Sunday, October 15, 2017

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)))

Wednesday, October 11, 2017

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! 

Saturday, October 7, 2017

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

Saturday, September 30, 2017

He Can Make a Way...

This is David- Leading up to Friday, the kids have handled the anticipation of separation rather well, until the night before treatment at least.  Abigail and Andrew shed many tears with the thought of being away from each other and snuggled quite a bit on the floor of our room (where they slept the last few nights).  While there were tears, we did our best to instill in our kids the mindset of viewing all of this as an adventure and a battle.  Our hope is to build in them an attitude of not feeling discouraged or defeated before even beginning their treatment, but to go into it with an excitement and anticipation, knowing it is temporary and will pass, so while on the journey to enjoy its nuances.  Hopefully, this week goes well, they are able to see God's presence in the midst of everything, enjoy the differences outside of their normal routine, and realize it was kind of fun (especially on this first one, since this will leave an impression in their minds with which they will interpret all future treatments).
Getting in some last minute snuggles...

This is Kristi-  On Wednesday there was a time of prayer for Andrew before school.  Seeing 100+ people show up to pray for and support our boy (and our family) was an incredible reminder that Andrew's Army is strong and in full effect as we pray to the One who is the author of healing, hope, and comfort!

Wouldn't be complete without donuts with green icing!  Thank you Lauren B!!!

Check out these paper dolls that many of the Campbell Elementary students colored as their representation of being a member of Andrew's Army and in support of Pediatric Cancer Awareness month, donated money to our favorite foundation, Triumph Over Kid Cancer!

This cutie also participate in the morning of prayer before heading off to her school!

Andrew and his precious teacher!  LOVE HER!

The day prior, I had been asking the Lord to show me His hand in the details because I was getting weary (just mentally and physically exhausted) and the "what if" monster was getting loud.  Wednesday prayer meeting was just the reminder I needed and then God gave us one of those hugs that served as his own personal signature written across the sky.

This rainbow appeared out of no where...  there wasn't a drop or rain cloud in the sky!  As we began praying, a second rainbow appeared!  These rainbows served as a powerful reminder that God can make a way where there appears to be no way.  There are so many stories in the bible that remind us of this truth, consider how he delivered Daniel from the lion's den, allowed David to defeat Goliath with just a sling shot and a stone, parted the Red Sea for the Israelites when they were pressed on every side, opened Sarah's barren womb, fed 5,000 people with just a few loaves and fish, called Abraham to sacrifice Isaac and then provided a ram in his place, and best of all, when Jesus defeated sin and death through the cross!

Here is a pic of that powerful reminder that God doesn't need rain to make a rainbow, nor does He need a roadmap to heal our boy!

Then on Thursday night, Andrew couldn't wait to attend a surprise birthday party for his best, best, best friend who was turning 82 years old, Mr. Alan.  Mr. Alan had surgery last week and has been experiencing some complications that kept him from being able to attend his own surprise party, so we brought the party to him!  We had an amazing time of celebrating a man that God hand picked to befriend Andrew and literally love him like his own.  These two have a relationship that is impossible to explain, you really just have to watch them together to even be able to scratch the surface.  When Andrew heard Mr. Alan was in pain (like he was) he would just weep and beg God to heal him.  Both Alan and Andrew are mighty men of God (just 74 years apart), who know suffering all to intimately.  For those who don't know Mr. Alan's story, he lost his first wife and two of his children to Huntington's disease and now he and Andrew are temporarily "pain buddies" as they minister to one another through their physical pain.  We prayed, cried, and laughed as we celebrated Mr. Alan's birthday and reminded one another of God's goodness and faithfulness.

We got Mr. Alan a new christian book and Andrew picked out a stuffed deer (one of Alan's favorite animals) and matching keychains.  The keychains have a compass (since God is both of their compasses in life) and a tag that says "best friends" on it.

They had a play date the night before (on Wednesday) as a little reward for Andrew enduring 2 long days of pokes and scans.  They built legos...
 And watched a movie...

UPDATE ON ANDREW- His treatment yesterday lasted about 5 hours.  They gave him 4 different types of nausea medication prior to his treatment beginning because the amino acids that they administer to protect his kidneys from the radiation can make you super sick.  They ran the amino acids for 30 minutes before they started the prrt therapy (radiation).  The prrt therapy ran for 30 minutes and then the next 3-4 hours was finishing the amino acids infusion.  With an hour left, Andrew started to feel pretty nauseous, so they paused the infusion for 5-10 minutes and that seemed to take care of it.  PRAISE THE LORD, Andrew didn't throw up then and hasn't thrown up since.  Outside of being pretty wiped out, he feels pretty good.

Our brave boy getting his 1st round of prrt!

My battle gear!  Love my new shirt and zebra belt!

Last night, he and David stayed at my parents house (they live in our neighborhood), since he especially can't be around Grace and Abby.  He was feeling pretty defeated last night as was missing us a lot, but he is handling this journey with much courage and bravery!  Andrew had a scan first thing this morning to make sure the radiation went to all of the tumors and by God's grace that appears to be the case.  David and Andrew are now at my in-laws house in The Woodlands until Wednesday.  They are going there because it makes it harder on all of us knowing Andrew is so close, but we can't be with him.  For some reason, him being in The Woodlands is far enough away where we can't just pop over to see him, but not too far to where he feels inaccessible.  Also, my in-laws have the perfect accommodations for this leg of the journey.  Andrew sent this text this morning, so it gives you some insight as to his heart.

While he misses us a bunch (and we miss him A BUNCH too), we continue to praise the Lord that his spirits are still good.

PRAYER REQUESTS-  At the consultation with the team of dr's administering prrt to Andrew (more about how amazing they have been in a minute) they shared that based on the scans they did prior to prrt his tumors (especially the lymph nodes) are taking up a good bit of glucose (what the cancer needs to feed itself) meaning they are probably more aggressive than we had originally thought or it's possible they have become more aggressive.  This was sort of scary to hear, but we are praying (please join us in praying) that every cancer cell would gobble up the radiation and not just get sick, but that they would die and stay dead.  At that same consultation we learned that the cancer has not spread to his lungs or bones which is a GIANT PRAISE.  They did see some spots on his lungs that look like they are recovering from an infection verses a new met and that correlates with his elevated white cell count.  Please also pray that we would all continue to remain in good spirits as we continue to choose joy despite missing each other terribly.  Please cover us in prayer of the next week!

***The dr's and nurses at Excel Diagnostics have been absolutely amazing on so many levels, starting with the mere fact they agreed to treat Andrew because they had to get special approval/compassionate use to do so.  Andrew had to get an IV placed for 4 days of scans and treatment, so the nurse that worked most closely with him was so proud of him for being so brave that she got him a Target gift card and told him to buy himself a Harry Potter toy (since she knows he loves Harry Potter).  After she had to stick him twice to try to get the IV placed on the second day, he was crying from being discouraged and it hurt, so she bent down in front of him and affirmed him for being so brave, gave him a long hug and told him she loved him.  It was so sweet, it made me cry too!  The dr's have been there to serve us on every level possible from answering my million questions, taking phenomenal care of Andrew, and above all... demonstrating a level of hope that we have soooo needed (a huge answer to prayer)!

Check out these precious dolls some dear friends had made for the kids!

Your faithful prayers have been heard and answered in so many ways, please keep the prayers coming because they matter to God and to us, every single one matters!

Saturday, September 16, 2017

Tears of Gratitude and Heart Ache...

As I shared in my previous post, we are rejoicing (BIG TIME) about the opportunity for Andrew to receive PRRT here in Houston and that the Lord provided the funding to do so! However, I have to warn you that if I see you out and about and you ask me how things are going and I burst into tears, don't feel bad or worry, everything is ok I'm just really struggling with the details surrounding Andrew receiving this cutting edge therapy that provides my boy the best chance at life. You see, we just learned that they need to move our originally schedule date of Oct. 3rd because they are trying to work out the scheduling kinks that Harvey caused (many people travel from out of town for treatment at this facility), which means his first round of PRRT could be moved up a week or back a few days. We are praying his appointment gets moved up because I hate to think about him having to wait a second longer not being on any sort of treatment and giving the chance for this dreaded disease to progress. Trusting God's timing is perfect!

That's not the part I'm struggling much with, it's the fact that for 6 days after receiving PRRT Andrew has to basically be quarantined because he will be radioactive.  He really shouldn't be around Grace during that time at all, but if he is, he can't touch her. That hurts my heart because I know it will break both of their hearts, but the worst of it is that the rest of our family needs to stay a meter away from Andrew also. I can't hardly see through my tears as I type this... a momma's heart wants to run in and hold their baby when they aren't feeling well, but I'm not suppose to do that because my own son is dangerous (not by any fault of his own, but because of the very testament that could give him life).  All Andrew wants to do after being at school all day and he's exhausted or in pain is snuggle his mommy and for 6 long days I have to trust that God is going to be the snuggles that he needs. I don't want Andrew to feel like a leper after all, and I know God doesn't either. I keep reminding God that he's only 8 years old, he doesn't deserve this, but God keeps reminding me He knows, He sees, He cares, He has a plan, so trust Him. I will trust Him even though it goes against every fiber of my momma's heart. To give you an idea as to how radioactive Andrew will be, he has to have his own bathroom for six days and flush twice after every time he goes potty because everything that comes out of him is toxic. We aren't allowed to be in a car longer than an hour with him and for some reason they suggest he sits diagonal from the driver. I think our plan for the first couple days when he's most radioactive, and over the weekend where Abby and Grace won't be in school (he obviously can't go to school for 6 days), is for David and Andrew or myself and Andrew to go stay somewhere else (maybe my in-laws) so there won't be as much time that we need to keep Andrew and Grace apart in the day.

We found out this information yesterday, just prior to sitting at dinner and Andrew's pain started to proegress pretty rapidly. We found out the place administering his PRRT need very specific labs ASAP (especially if his date gets moved up). After dinner, at one of our favorite restaurants (Guru Burgers) around 7:00 pm, we decided to head down to the medical center to get Andrew's labs done. We headed that way and by this time he was in excruciating pain, his cheeks were red (always a sign of the pain being BAD, and we are in for a good 5-6 hours of pain), and before long he began throwing up in the car (that happens when his pain is at its worst, he throws up from the pain).  We were in the medical center, but he had thrown up all over himself.  We stopped at a Target and bought him new clothes, Clorox wipes, etc and after getting him cleaned up, headed to his blooddraw. We arrived home at around 10:00 pm and Andrew was finally able to go to sleep.  Yesterday was just a rough day all around, but God's mercies were new (just like He promises) this morning and he woke up and even had a play date this morning.

On our way to dinner last night prior to tummy pain...

Waiting for blood draw after a very eventful night :-(

I still have no idea how we are going to weather those 6 days, but we are praying about it (for wisdom as to how to make the best of it for everyone) and hopeful that y'all will have some suggestions for us too ;-). So far, I'm thinking about lots of movies, FaceTime play dates, and some new toys. I'm also assuming Andrew will be really exhausted, so I'm praying he will sleep a lot to pass time.

Some have asked what PRRT is exactly. The best (and simplest) explanation I have heard is from Dr. Liu in Denver (what a blessing he has been). The Gallium 68 scan we went to Iowa for basically sent radioactive material into Andrew's body that act as a drone. That drone is attracted to tumors with somatostatin receptors, therefore the scan lights up in areas where the drone has found receptors to attach. Praise the Lord, Andrew's scan lit up bright, meaning he has the necessary receptors for PRRT. PRRT is a treatment that takes the same drone from the Gallium 68 scan and basically attaches a bomb to it, so when that drone attaches to the receptors, the bomb blows up/radiates the tumor (its very targeted radiation I guess).  I think I mentioned before that this treatment can shrink tumors between 10-80%. We are on our knees asking God to shrink these tumors like crazy so that we can try again at surgery and remove as many as possible.  We are also praying like crazy that PRRT will reduce Andrew's pain and keep his cancer "stable" (not growing) for a looooong time (or forever would be good, since our God is a miracle working God and can do that if He sees fit). Prior to and during the administration of PRRT, he will get amino acids that are suppose to protect his kidney's during the therapy.  The goal is to do 4 rounds of PRRT (and then 2 more if needed and if his body can tolerate it), so please join us in praying that he can easily complete the full 4 rounds (that he doesn't have to stop treatment because of toxicity or that his disease doesn't progress despite the treatment).

Lastly, we were suppose to go on Andrew's Make-a-Wish trip over Thanksgiving (a Western Caribbean cruise), however that would be a few days after his second round of PRRT, in which case we originally didn't want him to feel crappy for his trip, but now we know there is no way we can possibly go because he will likely still be radioactive on what would have been the first day or two of our trip.  Lord willing, we plan to reschedule his Make-a-Wish trip for sometime in Spring 2018.

Our families favorite song is "Impossible" by Sidewalk Prophets. The chorus of that song is our anthem right now "when my hope is lost and my strength is gone, He is rising up, we will overcome!"  #butGod. #hopeon. #wewillovercome

Friday, September 15, 2017

He Has Made a Way...

Y'all, there are few things I've been more excited about since Andrew's cancer diagnosis almost 7 months ago (read on for more details), so you know what that means...  the enemy is fired up and has been working overtime!  The enemy may take us out at the knees and try to drain every last ounce of energy I have in my body, but we will hope on and rejoice in the newest plan God has revealed for our sweet boy.  Long story short (as short as my long winded self can make it that is ;-), Andrew started a drug called Afinitor shortly after surgery.  The reason we went with this drug for treatment is because we were trying to buy time until PRRT was approved by the FDA or at least until University of Iowa was approved to enroll pediatric patients in their study protocol.  We had hoped they would get the study approved within 3 months (just enough time for Andrew to complete the 3 cycles of Afinitor) from Andrew's surgery, however it doesn't look like that approval will come as soon as we had hoped.  Meanwhile, David and I both were lacking peace that Afinitor was having any meaningful impact on Andrew's cancer, since his pain was continuing to increase and this road was starting to feel all too framilar.  Remember, right after Andrew was diagnosed we, along with his team of Dr's decided to go with a big gun up front, which was chemo (this chemo is arguably the most potent treatment option available for his rare type of cancer) and it didn't touch his tumors, in fact they continued to grow despite 3 rounds of chemo.

David and I began praying that God would make it clear if we should throw in the towel early on the Afinitor treatment and pursue PRRT.  Initially, we felt like that idea was borderline crazy because we know you need to give these different treatment regimens at least 3 cycles to demonstrate if they will be effective or not, we weren't sure where we could have PRRT done, and what sort of cost would be required. As we began praying about it, David reached out to the place here in Houston that offers PRRT, despite the fact that it's not FDA approved yet (thanks to the Right to Try law in Texas, which allows you to try non-FDA approved treatments as compassionate use/if you've tried other therapies and failed), you just have to pay full cash for them up front.  Initially, they told us "no" they wouldn't be able to treat Andrew because they had never treated a child before.  This time they said they had since treated a 10 year old child (with a different type of cancer) and would be willing to treat Andrew (praise the Lord).  We gathered all necessary information, figuring we would call them back if/when Andrew completed his 3 cycles of Afinitor and if we found out it wasn't working.  Our hearts were still unsettled about waiting another 2 months (at least) to start PRRT, in the event Afintor wasn't working, so we continued to pray, asking God to make His will super clear and to give us the courage to say "yes, Lord!"  Then, this past weekend happened where we were faced with the possibility that Andrew could possibly have a new met (tumor) on his lungs (we are still praying it's just pneumonia).  David and I both felt like this experience was the green light we needed from the Lord to move forward with PRRT (that was Saturday).

On Monday evening, I was sitting at Abby's soccer practice when I got a phone call from a man who I had spoken with once before, early on when Andrew was first diagnosed.  This man's wife has the same type of cancer as Andrew and he is a wealth of information.... like, he knows more than most Dr's we talk to, not to mention he is a godly man.  He randomly (or not so randomly ;-) called me on Monday to discuss Andrew's treatment and shared that based on the data, the experience of those they know in the Neuroendocrine Cancer community, and what the Lord has put on his heart that he thought Andrew needed PRRT sooner than later.  I got off of the phone with this sweet man feeling hopeful and encouraged, certain we were doing the right thing in abandoning ship on Afinitor and moving forward with PRRT.  You see, since Andrew's cancer is so rare (especially in children) the Dr's are playing a guessing game too as to what treatment to try and when, so we are very much on the front lines (as his parents) of making decisions about his care, so our prayer is that we would never get out ahead of God, but that He would guide and lead our every step.  He has clearly done that and as further evidence of His faithfulness, He used SO many of you to generously fundraise and donate to our family during this incredibly hard season and wouldn't you know that the exact amount we need to pay for 4 rounds of PRRT is what y'all have graciously helped us raise to date... almost to the dollar!!!  In the event Andrew's body can tolerate all 4 rounds of PRRT and he still needs more treatment (it is not curative, only 1% of people are cured, but it can cause 10-80% regression of the tumor burden) he may be eligible to receive two additional rounds 6 months after the completion of his 4th round (which would be August of 2018).  While the prospect of paying for two additional rounds of treatment sounds a bit overwhelming, we trust that if God calls us to it, He will see us through it and provide.

Deploying all prayer warriors for some huge prayer requests- We have had to increase the dose of one of Andrew's heavy duty pain meds called methadone (you know the drug they give people that are coming off of heroin?  yeah, that one :-/) and we are noticing that it has had some unsettling side effects like TERRIBLE night terrors (he wakes up crying or screaming, begging someone to stop hurting him, etc and it goes on multiple times throughout the night), sometimes causing these nightmares continue into when he is awake (more like a hallucination), and just overall making him feel crappy (dizzy, super tired, and just "not right").  We have backed down on the dose of that pain medication, so please pray that we are able to control his pain at the lower dose.  Please also pray that these 3 weeks that he is off therapy (to address his cancer, not his pain) prior to PRRT, the cancer does not progress and that the spot on his lung is not a new met.  Lastly,  will you please pray God would unleash His power and allow PRRT to work better than anyone has ever seen or imaged possible and that He would get all the glory?!?! #BUTGOD  #HOPEON

Catching a couple zzzz's at Grace's swim lesson.  This little sweetie could seriously fall asleep anywhere, but he keeps pushing through!

PRAISE...  The kids are LOVING school so far, praise the Lord!!!

Family handshake before heading to the first day of school...

Bubba's turn...

THANK YOU for faithfully praying and carrying us through this journey! 

Saturday, September 9, 2017

ER or bust...

For our non Facebook troops, here is an update on our very eventful day today...

"Boy does God have a sense of humor! Well... we are leaving the ER with Andrew, has a spot on his lung that we are hoping is pneumonia (likely because he has a lot of mucus and a cough) and not a new met (tumor on his lung), so we are starting him on antibiotics. Meanwhile, a nurse came to the house today to set up our home INR monitor (it monitors Grace's warfarin/blood thinner levels) and her number was, wait for it.... 6.0! That's crazy high and puts her at a high risk for internal bleeding. Therefore she has to come to the ER to get vitamin k (it reverses the effects of warfarin) and will likely get admitted until her INR is within range. Never a dull moment! Our life is seriously comical, not sure if we should laugh or cry.  That's when Abby reminded me that she looks at our life and thinks "God really trusts us to give us this journey." Amen sister... onward and upward. He hasn't fallin off His throne, so we will hope on and hi five each other as I leave the ER with Andrew (and Abby) and David walks into the ER with Grace. Will you please pray the spot on Andrew's lung is not cancer (and indeed pneumonia) and that Grace's INR gets into range quickly and without any events? Please also pray nobody has to miss their first day of school. Thank you!!!  We covet your prayers!"

"UPDATE- Giant thanks to everyone that is praying for us! This has been a loooong day, but praise the Lord Grace and David just got home (10:30 pm) from the hospital. Her INR was 4.4 at the hospital, so she didn't have to be admitted 🙌🏻.  We will skip her dose tomorrow and go for another blood draw on Monday. As for Andrew, he will be on antibiotics for 10 days and then we will re X-ray to see if the spot on his lungs has gone away. Please pray the spot goes away completely! Please also pray that God makes His will clear as to whether we should abandon ship on this chemo like medication he is currently on (we just don't feel like there is any sign it is working) and move toward doing PRRT here in Houston.  They agreed to treat him here versus waiting for a protocol to open in Iowa, we just have to pay cash for the treatment (insurance will likely not cover it since it's not FDA approved yet). We just want to go wherever the Lord leads and not get ahead of Him. This journey is crazy... God is not safe (He never seems to lead us down the paved, well lit road, that seems ideal to us), but He is good! Thank you for being faithful members of our army! 💚💙💛"

Monday, September 4, 2017

Living in the eye of the storm!

Well the past 2 weeks have been a whirl wind...  literally!

Well hurricane Harvey came in with a vengeance as it made landfall in South Texas dumping 51+ inches of rain (that's what we typically get in an entire year).  The first two nights we got almost no sleep because our phone alerts kept going off with tornado warnings, so we had the kids sheltering in place with us on the floor of our bedroom.  The next couple days were filled with prayers that the rain would stop, even if for just a short period of time, and give our poor city a much needed break.  Our neighborhood was on a voluntary evacuation, so we had to decide whether to stay put and ride it out or evacuate.  After much prayer, evacuating at that point almost seemed more dangerous than staying because most streets (including many in our neighborhood) were closed/impassable.  It was a difficult decision for every family, but our decision had substantial ramifications to consider.  We had to take into account the fact that we have two medically fragile children who can't go without their medication, if we were trapped for an extended period of time (beyond what we had already prepared for), need to have access to a hospital if they were to get ill, and can't afford to get overheated if we lost power (Andrew has had a hard time regulating his body temp lately.  When he gets over heated it takes him all day to actually cool down).  Also, we have a one story house, so we needed a two story option in the event our house took on water.  Thanks to our dear friends who recently moved, we had a solid plan B in place.  Their house is down the street from ours, so we blew up mattresses in case we needed to float our stuff down there.  Their house is vacant, has two stories and a generator, so we could have stayed there if our house flooded from the hurricane itself or the giant and powerful Brazos river (which we live right next to) breaching the levee.  We moved as much of our house as possible off the floor, in case of flooding, and everytime I pictured what we would evacuate with, if we did flood, all I could picture was David and I, carrying our three kids, two dogs and Andrew and Grace's bag of medication.  My biggest fear (besides our safety of course) was what would happen if Andrew was without the 20+ pills he takes a day, many of which are heavy duty pain meds that keep him from being in agonizing pain.  By God's grace, our street didn't flood at all; however, just around the corner from our house the water was waste deep, which meant we were safe, but stuck in our neighborhood for 4 days.  SO many others were not as fortunate and have experienced great devastation.  Our hearts are broken yet hopeful for them!

The Brazos River is on the left and that little patch of grass (our levee) is what is protecting our neighborhood from becoming one with the Brazos :-/

This was down the street from our house...

This was our street...

This was one of the streets where I work :-(

My mom happened to be in town visiting that weekend from California, so her trip was obviously extended since we were stuck and most roads were impassable.  Once the water in our neighborhood receded enough to get out, we drove my mom to Austin so she could fly home, since our Houston airports were closed.  We made a mini family vacation out of our trip to Austin, which was a huge blessing.  We went to an indoor bounce house/playscape type area and took a tour of some pretty amazing caverns.  We love Austin because so many of their restaurants, etc remind us of home, all the way down to their convenience stores...  they have 7 Elevens!  Back to the caverns, it was a mile and a half(ish) tour that Andrew especially absolutely LOVED.

Inside the cavern...

At one point, the tour guide pointed out an area where they do Wild Tours (this is a tour that lasts many hours and requires you to climb through a bunch of tiny crawl spaces, etc).  I could barely look over the edge at the tiny crawl space that he was referencing.  He said that you have to be 13 years old or older for that tour, to which Andrew excitedly exclaimed "Mommy, when I'm 13, will you do this tour with me?"  I told him I would be his biggest cheerleader on that tour, but that was a tour better suited for daddy (I'm a pretty daring person, but I'm only mildly claustrophobic and there is NO WAY I could do that tour without freaking out and then how could I help my boy through it).  He asked David if he would do it with him and David of course said yes.  Needless to say, I spent the rest of the tour talking to God, or maybe begging God is more accurate, to please let Andrew make it to 13 years old and be healthy enough to do that tour!  These are the types of battles that wage war in my mind daily.  It is at that point I have to remind myself of God's perfect plan and hope on!

As I hope many of you saw on the news, Harvey was devastating, but it was no match for Texans (and the countless others who came from across the country to help and are now considered Texans as well).  I have to say that I'm not surprised a bit by the sacrificial love that people have shown and continue to show to complete strangers because we have been on the receiving end of that love and commitment many times since Grace was born and even more so since Andrew's diagnosis.  However, it was on a scale of epic proportion.  I don't think our nation has ever seen so much personal sacrifice (from one's safety, time, energy, property, and above all their lives) from first responders and volunteers alike.  What a beautiful picture of what it means to be the hands and feet of Jesus from the initial rescues and to the clean up that is far from over.  Once we got my mom taken care of, we couldn't wait to serve our community.  Words can't express the joy we experienced serving together as a family (our own family and our church family, The Sanctuary Fellowship) all day Saturday and Sunday.  As much as Andrew loves serving, he knows his limitations and had to forgo the opportunity to serve a city about 40 minutes from our house that was devastated by the storm.  They not only had many feet of water in their homes, but they continue to be without power or water.  David helped muck houses, while Abby and I helped unload an 18 wheeler full of supplies, set up a distribution center (in the parking lot of a strip center), and love on a multitude of people that came through in desperate need of everything from water and food to diapers.  This little girl of mine literally only sat down for 5 minutes over 5 hours of running around serving in the HOT Texas heat and that's only because I insisted that she get in the shade and hydrate. It was impossible to get her to take a break and she was begging to help a little longer when we had to leave that evening because we needed to get Andrew and Grace from my parents.  The Lord used her and her 10 years of experience in this world to minister to me a lot the past couple weeks.

Best Sunday afternoon... serving alongside our amazing church family was such a joy and honor! 

The 18 wheeler full of supplies for Wharton!

Love this pic of my two favorite #17 soccer players working together on an assembly line used to unload the truck!

6 hours into serving a sweet community and still smiling!  This kid inspires me!

Just some of what was pulled out of the house David was working on...

This was Saturday when Abby and I perfected our personal shopper skills in preparation for Sunday!

As I look back on the past week, I'm surprised about the level of peace we had about it all.  I guess I shouldn't be surprised because the Bible talks about that type of peace, you know the type that surpasses comprehension?  As I thanked God for His peace and protection, I realized that maybe the reason we had a measure of peace during Harvey is because we live daily in the storm these days.  If you ask anyone in the Houston area to describe what they experienced during Harvey, my guess is they would recount feelings of fear, uncertainty, being desperate for information that can guide their decision making in keeping their family safe, camaraderie with those they battled through Harvey with, exhaustion, more exhaustion, concern for what the next hours or days would bring, feeling out of control, the need for the support of family and friends, and so much more.  Once Harvey moved on, the river crested, and we could all begin the process of cleaning up and rebuilding, I would hear or read people talking about their new found ability to take a sigh of relief and get some rest.  I wondered why I didn't experience those same feelings (don't get me wrong, I'm SUPER grateful we were safe and our house was dry and continue to praise the Lord for it) and that's when it hit me; when you are battling for your life or the life of a loved one (especially your child), you literally move from one battle field to another.  No time to exhale because cancer doesn't take a break just because Harvey is in town, cancer doesn't give you time to clean up the mess, take a little vacation, and then resume the battle when you are rested.  No, cancer rages on without regard for anything or anyone else.  I pray my feeble attempt at trying to paint a picture for you about what the life of a family battling cancer, especially pediatric cancer, looks like will help you get into the mind of the far too many children and their families who are in the fight of their lives as you read this.
September is childhood cancer awareness month.  Will you please join us in helping raise awareness of the unmet need for additional funding for pediatric cancer research?  Every two minutes, a child is diagnosed with cancer.  10,000 children in the US under the age of 15 will get a cancer diagnosis.  1 in 5 children with cancer will not survive.  For children who survive childhood cancer, the battle is never over.  Currently, only 4% of cancer research funding goes to researching new therapies for children.  Will you go gold in September for childhood cancer by changing your profile picture on Facebook, donating to a foundation that raises and donates all its money to pediatric cancer research (our favorite foundation is Triumph Over Kid Cancer.  You can learn more about this amazing organization at, go out of your way to encourage/lean in to a family you know that is in the thick of the battle (y'all have done such an awesome job of leaning into us, please don't stop... we need you), pray like crazy for healing, etc.....  just "do that one thing", that one thing that will make a difference no matter how big or small!

-The truth is CANCER SUCKS (that word might offend some, but let's be honest, that word is mild compared to how I really feel about this dreaded disease), but GOD IS WAY BIGGER than cancer (or anything else you might be going through)!  #butGod

-"She holds onto hope for God is forever faithful."  1 Corinthians 1:9  #Hopeon

-"Hope is a verb with sleeves rolled up!"  #Dothatonething

****Update on Andrew and prayer request- Andrew's last blood draw revealed that his liver enzymes are back to a crazy high level (like 10x what they should be).  Will you please pray that his next blood draw (this Wednesday) reveals labs that look totally normal?  I'm not sure what we will have to do if they are still high, but we can't afford for his liver to be compromised because he is in no way a candidate for a new one.  Please also pray we are able to continue to keep Andrew's tummy pain under control.  Here is a glimpse of what our morning looked like today... tummy pain is brutal!
Grace has a blood draw on Wednesday too, please pray her Warfarin levels are within the right range and stay there.  THANK YOU!!!

How could I forget...  we also celebrated Grace's 5th birthday last week...

And David's too!

Praying for and praising God for each of you daily!  Thank you for standing by us always!