Living in the eye of the storm!

Well the past 2 weeks have been a whirl wind...  literally!

Well hurricane Harvey came in with a vengeance as it made landfall in South Texas dumping 51+ inches of rain (that's what we typically get in an entire year).  The first two nights we got almost no sleep because our phone alerts kept going off with tornado warnings, so we had the kids sheltering in place with us on the floor of our bedroom.  The next couple days were filled with prayers that the rain would stop, even if for just a short period of time, and give our poor city a much needed break.  Our neighborhood was on a voluntary evacuation, so we had to decide whether to stay put and ride it out or evacuate.  After much prayer, evacuating at that point almost seemed more dangerous than staying because most streets (including many in our neighborhood) were closed/impassable.  It was a difficult decision for every family, but our decision had substantial ramifications to consider.  We had to take into account the fact that we have two medically fragile children who can't go without their medication, if we were trapped for an extended period of time (beyond what we had already prepared for), need to have access to a hospital if they were to get ill, and can't afford to get overheated if we lost power (Andrew has had a hard time regulating his body temp lately.  When he gets over heated it takes him all day to actually cool down).  Also, we have a one story house, so we needed a two story option in the event our house took on water.  Thanks to our dear friends who recently moved, we had a solid plan B in place.  Their house is down the street from ours, so we blew up mattresses in case we needed to float our stuff down there.  Their house is vacant, has two stories and a generator, so we could have stayed there if our house flooded from the hurricane itself or the giant and powerful Brazos river (which we live right next to) breaching the levee.  We moved as much of our house as possible off the floor, in case of flooding, and everytime I pictured what we would evacuate with, if we did flood, all I could picture was David and I, carrying our three kids, two dogs and Andrew and Grace's bag of medication.  My biggest fear (besides our safety of course) was what would happen if Andrew was without the 20+ pills he takes a day, many of which are heavy duty pain meds that keep him from being in agonizing pain.  By God's grace, our street didn't flood at all; however, just around the corner from our house the water was waste deep, which meant we were safe, but stuck in our neighborhood for 4 days.  SO many others were not as fortunate and have experienced great devastation.  Our hearts are broken yet hopeful for them!

The Brazos River is on the left and that little patch of grass (our levee) is what is protecting our neighborhood from becoming one with the Brazos :-/

This was down the street from our house...

This was our street...

This was one of the streets where I work :-(

My mom happened to be in town visiting that weekend from California, so her trip was obviously extended since we were stuck and most roads were impassable.  Once the water in our neighborhood receded enough to get out, we drove my mom to Austin so she could fly home, since our Houston airports were closed.  We made a mini family vacation out of our trip to Austin, which was a huge blessing.  We went to an indoor bounce house/playscape type area and took a tour of some pretty amazing caverns.  We love Austin because so many of their restaurants, etc remind us of home, all the way down to their convenience stores...  they have 7 Elevens!  Back to the caverns, it was a mile and a half(ish) tour that Andrew especially absolutely LOVED.

Inside the cavern...

At one point, the tour guide pointed out an area where they do Wild Tours (this is a tour that lasts many hours and requires you to climb through a bunch of tiny crawl spaces, etc).  I could barely look over the edge at the tiny crawl space that he was referencing.  He said that you have to be 13 years old or older for that tour, to which Andrew excitedly exclaimed "Mommy, when I'm 13, will you do this tour with me?"  I told him I would be his biggest cheerleader on that tour, but that was a tour better suited for daddy (I'm a pretty daring person, but I'm only mildly claustrophobic and there is NO WAY I could do that tour without freaking out and then how could I help my boy through it).  He asked David if he would do it with him and David of course said yes.  Needless to say, I spent the rest of the tour talking to God, or maybe begging God is more accurate, to please let Andrew make it to 13 years old and be healthy enough to do that tour!  These are the types of battles that wage war in my mind daily.  It is at that point I have to remind myself of God's perfect plan and hope on!

As I hope many of you saw on the news, Harvey was devastating, but it was no match for Texans (and the countless others who came from across the country to help and are now considered Texans as well).  I have to say that I'm not surprised a bit by the sacrificial love that people have shown and continue to show to complete strangers because we have been on the receiving end of that love and commitment many times since Grace was born and even more so since Andrew's diagnosis.  However, it was on a scale of epic proportion.  I don't think our nation has ever seen so much personal sacrifice (from one's safety, time, energy, property, and above all their lives) from first responders and volunteers alike.  What a beautiful picture of what it means to be the hands and feet of Jesus from the initial rescues and to the clean up that is far from over.  Once we got my mom taken care of, we couldn't wait to serve our community.  Words can't express the joy we experienced serving together as a family (our own family and our church family, The Sanctuary Fellowship) all day Saturday and Sunday.  As much as Andrew loves serving, he knows his limitations and had to forgo the opportunity to serve a city about 40 minutes from our house that was devastated by the storm.  They not only had many feet of water in their homes, but they continue to be without power or water.  David helped muck houses, while Abby and I helped unload an 18 wheeler full of supplies, set up a distribution center (in the parking lot of a strip center), and love on a multitude of people that came through in desperate need of everything from water and food to diapers.  This little girl of mine literally only sat down for 5 minutes over 5 hours of running around serving in the HOT Texas heat and that's only because I insisted that she get in the shade and hydrate. It was impossible to get her to take a break and she was begging to help a little longer when we had to leave that evening because we needed to get Andrew and Grace from my parents.  The Lord used her and her 10 years of experience in this world to minister to me a lot the past couple weeks.

Best Sunday afternoon... serving alongside our amazing church family was such a joy and honor! 

The 18 wheeler full of supplies for Wharton!

Love this pic of my two favorite #17 soccer players working together on an assembly line used to unload the truck!

6 hours into serving a sweet community and still smiling!  This kid inspires me!

Just some of what was pulled out of the house David was working on...

This was Saturday when Abby and I perfected our personal shopper skills in preparation for Sunday!

As I look back on the past week, I'm surprised about the level of peace we had about it all.  I guess I shouldn't be surprised because the Bible talks about that type of peace, you know the type that surpasses comprehension?  As I thanked God for His peace and protection, I realized that maybe the reason we had a measure of peace during Harvey is because we live daily in the storm these days.  If you ask anyone in the Houston area to describe what they experienced during Harvey, my guess is they would recount feelings of fear, uncertainty, being desperate for information that can guide their decision making in keeping their family safe, camaraderie with those they battled through Harvey with, exhaustion, more exhaustion, concern for what the next hours or days would bring, feeling out of control, the need for the support of family and friends, and so much more.  Once Harvey moved on, the river crested, and we could all begin the process of cleaning up and rebuilding, I would hear or read people talking about their new found ability to take a sigh of relief and get some rest.  I wondered why I didn't experience those same feelings (don't get me wrong, I'm SUPER grateful we were safe and our house was dry and continue to praise the Lord for it) and that's when it hit me; when you are battling for your life or the life of a loved one (especially your child), you literally move from one battle field to another.  No time to exhale because cancer doesn't take a break just because Harvey is in town, cancer doesn't give you time to clean up the mess, take a little vacation, and then resume the battle when you are rested.  No, cancer rages on without regard for anything or anyone else.  I pray my feeble attempt at trying to paint a picture for you about what the life of a family battling cancer, especially pediatric cancer, looks like will help you get into the mind of the far too many children and their families who are in the fight of their lives as you read this.
September is childhood cancer awareness month.  Will you please join us in helping raise awareness of the unmet need for additional funding for pediatric cancer research?  Every two minutes, a child is diagnosed with cancer.  10,000 children in the US under the age of 15 will get a cancer diagnosis.  1 in 5 children with cancer will not survive.  For children who survive childhood cancer, the battle is never over.  Currently, only 4% of cancer research funding goes to researching new therapies for children.  Will you go gold in September for childhood cancer by changing your profile picture on Facebook, donating to a foundation that raises and donates all its money to pediatric cancer research (our favorite foundation is Triumph Over Kid Cancer.  You can learn more about this amazing organization at http://triumphoverkidcancer.org), go out of your way to encourage/lean in to a family you know that is in the thick of the battle (y'all have done such an awesome job of leaning into us, please don't stop... we need you), pray like crazy for healing, etc.....  just "do that one thing", that one thing that will make a difference no matter how big or small!

-The truth is CANCER SUCKS (that word might offend some, but let's be honest, that word is mild compared to how I really feel about this dreaded disease), but GOD IS WAY BIGGER than cancer (or anything else you might be going through)!  #butGod

-"She holds onto hope for God is forever faithful."  1 Corinthians 1:9  #Hopeon

-"Hope is a verb with sleeves rolled up!"  #Dothatonething

****Update on Andrew and prayer request- Andrew's last blood draw revealed that his liver enzymes are back to a crazy high level (like 10x what they should be).  Will you please pray that his next blood draw (this Wednesday) reveals labs that look totally normal?  I'm not sure what we will have to do if they are still high, but we can't afford for his liver to be compromised because he is in no way a candidate for a new one.  Please also pray we are able to continue to keep Andrew's tummy pain under control.  Here is a glimpse of what our morning looked like today... tummy pain is brutal!

Grace has a blood draw on Wednesday too, please pray her Warfarin levels are within the right range and stay there.  THANK YOU!!!

How could I forget...  we also celebrated Grace's 5th birthday last week...

And David's too!

Praying for and praising God for each of you daily!  Thank you for standing by us always!

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!!!

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!

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,

6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 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.  

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!!!

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)!

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.