Sunday, May 28, 2017

Memorial Weekend Update

As usual, this is your pre-reading warning, this post is coming from David and not Kristi.

While this week has been difficult, it has also had some great moments to it.  It is always illuminating to look back on events and see how God's hand is at work, but unrealized until after the dust settles and we are able to see a better picture of it all.  When Grace went into the ER on Abigail's birthday and the realization set in that her heart was already showing a lot more stress upon it than it had since her echo two days earlier.  Along with this realization came the reality that a commercial flight to Boston was no longer an option; therefore, we were either going to need to take a medical flight to Boston or begin thinking about the possibility of just having surgery here at TCH.  In the past, our surgeries at Boston Children's have been vital because the philosophy behind the procedures being done on Grace was drastically different between the two institutions.  However, now we are facing a valve replacement and both institutions would most likely be putting in the exact same type of valve. Boston Children's is ranked number one in pediatric cardiology and Texas Children's is ranked number two, so it's not like we are at some rinky-dink hospital.  Therefore, it feels like God allowed all of these circumstances to happen, in order for us to consider just having Grace have her valve replaced here at TCH, which wasn't even a thought we were considering prior to this past Wednesday.  As we have prayed and thought about this decision, it seems like a no-brainer to just stay here in Texas, especially as Andrew will probably be heading to Iowa for surgery within the next few weeks, and our family will not have to be separated in three different cities.  In light of this decision, Grace will remain in patient at Texas Children's Hospital with surgery most likely happening this coming week... at least, we hope it will happen this week.  Apparently, the surgery schedule is pretty packed this week, so nobody can give us a potential date at all, but they did confirm that we need to remain in patient as we wait for surgery.  Grace is doing much better at this point, since she has been on IV Lasiks, but if surgery doesn't happen this week, then I fear we will have a stir-crazy kid on our hands.

On to Andrew, he began receiving twice daily injections on Wednesday, with hopes this will help with his pain.  Poor guy, he hates getting these injections and they seem to be rather painful, but after 5 days of having them, his pain does seem to have slightly improved.  Therefore, we are hoping to have him transition to a once monthly injection, rather than twice daily.  In addition, Andrew is now taking methadone and oxycodone for pain management.  While this seems to help, the methadone also makes him rather tired; therefore, any free moment Andrew has, whether in the car or at home, we discover him somewhere catching a quick snooze.  Also, it seems rather crazy that two of our three kids have now been on methadone... now we just pray that Abigail never is in need as well. 

In regards to Andrew's biopsy on Thursday, the Interventional Radiologist was able to get a biopsy of the tissue, but he was unable to verify if it was from the pancreas or if it was from the lymph node; however, the pathologist did confirm that the tissue biopsied was also a Neuroendocrine Tumor.  We will hopefully have the full results from the pathologist by this Tuesday.  Andrew's oncologist and surgeon in Iowa are meeting on Tuesday and we should have an answer from them sometime between Wednesday and Friday as to when they would like to schedule surgery.  It will most likely be scheduled sometime in June.  

Let's not forget about Abigail, she has been such a trooper through everything.  Honestly, it has been so helpful that many of you have come alongside of her and loved her well.  Your love and care for her has really made a difference in her outlook and ability to handle all that is going on around her.  We are thankful for her and continue to be blessed and amazed by her selfless attitude and heart.  Abigail has really kept it all together, with the exception of her birthday, but even then her sadness had nothing to do with herself.  Since Grace and I have been in the hospital, Abigail has been a tremendous member of the team in getting things done at the house: doing the laundry and folding clothes, doing the dishes, and managing Andrew's medicines when we aren't around (not without adult supervision and our instruction, of course).  She hasn't complained about the extra responsibilities, if anything, she is asking for what else she can do.  It seems like the break from soccer came just at the right time for the family craziness.  I know that I just bragged a lot about Abigail, which I didn't realize until I just finished writing this paragraph, but in all honesty, we are really proud of her and thankful for her maturity and character.  We praise God for her heart and little woman she is becoming.

Andrew was able to go on a play date with some sweet friends from our church who have created a special and unique bond with our kids.  We are thankful for Alan and Kathy Hunt!

Andrew off to the movies with Kristi's parents

While Abigail and Kristi had the opportunity to get away to a Houston Dash soccer game!

Thank you for continuing to walk with us on our journey!  We couldn't do it without you and praise God for you!  

Wednesday, May 24, 2017

Surgeries, Surgeries and Travel Oh My!

For anyone not on Facebook, i'm so sorry I haven't updated the blog often enough.  It is so much easier to quickly update Facebook with prayer request and updates because I rarely get to sit down in front of my personal computer anymore.  Here are a couple updates I recently posted on facebook...

***First things first... TODAY is a special day because its ABBY ROSS' 10TH BIRTHDAY!!!

Happy 10th birthday to this girl!!! Abigail is an amazing balance of being one of the kindest, most tender hearted people I know, but at the same time being something fierce. She is fiercely competitive, striving for excellence in all she does, but also loves and protects fiercely (I don't worry about someone picking on Grace, Andrew, or anyone that is a target when she's around 😉). Above all, Abigail tenderly and fiercely loves Jesus and that's what I admire most about her. She has been called to be the big sister of a brother (her best friend) with cancer and a little sister with a major heart disease and an extra chromosome, which often requires her to take a back seat, take on grown up responsibilities, cling to God's promises because what she's dealing with at her young age is unlike what others around her can fathom, etc. All the while, she does it with such joy and grace. I could go on and on about all the ways in which I look up to (or down to 😉) Abigail Lynn Ross, but I will sum it up with HAPPY BIRTHDAY to the daughter, friend, and sister in Christ that is my hero! #davidandgoliathallday

Best big sister EVER!!!

I love her intensity!

...and her courage to go against girls twice her size!

...If you can't go around them, you have to go over them!

Story of her/our life, get fouled and keep on going!

***Now, an update on Days of Our Lives with Andrew and Grace!  

-Andrew is headed to a CT scan now to get a look at the tumors in Andrew's body, specifically the primary tumor on his pancreas to see how it has or has not responded to the past 3 cycles of chemo.  Tomorrow, Andrew has an ultrasound guided biopsy of the pancreatic tumor to get a tissue sample (compare it to the tumors in his liver) and to get a better look at its size and location in an effort to help the surgeons plan their attack in the operating room.  PRAYER REQUEST- Will you please pray these two studies confirm the tumor is small enough to take out with out the need of a whipple?  Please also pray they can get all cancerous lymph nodes.  Those are two crazy big prayer requests, but we serve a crazy big God, so lets go boldly to the throne and ask Him to unleash His healing power on our sweet boy!  We are waiting for an official surgery date, but it will likely be in about 3 weeks in Iowa.  

-3 weeks...  well, that happens to be about the same time our Gracie Doo will need her mitral valve replaced in Boston (that makes surgery #6).  On Monday we did not get the news we hoped to hear, but we are trusting God has a reason and plan for it. Grace now has severe mitral regurgitation (it went from moderate to severe in less than a months time) and the pressure in the right side of her heart is now elevated (a sign that he heart is in distress). The prospect of Grace having surgery in Boston and Andrew having surgery in Iowa at the same time or overlapping in some way is a very real possibility. Will you please pray for ALL the logistics, successful surgeries without complications, and renewed strength for our whole family? #butGod. (but God is above it all)

***I will be sure to let you know as soon as we have surgery dates for both Andrew and Grace.

***Last nights Andrew's Army night at the Sugar Land Skeeters game was a powerful reminder that we are not alone in this fight!  The Andrew's Army soldiers (you) are vast, strong, unwavering, and generous beyond belief.  You aren't scared off by a torrential pour, thunder, and a tornado warning!  

Andrew got his own Skeeters jersey! 
The players all had Andrew's Army shirts!!

Besties hangin in the dugout!

Some batting practice with the players!

More batting practice on the field...

These guys were so incredibly sweet to Andrew!

Classic Chevrolet brought out a SUPER COOL green (Andrew's favorite color) car for Andrew to ride out in!

How cool that Swatson had an Andrew's Army shirt too!

One heck of a coach!  Thanks Coach!

Some Skeeters staff and friends at the game asked Andrew to sign their shirt.  Be still my heart!

Balloon release...

Thew big kids school nurse that helps us take care of our sweet boy!

The big kids amazing principal, Mrs. Koerth!

Andrew loved hanging out in the broadcasting booth!
Abby and some of the sweetest girls on the planet...  seriously, they are the best!!!

THEN, the weather got crazy!!! Just when things looked bleak... THIS...
A rainbow!  The perfect reminder of God's promises (God used a rainbow in scripture as a reminder of such)!  The rain doesn't last forever and His beauty and light WILL emerge from the darkness!  

"When life gets too hard to stand... kneel!"  Will you please hit your knees with us and pray for the next steps of this Divinely designed journey?!?!  THANK YOU!!! WE LOVE YOU!!!

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.