Thursday, June 15, 2017

Home... for now

After being in the hospital for nearly three weeks, Grace and I busted out of there on Monday evening, just in time to make it to part of Abigail and Andrew's swim meet.  We are amazed and grateful with how well Grace has recovered from this round of surgery.  While it was difficult having our family separated, it was nothing in comparison to when we have been in a completely different states; therefore, we praise God for His guiding hand in the process and helping us to be completely comfortable and confident with the decision to stay in Texas for surgery.  Now that we are home, it is pretty much life as usual, with the exception of having a four year old on sternal precautions for six weeks (yikes!).

Both kids did great at the swim meet and had loads of fun in the process!  Even though Andrew is on chemo right now, he swam hard and got some great times.  In regards to Andrew, his pain has been rather brutal, as usual.  They have increased some of his medication dosages, but he still only has a few hours here and there throughout the day in which his pain isn't bad.  The rest of the time he is double over in pain.  The last two days the pain has been so bad that it has caused him to vomit.  Then, Andrew tends to go on to apologize for it or apologize for waking us up so much at night time. We hate cancer!  It absolutely sucks!  I have more choice words for my feelings towards cancer, but they aren't the most God-honoring.  In light of how much this all sucks, it is comforting to know that we can go before God and express to Him all of our anger, frustration, sadness, hopes, and complaints.  We trust and know that God not only desires for us to come to Him, but hears our prayers and despises the situation just as much as us.  The presence of cancer merely reflects the reality of the presence of sin in the world.  One day, sin will be gone and we get to hope and rejoice for that day.  In the meantime, we take comfort in knowing that God is over all this and somehow in control.  While we do not understand His purpose, we trust our good and perfect God and know that He is at work through all of this and will use our circumstances in order to demonstrate His glory.

By the way, we received an email from Iowa late last night stating that surgery will tentatively be scheduled for July 18th or 21st.  Then, they emailed back again this morning stating that it could potentially be as early as July 3rd or 10th.  We won't know for sure until Monday.  The difficulty in scheduling comes from the pediatric surgeon on the case being out of town right now and the adult surgeon heading out of town for two weeks this weekend; therefore, they have not fully had the opportunity to review the case together and come up with a surgery date.  Therefore, we should have a definite answer by Monday when the pediatric surgeon will be in the office and has an opportunity to review Andrew's case.

Abigail has been a little rock as usual.  It is amazing to see her resilience through everything.  She had a great time at Camp Cho-Yeh last week, but definitely missed the family and was happy to get home.  However, I am pretty sure we missed her more than she missed us.  We sure were happy to have her home!!

As we wait for surgery, please pray Andrew can find some relief in the process.  The team in Iowa told us today that the tumor slides we sent them does confirm the original tumor is in the pancreas and not the small bowel, so please pray the surgeons are somehow able to remove the original tumor without having to do a Whipple.  Thank you for continuing to support us and ride with us on this rollercoaster, while the rollercoaster is certainly thrilling and has loads of ups and downs, we do wish it was a little less squeamish; however, it makes us all the more appreciative to all of you, Grace's Village and Andrew's Army, for still being willing to ride with us!

Oh, yeah, Kristi took Grace to get a haircut when she got home from the hospital and here is the little cutie!

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!!!