Journal

Journal entry by Lori Gautreau

As I am sitting in the hotel lobby on this dreary day in Houston, I realize that I have not given any updates on Scott in a while, so here it goes... His new treatment plan began on 6/26, and ever since that day, Scott has been traveling to Houston every week for follow up appointments. These trips have been mostly quick day trips - where he only spends about 30 minutes at MD Anderson and then he’s back on the road heading back to Baton Rouge. Thankfully, these day trips are behind us now. Today, he will be receiving his second round of the new drugs, and we will only be required to come back every three weeks for the infusions. That’s a win for us. :-)

His first round of this new treatment went rather smoothly. We were so blessed that he tolerated it well with little to no side effects.  Compared to the last treatment plan that he was on, this one has been much easier on his body. Please pray that he continues to tolerate it well and that these new drugs are working against his cancer.  Unfortunately, we will not know how his body is reacting to these new drugs until he receives his first round of scans, which is scheduled at the end of August. Until then, we continue to pray and TRUST that we are doing what is best for him. 

I know I say this every time, but THANK YOU. Without our prayer warriors, this journey would be so much more difficult. Your thoughts, words, and prayers mean the world to both of us. 


Much love and appreciation,

Lori

 
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Journal entry by Lori Gautreau

Scott traveled to Houston on the 12th to have a brief meeting with the team that will oversee his new treatment plan. Luckily, I was able to FaceTime and ask questions as needed. After meeting with the team, it became another waiting game with insurance before we could move forward and begin anything. Instead of sitting around and anxiously waiting for that call, Scott and I decided to jump in the car with the kids and take a last-minute family vacation to Lake Hamilton in Hot Springs. We know that this summer will be filled with Houston trips and no time for family vacations, so why not go before all the craziness begins?! It was just what we needed as a family and just what Scott and I needed to clear our minds and talk about what this next year may look like. While there, we received word that insurance cleared, so we scheduled our first treatment!

Scott and I will be traveling to Houston tomorrow afternoon. Before treatment begins, he will undergo multiple tests beginning early Thursday morning. The plan is for Scott to undergo his first round of treatment Friday afternoon. Unfortunately, I cannot be with him during any of his appointments nor his treatment, but I will be nearby in the hotel connected to MD Anderson. Our plan is to drive back home Friday evening after treatment if everything goes well.

Scott’s new treatment plan will consist of a thirty-minute infusion of a different immunotherapy drug. In addition to receiving this therapy every three weeks, he will be taking a pill twice daily. For the first month after treatment, he will be going to Houston weekly for monitoring and tests, but after that, he will only be traveling every three weeks for the infusions. We know that the side effects of this new treatment will be similar to the last (body aches, fever, flu-like), but we are hopeful that it will not be so hard on his body this time. However, every patient is different, and we will not really know how it affects him until he lives it. Please pray that Scott CAN tolerate these drugs and that his body WILL respond to them!

Starting something new is always scary, but we both have faith that this is the path we should be traveling. If you read my posts in the past, you may recall a God wink that I mentioned while meeting with a doctor discussing several options if we were to get to this point. See past post below:

During our last appointment when the many options of treatment plans were being presented to us, I zoned out for a minute and just started praying. I once again asked God for clarity – to help us determine the best path for Scott. I was beginning to question everything again – should we even be here discussing these options? Immediately after praying, the doctor looked at us and said, “You know, there is a bible verse that I always like to read. It’s the one about being at peace and how God’s peace surpasses all understanding.” I couldn’t help but smile; this is one of my favorite bible verses and one that I refer to quite often. I was like, “Okay, God, I hear you!” It was another one of those God winks letting me know that He DOES hear me and that it is all going to be okay.

This new treatment plan is the same one that we were discussing on that day and it is overseen by the same doctor. :)  We both feel confident that we have been led here for a reason. Scott is a fighter and is ready to do whatever it takes to beat this cancer. As his wife and cheerleader, I will do whatever it takes and more to help him along the way.

Thank you all so much for your continued prayers. Scott and I feel every single one of them. 

Blessings to you all,

Lori

"...Be anxious for nothing, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Phillippians 4:7

"Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths." Proverbs 3:5-6

It's hard for us to see God's vision for our lives, but if we trust in Him and have faith, He will guide us down the road that He's built especially for us.

Journal entry by Lori Gautreau

Well, yesterday did not go as we hoped. I was hoping to update everyone with the good news that the cancer has remained the same and that life as normal could go on for a while, but it looks like the road to treatment will be traveled once again.  Scott’s attitude about everything is so inspiring to me.  He is the type of person that takes everything in stride and views this journey as an opportunity to grow in faith and help others.  I, myself, needed yesterday to just process everything again and give myself some time to sulk and even be a little angry. I am much better today though. 😊 We both know that the news could have been worse, so we will continue to focus on all the positives and blessings given to us throughout this journey. There is just always that little piece of hope that lives within us to one day hear that they see nothing in his body to worry about.  We will hear it one day though…I just know it.  God is not quite done writing this chapter of our lives, and we are okay with it. He has carried us this far, and He will continue to give us the strength to fight this battle.  

Scott met with his oncologist yesterday while Face Timing me in the hotel room.  MD Anderson is not allowing anyone to be with the patients currently, so Face Time was our only option. It is never a good sign when the conversation begins with, “Well, unfortunately, I have some not so good news.”  My heart sank, and I wanted more than anything to be there with him at that moment. I have never felt more helpless in my life; all I could do was just listen on the other end of the phone. The lymph nodes that were seen in the area where Scott had his kidney removed last year had grown according to the scans.  Fortunately, they have not grown substantially, but they have grown enough to verify that they are active cancer cells in the area.  We asked about the possibility of surgery to remove the infected lymph nodes, but our oncologist said that they are not quite big enough and surgery would not guarantee the removal of all cancer cells. There is always some good news that comes with the bad though. When asking about his lungs, the doctor did say that there was no growth that he could see in that area, so we are extremely thankful for that news. 

Our oncologist wants to continue exploring options of treatment that help Scott maintain a normal life as much as possible. Although Scott’s last treatment was rough on his body, it allowed him to be able to live a normal life.  Not many patients can do that with Stage IV Cancer, so we are so incredibly thankful and blessed for that.   There is a trial at MD Anderson that our oncologist would like him to try.  Of course, if it does not work, we can stop it whenever we want and move on to something different. Moving forward, Scott will meet with a new team of doctors tomorrow at noon to discuss this new treatment plan.  We are not sure of the logistics just yet, but we will hopefully have all the answers after tomorrow’s appointment.  We do know that this treatment will not be chemotherapy but immunotherapy again.  The infusions will be much shorter than his last treatment (30 min-1 hour vs. 6-8 hours).  He will also be taking a daily pill along with the infusions.  We are still unsure how often we will travel to Houston to receive them though.  We are hoping to begin this treatment as soon as possible, but we will not know the start date until tomorrow’s meeting.  More than likely he will have to undergo a series of tests and another brain MRI before anything begins.  We are hoping to get the ball rolling as soon as possible. We should know more tomorrow.   

Please continue to keep Scott in your prayers.  His spirits are high, and I truly believe that is because of your prayers and because of our loving, supportive community.  Please pray that this treatment is what we need to kick cancer’s butt.  Also, please keep our children in your prayers.  We have not shared the news with them yet because we are waiting to do so in person.  Talking to our children about their father’s cancer has by far been one of the toughest things for me throughout this process. From day one, Scott and I agreed that we would be as open and honest with them as possible so that they would feel comfortable enough to talk about it when needed and ask questions.  I am dreading this talk even more because they have loved us being home these past few months without having to leave for Houston. Having to tell them that their dad will be starting treatment again will not be easy.  Thankfully, we have a wonderful support group with family and friends that step in and make things as normal as possible for them.

Even though yesterday’s news was not what we hoped, we remain positive and feel extremely blessed.  We are ready to move forward and do whatever it takes to fight this disease.  Like we have always said, we have never once felt alone during his journey, and we know that God will continue to watch over and guide us every step of the way.  Thank you all so much for your continued prayers and support.  You, too, have helped us carry this cross, and we are forever grateful for it. We hope and pray that you remain safe and healthy during these trying times. I will do my best to keep you updated about treatment once we know more. 

Take care and God bless,

Lori

Journal entry by Lori Gautreau

It has been quite some time since I have visited or posted anything on this CaringBridge site, and I cannot help but feel anxious while being here again. Even though this pandemic/quarantine has driven us all crazy to some extent, Scott and I have been able to enjoy life without any doctor appointments, scans, bloodwork, etc.  I know that I might sound crazy typing this, but even with everything going on in this world, our lives have not felt this normal in quite some time. However, getting back on here only makes me face the harsh reality of the other life we live known as cancer. 

It has been THREE months since we have visited MD Anderson, and let me tell you, these three months may have been crazy with the pandemic, but they have also allowed us to be together as a family like never before.  This extra time together has been a blessing to us, especially since Scott has been feeling his best. Our children, Grant and Emma, have loved spending this extra time with him, and we have made so many wonderful memories that we will cherish forever. Throughout this time, we have shifted our priorities as a family, and I am not sure that this would have ever happened if this pandemic and quarantine had never occurred.  Scott and I know that the chaos of sporting events, practices, tournaments, dance, etc. will return very soon, and part of us feels thankful and excited about some normalcy again; however, we also want to remember what this time has taught us and try and keep our priorities in check when life does get back to “normal”. 

We will be leaving for MD Anderson tomorrow morning for scans and bloodwork.  Scott will be receiving scans around 3:45 tomorrow afternoon and then will be meeting with his oncologist the following day for results and possibly a plan moving forward.  These appointments will be very different than any others in the past due to Covid-19.  Although I will be traveling with him to Houston, I will not be allowed to go into MD Anderson with him. I will be staying in our hotel room that is connected to the hospital.  I will, however, be able to FaceTime with Scott and his doctors on Wednesday when he receives the news and results of his scans.  It saddens me to think that there are so many cancer patients receiving news (good and bad) and having no one there with them, and it makes me even sadder to think of those patients being dropped off for treatment alone.  With today’s circumstances, though, I understand their reasoning and concern for patients in critical condition. 

Please pray specifically for Scott’s scans to show NO new growth.  On his last set of scans in March, we received the wonderful news that nothing had changed or grown, which is why they decided to let his body rest from treatment.  The previous scans showed that the kidney cancer still possibly remained in the area where he had his kidney removed; our doctor did say that it’s possible that it is scar tissue showing up on the scans, though, so we are praying that the new scans will either show that it has shrunk or even vanished – how awesome would that be?!?! The cancer cells that traveled to his lungs had shrunk and showed no new growth.  The doctor was hopeful that these cancer cells were possibly dead cells. Please pray that they see nothing new in his lungs and that those cells remain the same. If we receive the news that we are hopeful for, we will more than likely continue surveillance with no treatment and return in 3 months for more scans.  This would be such a blessing, especially since he has not had to receive any form of treatment since January.  If the scans show otherwise, we will have to discuss new treatment options moving forward.

Either way, Scott remains hopeful and his faith has never been stronger.  We both talk about how it is completely out of our control, and we are ready to tackle whatever lies ahead.  Yes, it is scary, but we truly trust that God will take care of us and be with us every step of the way. 

Thank you so much for your continued prayers and support.  Your prayers have helped carry us through this journey, and we are forever grateful for each and every one of you.  We hope that everyone is staying well during this pandemic. 

Love to All,

Lori

Journal entry by Lori Gautreau

Scott here...

Today marks 1 year since I received the official diagnosis from the doctors that I have cancer. After going through so many tests and doing some research on my own, I certainly knew before I walked in the door that day what the diagnosis was going to be. However, no matter how well I prepared myself, it was still a surreal moment to hear the doctor say that I have stage IV metastatic renal cell carcinoma (a.k.a. kidney cancer). The words that came out of his mouth are still so vivid in my mind today, and I can still picture Lori and myself sitting in the room with the doctor feeling numb with the news and being in complete disbelief. We both were completely speechless and could not even look each other in the eyes. I remember vividly getting into our separate cars in the parking lot and watching Lori break down in her car while laying her head on the steering wheel. This all was happening so quickly and out of nowhere. We have two small children to raise together and a whole life ahead of us. Why us? Why now? It was certainly a life changing event, but as I look back on the past year, it is amazing how far we have come in this journey.

Before we ever met with an Oncologist, we were going through the motions...numerous doctor visits, test after test, results after results, etc. It was certainly a whirlwind of emotions. I remember coming home from the first ultrasound and breaking the news to Lori that there was a mass in my kidney. I balled my eyes out while Lori held me in complete disbelief. We held each other for an hour while crying and pleading to God to take it all away. You start to think and wonder, why me, what did I do to deserve this? Every day it felt like we were looking for a sliver of good news, but every time it came, so did the bad. Sometimes you could not help but think, what else could possibly go wrong?

I am the kind of person that does not like to hear medical terms, phrases, or whatever else and not understand. I spent A LOT of time researching everything on the internet. There are certainly positive outcomes out there, but when you keep getting beat down with bad news, naturally you are drawn to the negative outcomes. It was certainly easy to crawl into a hole and become depressed about it. However, about a week and half into all this, I remember standing in the shower one night and just looking up at the ceiling and asking God to give me the strength to get through this. I asked him to stand by my side like he always did and to help lead the way through this unknown battle ahead. I knew it was going to be a tough journey…the toughest fight of my life, but I was willing to fight ‘til the end. I was fighting against an invisible opponent that had already waged a war inside my body without me ever knowing.

“For I know the plans I have for you, says the Lord, plans for welfare and not for evil, to give you a future and a hope.” Jeremiah 29:11

That night was a turning point for me, and I am so thankful that it came so early in the journey. Staying positive is one of the keys to winning this war. When I walked in the door a year ago for my appointment, I had already convinced myself that I was done being sad, I was done feeling sorry for myself, done asking questions like why me….NO MORE TEARS.  I was ready to start the fight and no matter what the enemy threw at me, I was going to be ready. I was not going to be caught blindsided again. I have the best ally a person can have and the kryptonite to all evil. He was and still is my guide, and I was ready to do whatever it takes. I was not going to let this terrible disease make me another statistic. I needed to be here for my wife, my kids, my family, my friends, and I still had a whole lot of life ahead of me.

As I look back on the past year, it has been an absolutely amazing year. Sure, the situation is unfortunate, but I have learned to focus on what is important. I have learned a lot over the past year, but nothing has stuck with me more than understanding the importance of being present. Not living in the future, or the past, but living here in the present in that very moment. It opened my eyes to so many little things that I appreciate more and more with each day. So many of us look past those little moments and wait for the big bang. That was me, too. Once I started focusing on being present now, I wondered how much did I actually miss through all the years? Life is fragile. Our time on earth is finite and we do not know when our last day will come. This certainly rings true today as most of us sit at our houses socially distanced from family, friends, neighbors, etc. Life as we knew it changed in the blink of an eye, and none of us know exactly when it will return to “normal”. In the meantime, let’s make the best of it. Carpe Diem! Spend time with the ones you love and do the things you could never quite find the time for.

Lori and I have so many people to be to thank for all their love and support. Our parents have been with us through every step of the way. We are blessed to have them in our lives. So many others have also given selflessly. Too many to name here, but know we are appreciative of each and every one of you. The power of prayer is amazing, and we are living proof of that. We have been blessed to have so many people praying for us. Trust me when I say that we feel each and every one of them. Lord, Thank You for every “Simon” that you have sent to help us bear this cross.

My dearest Lori, you have been my rock. No words can describe the admiration and love I have for you. You have been right by my side through every second of this battle. You are my one, true love, and I hope you know how much I appreciate you and love you. Thank you for always being there for me.

“For by grace you have been saved through faith; and this is not your own doing, it is the gift of God.” Ephesians 2:8

This journey is far from being over. We have come a long way over the past year. We are so excited and blessed for the most recent news from our past visit. We are hopeful that our next visit will be as equally great. Stay safe, stay home, please and wash your hands…

I leave you with one last prayer that I recently came across.

Memorare to St. Joseph

Remember, O Most Chaste Spouse of the Virgin Mary, that never was it known that anyone who fled to thy protection, implored thy help, or sought thy intercession was left unaided.

Inspired by this confidence, I fly unto you, my spiritual father, and beg your protection. O Foster Father of the Redeemer, despise not my petitions, but in your goodness hear and answer me. Amen.

Journal entry by Lori Gautreau

I honestly have so much to say and share, but I’m going to keep this one short. We are giving so much thanks to God and all of you for your continued prayers. Please keep praying. It’s not over yet, but we were given some unbelievable news today, and I wanted to do a quick post to update everyone.  

Short version of Scott’s follow-up today: Scott’s  scans showed the exact same thing from his last set of scans 7 weeks ago. Nothing is happening in his body right now. Our oncologist is pretty certain that the kidney cancer cells in his lungs that are still showing up on the scans are dead. DEAD!!!! I almost fell out of my chair when I heard the news! Of course, he could still have some tiny ones still alive not big enough to show on the scans, but it has been a while since anything has changed in that area, so we are hopeful nothing is happening in there right now. 

The lymph nodes in stomach are the same. They could be just dead tissue from surgery or cancer, but there’s no way of knowing unless they remove them with surgery, which our doc says is too risky at this point. As of now, Scott is just under surveillance. We won’t be going back until JUNE! for new scans. If anything changes in 3 months, we have numerous options to jump on, but there’s a chance things could stay this way for a very long time and just continue surveillance. 

The oncologist doesn’t want to put his body through unnecessary strong therapy if it’s possibly just dead cells. Scott feels great right now which is a very good sign. Quality of life is what’s important right now. They put his body through a year of the strongest immunotherapies on the market. Those drugs will remain in his system for a while. 

Of course, things could change down the road, but we are praising God for today’s news. God is so good.

We hope that everyone remains safe through this pandemic and that everyone is getting to spend a little extra time with their loved ones. Throughout this journey, we’ve learned to focus on what’s most important. We encourage you all to do the same during this time of uncertainty.

I would like to end with something a friend of mine shared with me the other day. It’s very fitting for all of us dealing with a little fear and uncertainty these days. 

Much love,
Lori

Society: What about my plans?!

God: My plans for you are always better than your own. Don't worry. I'm going to work this all out for your good.

Society: We're not going to get anything done!

God: That's the point. You know how you keep spinning your wheels—always working, moving, doing—but never feeling satisfied? I've given you permission to stop. I've cleared your calendars for you. Your worth isn't tied to busyness or accomplishment. All you have to do is take care of each other.

Society: What does this all mean?

God: It means I'm in control. It means you are human and I am God. It means I've given you a wonderful opportunity to be the light in a dark world. It means you are going to learn to rely on me.

Society: What are we supposed to do when we can't leave our homes?

God: Rest. You are always so busy and overwhelmed, crying out to me weary and exhausted. Can't you use a break from your fast-paced and over-scheduled lives? Go ahead and rest. Pray. Love your families. Be still and spend time with me.

Society: You mean we're supposed to stay home with our kids all day, every day?

God: Yes. And you're going to be just fine. This time together is a rare gift. The rush of daily life has come to a halt. Play games. Bake cookies. Work on projects you've never had the time for. Teach them kindness and grace. Show them how to endure difficult circumstances and steer them toward me.

Society: We better start hoarding anything we can get our hands on!

God: Prevention, yes. Precaution, yes. Preparedness, yes. But after that, it's time to put the needs of others before your own. When you see someone in need, help them. Offer up what you have. Do not worry about tomorrow. Haven't I always taken care of you? Now, go take care of someone else.

Society: Why is this happening?

God: To remind you that I'm in control. To bring your attention back to me. I'm bringing you together as families and neighbors. I'm showing you patience and perseverance. I'm reminding you of your purpose and priorities. Now is the time to learn and teach your children what this life is really about.

Society: We don't know who to believe.

God: Believe in me. Trust me. Ask me for wisdom and I will surely give it. I am with you always. 

Journal entry by Kim Levy

Dear All,

Prayers that everyone is staying safe and feeling well. This sudden shift in society certainly seems unreal and is somewhat unnerving. On the other hand, we get to escape from the complicated life for a while and take refuge in a more simple life. We get this gift of time with those we love the most, our family. This could be our opportunity to slow down, be still, and strengthen those bonds with one another (if our kids don't drive us bananas first- LOL).

As we listen to the news, we can find comfort in knowing that regardless of what's going on in the world around us, God remains in control. HE is in control. And during times like these, we must remind ourselves that staying connected to God can help us have calm hearts and peaceful minds.

My brother in law, Scott, is the epitome of just that. He continues to inspire us all with his Faith.
Lori and Scott will be traveling back to MD Anderson in Houston tomorrow, Tuesday, March 17th for scans.

Having no treatment for so long has been a little nerve-wracking for our family, but Scott and Lori, and Grant and Emma have been loving and enjoying normalcy for once without having to travel back and forth to Houston or dealing with any side effects from treatment. Scott is actually feeling great right now and looking great too!

The scans done Tuesday will determine Scott's plan moving forward. We are asking for prayers that the spots in the stomach have not increased in size. Unfortunately, all of the clinical trials that Scott's Oncologist wanted him on have already filled to capacity during this waiting period. But Scott and Lori are hopeful that they will have something even better available.

They will receive the scan results Wednesday afternoon and meet with the Oncologist to discuss steps about moving forward. Please pray for good scans and guidance moving forward. Big decisions will be made.

We will continue to pray for you all as well to stay safe and healthy during this unusual time. 


"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand."

Isaiah 41:10


"We put our hope in the LORD. He is our help and our shield."


Psalm 33:20

God Bless,

Kim

Journal entry by Lori Gautreau

Eleven years ago, today, Scott and I exchanged our wedding vows in front of our friends and family. “For better or worse; in sickness and in health” have never rung truer.  We both took those vows very seriously and still do, but little did we know at the time that “sickness” would mean cancer, especially only 10 years into our marriage.   

Instead of spending our anniversary on some remote island or at some fancy Italian restaurant, we spent it together at MD Anderson reminiscing about the past year.  We couldn’t help but wonder how we even ended up where we are today.  We have always been told that the first year of marriage is the hardest, but that is definitely not the case for us.  Year 10 hit us with a curve ball out of nowhere, but I can honestly say that we are stronger now than ever before.  Stronger in our faith, stronger in our marriage, and stronger as individuals. On the day that I said “I do” to Scott, I loved him wholeheartedly.  However, that love back then was only a fragment for what I feel for him today.  His faith, strength, endurance, and commitment to me and our children are something that I could have never imagined 11 years ago. 

Since today was a special day for us, we tried our best to focus on the blessings and positive things that have happened to us this past year while reminiscing about the storm.  Given the circumstances of this year, Scott has still managed to live a pretty normal life.  He has been able to work, coach, and continue be a wonderful, hands-on dad to our children.  Besides the fact that we travel to Houston regularly, we’ve been able to somewhat maintain a normal life, which we are so grateful for in the grand scheme of things.  There are so many cancer patients that do not have this opportunity, and we witness this every single time we visit MD Anderson.  Therefore, we are extremely grateful for this blessing. God has truly been with us every step of the way – and has even carried us when things seem dark and impossible.  So instead of reminiscing about all the negative things we’ve experienced this past year, we are focusing on all the positive things that have come with it. 

Now for the update: We have received so much information these past two days; it is difficult to explain.  If I told you everything, I would be typing all night long. So, here’s the confusing yet short version.   We returned to MD Anderson yesterday to meet with our primary oncologist to discuss last week’s scans in more depth.  We learned that the spots in his stomach are within the lymph nodes in that area where he had his kidney removed last April.  Our doctor did confirm that they increased in size but that the increase was somewhat minimal. One spot/lymph node is measuring the size of a nickel, and the other spot/lymph node is about the size of an M&M.  This made us feel much better considering none of that was explained in detail to us last week.  Our oncologist was out of town that day, and we were only told that it spread to the stomach area and that treatment would need to stop.  Of course, we would rather have nothing in that area, but our doctor is not overly concerned about it just yet.  We did ask about the possibility of removal by surgery, but he insisted that it is nowhere near large enough to consider that an option (again, good news). 

We are still going to discontinue the current treatment; we discussed many other options with our primary oncologist, but we are still in a waiting period for the old drugs to exit his system. It may be another 4-5 weeks before we can begin any other treatment or therapy. As his wife, the waiting and doing nothing is very bothersome and nerve wracking; however, MDA is a wonderful place with the most options for Scott to overcome this disease.  They also assured us that the drugs he was on trained his body to fight bad cells and that those drugs are still present in his body and still fighting those cancer cells. 

In a nutshell, our doctor would like for us to try other clinical trials that have seen great responses before going to any standard care drug.  We can always pull out of trials if they do not work and begin standard care drugs at any time.  However, in order to qualify for any of these trials, we will have to have another CT scan in March to determine if there is more progression or growth or if he remains stable.  Once we get the results from those scans, they will determine which trial would be most beneficial for him moving forward.  We did meet with some of the clinical trial study doctors today and was overwhelmed by the amount of trials this place has to offer.  The doctors in this area meet weekly to discuss patients and work collaboratively together to determine the best option for each patient. 

Since we are in a waiting period, we are going to enjoy as much normalcy as possible and spend as much quality time with the kids as we can.  We will be leaving tomorrow after school for a much-needed family getaway.  Scott’s body will have time to rest and get ready for what’s to come. 

One little story that I feel I need to share.  During our last appointment when the many options of clinical trials were being presented to us, I zoned out for a minute and just started praying.  I once again asked God for clarity – to help us determine the best path for Scott. I was beginning to question everything again – should we even be here discussing these options?  Immediately after praying, the doctor looked at us and said, “You know, there is a bible verse that I always like to read.  It’s the one about being at peace and how God’s peace surpasses all understanding.”  I couldn’t help but smile; this is one of my favorite bible verses and one that I refer to quit often.  I was like, “Okay, God, I hear you!” It was another one of those God winks letting me know that He DOES hear me and that it is all going to be okay. 

I hope y’all have a safe and happy Mardi Gras. Thank you so much for your continued prayers.  They truly mean the world to us and continue to help carry us through this journey.

God Bless,

Lori

Philippians 4: 6-7 Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God.  Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.

 

Journal entry by Lori Gautreau

I am somewhat struggling with this post, but I know many are praying and wondering what the outcome of our scans were yesterday.  We are still trying to process it all ourselves, so I will be keeping this one short and sweet. 

The CT scans took place on Thursday morning, and we met with a team of doctors yesterday to review the results.  The images revealed that the spots in his lungs continue to be stable; however, they confirmed that the cancer has spread to his stomach.  If you recall from a previous post, they noticed a spot in that area and wanted to keep a close eye on it.  We were hoping it was only scar tissue, but the scans proved otherwise.  Those spots have grown even more, which means that the treatment we are currently on is doing nothing for that area. 

Instead of receiving treatment yesterday as planned, they sent us home immediately after our appointment.  Understandably, we were disappointed and heartbroken.  We allowed ourselves 24 hours to sulk and be angry, and now we are ready to move forward and do whatever it takes to beat this disease. 

We are stopping the current treatment plan and will be pivoting to a new plan.  They are hopeful that a new plan will tackle the cancer cells in both his lungs AND stomach.  We must wait until the current drugs are completely out of his system before beginning a new plan.  What will this new plan be?  We have no idea.  We will be meeting with a team of doctors next week at MD Anderson to discuss our options. 

Please pray for the team of doctors – that God will give them the wisdom and knowledge needed to choose what is best for Scott.  Please also continue to pray for Scott – that he will be given the courage and strength to endure a different form of treatment. 

I cannot thank you enough for your continued love and support.  This road is far from over, but we are still more hopeful than ever.  We trust and know that God is going to lead us down the right path and continue to carry us through this journey. 

God Bless,

Lori

Journal entry by Kim Levy

Hey All,

Hope everyone is doing well this season. Just wanted to give a quick update on Scott's journey and progress. It's been a while....

Scott and Lori will be heading to MD Anderson in Houston today, Wednesday, February 12th for another round of scans. The scans are scheduled for tomorrow morning, Thursday, February 13th.  The scans will show if the cancer has spread, stayed the same, or has reduced. They haven't had scans since December. As you can imagine, they are anxious about them and praying hard for good results. They will meet with the Oncologist on Friday morning to go over the results of the scans. This will be a different Oncologist than their normal Doctor because he will be out of town. If everything looks good, Scott will soon begin his regular, long treatment thereafter. 

I am also typing this to ask each of you to please pray for good results of Scott's scans and prayers for peace for them no matter what the outcome may be. PRAYER IS POWERFUL!!!!!

Through this trial, Scott and Lori's Faith has become stronger, and they have truly learned to lean on and trust God. Scott has remained at peace with this cross he has to carry, but Lori is understandably anxious. They are both learning to trust God more and more through these difficult times. They have even had some joy sprinkled into their lives :-)) 
Recently, they were both able to celebrate their birthdays together here at home in Baton Rouge...what a blessing! They were originally scheduled to be at MD Anderson in Houston for scans and treatment on their birthdays, but everything ended up getting pushed back a week. 

Scott and Lori and their children, Grant and Emma, are looking forward to spending time together during the Mardi Gras break. They will be heading to the beach as soon as school gets out for some much needed quality family time. The kids are super excited and they can't wait!

Thank you all for continuing to keep Scott, Lori, and their family in your prayers. I know you have heard this before, but it truly does mean the world to them.  Your love and support are such a blessing to them and it is that in which keeps them going.  They are beyond grateful to each and every one of you for lifting them up in prayer.

"SEEK MY FACE, and you will find not only my Presence but also My Peace. To receive My Peace, you must change your grasping, controlling stance to one of openness and trust. The only thing you can grasp without damaging your soul is My Hand. Ask My Spirit within you to order your day and control your thoughts, for the mind controlled by the Spirit is Life and Peace."

"You can have as much of Me and My Peace as you want, through thousands of correct choices each day. The most persistent choice you face is whether to trust or to worry. You will never run out of things to worry about, but you can choose to trust Me no matter what. I am an ever-present help in trouble. Trust Me, though the earth give away and the mountains fall into the heart of the sea."

           ROMANS  8:6; PSALM 46:1-2
 
God's Blessings to All,

Kim

Journal entry by Kim Levy

How this all began....

Scott had been having night sweats here and there for some time. He eventually began having them 2-3 times per night. Severe sweating - sheets drenched - and waking up having to change clothes throughout the night. 

Lori and Scott were overdue for a much needed couple's getaway. So, for Mardi Gras break, they celebrated their 10 year wedding anniversary by going to Gatlinburg, TN for some snow skiing adventure and alone cabin time in the beautiful, great Smokey Mountains. They had a wonderful time together. It was during that time that Scott discovered blood in his urine.

After returning home, he decided it was time to schedule a regular doctor check-up. The doctor decided to run some blood tests, etc...  which also included an Ultrasound and a CT Scan. The doctor discovered a huge mass on Scott's kidney. The mass turned out to be a 13 cm tumor which was cancerous. As you could imagine, Scott and Lori were in complete shock! He had just made is 36th Birthday in February. How could this happen to someone so healthy and young?!?!

From there, the doctor referred Scott to an Oncologist at Mary Bird Perkins Cancer Center. Since the tumor was so massive, they feared the cancer had most likely spread to other parts of the body; specifically the lungs and bones. After finally getting in with the Oncologist, they decided to schedule a bone scan and chest X-Ray to look for cancer cells that may have traveled to the bones and lungs. 

While waiting to get an appointment confirmation for these tests the following week, Scott had plans to be a part of St. George's 2nd Men's ACTS Retreat. ACTS is a 3-day retreat and is named for the four topics it covers:  Adoration, Community, Theology and Service. He attended the first men's one at St. George back in late July. Scott loved it so much, it compelled him to want to be on the TEAM for the next one. The TEAM volunteers and serves their time to be a witness of Christ to others. Through all of the uncertain and awful circumstances that Scott was dealing with, he still wanted to be there more than anything. He felt such a sense of hope and peace there. The men in this community have really developed a special, brotherly bond and we are so grateful that Scott was able to be a part of this. 

Lori, his wife, went to the Women's ACTS Retreat recently after Scott's retreat. She said it is forever and completely life-changing. It develops deep Faith and a closer relationship with God. We are so thankful that the both of them got to do this while still healthy. It has spiritually prepared them for this battle - and the fight of their lives. 

Scott kept calling Lori from the retreat to check on her. He is far more worried for her than he is for himself. He is the most selfless husband, father, son, brother, brother-in-law, uncle, friend and man that I have ever known. He told Lori that he felt great and was on fire for the Lord and ready to fight this battle!

Did you hear that???  His Faith is STRONG and he is ready to put on the armor of God and FIGHT!!!  

The bone scan test just so happened to be at the same time of a Rosary that was being held in the Chapel at St. George for the sick.  The Oncologist reviewed the bone scan and said that there was a black spot on the rib and also one on the knee.  However, a Radiologist is the one that reviews and concludes the bone scan report, and performs the lung biopsy as well.  

After trying hard to get a biopsy scheduled, the first available was over a week away.  Thank God for one of Lori's friend's from the ACTS retreat, Kelli Shannon, they were able to get in with her neighbor and friend, a Radiologist, the following day!

The lung biopsy was performed on this past Wednesday, March, March 27th and the results were supposed to come back in two days (by Friday). While waiting for the results of the biopsy, there was finally some good news on the Bone Scan. The radiologist confirmed that the black spots seen on the rib and knee were due to previous injuries - a rib fracture and knee injury. So, no cancer cells were found in the bones. PRAISE GOD!!!

Lori said that when the doctor told her this, she literally fell out of her chair...  The doctor called by the end of the day Friday with still no finalized results on the lung biopsy. He said he would call Monday morning, April 1st as soon as he got the report. So, they had to wait over the weekend to get the news of this outcome.

The weekend was full of activities although Scott has been very tired (anemic) and has felt run down lately, he never lets it show and continues to stay positive, upbeat and fun-loving in everything he does. 

We enjoyed a family dinner and let the kids play, Scott coached two soccer games, did his usual weekend chores and errands, went to Mass on Sunday and went to a lovely Rosary that was hosted by their sweet neighbors and friends - Emily and Jack Dirks. They were also a part of the ACTS Retreat. The Rosary was an open invitation to everyone and for everyone that needed prayer and healing. What a blessing to have such wonderful friends! There were also plenty of children there that sat quietly and listened to and/or prayed the Rosary with us. What a testament of Faith for them to witness this! It just made my heart smile.

Monday, April 1st the Oncologist called Scott and told him to come in that afternoon for more bloodwork and to see him for the results of the lung biopsy. He confirmed that the cancer cells had spread to the lungs and since the cancer cells spread from the primary kidney tumor to another organ, it has metastasized, meaning it is now Stage 4 Cancer of the Kidney. 

The actual name of this cancer is:  Stage 4 Renal Cell Carcinoma. The doctor told Scott and Lori that they needed to get into MD Anderson in Houston as soon as possible. As you could imagine, this process does not just happen overnight. As of just now, they are scheduled to get into MD Anderson this Friday, April 5th to have a consultation appointment. PRAISE GOD he was able to get in so quickly!

Since Scott is so young and this cancer is so rare for his age, there will hopefully be some clinical trials that they can use to start fighting this. 

Please pray for strength for their sweet family, Scott, Lori and their two precious and LARGER than LIFE children - Grant (about to be 9) and Emma (5). We will be here for them and will make their "new normal" as normal as possible. Their Faith is STRONG but will only become STRONGER through this trial. 

Thank you for lifting them up in your prayers. Prayers are more than anyone could ask for!

               "Behold, God is my salvation; I will trust and not be afraid; for the Lord God is my strength and my song, and he has become my salvation." 
                - Isaiah 12:2
Scott’s Story

Site created on April 1, 2019

Hi, my name is Kim Levy.  I am Scott's sister-in-law, his wife Lori's sister. I will do my best to continue to tell their story and keep you all updated. I am not the best writer, so please bare with me. Thank  you for being a part of their journey!


In times of need, the greatest source of hope and healing is the love and support of family and friends.  We will be using this site to keep family and friends updated in one place. Please feel free to send to others that would like to stay updated on Scott's journey of healing. We believe in the power of prayer and God's great Faithfulness. God's strength will sustain them as they go through this journey with Him. Thank you for sharing words of hope and encouragement. It is through your prayer and loving support, that Scott and his family will find the strength to continue this fight.


Please see the first journal entry on how all of this began.


      "I can do all things through Christ who strengthens me."
                        - Philippians 4:13

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