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