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!