Sunday, June 25, 2017

A redeemed detour...

This week has been a busy one... which is our new norm ;-)

Here are some of the highlights and prayer requests:

-To God be the glory, Grace is rockin' her recovery!  By looking at her, you would never know she just had her 6th open heart surgery 3 weeks ago!  She is on sternal precautions (can't lift her under her arms, can't be submerged in water, and can't be in closed environments, especially around other little people, in an effort to keep her healthy) for another 3 weeks and we continue to try to get use to Coumadin (blood thinner to keep her from having a stroke due to her new mechanical valve).  Being on Coumadin is a constant dance of trying to make sure her levels are within therapeutic range (high enough to make sure she doesn't throw clots, but not too high to where she is at risk for an internal bleed) and since it interacts with just about everything (food, medications, etc).  She has had blood draws every couple days, sometimes once a week, and we look forward to the day we can get blood draws every 2 weeks or even monthly.  Fortunately, Grace is a rockstar (just like her bubba) at blood draws.  Grace cheers "Yay!  Gracie and Bubba blood draw time!" about her and Bubba getting to have blood draws together and tells us how tough they are (she couldn't be more right, God made those kids crazy strong and courageous).  
 Silly goose!

 More silly goose!  This is a pic we just got back from a family photoshoot we did shortly after Andrew's diagnosis.  I love this pic because its such a great depiction of Grace's personality! 

-This is a topic that has been on my heart for awhile now, but I can never seem to find the time and emotional strength to pluck away at the keyboard and pour it all out, so hear is the reader's digest version...  Those of you who are parents know that parenting is one of the hardest jobs on the planet, however, we have learned that parenting a child with a "terminal" illness (I put terminal in quotations because it's only terminal if and when God says so, so until He says so, we are focusing on life and hope) takes the complexity of parenting to a whole new level.  You constantly find yourself trying to find the balance between being laser focused on raising God loving, honoring, and fearing little people that will grow up to lead their own family someday (which entails leveraging teachable moments, holding them accountable, etc) with wanting to give them everything they want because their life is hard and you don't know how much time you will have with them.  Here's a tiny example of what I mean... you walk into a room to find toys everywhere that you have requested multiple times to be picked up and your initial instinct is to be frustrated, but then the battle in your mind begins...  how about I just be grateful that I get to stumble over these toys sprawled out (toys that are evidence of my child being a kid and having fun); what if there is a day I yearn to stumble over these toys just one more time.  We have chosen to focus on life and treat Andrew like we would as if he didn't have cancer because we are hanging on to hope that we will get to hang onto him for a long time (until God tells us otherwise).  To add additional complexity to the situation, Andrew is on a CRAZY amount of pain meds (most adults would sleep all day on these medications and their doses and yet this boy still carries on as a normal kid participating in swim team, playdates, etc)...  despite falling asleep mid-bite at times...

There are times when we find ourselves trying to decipher if it's the medication talking/acting or Andrew.  We have had some heart breaking weeks when we miss the boy that we know is in there, but is being masked by a whole lot of pain meds and on top of that, despite the pain meds, he still has break through pain (AGH!!!).  This week we increased his methadone dose and backed down on oxycodone and hydrocodone which has resulted in better pain control AND after much prayer we are seeing more than just glimpses of our boy we know and love sooooo much!!!  Giant praises!!!  Will you please pray that we continue to have good pain control without the need for more pain meds and that we continue to see his personality through all the meds?  THANK YOU!!!

-Abigail came up with the idea that she wanted to start tutoring Grace, so she came up with a lesson plan for the Summer and created a folder to track her progress.  She tutors her everyday for 30 minutes, each day focusing on a different skill (sight words, letters, counting, shapes, writing, etc).  I remembered her expressing interest in raising more money for TOKC (Triumph Over Kid Cancer, our favorite childhood cancer foundation) on the heals of her 4th grade class winning the Lemonade Wars (all the 4th grade classes come up with a campaign for selling lemonade to the students and parents on the last day of school and the winning class gets to donate all the money raised to the charity of their choice.  Abigail was voted president of the project, so it was an extra special win and they raised over $2,000 for TOKC in Andrew's honor), so I told her we would be happy to pay her for tutoring Grace.  She was so excited to get her first pay check at the end of the week and has started her TOKC fund.  LOVE her heart!  While it was a giant bummer not to be able to attend Pine Cove Family Camp this week (like we have for the past 6 years), but the gifts God has given us this week (the blessing I mentioned above about Andrew), getting to see Abigail tutoring Grace each day, and finally getting a surgery date is some how all worth it.  Andrew's official surgery date in Iowa is July 10th!!!!  

Andrew wants to help with Grace too, so he is in charge of helping Grace with her ability to tell stories and inference (LOL).  This tutoring session is complete with LOTS of make believe and costume changes!

-David and I got away for a MUCH NEEDED date night this week!  David surprised me with my favorite kind of date night...  Not sure if any men read this blog, but in case you do, here is a tip on how to touch your wives heart if she's anything like me...  David bought me a super cute dress for our date.  I love when he picks clothes out for me because I know all the effort that goes into it (lugging 3 kids around to pick out the perfect dress) and it reminds me how well he knows me because he always nails the size and style.  Then, we went to dinner, played some of our favorite games, stayed the night at a hotel, listened to some 90's rap music, and got a massage the next morning, but most importantly we were able to actually complete a conversation without being interrupted by little people, we hardly talked about cancer or heart surgery, and we laughed A LOT!  

We didn't get any pics of our date, but here is one we just got back from that family photoshoot, so we will pretend its a date night pic ;-)

-Lastly, check out this cool video Andrew was sent this week from a guy that has always been one of our heroes, not just because he's an exceptional football player, but even more than that because he is an exceptional person on and off the field!  

-Please pray for safe and uneventful travel for our whole family.  We (David, myself, Abigail, Andrew, and Grace) are all flying to Iowa on the 9th and my in-laws are driving to Iowa to be available to keep Abigail and Grace for us while we are at the hospital, etc. 
-Please pray for every single person playing a role in Andrew's care, especially the surgeons Dr. Howe (adult surgeon) and Dr. Pitcher (pediatric surgeon).  Please pray God would guide their hearts (they would care for Andrew like their own), their minds (they would have supernatural wisdom), and their hands (it would be God's hands operating on Andrew).  
***Please pray they are able to remove the primary tumor on the pancreas without the need for a whipple and that the primary tumor and every lymph node literally pop out of his body so easy that the surgeons would be so baffled and the only explanation would be God!  They have decided to most likely NOT open up his chest to go after the lymph node near his heart because it's a very invasive surgery (David and I have a skewed view of open heart surgeries, since we have been through 6 now with Grace, it is easy for us to be quick to say "let's do it" for the sake of getting as much cancer out as possible, but the reality is, it is a major surgery that is not without consequence) for just one lymph node that we can hopefully address with PRRT (that's the targeted radiation that would likely require us to travel internationally for), also when you open the belly it is considered a "dirty" surgery (lots of germs from the gut, etc), so opening the chest cavity at the same time could increase the risk for infection.  Please pray the Dr's would make the best decision on this issue (to open the chest or not) and that we would have peace either way.  
-Please pray they are able to get every bit of cancer during surgery (outside of the liver and the lymph node by the heart, if they don't go after that of course) and for a smooth recovery.

Andrew's Army, we can't thank y'all enough for joining us on the battlefield!  We truly covet your prayers troops!!!  (((HUGS)))

Jeremiah 32:17 "Ah, Lord God! It is You who have made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too hard for you!"

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!