Sunday, May 7, 2017

Finally made it to Iowa...

Where do I even begin....  How about with the one thing that I know for certain?  God is faithful even when it's hard and things don't make sense.  He will make a way where there is no way.  He hears all of OUR prayers and we literally can feel your prayers!  And that's just the tip of the iceberg when considering the awesomeness of the God we serve.  Here is a brief update on this week's adventures and an adventure it has been...

-Our trip to Iowa did not start out the way we had hoped, David wasn't able to join us in Iowa because Grace was sick, however, my mother-in-love did a great job as a stand in husband!  Our arrival at the gate at Southwest Airlines was another giant blessing and demonstration of a group of people going above and beyond for their passengers.  We walked up to the gate to see some of Andrew's Army waiting to greet us; this on the heels of the incredible welcome they gave us last week on our way to Denver (we got to tour the cockpit and spend time with our new favorite pilot and co-pilot).  Make that two weeks in a row that Southwest blessed our socks off (THANK YOU AMBER)!!!

So, our flight was delayed on Tuesday night, therefore we found ourselves with an almost 5 hour layover in St. Louis.  It was 10:30 and we were all exhausted.  I had promised the kids they could get an ice cream or Annie's Pretzels after they completed some of their homework in the airport.  As we walked toward the edible reward they had been eagerly waiting for we realized everything was closed (mommy fail!!!).  Dunkin Donuts was closed, but still willing to sell us some donuts.  As we approached the Dunkin Donuts counter, I noticed a guy (a customer) praying with the staff, so I waited behind him until he was done.  As he walked away I told him that I love that he prayed with the staff at which point he noticed my shirt that said "faith can move mountains" and commented on it.  Before I knew it we were talking about why we were headed to Iowa and spent the next 30 minutes praying together.  This sweet man, I now know as Eric, prayed over all of us and passionately reminded Andrew about God's character, power, might, and love for him.  Before we knew it our plane was boarding, so we had to quickly say good bye to our new friend, but walked away with a sense that we had a Divine appointment which set the tone for our trip.
-Our meeting with the Surgeon the next day went great, in the sense that he was amazing in the way he interacted with Andrew and spent time talking through all of the different surgical and treatment options with me, never making me feel the least bit rushed (despite the fact he had patients lined up to see him still).  He explained that they believe removing the primary source prior to PRRT treatment, etc is imperative.  He didn't mince words when explaining the complexity and risk associated with trying to remove the primary tumor and the lymph nodes, but I definitely got the sense that he would do his best to get every source of cancer despite it being extremely tricky and labor intensive and would only pull out early if things got too hairy in there and it was too risky.
-We finally had a chance to meet with the Pediatric Oncologist who we had been waiting FOREVER to hear back from and I can say, despite the frustration of poor communication, it was worth the wait.  She too did an amazing job of connecting with Andrew and making him part of the discussion.  Also, she talked me through all of my questions and concerns and helped us come up with a plan in terms of next steps.

Dr's appointments are always better with your bestie in tow!

-Next we had the scan!

Getting injected with the radioactive dye in preparation for the scan...

-Meanwhile, we learned that at Grace's echo she now has moderate regurgitation of her mitral valve, in addition to fluid on her lungs from being sick.  They admitted her to the hospital for IV lasix and to monitor her.  Her Dr here doesn't think the regurgitation is related to her illness; therefore, we are talking about possibly replacing her valve sometime in the next couple months (still waiting to hear back from her team in Boston with the plan).

-Highlight of our trip was getting to see family!  The kids got to play with their 2nd cousins and we all shared a lot of laughs.  What a special treat to be receiving treatment in the same city as some super special family members!

Fun flying game at the Children's Hospital in Iowa City!

Beanboozal fun!

For the record, the barf jelly bean tastes just like barf! YUCK!!!

Even the Grandma's joined in the fun...

And we may have been converted to Hawkeye fans!

Thank you for being such amazing hosts Aunt Kathy and Jules, we are so grateful for y'all! 

-We landed back in Houston, went straight to the hospital where Grace had just been discharged, so we met David outside of the hospital and traded kiddos...  we picked up Grace and gave him Andrew, since Andrew needed to get platelets.  His platelets were lower than they have ever been before on Wednesday and I noticed petechia (red dots under the skin) all over his body during our layover on Friday, so we called his team and they said we needed to bring him in.  David and Andrew arrived at home at almost 11:00 pm on Friday and we have all been under the same roof since then!

Here is our 5 minute reunion and hand off of kiddos outside of TCH!

***I got a call from the oncologist in Iowa on Friday evening with the results from the scan...
IT LIT UP!!!!!!  This means Andrew is a candidate for the treatment I've mentioned previously called PRRT (it is not FDA approved, so currently only available in Europe in terms of being able to treat a child).  PRRT is basically like attaching a radioactive bomb to a drone that is attracted to/seeks out receptors on the tumors.  The drone takes the radioactive material to the tumor and injures/kills it.  The fact that his scan lit up means that he has the receptors on his tumors to attract the drone.  I hope that makes sense.  Let's stop here and PRAISE THE LORD big time!!!!  Thank you Jesus for answered prayers.  The Dr also said they are sort of perplexed about the primary tumor and lymph nodes.  They are having a hard time telling on the scan, MRI, and CT scan if the tumor and lymph nodes are all growing on top of each other, so it's hard to see the pancreas tumor or if the tumor is much smaller than what was previously thought and it was being hidden by the lymph node.

HUGE PRAYER REQUEST- please pray it's the latter, that the tumor is much smaller than they originally thought and it can be taken out without the need for a whipple.  The Whipple procedure (pancreatoduodenectomy) is a complex operation to remove part of the pancreas, part of the small intestine, and the gallbladder.  We know the removal of the lymph nodes will be very risky business in itself, so the mere prospect that we may be able to avoid the whipple is a gigantic blessing!  Will you please, please, please, pray this is the case?!?!  The oncologist talked about the possibility that they may want to do an ultrasound guided endoscopy where they snake a line through his intestines and into the pancreas to get a tissue sample of the pancreatic tumor.  The goal would be to compare the pancreatic tumor with the liver tumor and get a better look at the size, shape, and location of the pancreatic tumor.  This procedure would be done in the OR (verses outpatient, like most endoscopies) in Iowa.  
-Andrew's team (surgeon, oncologist, nuclear medicine Dr, etc) are meeting tomorrow (Monday) to discuss the next steps.  Will you please pray for supernatural hope, wisdom, and skill for each Dr weighing in on Andrew's care and that they would come up with the perfect plan.  
-We are hoping to hear back from Grace's team in Boston soon as to when and if she needs her valve replaced.  Will you please pray for supernatural hope, wisdom, and skill for them too?
-Please also pray for all of the logistics surrounding the reality that two out of three of our kiddos need major surgery in two different states, neither of which are in Texas.  

Ephesians 3:20-21New King James Version (NKJV)

20 Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, 21 to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.


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