Wednesday, August 16, 2017

Hope on!

Precious Andrew’s Army, it’s been a few weeks since I have posted on the blog, for which I apologize.  I just haven’t found even a few seconds to do so.  This past weekend, David and I went to California for David’s 20 year high school reunion.  It just so happens that some of my very best friends went to high school with David (or a high school near by).  We had such a blast getting away just us two for 48 hours (I just love time with my man), spending time in our old stomping grounds that will always feel like home, and spending time with dear friends.  

LOVE these girls!  Check out the perfect shirt they had made for me.  It says #But God on the front and all different titles from various blog posts on the back!

It's a tradition...  lunch on the pier at Ruby's!

Dinner and lots of laughs with some dear friends!

My hot date ;-)

Two out of three of my Cali besties!  

The guys!

My Mother and Father in Love that held down the fort while we were gone!

Andrew started Afinitor three weeks ago now and so far so good, in term of its physical toll on Andrew.  While he is a little more tired and has to do a super nasty mouth wash 3-4 times a day to prevent awful canker sores, he’s doing good!  He is still joyful and full of energy (energy that can only be explained by God because there is a giant war going on in his body).  He got his monthly shot in his butt this week and despite it being very painful he was still very brave.  The shot has to go deep into the muscle (it’s a 19 gauge... very thick needle and the medication is very viscous, so it doesn't go in fast and it burns going in).  The shot is supposed to help with pain and (hopefully) halt or slow the progression of his cancer.  We won't know until early October if the Afinitor is working (it isn’t easy waiting 3 months to see if a particular medication is even touching the cancer) because that is when he will get another scan.  We are still waiting to hear back from Iowa as to if the PRRT trial is open and available to Andrew.  Without the power of the living God being unleashed through these medications/treatments it will all be in vain, so will you please join us in praying that the Lord would use these medications/treatments to wreak havoc on Andrew’s cancer and shut it down?

Love this picture!  What would you guess they are watching?

Grace got to return to her happy (Gigi's Playhouse) place now that she is past her sternal precaution from surgery which includes staying away from germs.  The lesson was on dinosaurs.  They are digging for dinosaur bones of course!

God has taught me a lot over the past couple weeks, as to how I’m suppose to endure this journey, because one thing that is difficult to wrap my mind around is that there is a high likelihood that Andrew will battle this disease for the rest of his life.  What I mean by that is, Neuroendocrine Tumor cancer is very different than many other cancers.  With many cancers you are diagnosed, there is a protocol to treat that you start immediately, and you can hope that at a certain point and time (at the conclusion of the protocol) that you are NED (no evidence of disease) and you stay that way.  Andrew’s type of cancer doesn’t come with a protocol and has no cure to date, which means the strategy is to knock the cancer down as long as possible and when it rears its ugly head again, you try and knock it down again, and again, and again.  There aren’t many treatment options (although there has been a handful of new treatments over the past 5 years, compared to the one or two that were available for the previous 30 years), so the other hope is that your cancer will respond to the available treatments because the options are limited.  There are Neuroendocrine Tumor patients that have received the news that they are NED; however, at this point the cancer returns 100% of the time.  All that to say, if the Lord allows us to hang on to our boy for a long time we will likely be battling cancer the entire time; the cancer journey will likely not end for us while Andrew has an earthly body.  Trust me when I tell you, we have full confidence and hope that God can miraculously heal our boy and that is exactly what we are praying for and to be honest, we don't even care how He does it (cast out cancer with a mere command, after all He created the world by just speaking it into being, so that would be nothing for Him, or if he uses Drs and medications).  Here is where the enemy gets busy, speaking lies into my mind…  lies like “He can heal Andrew, but He probably won’t” or as he reminds me of how “bad” his cancer is and the fact that so far the chemo we tried hasn’t worked, surgery didn’t go as we had hoped and prayed for “so it’s a sign of what’s to come, nothing is going to work.”  Throughout this journey, which began on Feb 22nd of this year, I have asked God to give me some sort of sign as to where we are going, to prepare my heart for what’s to come, and there have been a couple of times that I felt like He spoke very clearly to me, but then I find myself questioning Him “God was that really from you or was that something I dreamed up”…  you know the doubt or questions for clarity.  A couple weeks ago, I was going through a moment or two or three of brokenness (periodically, when I find myself overcome with sadness, frustration, or fear I will have to wait until I have time alone, which is most often in my car, when I can listen to my playlist of songs that allow me to experience brokenness and weep and as the playlist goes on be built up with truth and hope) and I was pleading with God, asking Him to speak to me and help me see where we were headed.  In His wisdom and tenderness He very clearly told me to just trust Him.  At first that answer felt too short and simple, after all that’s exactly what He tells His people all throughout scripture.  Maybe I was hoping for something “new,” but that is when God tenderly and very accurately reminded me that even if He told me what was ahead I would still have questions, I would still ask Him if I had heard Him right, to clarify, etc, so His answer of “trust me” was exactly what I needed to be reminded.  It was in that moment I decided to hope on, hope for a long life for Andrew (if He has other plans for Andrew’s future His grace will be sufficient for that time), hope on until God says otherwise. I will trust Him.  You know those are fighting words for the enemy, so the temptation bombs of fear will continue to fly with increased accuracy, so will you please pray that I/we can put on our armor for battle and hold on to hope, despite the whizzing of bombs past our heads and the smell of smoke in the air?

This about sums it up!

Praying God's favor over each of you!  Praying you know how much God loves you and how much the Ross family loves you too!!!

Wednesday, August 2, 2017

Regional Champs

I intended to update the blog this weekend, but we ended up going out of town at the last minute and didn't get home until late Sunday night.  This weekend was a blast, in that at the last minute Abby got a chance to play in a 3v3 State Championship Tournament because one of the sweet girls on the team broke her arm a couple days before the tournament.  Abby was super excited to get to play with some of her new teammates and we were excited to get out of town as a family to do something that was not centered around Dr's appointments, surgery, heart defects, or cancer...  we got to have a pretty "normal" family weekend!  We laughed a lot, got to meet some of Abby's new teammates and their families (who couldn't have been sweeter), and the cherry on the top was that their team won the tournament!!!

Andrew and Grace were the team mascots at Abby's tournament this weekend!

-Abby had her appointment with the spine specialist yesterday and God showed off big time...  the doctor said Abby's back is totally fine!  He said Abby does have a sway back, but it's just the way she was made (just like her Daddy's body) and not a problem.  Giant praises for a piece of good news!!!

-Andrew started his new chemo treatment last Monday and so far so good in terms of side effects (we just don't know if it's working yet).  He did get his first canker sore yesterday, so we need to do a better job of using his steroid mouth wash (it's hard because he hates it) multiple times a day.  His pain has been pretty well managed with only a few episodes of breakthrough/really bad pain, which is another huge praise!!!  Will you please pray the mouth sores don't get worse because that is what often times causes patients to have to take a break from the medication because it can become unbearable.  Please also pray that we can continue to keep his pain well controlled and even more than that, we would see some improvement in his pain because the treatment is working.  That would be crazy awesome.

I was pretty defeated after our appointment with Andrew's Oncologist here in Texas last week because he seemed to lack hope.  God reminded me that I shouldn't be surprised he doesn't share in the same level of hope we have because his hope isn't in Christ.  We are going to hope on with crazy big hope because we serve a God that is bigger than our definition of whatever crazy hope is.  As it says in scripture... to Him who can do exceedingly, abundantly, beyond anything we can think or imagine, that is Who we are placing our hope in!  When I see, read, or hear y'all share how you are hoping on with us, it is water to my parched soul, so thank you and please continue to join us in hoping on!  #butGod

At Andrew's last blood draw, his liver enzymes were 10x the upper limit of normal :-/, so that is one of the reasons we had to tinker with his pain meds last week in an effort to pull back on the use of Tylenol.  Please pray his constant use of Tylenol was the cause of his elevated liver enzymes or that it was just an isolated incident on this lab draw, otherwise this could be a sign of his liver function being impacted by all of the lesions in his liver. **** Just got lab results back and another HUGE praise is in order...  his liver enzymes are normal!!!

Any time Grace tries to snuggle the dogs she asks us to take a picture

Last week, David and the kids went out to my sister-in-law's house in the "country" and the kids got to enjoy driving ATV's and feeding the cows

We hope and pray you all have an awesome, God-honoring, Spirit-filled week!

Sunday, July 23, 2017

Giving thanks in all circumstances

Andrew's recovery has gone well and his pain has been well controlled making us wonder if the removal of his gallbladder and celiac block has helped.  David and I questioned when we should try to back off on some of his pain medications to get a better idea as to his pain status, but weren't ready to pull the trigger yet.  We really try to only have one of us take the lead on the kids' medications because it is far too easy to miscommunicate and risk double dosing either Grace or Andrew, which would be very dangerous in either case.  David is the one who takes the lead on administering the medications, unless he isn't home, in which case he is good about making sure I know what is needed and when.  99% of the time, David does a phenomenal job at being the Ross family pharmacist, however, he is human and in his humanness forgot to give Andrew two of his most important pain medications in the middle of the night and instead gave him Tylenol.  Andrew woke up in excruciating pain that lasted close to 6 hours, despite us giving him the medications he missed and a couple doses of a rescue medication (once we get behind the pain it's SO hard to catch up).  I was heartbroken and discouraged because it was evidence that his pain is still very much present despite the surgical intervention :-(.  Our family has to be purposeful about living out Philippians 4:6-7,

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

and 1 Thessalonians 5:18- 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

because an attitude of gratitude is the only way to keep our heart and minds fixed on Him...  His heart, His character, His faithfulness, His relentless love for us, not the mess in front of us.  In the face of this disappointment, we have so much to PRAISE the Lord for:

-they changed up his pain medication in Iowa (not even at our request, God just knew the hope of our heart and orchestrated it) which eliminated Ocycodone and Hydrocodone from his pain management regimen and the result has been that our boy is back.  The personality changes we had seen in Andrew that were really difficult to understand and know how to address have improved substantially with the change in pain medication.  PRIASE THE LORD!!!  We also have a better understanding that the reason Andrew is so much harder on Abigail than he's ever been before is because she is the closest person to him.  You know the saying that you take things out on the people closest to you?  Well, Abigail is his best friend and the one person (besides us, as his parents) he knows will take anything he throws at her because of her unwavering love and commitment to him.  But boy, it's hard for a 10 year old to grasp such a huge concept, but we have seen the Lord move in big ways in her heart and even more so in Andrew's heart as we have been covering this situation in prayer as a family.

-David came to me last week in Iowa and said he felt like he needed to quit his job as a teacher this upcoming school year.  He said that his first ministry/priority is our family and he didn't think he could give our family what we needed through this storm while continuing to work, since Andrew has a ton of Dr appointments, scans, may need to do school at home on days he is unable to physically go to school or stay at school all day, etc.  His school has been more than supportive, but he also didn't want to put a strain on them constantly having to get subs, etc.  After much prayer, the decision was pretty simple and clear that for this season, quitting his job was the right thing to do and I have to say I feel like the luckiest girl in the world to have a man that is sensitive to the Lord's leading and puts his family first without a second thought.  A man's job is to provide for his family without question, but what does that provision mean exactly?  I think the world tells us that means bringing home the biggest paycheck possible, but I would argue that providing for your family's spiritual, emotional, and physical needs/health trumps any amount of money (assuming the family's basic needs are provided for financially of course, which by God's grace my job takes care of that, especially that critical component of great health insurance).  There are so many facets of this journey that can take us out at the knees on a daily basis, but David is diligent and steadfast in leading us as we stand firm, putting on the armor of God and going to battle daily.  In addition to leading our family, David not working will allow him to spend more time serving at church, maybe put some time into training for some up coming races, etc.

-So many of you have shared stories about how your faith has been strengthened by our journey, it is those stories that fuel us to push on.  If God uses our journey to draw even just one person to the Lord, then it's worth it.  We pray you will hold tight to Him with unwavering hope as you consider how deeply loved and treasured you are by your Heavenly Daddy!  Please continue to join us in clinging to hope beyond hope that He is able and has a perfect plan that is for our good and His glory.

-Each of you, each member of Andrew's Army, are a gift as you continue to carry us by providing for seen and unseen needs and by faithfully lifting us up in prayer privately and corporately...  even showing up on our front lawn to pray with us as we headed out to Iowa.  That evening of prayer and worship was something we will never forget!

 One of our pastors reminding Andrew of God's truth and promises...

 In case you didn't see it on the news or on Facebook, we had the most amazing surprise pep rally for our homecoming from Iowa on Sunday.  You can check it out here and fly Southwest Airlines for every aviation need you have because they have demonstrated time and time again that they are a passenger/customer first airline.  They are in the business of making travel easy, affordable, and have a servants heart the size of Texas.  

One of the coolest things about this surprise was as we all exited the plane, absolutely exhausted from a loooong day of travel and the week we had in Iowa, we walked off the plane and into the arms of some of our dearest friends...  each one of our kiddos had special friends there, Gracie included!

-We praise the Lord for His promises...

-When you see God writing a story that can only be explained by a perfect author...  For those of you that don't know Andrew's almost 82 year old best friend, meet Mr. Alan!  These two are always looking forward to their next playdate where they could tell stories, illustrate those stories, go on adventures, share tears, and tell more stories for endless hours.  God has united their hearts (as well as his precious wife, Mrs. Kathy and Abigail) for such a time as this.  Praising the Lord for godly men and women who know both suffering and the goodness and faithfulness of our God intimately and who are committed to loving and discipling our children like they are their own.

Meet Scar Neck the Encourager (Alan had surgery on his carotid artery earlier this year) and Scar Belly the Brave proudly displaying their battle wounds.  

I can only imagine the story being told here...

-How cute and perfect is this shirt?!?! I absolutely adore it!!!  Thank you Elise from Charm and Grace!!!!!!!!!!!!!!!!!

***Now that we have given thanks, here are a couple immediate PRAYER REQUESTS:
-Lord willing, Andrew will start his next round of therapy on Monday (tomorrow).  It's a therapy called Everolimus.  He has to take it for 3 months straight without any breaks, unless he has unbearable side effects and needs a break.  The most common side effects are mouth sores, hair can turn white, increase in cholesterol, nausea/vomiting, fatigue, etc.  Will you please pray this medication goes to war with this wretched cancer, causing the tumors to stop growing and tumor regression (shrinking) that is so incredible the only explantation would be God?  Please also pray the side effects would be minimal and totally tolerable.  It is such a blow to find out that the poison your baby took for 4 months didn't touch the cancer and it continued to grow in spite of it.  Please pray that is not the case with this therapy.  

You would think we are due for a routine well check where we are told that everything looks good, see you next year.  Yeah, well, once again God showed us He has a sense of humor...  At Abigail's 10 year old well check she failed her hearing test due to fluid on her ears (we are praying it's just allergy related and will clear on it's own), she had protein in her urine (nurse said that can happen to kids that are really athletic), so we retested the next day and it was fine (praise the Lord), and the Dr checked her spine and sent us for an x-ray to see if she has scoliosis.  The Dr said she's seen in kids that swim that on their dominant side they can have bigger muscles which may make it look like scoliosis.  The X-ray revealed she doesn't have scoliosis, but she does have Spondylothesis (and something else) which is where one bone in your back slides forward over the bone below it.  Praise the Lord it hasn't caused her any pain and it doesn't sound like there is much they do except physical therapy, but we have to see a spine specialist on July 31st.  Will you please pray that somehow it was a misdiagnosis and that her back never gives her any trouble because as you know Abigail is a super athletic kid.  She would be devastated if she couldn't play soccer, basketball, etc some day.  Trusting God's got it because well, He does and He knows we are fresh out of energy and the mental and emotional capacity to handle any more shenanigans.  

Friday, July 14, 2017

Onward and Upward

We will praise Him in the storm! We are super grateful that Andrew is a ton more comfortable today (getting up and down and all around... evening crouching down and hiding behind his hospital bed during a game of hide and seek with Abby and Grace)! So far, it appears the transition to oral pain meds has gone well. Please pray the pain relief continues.  Lord willing, Andrew will be discharged tomorrow (Saturday), so we have arranged to all fly home together on Sunday 🙌🏻.  Please pray nothing thwarts those plans. We visited with Andrew's oncologist here for a good 45 minutes this afternoon and the plan is for Andrew to start Everolimus (a different chemotherapy), not the more aggressive therapy we initially talked about because she is concerned about liver toxicity from doing that chemo regimen and then PRRT.  After 3 months of Everolimus, Andrew would have a scan to see if it's working and if so continue until it stops, although if it's not then, Lord willing, she should have a protocol/study open for PRRT in children here in Iowa sometime in the next couple of months (Iowa sounds WAAAAY better than having to travel internationally every 6 weeks)! In the mean time, our precious and brilliant friend at MD Anderson and his team are doing a full genetic sequencing on Andrew's tumor to help guide us as to which therapies will be effective and hopefully stay one step ahead of this dreadful disease.  We trust that our plan B is God's plan A and He knows best, so please pray for supernatural wisdom, hope, and skill for everyone involved in taking care of Andrew and peace for us in the process.  It feels like we've gotten a lot of no's lately, please pray for a whole lot of yes'... yes this drug is working, yes it is being well tolerated (there are some not so fun side effects associated with the new chemo, with mouth sores being the worst, diarrhea, nausea, and hair turning white, etc), yes prrt is available in Iowa, yes the tumors have shrunk, yes we can remove the tumors and lymph nodes, yes there is no evidence of disease... you know, like that 😉.  #butGod #Heisable

I will post updated pics when we are home and I can use our computer instead of my phone.

We feel your prayers, PLEASE keep them coming! We need them! We love you troops!!!

Thursday, July 13, 2017

Post op day 2 & 3

As always, thank you so much for your prayers and support!  This journey would be unbearable without God using each and every one of you to lift us up. Andrew was doing ok yesterday and much better today. He was super uncomfortable and discouraged... lots of "why would God allow all this" type questions, but we had a great time of prayer as a family last night and refocusing our hearts and minds on God and how He desires us to see this situation.  It's broken our hearts (especially Abby's, who spent 9 hours at the hospital yesterday, because she didn't want to leave Andrew's side) the past couple days that he hasn't wanted to be touched or talk with us and he just looks so sad, but we started seeing some glimpses of our boy break through last night and during our time of prayer he asked me to snuggle him and rub his leg (my heart about burst with joy)!  Andrew's feelings last night stemmed from the anticipation of having to get an extremely painful injection in his butt and on top of everything else he has gone through that just sent him over the edge. By God's Grace, Andrew was super tough for that injection (it was all God)  and has a better attitude since then.

Andrew woke up today and was doing okay, but his cousins arrived to visit him this afternoon and all of a sudden he wanted to show off in front of them. He got out of bed by himself for the first time, walked without assistance for the first time, stood for a long time, and walked around the entire unit.  Andrew walked more in a 20 minute period than he had altogether since surgery.  It's amazing how quickly things turned around with some cousin intervention.

In order for Andrew to move towards discharge we need to make sure he is eating steadily and can transition from IV pain meds to oral meds (which will be happening this afternoon). Will you please pray for a smooth transition and discharge as soon as it's safe (we know better than to try to push it 😬).  The girls and I fly home on Saturday, so I can Lord willing go to back to work on Monday and David and Andrew will fly home upon discharge (please pray for all of those logistics). I have one other big praise and prayer request...  Andrew's oncologist here in Iowa (she's the one calling the shots on his treatment) came by this morning to discuss the next steps. At the conclusion of our conversation she said "I know you guys are praying people, I want to ask that you pray for us as we make decisions on how to best treat Andrew?"  UMMMMM... YES! WE CAN DO THAT!!!  Praise the Lord that she would know where wisdom comes from! Will you please pray for just that... for God to give her and the rest of Andrew's team (us included) wisdom and skill in every decision they make concerning Andrew's health. Keep praying for a miracle too 😉. Since the beginning of this journey, I have felt the Lord remind me repeatedly when it feels like the wheels have fallen off... the bigger the mess, the bigger the miracle. #butGod

(Sorry, we would include pictures, but when posting from the phone it doesn't quite work the way it is supposed to)!

Tuesday, July 11, 2017

Post surgery... new direction

Thank you to everyone for all of your prayers and support throughout our ups and downs of yesterday. We literally felt and continue to feel all the prayers... yesterday ended so much better than I imagined possible. God used many situations to remind us that He hasn't fallen off His throne and His purpose for our heartache is so much bigger than we can comprehend (doesn't mean it's easy though and the "what if" monster still won't shut up, but it's more of a whisper now verses a shout).  Abby handled the conversation about Andrew's surgery and the next steps great and showed so much spiritual maturity.  This is the same kid that randomly texted us a scripture verse while we were in the fiery furnace yesterday, trying to decide with the surgeon what to do with Andrew while he was opened up in the OR (whipple or not), however, she had no earthly idea we were sitting in that situation. Then, later that night responded to the news about Andrew's surgery by reminding me of the lyrics to the song that was playing in the background "His plans are for me."  While we are worried about how to minister to her she is busy ministering to us.  We still need to talk to Andrew about how surgery went, please pray he has peace about it too. He has been super uncomfortable to the point he doesn't want to be touched or talk (it breaks our heart), so we haven't been able to talk to him much.

David spoke to Dr Liu in Denver late last night and it was comforting to hear that he is still very much against the whipple, just as he was when we met with him a few months ago, and was happy to hear that the surgeons did not move forward with the whipple.  We are beginning to see the pieces of the next step sort of becoming a little more clear. We spoke with Andrew's oncologist here in Iowa yesterday evening and we came up with a plan for next steps, since we are not giving up on this fight. The next step is to get full genomic testing done asap in an effort to figure out what targets Andrew's tumors have that we can go after (that process is already underway as the tissue samples were overnighted to MD Anderson yesterday). Depending on what is found during this sequencing, we may start a more aggressive chemo which will be much harder on his body, he will definitely lose his hair, etc, or another type of chemo, or a targeted therapy, and at some point PRRT. Our oncologist said when her and the surgeon spoke yesterday after surgery, the surgeon  said they may be able to go after the tumors again if we are able to shrink them (he didn't mention that to us, but we were elated to hear he mentioned that to her).  We have learned not to hold on too tightly to what we think the next best steps/goals are because, well we aren't God (which is actually a great thing), so pray God makes the next step clear and we have peace about it (especially Andrew). I just hate all that our sweet boy has to endure, but I know God hates it too.

Yesterday, I was begging God to show me His hand in all of this and help me see how it can be in any way good and He answered by using sweet soldiers sending us messages about how our journey has bolstered their faith or their children's faith, serving as a powerful reminder that we don't suffer in vain (although, it's still crazy hard 😉).  Also, reading your comments of hope (not giving up or being defeteated) and determination to fight along with us literally carried my limping soul yesterday, so thank you for that and please continue to join us in fixing our eyes squarely on Jesus and fighting on!

They are going to try to get Andrew up and sitting in a chair now, so I have to run, but know we love and appreciate each of you more than you know.

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!

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!