Answered Prayers

The power of prayer is phenomenal. Alan is on more prayer lists than we know. There are literally thousands of people praying. And to those of you that put him in those lists and that have been praying, THANK YOU! I cannot begin to tell you how much we appreciate it and how we truly have felt it!

God came through BIG TIME this morning and answered the second biggest of our prayers at the moment. 

As the sun was rising over the mountains this morning, Alan and I both wept in gratitude as Bristol Meyers Squibb's Patient Assistance Foundation representative Merlyn said that our application had been accepted!!! Not but 10 minutes after we got off the phone with her, Jennifer with MDA called. She had just heard from BMS Foundation too. Jennifer clarified that they had approved BOTH medications through June 22, 2019! We are so grateful. 

Just to put a fine point on this. We had been petitioning The Lord that BMS would approve ipilumimab! And what did He do, they approved BOTH ipilumimab and nivolumab! So God gave us what was best, not only what we were asking! 

God doesn't always answer our prayers the way we "want." He answers them how they need to be answered to glorify Him. Sometimes that is a no or as we have seen over the last 12 weeks, roadblocks! Sometimes that answer is to wait until the right moment. Sometimes that answer is far greater than we could have imagined! The four does of ipi were going to be $146,000 out of pocket. The cost of nivo for that time frame would be $504,000 out of pocket. Wow, God! What an awesome testimony to Your provision!!! Thank you Lord!

Now for it to work! That is our biggest prayer request! That this treatment KICKS his cancer's butt!! Additional requests are as follows:

• No or minimal side effects - none that would cause treatment to be halted. 
• Alan to continue to feel well.
• For the incredible, positive dynamics in our four-family to continue. The girls have been amazing with each other during this journey. 
• For the youth programs for children of cancer patients to get kicked off soon. This momentum stalled while I focused back on getting Alan on treatment. 

Again, thank you all for praying! I hope you all see how you have blessed our family. 

The Pause

Wow! My study this morning hit the nail on the head.

The Pause

This is where we find God's peace.

This is where we find God's protection.

Often times, this is where we find God's purpose.

We are a society of hustle and bustle, rarely stopping to sit in the quiet. We are too busy making lunches, running our 2.5 kids to this practice or that practice, working nonstop whether in or outside of the home, volunteering on this committee or that committee. We have learned to say no to some things in our family, but at the same time we still end up this way.

When Alan got cancer the first time, it was a great opportunity to reflect on what we were saying yes to and see if it truly lined up with our family's mission and goals. We dropped some things and continued on. Fast forward to the beginning of April when his recurrence of metastatic colon cancer was diagnosed. We have continued living, but placed a strong emphasis on our priorities that I wrote about earlier - setting boundaries with people, tasks and things in our lives.

This week away has truly given us The Pause. Now that's not to say we have done nothing. Not by any means. The days have been filled with memory making activities and moments. But the mornings have given time for reflection and time with Our Lord.

I am one of those highly active individuals. I don't like yoga because when I took one class the instructor had us lay there at the end for literally 10 minutes to rest and meditate! It was painful for me. I don't sit. I am on the go constantly. I am a huge believer in prayer and time with God and yet over the years, most of my quiet times have been 5 minute devotionals because I haven't stopped to sit.

His recurrence has me on Pause. I am spending more time on my knees, praying His Word, praying for others walking this cancer journey, like my friend's grandson, Cameron, or my friends Kelly and Sharon, praying for my husband, and praying for my girls. I am spending more and more time in The word because I am desperate for God. I am clinging to Him.

You see, those of you that know me at all, know I am a take charge, get-er-done lady. Those of you that know me very well, know why that is.

In this situation, I am scared. I am more frightened than I have ever been in my life. And I can't just get-er-done with this one. i can't just take charge. That is where God steps in. He is my peace. He is my protection. And He is showing us His purpose.

My study this morning, the author spoke about her desire to charge forward with her own plan - I've NEVER done that before <insert sarcasm here> She went on to describe how in The Pause it is easy to get despondent, forgetting about God's faithfulness.

I relate to this final paragraph she wrote.

Day in and day out, God demonstrates His mercy, power, and provision, yet in the pause it is easy to forget His faithfulness. We become impatient and try to rush the wait especially when life hangs in the balance or our funds have run dry. We often can’t wrap our head or heart around God’s timing or ways. When our pause seems more like a wilderness, we must be determined to strengthen our faith by trusting His timing. Cling to His peace, and remember—God has a history of working miracles.

- Wendy Pope, Wait and See

This Pause I am learning so much more about clinging to Him, trusting Him and remembering His faithfulness. I pray that you will see His promises and faithfulness come to fullness in your life. Cling to Him - none of your life circumstances are a surprise to Him. He is working them all together for His glory! Trust in that. Trust in the one who came to this earth to die for you, so that when your time here on earth is done, you may have life eternal with Him!

Nothing earth shattering

Exactly as the title says, I have nothing earth shattering to share.

BMS Patient Assistance told us yesterday they hope to have an answer on our appeal on Monday. MDA called to reschedule Alan's appointment time with Dr. Dude on the 6th, which is no big deal. That's the latest update I have for you all. 

Being out here, mostly isolated with cell service that only works intermittently, no WiFi and having very little distractions from each other has been such a joy. I think the girls would agree. We have had a couple of struggles with tiredness-induced crankiness. But that's because we have played hard. Yesterday we hit a breaking point around 4. So we came back to the cabin, put on the Sound of Music and grilled. Obviously they needed the rest as at 8:15 neither girl is up yet. 

God has been so good to us. Alan has felt well during the trip. His fatigue seems to have lessened with the lessening of stress. I can't imagine the load he bears as husband, lawyer, father, son, brother and friend. He always has such an amazing attitude. But I know the stress of trying to get well and cancer free and the many roadblocks we have continued to encounter has not been easy on him. 

Please pray for all of us to continue to have a great time connecting deeper than normal. Pray for Alan to continue to de-stress. Pray for each of the girls as the deal with their fears and their emotions. Lastly, pray for me, as I try to take care of them all and still fully process and take care of myself. This last part often falls by the wayside. 

Hug your family tighter. Love bigger and laugh more. Love in the moment and make today truly count and something memorable. 

Peace and Rest

“Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.”

‭‭Psalms‬ ‭91:1-2‬ ‭NLT‬‬

Where do you find your safety? In whom or in what do you place your trust? Where do you have peace and rest? Is it a place? 

Since moving into our new house in February 2017, it has been a place of peace and a safe haven. Not because of the structure but because of how The Lord has continually guided us through whatever we were dealing with at the time. 

Last night we arrived at The Perch! This is a place of God's perfect beauty and peace and rest. We are about 9000 feet above sea level on the side of the mountain in a cabin. It's just the four of us, tucked away. 

I'm looking forward what God is doing in our family. The girls were amazing for the 15 hour trip - only twice did we have minor issues. After unpacking the car, we grabbed some pizza then the few groceries we needed. 

Then it was time for family Bible Study. 1 Cor. 13 was our focus. We discussed what Love really is. Alan has always focused on what it says Love isn't. Other other day when doing his own study, Alan really wanted to help us all focus in on what Love is and how we should be with each other. I jumped in and discussed what my hope is for our family this week. 

We talked about how the last year and a half has been hard. And how amazing they have been, especially since Alan's recurrence diagnosis. These two girls have dealt with so much. We talked about how God is big enough for our anger and how He understands our pain. This caused a tidal wave of emotion in our teenager. She holds in her emotions so much. It was a great break through. 

Please pray for more of these break throughs for all of us. We all have so much we are feeling with Alan's cancer and in the hustle and bustle of our day to day lives, we don't fully process. Grateful to our friends for the week at their cabin. This is the perfect place for processing and healing in His grace and peace!

The perfect place for watching the sun rise!

Ups and downs

Yes, I was that mess with tears streaming down my face in youth worship this morning. 

First, the song, Who You Say I Am, (https://youtu.be/lKw6uqtGFfo) got me. I teared a tiny bit, but really it just spoke to my heart. 

I am chosen, not foresaken.

I am who You say I am. 

You are for me, not against me

I am who You say I am. 

There are times in this journey that I have felt foresaken or abandoned. There are times when I have wondered if The Lord forgot that Alan has cancer and needs healing. It's not hard to do, since from the outside he doesn't appear sick. 

Now I know that isn't true. But emotions don't always base themselves in fact. Usually they aren't ever based in fact when they are fearful! For He is Lord over everything. He hasn't forgotten about Alan's cancer. He is working all the details out for the way in which He will be glorified most. He hasn't abandoned us or foresaken us. He is working all the details out in His Godly way that we don't see right now.

This song reminds me another when I was in college, Trading My Sorrows (https://youtu.be/YYRc0JeQuC0).My favorite lines came flooding back as I sang Who You Say I Am. 

I am pressed but not crushed

Persecuted not abandoned

Stuck down but not destroyed 

I am blessed beyond the curse

For His promise will endure

And His joy is gonna be my strength

Though the sorrow may last for the night

But His joy comes with the morning!

These lyrics spoke to me as I came out of a rough two years. They speak to me again now. I love the way God uses His people to write passages or lyrics that speak truth into my life. 

The song after Who You Say I Am had tears streaming down my face uncontrollably. I had never heard it before. It spoke so deeply to my heart. I mouthed the words, when no sound would come. Give Me Faith (https://youtu.be/dNwt7LQiYck) caused my heart to overflow. 

All I am, I surrender

Give me faith to trust what You say

That You're good and Your love is great

I'm broken inside, I give you my life 

'Cause I may be weak

But Your Spirit is strong in me

My flesh may fail

My God You never will

These words hit hard. There are moments when I am good. When my faith is strong, when I am not broken inside, when I feel His Spirit roaring in me, when I know He never fails. There are moments when I need Him to give me that faith because I am weak and broken and failing to trust in what I know to be true about His goodness, His great love, and His strong Spirit. 

Thursday and Friday were honestly horrible days. Where Wednesday was good and we were feeling strong, the emotional roller coaster of back and forth about out of pocket costs and the patient assistance program just left me broken inside. 

It shouldn't be this hard! It really shouldn't. Our medical system is broken. Now before you worry, I am not going all socialist on you. I have seen the MISTREATMENT of our veterans through the American version of socialized medicine. It is even more broken than what we are experiencing. 

BUT it should not cost us $36,500 a dose for four doses of medication that makes his chances of survival so much better! The total cost out of pocket would be $146,000. That's a staggering number.

So right now we continue to wait and pray that we get patient assistance. But even with it, the lost work hours, the miles of gas and wear and tear on your car, the parking - we are so blessed to be able to set our own schedule and to be able to work from anywhere. Others don't have jobs where they can work from MDA. They don't have reliable transportation. 

I look at what we have gone through both last year and now again these last 11 weeks. And I wonder how everyone else does this. This is hard, financially, physically, emotionally, and spiritually. It's hard on our family, our parents, Alan's sister, our grandparents, cousins, all of them. Because they all LOVE Alan. It's hard on our girls, esp. right now without treatment started. They are concerned with how bad it might get during this time. They are scared for the future. But due to where we are as a couple, they are taking their cues from us and are focused on enjoying every moment; Treasuring this Father's Day more than most!

As we said last year, we would rather go through this than someone without faith because at the end of this journey whether soon or far off, we know where we are headed when our life is over. We are so grateful for our salvation. It truly colors everything we do. But this journey is hard. I told my prayer warriors recently that I understood in a way I never did before how it would be possible to become hopeless in this journey without Christ. I also said that I understood how people end up divorced going through this. If we each were not putting Christ first in our own lives and then as a couple in our marriage, the emotional roller coaster could break us. 

I am so grateful that when we are broken inside, or when we are weak, or when we feel persecuted, or when we feel foresaken, we are able to cling to Christ and then to each other. 

Lord, bless those going through this journey. Draw them to you. Guide people into their lives to minister to them. Lord, protect their marriages, their hearts, their lives. Lord, guide our legislators to get their butts in gear and fix this broken system. Lord, keep our eyes intently focused on You. Draw us to You more and more every day. 

Guarding Our Hearts

“Guard your heart above all else, for it determines the course of your life.”

‭‭Proverbs‬ ‭4:23‬ ‭NLT‬‬

When I wrote about Fear, this passage came to me, but it didn't really fit with where God led that post. So here I am enjoying my study with my good friend Thomas the Toad, and God hits me with this again.

Guarding our hearts to me starts with guarding our minds. You see what we fixate on goes through our minds and becomes the desires of our heart. 

Let me give some examples:

• Mentally you notice the neighbors new Mazaretti. 
• The next day you think on just how gorgeous it is. 
• Then your mind starts saying, "Man, I wish I had a Mazaretti. 
• Then you become bitter you don't have one OR you make poor financial decisions to get one. 
• Your heart hurts either from the bitterness (souring relationships) or from the financial strain it is under. 

Now insert any number of things, new man, new girlfriend, child's athletic ability, friend's talent... our hearts get twisted into knots by what we focus on mentally. What we allow ourselves to daydream about. 

Fear/worry/anxiety/anger all come from that same place and can cause heart issues. It's not just about materialism, or jealousy. 

As mothers we can become so consumed with our children that we sacrifice other relationships, that we fear the unknown with them to a paralyzing level for us and sometimes for them. As wives, it's easy, especially before kids, to make our husbands our everything, putting them up on a pedestal, that I promise you they will fall off of at some point. 

Bottom line, when you focus your mind on anything other than Christ and His Word, your heart is no longer guarded. You are open season for Satan! And he would LOVE nothing more than to destroy you from the inside. So it is about filling our heads with those things that are righteous and holy. 

Right now cancer consumes our life, if it isn't appointments, it's setting up appointments, if it isn't that, it's talking about a plan, and if it isn't any of that, it's the concern over every groan he makes. And this is all understandable things, but cancer doesn't have to consume our hearts. In fact, it won't. Cancer can not claim our joy. Fear is a liar as I said before. So each morning and sometimes throughout the day, I refocus my mind on Him. Because without God at the center of this, really what hope do we have!

Dr. Dude

Today was the first day in a while that was a good MDA day!

Dr. Dude (Dr. Morris) was awesome. He truly cares about Alan. He answered all of our questions. He emailed a connection he had a Bristol Myers Squibb to try and help with PAP, if possible. He put us in touch with the business office person we needed to be talking to. 

All my concerns were alleviated. Alan asked all the questions he had. 

We will start treatment on July 6th. If we have been approved on PAP, great! If not, we will figure out self-paying. 

But no matter what we are starting treatment on July 6th, 3 months and 2 days after we found out he had two tumors. 

Current Prayer Requests

• PAP to be approved. 
• Alan to feel less fatigued. 
• Both of us to be less stressed. 

Thank you all!! Please celebrate with us!!

Waiting Game

Status Update

This afternoon we will meet with Dr. Morris to discuss what's occurred and next steps. At the same time, we are trying to find someone with connections at Bristol Myers Squibb. It does not appear any of the trial group doctors or Dr. Morris have any helpful connections. 

Hopefully we know in the next few days if not by the first of the week next week, if they will grant any patient assistance. We are solidifying the amount it would cost to pay out of pocket for ipilimumab. As neither of us are very hopeful about getting patient assistance. We've heard numbers from MDA personnel from 22,600 to 50,000 a dose. We don't know how much of that is their markup or what is true wholesale cost or what is the insurance negotiated rate. So we are working to get a final, true, lowest cost possible dollar amount from MDA. 

When you have had the business office of MDA be constantly hopeful about everything and everything they were hopeful for has fallen through, it's kinda like Charlie Brown and Sally with the football. 

Plus in truth our hope is never in man, BUT GOD!. The Lord doing a miracle in Alan's body is what I continue to pray for. Our hope is in The Lord showing the way, in Him opening the door or the window!

We have been so incredibly loved by Our Lord and His people during this. For that we will always be grateful. 

Everyone keeps asking what they can do. Right now all I can answer is pray. I know people want a way to help that they can feel and see. Unfortunately I just don't have any at the moment. Until we know BMS's decision on patient assistance, we continue to sit and wait. I promise you though your prayers are heard by Our Father, they are felt by us, and they are helping greatly. 

Update after the appointment with Morris. 

Fear is a liar...

As I sit out her this morning after my quiet time with The Lord, I realize how much fear plays a part in our decisions in life. 

I have never been one to not act because of fear. No, I am more the face-your-fears-and-beat-the-stuffing-outta-them kinda girl! In fact I've worked hard in my life to not let fear of anything ever control me. I would control my life to control any potential outcome fear would have. 

My dad is a strong, straight forward man, who for years I wasn't sure had any fears. My mom is a pull-yourself-up-by-your-boot-straps and move on woman. For years, as a little kid no one could have convinced me that she even knew what fear was. 

As I have grown and matured, and the grey hairs have progressed more rapidly than I would like, I have learned that everyone has fears. Some they don't ever realize until their world changes in the blink of an eye. 

Being a child of divorce, one of the things I fears without realizing it for years was not finding the man God wanted for me. I know that seems silly now since I married Alan at 22. But all my relationships, from the beginning of my "dating" life, were subject to some major litmus testing. 

In Junior High, it was note writing was huge. I'm a words of admiration girl, I discovered later. Since there were only two VERY short lived "boyfriends" in Junior High, this didn't fully play out. 

In High School, it was all about Height and Beliefs! If the boy was not taller than me (even an 1/8th of an inch would do), then dating was an automatic no! If they did not profess faith and weren't willing to go to church with me or at their own, it was a no! Looking back, I may have missed out on dating some awesome guys. But God knew what he was doing. 

Early college, my standards were about me having control. I didn't want anyone to hurt me, change me, or derail me. I had my life planned out. I was doing things my way. And if they didn't fit in that, they didn't last. I was so scared that they would mess up my plan. And in the end, Alan did just that! No one really lasted longer than 2 months of dating prior to meeting Alan. I wanted guys to measure up to my standards and my plan. I wasn't going to let anyone derail me from that.  

The plan had been to go to American University in Washington, D.C. for my masters after graduating from SMU. In March 2000, I got a medical diagnosis that changed my entire outlook. I'll explain in a later blog post the impact a two year time frame had on my faith, my life and who I am today. 

In Sept 2000, I met this incredible young man, who challenged my previous standards. He is shorter than me. At the time he wasn't a walking believer, but he agreed to go to church with me. He constantly wrote me notes. But the whole Washington, D.C. thing took a complete backburner. He grew in his faith and became an incredible man to lead our family. 

My fears at the time we met were that I would never have kids (the medical issue), that I wouldn't find the one man for me, and that my life wouldn't work out how I planned. By my third anniversary to the amazing man God had intended for me, Rebekah was here. The last one was all about me having control. I learned with the medical issue and with meeting Alan that I didn't want or need control. I wanted God first in all aspects of my life. God used the medical issue to shake me up and draw me back to Him. He brought Alan into my life to challenge my trust in Him even further. 

Today, I'll be honest. It is really hard not to fear the current unknown. It is hard not to fear losing my husband. It is hard to not let your mind go WAY down paths it has no business going down. And there are times it is a daily, hourly, heck minute by minute struggle. But what I have learned is that I fear when I step outside of seeking Him. If I keep my eyes focused on Christ and nothing else, I have no fear. Love, true, real love casts out fear. 

“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 ‭NLT‬‬

I love my Lord! Because He first loved me, even when I ran from Him, even when my fear of lacking control, caused me to grip tighter to the reins, He always loved me. But in 2000, God showed me, that my grip on the reins didn't cause the freedom I sought. His grip on my heart was the only thing that freed me from my fears. When I released my grip on my desire to control everything around me, His control over all took full hold and blessed me beyond all I could have imagined. It hasn't always been easy. But I will take God's path for me life over the life of fear I led trying to control everything. 

So as we walk the biggest unknown of our almost 16 year marriage and almost 18 years of knowing each other, I will cling to Christ and not fear, for HE is with us. 

P.S. I love this song...

https://youtu.be/1srs1YoTVzs

We make plans... But God!

So we as humans make our plans. But God...

So now is a time when I cling to a two word phrase that Larry, our wonderful pastor, says. BUT GOD. I am clinging to But God. 

But God, alone is in control. 

But God, alone knows what is and what will be. 

But God, is still in the miracle business. 

But God, will carry us through and show us the way. 

I'm sure I will come up with more But God statements as we walk this journey. Tonight, those are the four I cling to. 

In the meantime, we must make plans and see where each step leads, knowing that no matter what the results, Our God is in control and will carry us. 

Where we stand.....

At this moment, ipilumimab and nivolumab (ipi/nivo) immunotherapy is our best choice and only real option. 

BCBS has approved nivo only, which gives almost half the positive response and 15% fewer chance of survival in the first year of the ipi/nivo combo. 

Plan A - Dr. Morris (original GI Oncologist) is doing one more appeal to BCBS by Monday. This is an oncologist to oncologist appeal. If they deny again, which is the expected outcome, we move to Plan B. 

Plan B - Patient Assistance Program through Bristol Myers Squib. We have all of our paperwork into MDA's person who handles this. So the minute she gets the word from Dr. Morris, she will submit. That should take about a week to get an answer from BMS. If they deny assistance, we have Plan C or Plan D or Plan E.

Plan C - Appeal BMS' decision and try to further convince them that they should assist us in the EXORBITANT cost of ipilumimab. If still no, Plan D and E are both still options. 

Plan D - Appeal the BCBS decision to the Independent Review Organization process. This will take a LONG time and is doubtful to overturn BCBS' decision. 

Plan E - Come up with the money to self-pay. This can happen during the IRO process of Plan D. If the IRO overturned BCBS' decision, the money would be refunded to us. Again doubtful that IRO would side in our favor. 

Plan F - If we end up self-paying for this, we will then look at Mayo Clinic and the National Cancer Institute for additional trial options. At the moment the current trial options at MDA, he does not qualify for. Maybe in the future he will, but not at present. 

And this is where I leave you with, we are making these plans, BUT GOD. He will guide us through Plans A through Z if needed and back again. The key is that we keep our eyes focused on Him every step of the way. 

Prayer Needs:

Pray for miraculous healing. 

Pray for insurance approval. 

Pray for someone at MDA to realize that they should cover the cost since it's their fault. 

Pray that the drug manufacturer will approve our patient assistance application. 

Pray for our hearts. We are discouraged. 

Pray for the girls. They are discouraged. 

Ultimately, pray for our will to align with His Will and us to glorify Him every step of the way.