God is Always Sovereign!

So we've called them headwinds, roadblocks, setbacks, bumps in the road, complications and delays, but let's just be real right now, Satan is trying to steal our joy by putting stumbling blocks in our path, trying to cause us to lose faith. Evil is very real, people. And Satan is active in this world. He can and does come to steal, kill and destroy. He wants to steal our joy, our peace, our faith and our trust. He wants to kill any hope we have. He wants to destroy our relationship with Christ and relationships with each other.

Last night we got bad news that I will discuss later. Because the actual news is less important than what we take from it. We were broken. We were in tears. We were pissed. I yelled at God, "What the hell are you doing? Why? Why must we go through this?" Thankfully, there was a party going on at the house diagonally behind us, so no one heard me yelling at God. But God did. He knew I was mad. He knew I was hurt. He knew I was scared. And He knew I needed to go through these emotions to get back to being able to focus of Him and the road ahead. Alan and I hugged, cried, prayed, discussed, cursed. This road is not easy. This road is not for the faint of heart. And I don't know how anyone walks this road alone, without a tribe surrounding you, or without Christ as your base. 

We were up past midnight, unable to sleep. Satan attacking both our minds with worst case scenarios, feels of despair, fear and hopelessness. As we prayed once more, God reclaimed our minds and allowed sleep to come. 

This morning Alan and I are drawn to Ephesians 6.

“A final word: Be strong in the Lord and in his mighty power. Put on all of God’s armor so that you will be able to stand firm against all strategies of the devil. For we are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places. Therefore, put on every piece of God’s armor so you will be able to resist the enemy in the time of evil. Then after the battle you will still be standing firm. Stand your ground, putting on the belt of truth and the body armor of God’s righteousness. For shoes, put on the peace that comes from the Good News so that you will be fully prepared. In addition to all of these, hold up the shield of faith to stop the fiery arrows of the devil. Put on salvation as your helmet, and take the sword of the Spirit, which is the word of God. Pray in the Spirit at all times and on every occasion. Stay alert and be persistent in your prayers for all believers everywhere.”

‭‭Ephesians‬ ‭6:10-18‬ ‭NLT‬‬

The highlighted verse doesn't say you MIGHT be standing firm. It says you WILL STILL be standing firm! That's a promise. Despite our current circumstances, despite bad news, despite anything and despite everything, we will put on the armor of God, and we will still be standing firm in HIS Truth and Faith in HIM after the battle. Satan is attacking us for every side He can right now, trying to see if he can shake our faith, if he can make us stumble, if he can steal, kill, and destroy us and our family. We have taken bold  public stands for Christ, during his first round with cancer last year, during my County Treasurer campaign, and now again these last 8 weeks. Satan wants so desperately to steal, kill and destroy our witness, our testimony. But by living our Eph 6, Satan will not gain a foothold! Satan will not win the battle today or this war. Despite everything, I tell you God is sovereign! God reigns! Is it always easy to trust that? No, and do I sometimes say it through gritted teeth, yes; just last night in fact! But in the refreshment of the morning light and time in His word, it is much easier. 

Before I enter into what has occurred and is occurring, will you join with us in prayer? Will you pray Ephesians 6:10-18 over us? Will you pray for wisdom for Alan's doctors? Will you pray for doors to open and treatments to occur and be the right treatment? Will you pray for Alan to beat the odds and be a walking living testimony for Christ for 40 more years? Will you pray for me as the caregiver, advocate, wife and mother? Will you pray for our girls? 

Thank you for I know you will. It's been so funny how God has placed people in our paths. People that have no idea what we are walking are being prompted by God to pray for us! That's an awesome testimony of His power! For example, last night at Oak Ridge's graduation, I got a text from Kim LeJeune, my opponent in the 2014 School Board race. God put me on her heart, she texted and said she didn't know what was going on but she was praying for me. I told her about Alan's cancer. And she said, "I'm so sorry Melanie. I'll continue to pray for healing for Alan, peace for you and the girls. I'm just thinking of what your shoes of peace might look like… because I know you have your armor on!" What an amazing woman! I love her heart and that she mentioned the exact passage that we are drawn to. 

Thank you Kim for blessing me. But more than that, thank you Lord for sending your daughter to be You with skin on for me last night when I didn't even know I needed it yet. I didn't know the bad news yet. Alan did, but I had no idea what I would be walking into at home! Lord, you rock! Thank you for my prayer warriors who without any details jumped into prayer mode over us with a quick text. Thank you for best friends who talk you down when you feel like giving up. Thank you God for being our ever-present comfort and help! Give us an extra measure of Your Peace, guidance and strength today. 

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Now for the details, sorry this is so long. 

Last night, Dr. Tsimberidou called at 7:30 to inform Alan that the TAPUR trial was no longer an option. Due to the CT Scan results from last week, he has been disqualified from the trial. So now both trials we had thought were options are removed. She may 3-4 other options, but wants us to run whatever options we can to get the ipi/nivo drug combination, as that's still his best chance. We are working on that this morning. We will meet with her next Wednesday to discuss all the options. 

Additionally, our almost 6 year old dog's been having major trouble with his epilepsy the last 3 days. He is not doing well. And sadly, the end is drawing very near. This will be very hard on all of us, as he is a sweet dog that we love very much. Our animal-loving Audrey may have the hardest time. Mercy may have come along at just the right time to provide great comfort to us all. 

There are the details. This is where we stand. At the same place we stood 8 weeks ago. With unknown potential options and no plan. It's hard not to feel like the last 8 weeks have been a waste. BUT this did not take God by surprise like it did us. And He will continue to use all of these setbacks/roadblocks/headwinds to glorify Him. He will open a door. And we will STAND FIRM after the battle is done. 

Baffling but Joyous

Joyous - Let's start there! Alan is home!

We broke him out!

So earlier today the doctors all agreed that there was no reason to continue to keep him in the hospital. They aren't quite sure what's up, but they know he doesn't need to stay any longer. 

On to the Baffling...

The pocket, as they referred to it, is not in his colon and isn't a perforation! Praise. It is actually in the lining between the abdomen organs. And this 1.8 cm pocket when they attempted to aspirate it and remove the "fluid" they believe it encompassed, they found none. In fact, they put a larger gage needle in and tried to draw more out but couldn't. 

They could only get what the Interventional Radiologist called "debris." Basically, little clumps of tissue just hanging around in the enclosed pocket. So the tissue samples that they gathered were sent to pathology. 

We wait on those results, but in general they don't think this is something extremely harmful to him. So they released him today with more oral antibiotics, just in case!

So we didn't tell the girls and still went down to celebrate Audrey's birthday with him, but the biggest present of all was getting to bring him home!

Happy Birthday Audrey! Happy Homecoming Alan!

Headwinds...

Well we caught another headwind. I keep asking God why. Why do we keep having headwinds that delay the start of treatment? What are we not getting? What have we not learned yet? So far I am not getting an answer. Other than this,

So here is where we are and what occurred and where we are headed that we know of right now.

Yesterday morning, May 23rd, we went in before bright and early to get blood work. Thankful for Claudia, who lives around the corner, who came to see the girls off to school for us. We parked in Mays Building's parking lot since we were suppose to be ending the day there. As we walked across the Skybridge to get to Main, we can a gorgeous banner of our friend Shannon from our B/CS days. I love this woman's heart for the Lord. She has such a vibrant and encouraging personality that it is truly contagious... Even through her banner!

Banners are typically for survivors or survivors' caregivers to put a quote about their experience or encouraging remark. Hopefully, Mr. Positive will have a banner someday.

Anyway, the doctor's appointment seemed typical at first until the PA mentioned that Dr. Tsimberidou (pronounced ZIM-ber-DO) would discuss the issue on the CT. As she left the room, we both stared at each other with that look of "great, what now?" We discussed if they had found another spot, if it had grown. For some reason we knew it wasn't that the cancer was gone. Oh that it would be!

Quickly upon Dr. T and Hayley coming into the room, she told us that there was a 1.8 cm collection of liquid with air on top of it that was a contained perforation or abscess of some kind in his bowel. Shockingly (said tongue in cheek), right by where the tumor they attempted to biopsy 2 weeks ago is. At which point the conservation was focused pretty much solely on what we need to do to resolve this, as treatment cannot begin until this "Headwind" is resolved. After her running traps on a few things, we were clear that he was going to be admitted in some way yesterday. Then we went on to discuss our questions.

The Good News!

Marvin (the tumor by his left kidney) has grown some, but not too much. K. (the blip in his lung that they were watching) has remained a blip and nothing of concern. And Mooney (the tumor between his rectum and spine) has remained UNCHANGED. Over 7 weeks! This little growth is AMAZING. Thank you to our incredible prayer warriors. God is at work here.

Additionally, MDA now has his original sample from last year's original cancer! So Dr. T ordered a COMPLETE workup on it. This will tell us all the potential mutations, markers and anything we need to know about his cancer. They will use this information to look forward and hopefully find other treatment options. So basically, they are going to fully investigate his UNICORN-ness! 

Okay, so back to the "Headwind." After much consultation with surgical oncological and interventional radiology, the plan was to admit him to MD Anderson for 3-4 days of IV Antibiotics and a needle aspiration of the "abscess/perforation." They need to figure out what is in there, how to treat it or if they need to resect it. The results of the aspiration will take 24 hours. They took him back at 2:30 today for the procedure. I am sure he is out and all is fine. I haven't heard from him yet. So we won't have the results until tomorrow afternoon at the earliest. Praying they have a clear plan at that point.

Last night he made me go home and made me promise to maintain my commitments today. Thankfully, my mother came in to help with the girls, and his mother is helping with Alan at MDA. So today, I saw the girls off to school, did some work here at the house and then went to my two speaking engagement commitments. Now I am about to go to the Pavilion for Conroe's graduation,  our 1st of 6 graduations between now and Wednesday night. 

Tomorrow is Audrey's 10th birthday! How can we have a 10 year old! In the morning, I will work her and my last field day at Bush. After that I am taking both girls out of school early. We will head down to MDA to celebrate her birthday with Alan and both our mothers with a little cake for those that can have it. Then we will come back in time for me to make it to College Park's graduation.

Prayer Needs:

1. For the aspiration to yield conclusive results with a clear plan from the doctors.
2. For Alan to continue to feel as well as he does and to be able to continue serving others while there. (He is writing a will for our PCA from yesterday afternoon.)
3. For Audrey to have a great birthday despite this.
4. For Rebekah to not internalize her emotions. I think she is processing fine, but this is a constant prayer.
5. For Alan to be able to still start his treatment within the next 1-2 weeks.
6. For Alan to be able to get rest.
7. For my mom and girls to have fun and be okay while we are dealing with everything.

Thank you all!

WOW!

I love a good God Story... Don't you? We keep seeing God all over our this journey. I hope you see it too!

So here is one story I just have to share.

A few weeks back, I paid a visit to Cheryl. She is the LPC that I had Audrey meet with a lot last year during this journey to help her process it all. I visited with Cheryl at the recommendation of a couple of friends just as a check. It was comforting to hear that I was processing all well! But what was more cool was what we discussed about the girls. I mentioned Canopy and how I would be meeting with the director, Amanda, to see what all they offer, but that at first glance it appeared they only offered Cooking Classes for kids. I explained that Audrey would love that, but Rebekah probably not so much. Cheryl and I discussed that we might just have to start something for teens...

Fast forward to yesterday. Amanda and I finally met, after my rescheduling multiple times due to so many MDA appointments. Amanda confirmed yes at the moment they do only offer Cooking Classes. Since they are volunteer based, she really waits on the Lord to lead the right people to become involved and have a passion for a program. She can't really start a program without people to own it... We spoke about the art therapy program they offer and she commented that she would love it if a mutual friend, Laura Lea would do it. Said she had mentioned it to her, but hadn't gotten a confirmation yet, seeing as she is like me, a professional, mom of two girls and super involved in our community. Both my girls would LOVE an art therapy type program, so I called our friend as soon as I got to my car.

Laura Lea was interested. Not quite sure how it would all work. We agreed a LPC would need to be in the room with her. She was going to call her friend back in Mississippi who is an Art Therapist to get ideas and see what it would take. I called Cheryl and left her a message telling her I may need her help with starting something, as it wasn't looking good, mentioning the art therapy and to call me when she could.

I continued to investigate all I could last night to find programs for kids of cancer patients in Montgomery County. Truly struggling to find any other than Canopy. MDA has a great program down at the Med Center, but nothing up here YET. There are a few things for kids with cancer, but nothing I can find yet, but Canopy for those with parents with cancer.

This morning I got a message from Cheryl, saying she has a God story for me and to call her. When I called, she said she was going to call me back during nap time, but she had to go ahead and call.

Backstory: Cheryl and Laura Lea have shared a sitter. They met at the Bridal shower and then wedding for said sitter. They agreed that they would love to get together and get to know each other better. We women say this all the time, and we mean it, but life always gets in the way. Well this morning Laura Lea called her to discuss a potential program at Canopy. She mentioned that Amanda had discussed it with her and then her friend Melanie had called asking her to do it. Cheryl said, well whatever you are going to ask me, it's a yes. This is too much of a God thing!

So now Cheryl and Laura Lea are going to meet with Amanda to discuss it and then Laura Lea is going to see about flying Judith, her art therapy friend, in for a weekend to help get things going.

I made the comment to Alan last night that "now that I am done battling to get his treatment started, I can focus in on the girls. If I can't find programs for our almost 10 year old and our 13 year old, then I will work on starting them."

I am determined to give all of my family all of the resources they need to stay in the best place spiritually, physically and emotionally throughout this journey.

Thankfully the Lord is already making the path clear and leading the way. Lord make the path clear and bring the right people to the table to make this happen.

God is at work!

WOOHOO! Treatment will start next Wednesday the 23rd. It is definite, confirmed and getting scheduled as I type! This has made my wife heart feel so elated.

Monday he will have a CT Scan since the one from 4/3 is too old for the trial. We are both interested to see what the status of the tumors are after 7 weeks of NOTHING... Also we will start Whole30 back this day!

Wednesday he will have labs drawn, meet with Dr. Tsimberidou and then have his first immunotherapy with ipilumimab and nivolumab. Hopefully, as they have said there are no day to day side effects. I will be with him for this first treatment in order to see how he tolerates it. If there is no side effect that would keep him from driving, he can handle the remaining treatments.

Thank you Lord for using your people to pray and for being a God of the details and working everything out.

Now I have specifically thank all the amazing prayer warriors, our incredible church family, and our biological families! We are so grateful. Our parents and grandparents have been ever present with support, love and all around phenomenal. Thank you, thank you, thank you from the bottom of our hearts, thank you.

Finally... Good News!!

Tonight I left work with no answers yet, heading to Dr. Stockton's final CISD Board Meeting. But in the middle of the meeting, I received this test...

I love Hayley, our trial coordinator. She truly cares about her patients. As we get more details, I will update here!

To those of you who prayed with us for the tumor review board's decision! I am so grateful to all of you!! Thank you Lord!

Disappointed... to put it mildly

Okay so this may be one of my most raw posts to date.

I am pissed. I am so hurt. I am so disappointed. I am so scared. I am so angry. 

I'm done with unicorn-ness. I'm ready for him to be less of a medical unicorn!

So today we got word that the back up option, trial 2, ACTolog, is not a back up option any longer. 

While Alan's unicorn nature worked and he had the blood marker that only 38% have, sadly this time it was not in our favor. He had a 93% chance of having 1 of 8 tumor markers. He was in the 7%. So the biopsy on 5/3 and the biopsy on 5/9 for the trial were for not. On the 9th I had asked that the tumor near his kidney that we had assumed was cancer, make an ass out of u and me and not have cancer in it. Again, sadly it did not. There was cancer present, just not one of the markers. 

So now we are down to 1 potential treatment. Just 1. And I am pissed. I am so mad our backup option is no longer an option.  I am so mad that he suffered through the biopsy and nicking of his bowel last week for nothing. 

Thankfully God is big enough to take my anger. God loves me even when I am angry. My anger at the circumstances doesn't surprise Him. My anger at the circumstances doesn't decrease my faith. He knows that I trust Him. I know He has a plan. I would really like for Him to clue us in on it. He knows that I have faith in Him. In some ways my anger makes my faith greater. 

It's easy to have faith in God when all is going well, when the plan is clear, when life makes sense. Having faith when nothing makes sense, when the plan is fuzzy or not visible, when things truly suck is harder. Having faith now, right now, would be understandable in our finite knowledge to lose. Wouldn't it? 

I will NOT lose faith. God is in control. That doesn't mean that life is easy, not hard or even less hard. You see as a wonderful friend said this morning, we are only promised 1 thing. We are promised, when we place our faith in Christ, that we shall be saved and enjoy Heaven with The Father. We make promises to each other all the time. Promises to do this or that; promises to love each other until death do us part, thinking that is until 80 or so. At least that is what I always thought. But since we only have that finite knowledge, we can't guarantee our promise, like He guarantees salvation. 

God has a plan. Even better, God knows His plan. So we wait with trust in Him in that plan. Even when we cannot see it. Even when we have no idea if we will like it. I take comfort in knowing that even though my finite brain cannot see or know what will occur, this AWESOME, AMAZING God who sent His Son here to die for me does. 

So while we wait to see the plan, I covet your prayers. Tomorrow, Tuesday, May 15th at 2 pm, the TAPUR trial sponsor's tumor review board will be meeting to discuss my unicorn. Pray for their decision. Pray for them to have wisdom. Pray for us to clearly see The Lord in our circumstances. Pray for acceptance into the trial. Pray for our hearts to not be discouraged if the acceptance doesn't come. Pray for a clear path to treatment and a start date for treatment. 

Pray for our hearts and the hearts of our families as they yearn for a plan with us. Pray for God to shine through us in how we handle everything. I truly covet your prayers for this as I fight with my husband for my husband. Pray for us to look for and seize joy in our family every chance we can. 

Pray for our pain, anger, disappointment and fear to subside and to be replaced with joy, faith, love and trust beyond what we can imagine. 

Thy will be done. 

Home!!

Alan got released around 2. Thank you all for the prayers.

He is still a little tender to the touch and sore. He will be on oral antibiotics for the next 10 days. But he is well on the road to recovery. 

And his ring is back where it belongs.

Hospital Stay Day 1

So Alan has worked so hard to feel better today. He walked the floor numerous times and did exactly as instructed. This morning it was through incredible pain. By the evening, it wasn't near as severe.

The conclusion has been reached by his fabulous colorectal surgeon here at MHTW and us with what we have pieced together from MDA is that his bowel was either microperforated, scraped or punctured accidentally during his needle biopsy on Wed. 

Please pray that the IV antibiotics will clear all of the infection and he can start to feel better. Today was rough, but as my sister-in-love texted, "Tomorrow will be better."

Thank you for all the offers of help, the texts and calls checking on us, and the latte. This was not at all expected. But we make lemonade out of lemons, by enjoying time together. 

Oh and he can have his band back when he is released. 

Don't even know what to title this

Tonight as I sit by the bed of the love of my life, I am reminded how grateful we should all be for every moment.

Today's biopsy went well. The meeting with Dr. Morris reassured Alan that we are doing everything we possibly can and that waiting for the ipi/nivo immunotherapy is still the best course of action.

I agree with the plan, but this doesn't help this wife's impatient heart. I want him on treatment now. And until he is, I will not feel as though we are doing nothing...

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As the afternoon wore on, Alan's pain continued to increase. He had a wave or two of nausea, he had a couple of dizzy spells and shortness of breathe started to come. As these are all signs that I should be watching for, we were. 

After speaking with the MDA oncall Inventional Radiology, Alan and I went to the ER. He has now been admitted to MH with some complications from the needle biopsy. Please pray these issues resolve quickly and he can come home tomorrow. 

Pray for him to heal completely. Pray for his spirits to stay up. Pray for the biopsy from today. Pray for him to get approved for the trial ASAP. Pray for my husband in a real and tangible way. Pray for our girls as I know they were scared seeing Daddy hurting similar to when the cancer was first discovered. Pray for them to not bottle it up but to open up for the sake of their own health. Bottom line. Pray. 

*Family: One of us will call you in the morning. 

Delays, delays and delays...

So our frustrations have been at heightened level yesterday and today.

They just took him back for the re-do biopsy, and I am finally getting to update everyone. 

So after 2 hours on the phone yesterday and 3 or 4 calls today, here is where are are. 

TAPUR - trial 1 for the immunotherapy 

They were trying to get a definitive diagnosis of MSI-High for his tumor. His genetics say that it is. But all pathology reports only say Probable or Most Likely. 

In order to do this, they were testing his biopsy from 4/11. Well yesterday, Hayley informed me that there was not enough sample to complete this. She immediately jumped to action by submitting his info and everything to the trial sponsor's tumor review board to get him approved without having to do another biopsy. They could possibly review his case this Thursday or next. 

Beyond grateful for her, but not satisfied with waiting possibly that long, I called BCBS. That conversation did not go well, as anyone in the office can tell you because they all heard me raising my voice and slamming the phone down. Bottom line there, they haven't decided if they will approve the treatment because "they were missing information - His physician's notes, previous diagnosis, etc." I was livid as I know this is not true. 

So I called Dr. Morris (his oncologist). His triage nurse was fabulous!! She discovered that the pathologist that reviewed his 4/11 biopsy for MSI-High was trying to get his original sample from his tumor last year. And she told me to talk with Dr. Morris about what options there for treating him with something now. 

After speaking with Hayley and a fabulous friend at MHTW, his original sample should be here today. 

Then later yesterday, I contacted a friend with connections with the sponsor to get help in Alan being reviewed Thursday. 

So right now we are still on hold for immunotherapy. But this morning we managed to change his appointment with Dr. Morris from Friday to today so we can cram it all in. 

ACTolog - trial 2 for T-Cell treatment

Since Alan's mucinious tumor doesn't seem to want to give over enough sample, we have major concerns about doing the same procedure the same way and garnering the same results again! Soooo we pushed them to do something different. 

They are going to take the biopsy from the second tumor to see if it will have better results. So right now I am calling on my prayer warriors to pray this tumor is benign or if not, to GIVE IT UP. We need good samples. 

Thank you!

Priorities

Our world right now consists of three priorities. If it doesn't  fit into these and we have time for it great; if not, that's where grace is stepping in.

Priority 1 - Alan's health. That means if MDA sets an appointment with less than 24 hours notice everything gets dropped. Meal planning and Whole30 must happen in order to assist in limiting the side effects when he gets in treatment. So far this week has gone well! But we are just starting Day 6. As Alan says, "I can do anything for 30 days." 

Priority 2 - Time with each other. It's perfectly acceptable right now for us to hole our little four family off and place an extremely high priority on us time. And I am sorry if we reject certain invitations or don't invite people along as much as we have in the past. And I am sorry if by doing so it hurts your feelings. 

But as my dad has told me multiple times, "It's about you, Alan and the girls. The rest of us just have to deal." And he's right. Sometimes that is hard on Alan and I to remember because we are social people. And we love our extended family very much. But right now and for the foreseeable future, our priority is on our nuclear family. Taking care of each other's emotional and spiritual needs are of the utmost importance. So if a girl is having a rough time, I may cancel something with virtually no notice. 

Again this is where grace steps in. God has made clear our priorities as husband/wife and as parents. Those two relationships come right after our relationship with Jesus. 

Priority 3 - Work. All the while, living requires money. So Alan is still keeping up a thriving law practice. I am continuing to slowly transition out of my business and prepare to step into my new role on Jan 1. 

For me, work priorities include my school board commitments, and since I am elected by the people, I am bound to do that fully. Does that mean I have missed more of the optional end of the year items this year; yes. But I have not missed a board meeting and have worked our schedules to where I should not. 

This area is where being a multi-tasking, highly scheduled individual comes in very handy. It is also where smart phones are your friend. I remember Debbie Sukin, a woman I highly respect, saying on a panel once that her phone is a great tool. That she can be 100% wife, mother, CEO of a hospital, board member etc because she can be sitting at a school function and the hospital can still reach her in an emergency. I took that comment to heart. I can be 100% all of my hats I wear, just not all at the same time. I only have one head for a hat to sit on. So pre-planning, organization, my iPhone, and a computer with WiFi, are some of the best tools at my disposal to ensure these priorities are met. 

Beyond these three things, if we want to do it or it is deemed massively important by us, then we will. But everything is running through that filter. Which means I have had to learn more about giving myself grace.

As a Type A individual with high expectations of myself, giving grace to myself has been a learning process over my life. Early on in life, giving grace to others when they didn't meet my expectations was a lesson to be learned. Just ask some of my buddies from high school! They know, I was Momma Mel and wanted things my way. 

At the end of my senior year, when tragedy befell my family and we lost my great-aunt at 57, I quickly learned that life wasn't going to meet my expectations. I rebelled against God. I was so mad at Him for not doing what I wanted that it shook my faith. I spent two years hearing Him say go left, and I went right. I learned during this time that people will fail your expectations all the time! They are human; fallible, sinful, prideful humans. 

God was gracious during these two years and protected me despite my anger at Him. He used this time to build in me a much deeper faith and trust in Him when I returned. He used a medical issue in my own life - the potential to not have kids - to draw me back. I realized I had no control over circumstances in my life. I could choose to follow Him, to trust Him, and to have faith in Him Alone, or I could continue to "succeed" by worldly standards and be miserable inside. 

Just shy of 6 months after God rocked my world, he brought Alan into it. God allows curve balls in our lives, like the death of Wanda, my medical condition, and even cancer, to glorify Him. He uses these bad things to show His grace, His mercy and His love for us. I'm not going to lie to you and say curve balls don't hurt when they hit you. But I will tell you what I learned from the death of my great-aunt. 

Glorifying God through the crappy parts of life is what gives you true joy when the circumstances suck. I chose to be unaccepting of His plan, I chose to walk away from Him during those two years, I chose to not trust that He had a greater plan and would use those crappy circumstances to do something greater. Not again. I learned that leaning on God through my hurt and disappointment is a far greater joy than the depression of wallowing in circumstances. I choose to look for the joy. I choose to hold strong in my faith. I choose to trust He is good and will carry us through every situation, if we rely on Him.

Choosing Him regardless of anything else has granted me the ability to give myself and others grace. I don't hold myself to the same unattainable standards that I did in high school. I let Him lead and prioritize my day and my life. I no longer feel an overwhelming need to be whatever everyone else wants me to be or expect everyone to be exactly like me. I only desire to be who He has called me to be and for others to be who He has called them to be. There is such freedom in that. It's a daily freedom that I hadn't experienced before fully giving my expectations, my hopes, my plans over to Him. There is a huge amount of freedom in knowing that God and I are good, even if people don't like it. It definitely prepared me for the battles of the last year and a half. It prepared me for not worrying what others think of me in a campaign. Daily going to Him for my priorities, and not worrying about the thoughts and priorities other may have of me or for me, is true freedom. 

Now it will serve me well in this next phase of our journey as a BushHerd. Because so long as I am focused on Him, I will be able to take care of him and the girls, come what may! God gives us what He will get us through. We only get through it well and whole, if we allow Him to carry us through it. 

A Month

Today has been a month. A month since our world was rocked. It's been a long month. A very long month! A month since "the spots" were known to us.

Thankfully they have been known to the One in Control from before they ever began. He knew the journey we would be on. He knows why we are going through this. He knows how it will glorify Him and refine us. He knows the outcome. So we have to work the process and fight to kick cancer's butt. Knowing that in the end He will be victorious! He will reign supreme forever over our lives, our circumstances. 

Today we found out that there was not enough sample in the biopsy from yesterday. This is to finish qualifying him for the backup treatment, ACTolog trial... needless to say we are frustrated. 

So we will be down at MDA on Wednesday for the THIRD biopsy of Mooney... at the same time the results should be back from one final test on the sample from the first biopsy on April 11, to be able to start the ipi/nivo treatment we have been trying to start since we got the formal diagnosis. 

I know I called him a unicorn. And he is. He is one of those one in a million guys. I was so blessed that the Lord brought him into my life when I was 20. And if you know the circumstances as to how we met, you know what a testimony to The Lord it is. I'm honored to be his wife and am so grateful for how Alan has led our house, leading us as The Lord has called. Alan is an incredible father. He shows our girls how they should be treated by taking them on regular dates. He loves them so much. 

A month without treatment is driving this wife crazy. It's hard not to imagine and worry over how much it may have spread or grown in the last month. Patience has never been my strong suit. Please pray that everything starts moving at a faster pace. Pray for the ipi/nivo treatments to work. 

Thank you for walking this journey with us.

Unicorn - Wednesday, May 2nd

So why would I be discussing unicorns? Well, the continual joke has been that Alan is one. So let me tell you how my husband is a rare breed of unicorn that MD Anderson wants to study!

Unicorn Traits:

1. Alan has a genetic mutation which accounts for only 3% of colon cancer cases. (https://www.mayoclinic.org/diseases-conditions/lynch-syndrome/symptoms-causes/syc-20374714)
2. Alan's tumor was a mucinious adenocarcinoma which accounts for only 10% to 15%. (http://www.esmo.org/Oncology-News/Mucinous-Colorectal-Cancer)
3. His chances of metastatic recurrence within 5 years was 25% to 32%. 

So up until today his unicorn-ness has not been a good thing. It has been negative. Well today his unicorn-like cancer has finally positive!

Alan has a marker in his blood that only 38% of the population has!!! This is great news. Tomorrow we will have another biopsy of one of his tumors to see if it has 1 of 8 markers. If so, he qualifies for a very important clinical trial (ACTolog)! For more information about this trial, go here (https://clinicaltrials.gov/ct2/show/NCT02876510)! 

Week of April 30th

This week was filled with 3 days at MD Anderson! 

On Friday, we felt like we had been drinking from a fire hose. Just overwhelmed with information. On Monday, Dr. T made sure we were clear on everything and it ended up being a good visit, even though originally, we weren't sure why we were going down there.

Wednesday, he signed consents for them to include him on two more research studies! Everyone wants to study my unicorn husband. And we want them to study him as it might help him, our girls or someone else!

Thursday was a scheduled biopsy if the blood work we took on Friday came back with the right results on Wednesday. More on that in another post.

Treatment Delays and Plans - Week of April 23rd

So the next week was spent trying to get the insurance company to approve the ipi/nivo treatment plan.

On Thursday, April 19th, we were informed that it was denied in the peer to peer review. So we started actively pursuing multiple other options all at once to try and get approval.

On Tuesday, April 24th, we got word that Alan was going to be seen by the clinical trial team. On Thursday we got official word that we would be meeting with the the doctor the next day. Oh and we went to Audrey's Fourth Grade program.

Friday, April 27th was a long day with a long update. Below is what we put out.

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Long Update Warning!

After over 6 hours at MDA, we have a great plan! And we are so beyond grateful to God for going before us and working out all of the details.

Alan has been accepted into a clinical trial (TAPUR) for exactly the meds and protocol that his oncologist was wanting him on. Great news is the sponsor of the plan is covering the total cost of the immunotherapy drugs for as long as it is beneficial. All insurance will need to cover is the cost of scans and labs which they would have to cover anyway! Praise Jesus!

Second blessing of the day! Alan is being screened for a second trial! This trial is for adoptive cellular therapy (ACTolog). If he meets all the criteria, it will take his T-cells and turn them into cancer fighters. They will stay in reserve for when/if the immunotherapy is not helpful.

We walked away from today feeling so incredibly blessed. God blessed us with the opportunity to speak about our faith with two other families walking the cancer journey. We had a great time with those families and laughing with our trial therapy team members.

Please keep Virginia and Christine and their families. Please pray for our team, Dr. Morris and staff, Dr. Tsimberidou (Dr. T) and staff, and Research Coordinators Kshipra and Haley! Pray for all the next steps to fall in place for the first treatment to take place a week from today. Pray for it to work. And continue to pray for us to shine the light of Christ. His glory will be seen in this situation through how we face our circumstances.

We just keep repeating to each how thankful we are to Him for working all these details out. Thank you, thank you, Thank you God!!

The Following Week

A week later exactly on April 11th, Alan had a needle biopsy on the "more concerning" spot. For those of you that haven't had the pleasure of knowing Alan personally, he is quite the comedian. His one liners are amazing.

Supposedly, the crew doing the biopsy was laughing right along with him. Afterwards, the texts between him and Darren (our really good friend) were hilarious. He kept using the phrase turnzontial. Whatever that is...

April 13th was biopsy results day. Again, very few people knew this. That night I was scheduled to speak at the All Ears! gala. We had to be there at 6 and Rebekah doesn't get off the bus until 5 on a good day. We knew that bad news would take much longer than we had time, so we concealed from the girls that we were going.

So we were a wreck. The next few hours were somewhat of a blur. Lindsay, his PA came in first and confirmed it was cancer. So how we managed not to break down. This was the first time we were hearing that there is a "blip" on his CT in his lung. Not anything of concern yet, but something they are watching. She talked about how his tumor is MSI-High (https://www.ncbi.nlm.nih.gov/pubmed/15528785). That means that his tumors should respond to immunotherapy. Then she explained immunotherapy and what they are wanting to do. She leaves to go get Dr. Morris.

We just sat and held each other with tears streaming down my face. Alan kept it together. I later came to realize that was because he was in such shock. He through with his CEA level still in the normal range there was no way it was cancer.

Dr. Morris comes in and gives us more details about the treatment. He is advising a new treatment not yet FDA approved for colon cancer, but that hasn't stopped a lot of insurance companies from approving similar treatments, according to him. He would like to get Alan on it as soon as we get insurance approval. He talks alot about the recent study that was released about how much better this treatment was doing than just nivolumab. This is a 4 doses (1 every 3 weeks) or nivolumab and ipilimumab combined then stepping down to nivolumab alone every 2 weeks.

We asked tons of questions about other options, side effects, etc, but truly believed this was the best option. So we consented on it that day to get the ball rolling on treatment right away.

We left crushed, but hopeful. We have the best option in our sights. We will fight and best this again. We discussed names for these tumors. Some of you may recall, Alan named his original tumor Bocephus! And would say things like NOMOBO or BoHasToGo. Well this time, they are named Marvin K. Mooney, as in Marvin K. Mooney, will you please go now? by Dr. Suess.

Marvin is the tumor by his kidney, K. is the blip in his lung, and Mooney is the spot they have to access through his backside to biopsy!

We made the customary family calls to inform his parents and sister and my family what we were facing and the plan.

We had an hour or so home alone before Audrey got there, so we just spent time processing. After she got there we played with her some before getting ready for the gala. Rebekah got home and Julie came over to hang out with the girls.

We survived the gala. Neither of us wanted to be around people, and yet there we were honoring our commitment. As we worked the room beforehand, I just wanted to be as close to him as possible. I felt clingy, and I NEVER feel that way. It got to the point that I went to the bathroom to try and calm down, I was overwhelmed by the number of people in the room I didn't know, feeling like I was going to start crying at any moment. I typed off a quick text to some prayer warriors to lift me up please. I headed back out after about 5 minutes of hiding. Then we had dinner and the program. Supposedly I did well... I really don't remember much about my speech, except that I kept my composure until the second to last paragraph. I got teary but managed to not to full on cry. As soon as the rest of the program was over, we left as soon as we could.

When we got home, we collapsed into our numbness.

Second Round of 1 Year Check Up Appts

April 3, 2018 - Alan went down to MDA for blood work and his CT Scan.

April 4, 2018 - Results Day

It was nice to see Dr. Morris again. He asked how we were doing and if we had any questions, which we did. He answered all and kept the conversation focused on making sure we had no unanswered questions first.

Then he started in on the results. They found a spot by his left kidney in the omentum. But it was possible that it was just a fluid build up since it wasn't too far from the original surgery site.

And then he went on to the other spot. This one was much more concerning. It was between his rectum and his spine. He wanted to schedule a biopsy and figure out what this one was. If it was negative, then we would do a biopsy of the one by his kidney, but no need to do that if the more concerning one was cancerous.

He kept telling us that it was possible that they were just fluid build ups. That Alan's CEA level (carcinoembryonic antigen) was still in the normal range. At this point his CEA was 1.5 and normal is 3.0 or less.

We left broken. That has been my word to describe our emotional state this time around. We are hopeful but broken; scared, but trusting. We know how is in control and we have faith that no matter what God will be glorified through this situation.

We called his parents, sister, and my family on the way home. Then we put on our game face... It was time to celebrate our 13 year old!! We has a fabulous night with the girls and then we just sat on the couch, holding each other and sitting. We occasionally spoke, but mostly, we just sat.

April 5, 2018 - We told the girls that he needed further testing. Rebekah was devastated. Audrey took it in stride, but then broke down in her own way. All in all, we were okay. At first we didn't want to tell everyone because we weren't sure what was going on. So no point, right? Not so much.

On April 7th, after feeling like an absolute fraud at an event, telling everyone who asked how he was that he was fine... we decided we would put a post out.

That morning I had written something. Ever since I was a kid, writing was a way to get my emotions out. Alan said to post what I wrote, so I did with some explanation. Below is that post.

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Today I am broken. Today my heart feels like has been shattered.

This was suppose to be the "good" visit. This is too early for reoccurrence. This "shouldn't" be happening.

Who says? Who determined that?

My mind, my heart. It hasn't even been a year since chemo was stopped. It's barely been a year since he was first diagnosed.

Pardon me but WHAT the HECK God? I mean come on! He's barely 40 and we are looking at a second round on the cancer journey in a year! Seriously!

Despite feeling this way. Despite being broken and feeling numb again. Despite all the myriad of emotions.

My Lord is a good Father. He has us wrapped up. He is taking care of us. Because no matter our circumstances, cancer/no cancer, broken/whole, NO MATTER what, He loves us. That love, that joy carries us through. No one, NO ONE, not even Cancer, will take that away.

Father, you used us once before. You used our cancer journey to point others to you. Do it again.

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I wrote the above this morning. When I finally read it to Alan this afternoon, he said it summed up how he felt too. So here we are.

We found out this week that he has two suspicious spots. We are currently waiting on further tests and results.

We have debated not telling anyone but a small group of super close family and friends. But in the end both of us being such open books, it's not who we are. Please pray that as we go through the next steps that God will continue to use us to glorify Him.

1 year later

March 22, 2018 was the start of Alan's one year check ups!

Dr. Newton is a great colorectal surgeon should you ever need one. On this day, Dr. Newton did his follow up colonoscopy on Alan. He was super pleased with how his resection looked a year later. 

He found one polyp, but the biopsy confirmed it was not cancerous!

This hat was with us throughout every appointment, every chemo, every step of his cancer journey in 2017. So for his one year check up, I brought it down off its perch high in my closet. I refuse to wear this hat for anything else. 

June to December 2017

This time frame was unremarkable with regards to Alan's Cancer. His August check up was delayed due to Hurricane Harvey... it finally happened 3 weeks late. He got his port out October 20th.

Ever since he had his tumor removed, they had been watching a marker in his blood called CEA. This has been completely in the normal range, which is below 3. In Sept, it was its lowest at 0.9. December it was back up to 1.2, but Dr. Morris assured us it is completely normal for this number to bounce around. 

We went into 2018 feeling completely blessed. Alan was cancer free and the awfulness and fear of 2017 was behind us. 

March to May 2017

So Alan's chemo hit every major event of the spring in 2017. His first one was the day before my birthday. Second round was the weekend of Rebekah's birthday party. Third round was Good Friday and pack removal on Easter. Fifth round was Mother's Day weekend. And the sixth and final round was Memorial weekend and Audrey's Birthday weekend!

We have been super pleased with Dr. Morris and his team at MDA. He gave us much more hope than the other oncologist we met with in February 2017.

Alan was blessed with minor side effects. He would be on the chemo drip from Friday to Sunday and was back to running by Wednesday for the first three and Thursday for the last three treatments. He maintained his amazing attitude the entire time. As expected he was more tired than normal, but he continued to be an incredible father and husband. 

First Chemo

On March 17, 2017, Alan had his port inserted and his first round of chemo. It was a long day and our first weekend with the hunting pack!
My pic from while he was pack getting his port.

Alan with his hunting pack... Hunting Cancer!

March 3, 2017 Post

Here was my Facebook post from 3/3/17.

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Christ be glorified! Yesterday, we went to MD Anderson for Alan's first appointment to get more information on a treatment plan. 

All indications right now is that Alan is cancer-free. This is a HUGE Praise. He should do chemo due to a couple of reasons. So now which of the two chemo options and timing are the decisions to be made. 

We both have been pretty clear and in sync in our thoughts on it. I love how our prayers for the last week has been for wisdom, clarity and peace and our Lord has given us just that!

Alan is the love of my life, if you haven't figured that out yet. So whatever we can do to avoid this coming back or any metastasized recurrence of it in the future, we will do. 

The Lord brought Alan and I together. He is the perfect head of our household, husband to me and father to our girls. He encourages me in my strengths and is not intimidated by it (unlike a lot of guys). He encourages me to do as The Lord leads. But see that's the key. We both are united in doing as The Lord leads our lives and our family. 

Cancer is not what anyone wants to afflict their spouse or anyone they love. Cancer is a vile and horrible disease. But cancer is not a death sentence! We have Christ; therefore, we have life eternal. We can face anything because of the Love of Christ. If you don't have that same confidence, that no matter what curve balls life throws at you, that to live is Christ, then come talk with us. 

If one person grows closer to Christ or even comes to Christ through our journey, then we have beaten Cancer. Cancer is just another tool Satan would like to use to steal our joy. And we refuse!

Initial Diagnosis

So to do this blog justice, I should probably take about 100 steps back to give the history. 

January 30, 2017 (Monday) - I took Alan to Memorial Hermann ER in the back of The Woodlands. They discovered "an inflammation" of his colon. They transferred him to MHTW main campus and kept him on IV antibiotics until a colonoscopy could be done to confirm what was occurring. 

February 2, 2017 (Thursday)  - Dr. Bala (GL Doc) confirmed Alan did in fact have a tumor that needed to be removed from his upper left side of the colon. She connected us with Dr. Newton (Colorectal Surgeon) to remove the tumor. Unable to get him in on Friday, Dr. Newton released Alan that night on a liquid diet for surgery Monday morning. 

February 3, 2017 (Friday) - Moved into our new house. Wonderful friends helped us get beds set up and helped oversee the move. 

February 4, 2017 (Saturday) - Roughly 15 wonderful friends from church descended upon our house and stayed until the last box was unpacked. Literally, all rooms completely functional for every day life! Such a blessing!

February 5, 2017 (Sunday) - Our church prayed over Alan. His family joined us for lunch and an afternoon together. Then Audrey was playing at the park and broke her two front teeth when she ran into a pole. 

February 6, 2017 (Monday) - Bobbie took Audrey to our dentist to get her teeth fixed. I took Alan to the hospital for surgery. We were blessed with family, church family and friends coming by to check on him before surgery and then to stay with me during surgery. At the end of it all, Alan had a grapefruit sized tumor removed from his large intestine, that had broken through the omentum and adhered to the small intestine. 

February 7-9, 2017 - Alan worked hard and walked a lot. 

February 10, 2017 (Friday) - Dr. Newton informs us that it was indeed Colon Cancer and that the lymph nodes were clear, but that chemo may be advised since it was adhered to another organ. He also released Alan!