All kinds of updates

Like a riveting movie, the suspense of the Ross Family shenanigans mounts...

There are way too many details to capture in one blog post, so here are the highlights (for anyone not on Facebook, I apologize, these updates are long overdue and I'm so sorry)...

-Andrew continued his "wingman" duties for Triumph Over Kids Cancer Foundation at the Big Easy Fundraiser.  We continue to be so grateful for those who stand in the gap for children with pediatric cancer.  Thomas Morstead, the punter for the Saints, and Andy Sacks, an Academy Award winning director, hosted the hugely successful (and super fun) fundraiser.  Check out Andrew's speech....  SO PROUD OF THIS GUY!!!

-Andrew turned 9 years old on Nov. 26th.  We celebrated his birthday in true Harry Potter fashion with the cousins a few days before his actual birthday, since he was going to spend his actual birthday in Dallas at one of Abby's soccer tournaments.  While that might sound sort of unfair or a buzzkill in many ways, if you knew the amazing girls and families that make up Abby's soccer team, you would know that he couldn't have been surrounded by more love.  Abby's team surprised Andrew with a birthday cake and gifts.  We have only been a part of this soccer team for one season, which is hard to believe it's been such a short time because they truly feel like family (added bonus.... the girls on the team are crazy talented ;-).

Birthday fun with the cousins!

Celebrating with Abby's soccer team!

Much bonding over being brothers of sisters playing a lot of soccer.  Love the friendship these two have forged!

Jaz, one of Abby's sweet teammates!

Birthday morning in the hotel room!

-The day after Andrew's birthday he went in for a day of scans in preparation for his second round of PRRT.  PRAISE THE LORD the scans showed the tumors are stable.  Remember our huge prayer was that there wouldn't be any progression (because then we wouldn't have been able to continue treatment which would have been devastating), so stability is certainly praiseworthy news.  The next day Andrew received his second round of PRRT and went to stay at my in-laws in The Woodlands since he can't be around Grace and Abby for 6 days after treatment and he is suppose to stay a meter away from us during that time too.  It is never easy being apart, however, by God's grace this time was easier than the last time, for a couple of reasons.  My mother in love came to stay with the girls and I while David and Andrew were gone, which allowed me to pour into Abby in ways she really needs (especially during that time) without having to keep up with meals, laundry, dishes, and taking care of Grace, which was much of our focus during the first round of PRRT.  Also, we did a good job of staying super busy, which is also a great distraction.  The time went faster and more smoothly for Andrew and David too since they knew what to expect, the generous gifts Andrew got for his birthday kept him busy and the highlight and new tradition of PRRT time, the boys went camping.  Andrew had a blast getting to do a lot of things that would make his mommy way too nervous, so it's best done during daddy day care time.... things like playing with matches, an axe throwing competition (trying to make it stick in a tree), etc. 

Andrew becoming a super hero... becoming radioactive!

He totally rocked his 5 hour infusion! 

Why not camp while radioactive?!?!...  brilliant idea that David had!

-This time around, the aftermath of PRRT has been different, in that the first week after treatment he had some very intense pain and throwing up (one morning he said it was the worse pain he's ever had); however, the past 5ish days he hasn't had any breakthrough pain... at all (that's not normal), so we are overflowing with gratitude about that and praying the relief in pain is not temporary and lasts more than a couple days like last round. Andrew had to get the terrible awful shot in his butt on Monday (he will have to do this very painful shot every month for the rest of his life... unless God says otherwise) and he was so brave.  I also got to watch him be the Andrew I know and adore so much as he encouraged other kids at the infusion center as he waited (forever) to get his shot.  This little boy in particular Andrew showed him what a great friend looks like as he played games with him, reminded him that he is brave and courageous and has a God that loves him.

-Grace took the COGAT test this past week, which still blows our minds that she was able to take a test 3 hours a day for 4 days straight (she will have to take this test in Kinder, so I guess it was good practice).  Apparently, I agreed to it in her ARD meeting... you know the meeting that took place while Andrew was have an endoscopy/biopsy.  They took Andrew back, I rushed to Grace's meeting and rushed back to get there before he woke up.  Clearly, my mind was elsewhere during that quick ARD meeting, but I'm grateful that Grace rocked the test and was so proud of herself for being such a big girl and "taking a test just like Bubba and Sissy," verses it causing her to hate all things school.  Some other funny Graceisms...  she LOVES Santa, but wants to get no where near him.  She wakes up before us most every morning and meets us in the hallway fully dressed, shoes and everything.  She has got skills when it comes to putting an outfit together that matches (and she doesn't just take the shirt and bottoms at the top of the pile), in fact she does better than David in that department.  Her favorite sayings are "oh my word."  If she dresses up as someone or something, she loves to take off the costume and say "it's me," as if she really had us fooled.  She says "thank you majesty" anytime she thanks us for something.  She recently said in her silly voice "don't be a chuckle nuts" (cue the entire family fall out laughing).  Moral of the story is, there is never a dull moment with this kid around and seeing life through her eyes heightens any experience by a million.

See Grace and I in the right hand corner of the pic?  That is as close to Santa as she would get!

While David and Andrew were away, Grace had a cardiology appointment...  thumbs up for rocking her echo!

And a thumbs up for a great report!  Thank you Jesus!

We found a petting zoo at a Christmas event in Rosenberg.  Grace made Abby touch all the animals she was scared of touching, but she agreed that she would touch this goat with Abby so I could take a picture.   

It's officially Christmas time!  Grace is giving the dancing snowmen a good daily workout!

"It's me, Gracie!"  In case you thought that was an elf next to Santa!

She should really be her own emoji!

-Abby continues to be my "goose".  She's my wing girl.  I love hanging out with her because she is so sweet, funny, helpful, wise, and thoughtful.  She continues to LOVE soccer (her team finished the season undefeated), just started her basketball season, has some pretty amazing friends, loves school, and is all around a great kid with a huge heart.

Abby in her happy place... lovin' on kiddos with an extra chromosome!

Abby went to school late the morning Andrew had PRRT because she wanted to spend time with him before they had to be separated for 6 days.  He woke up in awful tummy pain, so she just snuggled him through it.

-How about this for the finale...  you all know that our normal over the past 6 years is best explained by the term varying degrees of crazy, well Tuesday's middle of the night shenanigans was one for the record book.  It is a contender for the top two or three scariest events of my life, in fact it may even be #1.  At about 1 am, only about an hour after we went to bed, David jumped out of bed and laid on the floor clutching his legs with a tone of voice that I have never heard from him before.  I could tell it was a pain like nothing else he has experienced (and you know he has had all sorts of injuries from tearing his ACL, compartment syndrome, broken hand, etc from playing soccer, to other injuries that come from flipping off of walls, jumping onto mailboxes, etc).  I tried to help him massage the pain, and it subsided, until a couple seconds later when he said "oh no! I can feel it coming back"... he was in agony again and that same sequence happened again.  He got up and limped as quickly as possibly to the bathroom because he said he felt like he was going to throw up from the pain.  He was only in the bathroom for a few seconds then I heard noises (banging on the wall) that I knew was him falling.  I ran into the bathroom to find him on the floor looking pale, sweaty, very disoriented, and sort of shaky.  I helped him up and said "lets get dressed I'm going to take you to the hospital just to be safe"...  at first he said no he was fine, but I convinced him to get dressed just in case we changed our minds.  He agreed and went into the closet where he once again passed out.  He didn't lose consciousness, but was again very disoriented and couldn't get up despite multiple attempts.  I helped him up again and called 911 because I really felt like maybe he was having a stroke or something because his speech seemed a little slurred too.  Plus, I couldn't leave the kids at home to take him to the hospital immediately.  My parents arrived at the same time the ambulance did, so we went to the ER.  After lab work, a CT, and ultrasound, they couldn't find the cause except to say that his GFR (the way his kidneys were working) was a bit compromised, so they said he could be dehydrated which perpetuated a severe muscle spasm in his hip/leg and the passing out could have been caused by the pain.  All I could think of during that awful experience is that I need my teammate to be ok.  Our life is so hard that I can't imagine not having my teammate to lead us through the wilderness.  Of course, God is my ultimate provider, sustainer, and rock, but I'm certain that He very purposefully gave me David as an earthly world class teammate knowing how desperately we would need a solid team that has our eyes fixed on Him.  We are so grateful that David feels back to his normal self, so much so that he played soccer tonight.  We are praying we never ever have to experience anything like that again.  If nothing else, it made me love and appreciate my man even more (if that's even possible).  

***GIANT HUG FROM GOD ALERT-  After a practically pain free week and David starting to feel like himself again after the horribly scary episode a couple nights before, this is what we woke up to on Friday morning...

Will you please pray that we continue to see a huge improvement in Andrew's pain, that it would be a direct correlation to ALL of the tumors shrinking, and that there would be no new tumors whatsoever?  Please also pray that David (and the rest of our family) remain healthy.  THANK YOU ANDREW'S ARMY!!!  Thank you for being our people!  We love and appreciate you so much!

Radical hope

I feel sort of behind on posting, so I'm not sure where to pick up other than saying that as it relates to Andrew's pain it has gotten a little better since we changed some of his pain meds. Unfortunately, his body has become desensitized to opioids a good bit, since he has been on them for so long and at such high doses/frequency.  There were a couple of mornings when Andrew didn't wake up with tummy pain and that was amazing, but then we would see the pain return later in the day.  We are still praying that PRRT will radically disarm his tumors and we will see some pain relief and be able to back off on some of his pain meds.  This is a huge prayer of mine because then we will know that something has finally knocked the cancer back some, but also, I hate that I can hardly remember my boy (how different was his personality, his energy level, etc) before pain meds...  before we heard the words that our boy has cancer.  Will you please pray that his scan on Nov. 27th does not show any disease progression (because if there was there would not be any reason to continue with PRRT), but instead his tumors are stable (unchanged) or a home run would be that we already see some regression (highly unlikely this early on, but we serve a big God, so let's ask Him)?  Lord willing, Andrew will receive his second round of PRRT on Nov. 28th.  We scheduled it on that date, so he wouldn't be radioactive over Thanksgiving and his birthday (that would really stink to not be able to be around your family on those two holidays).

This weekend, Andrew and I had a mommy/son date.  We went to ifly (which was super cool), the LEGO store, Cheesecake Factory, watched a movie in our hotel room, and just laughed a lot!  We had such an amazing time together and I couldn't help but praise the Lord all night that Andrew didn't have any tummy the entire day and night.  It was almost unbelievable because he ALWAYS has tummy pain at night.  Naturally, my mind went to trying to theorize why the lack of pain, hoping it could be a mommy's touch (his cancer impacts the endocrine system, which is tied to our emotions, so maybe he was having so much fun that his pain didn't have a chance)...  then came this morning...  He woke up in agonizing pain that turned our morning plans of playing LEGOs and going to breakfast (his favorite type of food is breakfast food) to laying in bed snuggling, crying, praying, reading Scripture, throwing up, and sleeping.  While that was far from the morning I had envisioned, I can't help but wonder if that too was a part of God's blessings on our date.  You see, that may be the worst pain I've ever seen Andrew in, but I was able to love him through it in a way I wish I was able on any other given day; however, the needs of our two other children, work, etc, make it difficult to stop everything and just focus on him.  As I cried with him, rubbed his back, and encouraged him while he threw up, I couldn't help but ask God if this was His idea of bonding time with my boy.  As he sat hunched over the toilet exhausted from throwing up (and looking like he had just run a marathon), Andrew said "thank you for being the best mommy ever.  I'm so proud to call you my mommy and grateful that I get to be your son.  Nobody could ever take care of me like you do."  Once I got him settled in bed in an attempt to sleep off the pain, he reiterated the same sentiment and concluded with "I'm sorry you have to deal with my tummy pain.  I know when I'm in bad pain I can sort of freak out and maybe be unkind, so thank you for helping me through it so much."  I hate that he apologizes to us for his tummy pain because God knows, it's no fault of his own.  Long story short, the time I spent with my boy this weekend was priceless, both the mountain and the valley!

As we continue to live in the fiery furnace, here is what the Lord has recently convicted me of.  I didn't know this, but I realized I have struggled with the fact that I don't have a sliver of statistical hope to hang on to.  You know, even if we were told that we only have 20% chance Andrew would be cured, at least I could be praying that God will allow us to be a part of that 20%.  Instead, the (earthly) statistics for Andrew's case looks more like this...  it is impossible that he will have NED (no evidence of disease) and even if that was achieved, 100% of the time it comes back.  Therefore, without God's radical intervention and healing there is no way Andrew will be free from cancer or be granted a long life with cancer that is well controlled. Once God convicted me of my desire for some earthly statistical hope to hang on to, I realized He is calling me to a radical hope...  the kind of hope rooted in God and only God.  There is nothing else to hang on to except God and the truth is there isn't anything more powerful and able than God.  Will you please continue to pray for Andrew like he is your own boy.  Pray that God would radically heal him and that his faith would be strengthened (as well as the rest of our family)?  THANK YOU!!!!  #Hopeon #butGod  #Heisable

Thanks to Sunshine Kids, we got free tickets to Disney on Ice.  Going with Grace makes everything magical.  She thinks everything is awesome!

While Andrew and I were on our date and Abby was at a birthday party, this is what Grace and David were up to!

I have to end on a super happy note...  last weekend these precious elves surprised the kids by putting up a Disney themed Christmas tree and leaving tons of gifts under the tree.  We are going to Disney World in January (Abby has a soccer tournament there that we are going to make a family vacation), so this helps us get super excited for Christmas and our upcoming trip!  You can't help but smile when you see this tree and it even has a remote control for the lights!

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