Wednesday, March 8, 2017

More question marks...

Well, the plot thickens.... David spoke to Andrew's TCH Oncologist this morning and the two day scan they did this week did not yield any results (nor did the scan last week).  Apparently, 20% of these tumors don't take up the dye from the Octreoscan, so that just adds more questions marks behind Andrew's already crazy rare diagnosis.  We remain confident that God has got this, He has a plan, and we will hope in Him always.  God has been working on my heart big time, helping me confront the foot holds that I give the enemy far too often.  He has helped me unclench my hands and say "Your will God, not mine."  When I'm feeling anxious and broken, is when I find myself holding on with clinched fists to what I want and how I want God to answer my prayers.  It is a moment by moment effort to purposefully and proactively approach the throne with open hands, trusting that my Heavenly Daddy's thoughts are nothing like my thoughts and His ways are far beyond anything I can imagine (I know this because Isaiah 55:8 says so).

Since this isn't our first rodeo (hence our journey with Grace), we have been praying the Lord would lead us where He wants us to go for treatment/second, third, fourth opinions, etc and it seems as though He may be leading us to Iowa for a third opinion.  University of Iowa is the only center that has been awarded the title "center of excellence" for the treatment of NET's (neuroendocrine tumors).  There is a husband and wife team there that run their program.  The husband is over the adult side and the wife over the pediatric.  The wife's name is Dr. Sue O'Dorisio and she has been absolutely amazing in her willingness to communicate with us via phone and e-mail, sharing her opinion and inviting us to Iowa if we would like their assistance.  Prior to getting the results (or lack there of) of this weeks scan, our plan was to head to Iowa after Andrew completes 2-3 months of chemo to do a Gallium PET scan (which is a scan performed there, and is not available at our local hospitals, and is more sensitive than the other tests available) and discuss the next best steps, but we are now wondering if we need to head to Iowa sooner than the original plan.  Will you please join us in praying that God would lead us exactly where and when He wants us to go and that we would have the courage to say "yes, Lord" to whatever He calls us to?  Will you also please just pray for Andrew like he is your own son?

Last night was a very rough night, as Andrew suffered for hours from excruciating pain to the point we contemplated many times in the middle of the night if we needed to take him to the ER for morphine.  In addition to the tummy pain, he vomited as a side effect from chemotherapy.  All that to say, will you please pray for pain relief and rest for our whole family?  Thank you!!!!!!!!

After Andrew got a blood draw and the dye for the scan injected on Monday, we had to wait 4 hours until the scan, so we headed to the zoo for a couple hours.

Headed back for the scan after a long day.  The chemotherapy has wiped this sweet boy out.

We love you, every member of Andrew's Army!!!


Kathy A. said...

How amazing that these specialists are in Iowa City!! Because if you DO decide to go you have family there! A place to stay and any kind of help you need. God is good. We want answers and the BEST for Andrew. So if Iowa is in your future, we all have your back. I return from FL April 12th to Indy and then home to Iowa right after Easter but you are more than welcome to use my "facilities"any time.

Praying big time,
Aunt Kathy

Love you all!

Julie Wigle said...

Agreed with Mimi's comment! We have peeps here that will love on you during this journey...we think Iowa people may be the nicest! ;) God is good in the midst of a storm. We will pray for a clear answer and for some relief for Andrew. Loves and hugs. Julie

Andrea said...

I found your blog through a Facebook post. I will pray for Andrew like he is my own son. I will beg for his mercy and healing and comfort. I am so sorry.