Update: 4/30/23

 Psalm 71:1-3 “In You, O Lord, do I take refuge; let me never be put to shame! In Your righteousness deliver me and rescue me; incline Your ear to me, and save me! Be to me a rock of refuge, to which I may continuously come; You have given the command to save me, for You are my rock and my fortress.”

Miraculously, we were able to leave the ER at 12:30am. They didn’t find any bleeding in his head from his fall and they decided to add back some Dexamethasone (steroid) to help the swelling in his brain. We still are not seeing any help yet from the steroids, but we know it may take time. I already have left messages for his team when they get in tomorrow requesting inpatient rehab since some of his weakness is causing things I am not able to address at this point. Wayne is so weak this morning he couldn’t even dress himself and is struggling to even sit up in bed. Every moment seems daunting and helpless, yet I know it’s not hopeless because God has this and He knows exactly what I need. I’m believing God to move mountains and get Wayne the help he needs. Please pray with me that the team recognizes that he needs help beyond what I am capable of giving him at this point. I thought this stuff would come later since he did so well after surgery. If it’s not the swelling, I’m terrified that this aggressive tumor is just imbedding itself further into his motor cortex causing this weakness. 

Please also pray for Wayne as he is struggling with not being able to do anything. I can tell that it is starting to wear on his spirit. But God is good in the midst of all this hard. This song came on my playlist this morning and it spoke to my heart and encouraged me!

Emergency Room Visit: Prayer Request

Psalm 92:1-2 “It is good to give thanks to the Lord, to sing praises to Your name, O Most High; to declare Your steadfast love in the morning and Your faithfulness by night.”

We are at Northwestern at the ER to have Wayne checked out. Over the last 24 hours, his right side weakness has gotten worse. Tonight he fell at dinner and hit his head on the wall. About 15 minutes later, he had a seizure, which he hasn’t had since surgery. I called the neurology team and they told me I needed to bring him in to be evaluated. 

This whole journey feel like a crazy roller coaster. One minute we receive encouraging news, like the doctor hopes that the treatment we used 8 years ago may work again to treat this aggressive monster, and then we hit these hard times. It is hard to see him struggle to walk, talk, and even feed himself. He hides his weakness well in photos, but he’s struggling. We even have to help him lift his right leg into the car. That is just really hard to see my big strong husband struggling to do normal things.

On top of it all, Micaela and I were hit with some stomach bug. Thankfully, I am feeling better now. I guess it was God’s way of giving me enough sleep and rest to face tonight. Please pray with us that the doctors are able to figure out what is going on and get Wayne stabilized and for Micaela, who still isn’t feeling well. Please also pray that no one else gets sick!

Heaven Rules: Treatment Options

 Psalm 29:10-11 "The Lord sits enthroned over the flood; the Lord sits enthroned as king forever. May the Lord give strength to His people! May the Lord bless His people with peace!"

A few weeks ago leading up to Wayne's surgery, my friend Pam gave me the book "Heaven Rules" by Nancy DeMoss Wolgemuth. God's timing is always perfect. I normally read a book rather quickly, but in this case, the book is so rich with truth that I have been slowly reading it and savoring it. Each time I pick up the book, it has the reminder that I need. Heaven Rules! Here are a few quotes from the book. 

He is ruler over every diagnosis and prognosis, over all incomes and outcomes, over the most daunting challenges as well as the most seemingly trivial details of our lives...Cancer is not King. No pandemic is King. Financial concerns and crises are not King. Injustices committed against us or against those we love are not King. Only God is King. (pg. 29)

God is good even when you don't feel like He is good. God loves you with a steadfast love even when you feel like He has abandoned you. God is with you in the storm. He will never leave you! Remember what God has done in the past. Rely on His character. Rehearse His promises. Refrain from taking matters into your own hands. Don't let fear drive you to places God doesn't want you to go! God uses events that turn our world upside down to drive us to cling to Him. As we face medical fears and economic fears, we can lean entirely on Christ as our fortress and our strength. Wherever  trouble is present, God is more present! (page 79)

 Wayne’s favorite saying the last few weeks is that God has this (or God’s got this). That is because Wayne knows that heaven rules and God’s will is what will prevail, whether it’s to heal him this side of heaven or on the other side. If you need any encouragement and perspective in what you are facing, I highly recommend reading this book. 

This morning we met with Wayne’s oncologist and talked about different options that are available for treatment. The doctor told us that the best treatment, in his experience, is for Wayne to repeat what he did eight years ago. Since Wayne’s tumor has the markers to be responsive to temador, the kind of chemo that breaks the blood brain barrier, it is a wise move to try that again. He also said that adding radiation is the best way to attack this aggressive tumor. We didn’t think that radiation would be an option, but since it has been eight years, we are going to meet with the radiologist and see what plan they can come up with to treat this tumor. 

The plan will be for Wayne to do four weeks of radiation and chemo together and then do six months of just chemo. We are waiting to hear from Cleveland Clinic and Mayo to make sure we aren’t missing any other options at this time to try. But from what we understood at today’s meeting, the combo of radiation and chemo has been found to be the most effective treatment and that is why they recommend it the first time someone is diagnosed. There are other options available, but the doctor said not everyone responds to them, so he’d rather hit the tumor hard with what is known to be effective and save other things in case it doesn’t work. He informed us that Wayne’s tumor is very aggressive, but he’s hoping that we can repeat the success we saw eight years ago.

We were blessed yesterday when Grace was able to stop by and visit for the day. Since her team is back in Michigan and she had a free day, she was given permission to visit. Wayne really enjoyed spending time with her. She was also able to spend some time with her friends, which made her day. 

Surprising her friends!

Tonight I was able to get dressed up and hang out with my friend Sue at the CRU dinner. It was nice to get away and hear the amazing things God is doing in Chicago.

We appreciate all of you and your prayers. We still have a long road ahead of us and there are many unknowns, as these treatments aren’t without side effects, both short and long term. Please pray that God makes it crystal clear what steps we need to take. I will continue to keep everyone updated as we go. 

 

 

Lamenting at the Feet of Jesus

 Psalm 130:1-2 “Out of the depths I cry to You, O Lord! O Lord, hear my voice! Let Your ears be attentive to the voice of my pleas for mercy!”

A few weeks ago, Abigail sent me this amazing article about lamenting and how it is different from crying. You see lamenting involves turning to God, bringing your complaint, boldly asking for help, and then fully trusting God no matter the outcome. Last night, I felt like I was at a breaking point. I decided to skip church after feeling the Holy Spirit calling me to just spend some quiet time with Him pouring out my heart so He could minister to me. And that is what I did. I wrote out a lament to God and allowed myself to fully feel all these huge emotions that have been building inside of me. I experienced such a mix of emotions: sadness mingled with joy, brokenness mingled with hope. That time alone with God was unlike anything else I have experienced in a long time. My Abba Father met me there on my knees and He ministered to my heart. When I was done crying and lamenting, I spent the next thirty minutes worshiping the One who met me at my lowest and lifted my head. Maybe one day I will share my lament here. The lamenting of David in the Psalms have reached me in a new way. I feel like the cries of his heart mimic my own cries. 

Update on Wayne: Yesterday, we met with the post op team. We were hoping for some answers, but all we really accomplished was getting Wayne’s staples removed. Every other question we asked was either an unknown, since the detailed tumor report isn’t back, or we were told to ask our oncologist on Friday. So, we patiently wait for our appointment tomorrow with the oncologist. If they don’t have the full report, I don’t know if we can find out all of our options. Once again, it’s a time of waiting and patience.

We did use the time before the appointment to meet up with an old friend, Lori. It was wonderful to see her and catch up. 

Please pray for us tomorrow as we meet the oncologist. Will you pray with us that somehow that report comes in today before our appointment tomorrow? If no, we will trust God’s timing. Thank you for boldly going before God’s throne on our behalf. You will never know how much it means to us! **Update: 5:17pm - we got news that the report is in! We were able to forward it on to Cleveland Clinic so they can start working on options for us there as well.**

Gracefully Broken

 Job 1:20-21 "Then Job arose and tore his robe and shaved his head and fell on the ground and worshiped. And he said, 'Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord.'"

Mark 14:35-36 "And going a little farther, He fell on the ground and prayed that, if it were possible, the hour might pass from Him. And He said, "Abba, Father, all things are possible for you. Remove this cup from Me. Yet not what I will, but what You will."

Yesterday at church, as we sang "Gracefully Broken", I felt like the lyrics were written just for me. I feel so torn these days. I know that God can heal Wayne if that is in His will, but I also know that may not be the way God wants to answer. Sometimes ignorance is bliss. Eight years ago we did not know anything about brain cancer. This time around, we know a lot more about this cancer and are trying to balance having faith that God could heal, but also being practical and having things in order. There is nothing "normal" about having to discuss Wayne's wishes for treatment, and when to stop if he is unable to communicate that at a later point. There is nothing "normal" about discussing other depressing topics, like funeral options. How do you stay hopeful and keep trusting, when at the same time having a harsh reality screaming in your face?

It's hard to describe the feelings I am experiencing deep down inside of me. More and more, David's Psalms feel like my cries to God. 

Psalm 13:2 & 5-6 "How long must I take counsel in my soul and have sorrow in my heart all the day?...BUT I have trusted in Your steadfast love; my heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me." 

On the outside, it appears like I am holding it together, and yet I know that I am just one moment from the dam breaking inside. Every night and morning feels like a breaking point. When I hold Wayne and pray over him, I cannot help but pray the same way Jesus did in the garden. I tell God how much I love Wayne and how I know that if God wanted to, He could completely remove this monster from Wayne's brain. But in the same breath, I tell God that my arms are open and that Wayne is ultimately His and not mine. I tell God as much as it hurts, I want God's will and not my own will to be done. How can someone feel hopeful and broken at the same time? I don't know and yet somehow, I keep moving forward one step at a time, fully needing God to carry me. Sometimes I feel like I cannot get up, and then God uses someone's text or prayer to pick me up off the floor. Life has become a moment by moment surrender and battle of trusting and resting in who God is, even if sometimes it feels like it is too much. I think that is why the words from the song "Gracefully Broken" struck such a deep chord in the depths of my soul yesterday.

Gracefully Broken: Tasha Cobbs Leonard

Take all I have in these hands

And multiply, God (God), all that I am

And find my heart on the altar again

Set me on fire(ask him say), set me on fire

Here I am, God arms wide open

Pouring out my life

Gracefully broken

My heart stands in awe of Your name

Your mighty love stands strong to the end

You will fulfill Your purpose in me

You won't forsake me, You will be with me (You will be with me)

All to Jesus now (yes)

All to Jesus now

I'm holding nothing back

Holding nothing back

I surrender (I surrender)

It's only with God's strength and help that someone can stand in awe of God's name in the midst of such darkness surrounding them. Job was such an encouragement to me last time Wayne was going through brain cancer. This time, he continues to encourage my heart. How can someone who has lost everything here on earth cry out to God and worship Him? And yet that is what Job did. He worshiped God and he remembers that God brought him into this world and not matter what happens, Job blesses God's name. That is what I want to do with my life. Over the years as I have discipled the kids, my heart is always drawn to those in the Bible and great missionaries, whose lives were fully surrendered to God and God used them for great things. It has always been the cry of my heart to live for God in such a way that others see very clearly God's light displayed in me. The people we often times look up to from the past were humans just like us. If they could survive and thrive in daunting times and tribulations, why can't I? What was the secret to their success? They never lost sight of who God is and knew that He never left them or forgot about them. God is the same yesterday, today, and forever more, so I can rest and trust in that same promise. 

This struggle of battling fears, while trusting; holding tight, yet with open arms; sadness, mingled with the hope of Jesus is real. I can see it even playing out with my children. Today, Abigail shared a poem she wrote about the day Wayne walked her down the aisle. If you missed that post, here is the link. Abigail told me that I could share her poem with you. I think you will receive a glimpse into the battle raging in my children's hearts.

Here is a poem I wrote trying to get my feelings in order from this day.

Papa,

The very thought of you leaving rips my heart in two.

The thought of you not being there on my actual wedding day grieves me.

The thought that you may not hold a grandchild in your arms breaks my heart.

The thought that you may not meet the man who thinks that I’m the prettiest girl in the world tears me apart.

The thought that I won’t be able to come to you to talk about what God is teaching me, current events in our world, or just to get whatever is in my chest off breaks me. 

The thought of you not being here for the rest of my future life events turn me to tears.

The thought of not being able to come to you for godly wisdom or input has me frightened. 

The thought of my expectations for my future with you in it falling apart scares me more than anything else in the world. I need you!

But, I know that whatever the Lord does He is in control. 

I know that God is working all for my good and His glory. 

I know that you when you do die, you will be completely healed and rejoicing in heaven with your Savior. 

I know that despite this diagnosis, your life is still in the hands of God. 

I know that God will carry me through this trial even when I can’t take another step. 

I know that He is still good. 

I know even if you aren’t here for the events and chapters in my life that I want you to be in, God is going to get me through. 

I know that you have been the greatest dad, role model, and example of a godly husband that I could have asked for. 

Ultimately, I know that God loves you so much more than I do and that He is God and I am not. Despite my emotions and fears, all I can say is it is well with my soul.

It is well with my soul...that is what we cling to during this time. God is good, no matter the results. God will be glorified, even in the messy, dark days. And because He is good and loves us so much, we can truly say as David did in Psalm 73:26 "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

Thanks to our friends, we were able to sneak a date night in the midst of all the crazy. We visited our favorite restaurant from our hometown. We followed it up with the best ice cream from Plush Horse!

Wayne has rehab 3 times a week at Shirley Ryan Ability Lab. We are so thankful for the Kreider's hospitality which allows Wayne to rehab at one of the best places in the United States!

Please pray for us as Wednesday is Wayne's post op visit with the surgeon. We will either receive the detailed report of his tumor at that appointment or at his oncology appointment on Friday. We are praying for clear answers and wisdom as we move forward with treatment options. 

God's Perfect Timing

Ecclesiastes 3:1-4 "For everything here is a session, and a time for every matter under heaven: a time to be born, a time to die...a time to weep, and a time to laugh; a time to mourn, and a time to dance."

Psalm 127:3-5 "Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one's youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate."

God's timing is always perfect! A couple years ago, I watched my friend, whose husband also had glioblastoma, make memories with her children. They had requested that they walk down the aisle with their dad and have it recorded. They wanted to have that available to them when they got married. Abigail and I watched the video and viewed all the photos, with many tears in our eyes. Abigail told me on that day that if something starts to change with Wayne, she wanted to do something like that as well. In December when Wayne had his huge seizure, which landed us in the hospital, it started churning ideas in my head. 

Wayne continued to have seizures, including the most severe one on February 14th. It was at this time that I asked Wayne if he would be open to making a special video with the girls. He was very open to the idea, and so I started hatching a plan. Once again, God's timing is perfect. I realized that both Abigail and Grace would be home at the same time for spring break. We decided to go ahead and make plans for that time.

So, on March 10th, our family was able to make a special memory with our kids. We cannot thank those who helped make this come to fruition enough! I was able to find the girls dresses on Amazon and we borrowed veils from people at church. Two very special people donated their time and talent to record the memories through photos and video. Although this day was one of the most emotional days, it held such beauty as well. Wayne was still strong enough to walk each of his daughters down the aisle. He wrote a special blessing for each one of them, which I know they will treasure for the rest of their lives. Each of our daughters selected a song to do their daddy-daughter dance.  

Somehow when I uploaded them, all the pictures went out of order.

Abigail danced to "Daddy" by Abby Anderson

Grace danced to "My Girl" by the Temptations

Naomi danced to "Cinderella" by Steven Curtis Chapman

Micaela danced to "Always Be Your Baby" by Natalie Grant

Joella danced to "Daddy's Hands" by Holly Dunn

Sophia didn't want anything serious, so she chose "Macarena" by Los Del Rio

A group of women from church made each girl a special bouquet and they made Shan a boutonniere, which made him so proud.

These bouquets are actually cupcakes, which were donated by a very generous baker in town.

Each girl came through the door when Wayne's back was turned and then they surprised him.

My sharp looking men!

Our beautiful daughters!

Abigail wore my wedding dress.

Getting their hair done. Someone donated this service as well to our family. Too many people to thank!

We are so thankful for Amy for leading the way with her family and inspiring us with this idea. We are also thankful for Inheritance of Hope, which taught us to make lasting memories with our children. I know this day will forever be impressed on my heart and mind, and I know it will be for the girls as well as Shan. It is even more precious because this was done March 10th, just two weeks before we would find out that Wayne's cancer was back with a vengeance. We are so glad that we took the time to make these special memories. No matter what happens, the kids will have this available to them to use in the future if they need it. Our prayer of course is that Wayne will be here to walk them down the aisle himself, but if God decides to answer our prayers differently, we have given the girls a precious gift to treasure in the future.

I don't have the video yet, but I will share that in the future when I have it, or at least clips from it. Thank you again to each one who donated their time, energy and love on this special day for our kids!!

If you missed my update on Wayne, here is the update from yesterday.