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