospel with him (not because he didn't know the Lord, but more because he needed the reminder of how much God loved him).  As I reminded him how much God loved him, he teared up.  When I asked him how I could pray for him, he asked for prayers that he would pray more.  I asked him if he would pray for me.  I told him about Andrew and tears began to stream down his face and he was shaking his head as if to say that he couldn't stand the thought.  I told him about Andrew because I wanted Leon to know that Abigail and I knew a little something about suffering.  Together we recounted what Scripture says about God, I would quote Scripture and then he would quote Scripture (somehow, this conversation was so easy despite the fact that I could hardly understand the few words that Leon was able to get out which can only be explained by God's grace).  Abigail and I prayed over him as he wept (and I joined him of course) and when we were done, I saw Leon smile with a smile that melted my heart and I looked behind me to see my precious Bible study girls praying with us.  All I can say is that it was an encounter that I pray blessed Leon, but I think may have been more for me than him.  My time with Leon was a great reminder of 2 Corinthians 1:3-6 and served as pre-game for the conversation I would have with Andrew a few hours later. God is SO good!

Someone took a picture of our time with Leon

Thanks for sticking with me through this long post.  Many of you have asked questions as to how things are going, so I wanted to be honest about where we are :-)

Please continue to pray for Andrew like he is your own!  THANK YOU!!! (((hugs)))

Stupid Tummy Pain

We could use prayer for Andrew’s pain... his pain is at an all time high this week. The pain is so bad that he throws up from it. Could this be what the Dr’s mentioned... increased pain from the tumors dying?!?! We can only hope and pray that’s the case! Please join us in praying his pain is a result of PRRT working, it passes quickly, and for peace in the process. This is just a glimps of what cancer looks like first thing in the morning and at night (or even the middle of the night)...

I’ve given up trying to make A+B=C because A+B=but God in our crazy world (I guess I’m a slow learner, since we tend to learn this lesson repeatedly in intense ways). God has been very clear this week as to what He is calling me to do; I need to trust God enough to lay my boy on the alter (just like Abraham was called to sacrifice Isaac) AND LEAVE HIM THERE!  I feel like I’ve surrendered Andrew to the Lord repeatedly, but somehow in my fear and desire to care for my boy and make sense of this scary mess, I’ve realized I keep taking him back. Andrew (Grace and Abby) are His, so I’m choosing to surrender him and my will to our good, good Father who is worthy of our hope, trust, and praise. Releasing the white knuckle grip I have on Andrew is mortifying, but full of freedom as I watch the color return to my hands and the calm that stills my heart.

Your prayers are our life line, please keep them coming! We 💚you! 

We Made It...

We made it through our first round of PRRT and the 6 day quarantine!  Quick recap...  this is a treatment, not yet FDA approved, called Peptide Receptor Radionuclide Therapy (PRRT) that is by far the best treatment available for Neuroendocrine Tumor cancer to date (assuming you have the necessary receptors, which praise the Lord Andrew does).  Texas has a law called The Right to Try Law, which allows patients to try therapies not yet approved by FDA if they have failed other therapies (which Andrew has, since his surgical procedure proved he is inoperable, he failed chemo therapy treatment, and we didn't see a robust response from the other treatment he tried... it may have needed more time to have any impact, but after much prayer we didn't feel like we had that time), as long as you can afford to pay cash for the treatments.  There are other locations across the country that have a study/protocol that patients can enroll in to get PRRT treatment, but to date there are not any study sites that can enroll a child (we also called some international sites that offer PRRT and they too said they would not be able to treat a child), therefore, Excel Diagnostics is literally our only hope for Andrew to receive this treatment.  We feel beyond blessed and grateful that they agreed to treat Andrew because they had to get special approval on a compassionate use basis (meaning there aren't any other options, so it's in some ways a last ditch effort), the facility is only 30 minutes from our home, and our one in a trillion community/friends have raised the exact funds needed to pay for this expensive treatment (they raised the exact amount needed without ever knowing what would be needed because we didn't even know until recently exactly how much we would have to come up with up front...  only God could have orchestrated these details!!!).

After Andrew's PRRT treatment, David and Andrew went to his parents house in The Woodlands to stay for 6 days, since he could not be around Grace or Abby.  We were told, and assumed, Andrew would be extremely tired after treatment and sleep most of the time, so we bought and brought all of Andrew's favorite movies, assuming that's what he would be doing most of the time...  not so much, while he WAS very tired and did enjoy watching movies, he was just as interested in playing with toys, his Nintendo Switch, etc.  He also struggled more with not being able to be touched more than we had anticipated either :-(.  However, in typical Andrew fashion he made sure that when David would try to get too close or snuggle him, he would insist that he move back or don't touch him because he was more concerned about his daddy's safety than his own need for touch or closeness.  Also, in typical God-knows-our-needs-when-we-don't-and-provides, He used so many Andrew's Army members to provide for what Andrew would need during these 6 days. There was a family of bears (all different sizes), to represent each member of our family for Andrew to snuggle with when he couldn't touch anyone (he would sleep on his momma bear that had my worn and loved shirt on it), legos, books, video messages, and even a gift bag for him to open each day that was full of all his favorite things (these gifts were so spot on and better than anything I could have thought of), and an encouraging note for each day, etc.  For everyone that blessed Andrew with gifts and cards during these 6 days...  THANK YOU for filling the gap that our brains were to fried to even know existed!!!  You all made a crazy hard situation manageable and taught us how to better prepare for the next 3 rounds of PRRT and quarantine.

Laying on momma bear and snuggling Abby bear since he wasn't able to snuggle us in real life...

Real life snuggles in the flesh!

I wish I could explain what this week was like on this momma's heart, but I wouldn't even know where to begin, except to say that God has stripped down and refined my heart in many ways through this process.  Here are a couple lessons He continues to remind me:

1)  I so badly want A+B=C and it never does in my life!  You see, the Dr's have told us and we have heard from other patients (adults) who have received PRRT that patients can experience intense pain after treatment because the tumors are dying and it's painful.  Immediately upon hearing this, all I could think was "Andrew's pain is already SO crazy high, how in the world could it be any worse, so how would we know if he is having this type of response to the treatment...  because I would love an indicator that the tumors are dying?!" Well, for the the first 5 days or so after treatment Andrew's pain actually seemed to be a lot better (he was still on a boat load of pain meds, but he wasn't complaining about break through pain nearly as much, etc); however, it seemed like since being home the marked improvement in pain was dwindling and it was starting to look more like his normal pain.  I had myself convinced and hopeful that maybe Andrew's sign that the treatment is working is actually an improvement in pain (since his pain was so bad at baseline), so when I see his pain creep up I find myself getting discouraged and allowing doubt to get me down.  As I submit my doubt and fear to the Lord, I'm reminded that a life where A+B=C doesn't require any faith and I shouldn't be surprised when things don't make sense to me because scripture says "My thoughts are nothing like your thoughts, says the Lord.  And my ways are far beyond anything you could imagine."  All that to say, I'm hanging onto the verse in Psalm 112:7 "They will have no fear of bad news; their hearts are steadfast, trusting in the Lord."

Another hug from God on Monday at Abby's soccer practice!

2)  When you are tempted to doubt or fear (especially at night when everyone else is sleeping) the best remedy for me is to have worship music playing around the clock because somehow it is virtually impossible to worship and worry at the same time.

3)  The kids Bible memory verse for this week (we memorize and discuss a new bible verse each week on our way to school in the mornings) happened to be Romans 12:15 "Rejoice with those that rejoice and weep with those that weep."  I was again reminded as to how well y'all live out this verse, in addition to Galatians 6:2, "Bear one another's burden's, and so fulfill the law of Christ." Living out these one another commands in the Bible require you to get close enough to people that you are willing join them in messy circumstances.  Our life is so messy and we often times feel clumsy as we navigate through it, but y'all are unwavering...  willing to do that one thing (or I should say many things) that is on your heart to minister to us and it's always a blessing in ways we could not have imagined.  I would like to think I would be the kind of friend and support that y'all are (constantly willing to inconvenience yourself to serve us in various ways, even if you aren't sure that it's the "right" thing... you do it anyway), but I can't say that I would do it anywhere near as good as you.  Thank you for leaning into our mess and teaching me what it means to live out these scripture verses.  

Andrew's precious PE teachers posted this pic on Andrew's first day back at school with the sweetest caption.  It made my heart smile and my eyes fill with tears to know that others are joining us in the excitement of being reunited with this sweet and crazy brave boy!

4)  I know many of your stories and I have to say that it is truly my honor to pray you through the journey God has you on.  It is a gift to know how to specifically be praying for others because it draws me closer to the throne and helps us keep our eyes off of ourselves and the fiery furnace we live in.  Please don't ever hesitate to text, call, or message me with a prayer request because your request and needs matter to me and even more important, they matter to God.

Andrew's scan, where we will find out of PRRT is doing it's job, will be on Nov. 27th.  As long as the scan shows that his disease is either stable or shrunken (verses progressed), we will continue with round two scheduled for Nov. 28th (we decided to wait until after Thanksgiving and his birthday on the 26th, in an effort to make sure he isn't radioactive and therefore quarantined during these holidays).  Will you please pray his scan reveals more shrinkage than the Dr's have ever seen or could fathom because we serve a God that is able!  THANK YOU!!!

#butGod  #hopeon  #He is able  #fightlikeaRoss