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.