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Breaking my Silence for an Update on LeRoy

There has been so much noise lately, and I’ve felt the need to be quiet. It has been a deeply painful and challenging season for us, but also for many across the globe, and although I’ve filled several pages in my personal journal, I’ve not felt the need to share anything here. At least, not until I started receiving requests from some of you, like this message from a precious reader who I’ve never met, but who faithfully intercedes for us:

“Before I went to bed last night, I looked again at your blog and your Instagram page to see if there were any updates.  When I didn’t see any, I just felt a burden to pray for you.  Again this morning, as I was writing the words, “That is why we never give up”, I felt compelled to pray for you and for LeRoy that you would not give up, though I know you are weary!  I prayed earnestly that you would find supernatural strength for whatever you are facing today.  I prayed that God in His mercy would give LeRoy some relief, and in turn, give you relief by seeing his pain eased.  I prayed that the Lord would remind you that “our present troubles are small and won’t last very long” (compared with eternity), but that “they produce for us a glory that vastly outweighs them and will last forever!”  I don’t know what glory the Lord is producing for, and in, yours and LeRoy’s hearts, but I know that it is good and it is for God’s glory because “God is good and does only good (Psalm 119:68).”

What a treasure, to receive these encouraging words and know that this woman of God faithfully prays for us. What undeserved grace.

And it is only by His grace that I’ve not lost heart in this season as we’ve been hit by personal loss and disappointment—admittedly, greater than any I’ve ever experienced—but also, as we continue to wait and ask God for mercy in sending LeRoy relief. (In case you’re a new reader here who is unaware of my husband’s condition, you can find more about his story by clicking here).

It occurred to me the other day, that you dear readers might not know that, although the doctors have prescribed many pain meds and various “nerve-numbing” drugs, LeRoy transitioned off all of the meds that affected his thinking and sobriety, within the first eighteen months of his spinal cord damage. None of those bottles of pills provided lasting relief for him, and many of them are addictive. All they did was dull his thinking and mess with his memory and ability to reason. He chose not to live in a drug-induced state—he could still feel the pain through the fog of drugs, so he said, “Why would I want to live being doped up while still in pain?”

So, when I mention his unrelenting pain to you—it isn’t a pain that is “imagined” or produced because of dependence on a narcotic or an addiction to any substance—it is debilitating nerve pain due to actual spinal cord damage that is irreparable. He does still take some non-habit-forming medication to help with the nerve burning and the muscle spasms, but in case you’ve been concerned that he is using opioids or other addictive pain killers, I assure you that he’s not.

He is one determined and courageous man. And his trust and dependence is on Christ—not any pain reliever.

So, if you’ve stuck with me this far through this long blog post—here’s the latest update on my man:

We were back in Dallas two weeks ago for lumbar and thoracic MRIs (while under heavy Covid-19 protocol). The day after those scans, LeRoy’s neurologist (through a tele-health call) took plenty of time with us and was very thorough. He gave us a better understanding of why stress, noise, sudden sounds . . . and even just the air from a fan blowing across his leg can trigger the horrific spasms.

First, the good news: Praise the Lord, there are no NEW lesions seen on his MRI. That’s a huge praise because the doctors are actually expecting that the sarcoidosis will probably show up again (because of the severity of his case and because it is so rare for it to go into remission).

But, of course, we know that complete remission is no problem for God.

The not-so-good news: There is scar tissue on the spinal cord that they can see on the MRI. The scar tissue will never resolve (unless God mercifully does that). His neurologist said the scarring might also be extending into the nerve root, but that isn’t something that will show up on the MRI.

The spinal cord scar tissue is a significant factor in his pain level.

The doctor went into a long explanation of why LeRoy is having such significant muscle spasms and how his lower motor neurons are triggered to go into hyper drive so easily. It was helpful for him to explain it to us like this:The normal tightening of the muscle that is triggered by neurons sending out the “fight or flight” signal have gone into “hyper-active” mode because the “adult chaperones” are no longer there to tell these motor neurons that “Everything is ok, no need to be alarmed.”

To try to find a solution for the “missing adult chaperones” the doctor wants to go through a titration cycle with four different anti-seizure drugs (trying one at a time) to try to find one that might lower that hair trigger response to stimuli that brings on the relentless and horrific muscle spasms. The doctor is hopeful that LeRoy will see measured improvement with one of these.

We left Dallas hopeful and started the new medication right away. Within forty-eight hours, he was feeling better than he has in almost three years, and I was getting very excited. LeRoy was still cautious, he’s been hopeful so many times, only to be followed by disappointing results.

Although things started well, less than a week into taking that med, LeRoy was having weird side effects. We contacted the doctor, and in less than an hour he responded with instructions to immediately cut the dosage in half. We did that. And as of this writing, LeRoy is right back where he was with intense spasms and pain. It may take a lot of trial and error to find what works, but since he had several good days before the side effects started, I still have hope for him to have some relief with one of these medications.

The doctor also warned us to continue with the Covid-19 protocol that we’ve been on: not risking being around people who haven’t been in isolation and for me to refrain from any public outings (like grocery shopping) during Covid. He said there isn’t enough data at this point to know how LeRoy’s antibodies would react to this virus and said if he stopped following this protocol, it would be like playing Russian Roulette—it’s just too dangerous. Even though some people think the virus is no big deal, it could kill my man, so we’re continuing to “shelter in place.” We’re on Day 99 of isolation by the way.

We have so many precious friends and loved ones who are suffering right now. Friends who’ve lost a loved one to the virus, friends who are experiencing the pain of being separated from a mom in the hospital, we have a family member dealing with a serious life-threatening cancer diagnosis, friends who are carrying deeply painful wounds that are too horrific to even express. With so much trauma surrounding us, it is hard to know what to say, what to share that might encourage you to not lose heart. So, I’m glad that the friend who sent the message I quoted at the beginning of this post was able to say it for me:

“God is good and does only good (Psalm 119:68).” And “That is why we never give up.”

So true, dear friend, so true.

We’re hopeful and so very thankful that LeRoy’s spinal cord showed no signs of new Neurosarcoidosis lesions at this point. That is worthy of a big word of praise. Thank you for your continued prayers and support.

26 Comments

  • Marilda Tuomala

    May this bring encouragement for you both – you are both being bathed in prayer by many: Psalm 140-150

  • Jamie

    Dear Kim,
    Thank you for the update. I too pray for you both often, as the Lord brings you to my mind. I should tell people more often that I am praying for them. Especially during this difficult time of social distancing, we should be reaching out more to those we love. I feel like you are a part of my family. I have learned so much from you, from your speaking and from your books. My heart just aches for you both as you suffer. Your faith in Christ and in God’s sustaining and healing power is so encouraging. I too am praying for total healing for your man and strength for you as you care for him. May the Lord bless you both as you continue to praise His name to the nations. Oh, how we long for eternity together, come quickly Lord Jesus.

  • Stephanie

    Good Morning Kim!
    I’m so glad to read this update. I have continued to pray. My words are not adequate to express my feelings, but your friends message to you is also my prayer. Her words are so eloquent and encouraging, thank you for sharing.
    ❤️Praying earnestly.

  • Joy Miller

    Thank you for the update. I see Christ in you and in LeRoy! While I have no experience with his diagnosis and cannot even imagine the suffering he is enduring, I do know something about severe medical conditions. My only child and son Jonathan spent years in and out of hospitals. What finally helped him the most was not one single medication but a “cocktail” his specialist designed for him. By using a combination of 3 drugs at the smallest possible doses and strengths, he was able to effectively treat Jonathan with fewer side effects. It took years to find this treatment. I am praying that God will meet every need you and LeRoy have, including relief from the pain or His strength and courage to continue to bear it. And if it will help in any way, you are welcome to learn about Jonathan and his struggles and victories by going to In Touch Ministries on the web, on Facebook, or YouTube and watching their newly released video about him. The title is “The Disciple” or “Some Kind of Different.” May the Lord richly bless you today and every day for the blessings you two are to me and so many others.

  • Terri T

    Good morning Kimberly. Thank you for the update. I am praying with you for the new medication to help and quickly. It was good to see your smiling face on Grounded a few weeks ago, even if it was for only a short time. Be sure that you are not forgotten nor alone. <3

  • Barb Peachey

    I think of you and pray for you tho we have never met .. your faithful endurance is so encouraging… oh how we pray for grace for you and a song for your journey… and the real presence of Gods arms around you

  • Tracy Garcia

    Thank you for the update Kimberly. I will continue to pray for you and Leroy. May He continue to minister to your needs in a way that only He can.

  • Cynthia

    Thank you so much for the update, Kim. May you and Leroy have tangible evidence today of God’s everlasting arms underneath you, of His love as your continual refuge. And may His kindness include longterm relief soon. 🙏🏽🙏🏽🙏🏽

  • Sandra Diehl

    Thanks for sharing, I have been thinking of you and wondering how you both were doing. I will not forget you . Praying for all the Miracles . Your light shines brightly. God Bless ♥️🙏

  • Melinda Thomas

    Kim thank you so much for the update! I think and pray for y’all daily! I pray one of the new meds will help him. So sorry he had side effects to the first one. Praying they will find one that works with no side effects!
    Steve is doing ok. He has had three chemo treatments with know major side effects just fatigue and weakness in his legs. He has a PET scan scheduled June 24th. Praying it shows the chemo is working. If it is working he will continue with the same chemo. If not Dr will change up the chemo treatment. So we are just praying for good results from the PET scan. Thanks for your continue prayers!
    We love y’all! ❤️
    Melinda

  • Vicki Bedford

    Oh, Kimberly. Thank you for the update. I’m thankful for the brief, slight respite from the pain/spasms but am sad that serious relief has not happened. Praying for LeRoy and you and your family. I am confident that God hears and cares, but I don’t claim to have any answers. I’m thankful that you and LeRoy have a deep love and respect for one another and thankful to know that God loves each of you even more than you love one another.

  • Donna Doverspike

    Kim and LeRoy,

    So thankful for the update. My continued prayers for the both of you, stay strong and in his word.

    Hugs
    Donna

  • kimberlywagner

    Thank you for your kind encouragement, Jamie. Your comment was a true blessing!Yes, longing for eternity . . . I am joining you with that cry: Come quickly, Lord Jesus!

  • kimberlywagner

    Thank you for letting me know about your son, Joy, I look forward to watching the video! I’m so grateful for the specific ways you’re praying for us–and that you’re praying as one who can pray with the experience and compassion of one who has walked a similar road.

  • kimberlywagner

    Praising the Lord for this update on Steve, Melinda! (He was anonymously mentioned in the blog post : ) ). Please let us know how the scan goes. We continue to lift you all up in prayer, and thank you for interceding for us.
    Love you all ~

  • kimberlywagner

    Yes, Vicki, knowing God’s faithful love is what keeps us going! Thank you so very much for your kind comment and for your prayers, so grateful, friend. And good to hear from you!

  • kimberlywagner

    Sending hugs back to you, Donna. You are such a faithful prayer warrior for us. I long to tell you one day that your many, many prayers have been mercifully answered! But until then, we wait and pray, and stay tethered to His Word.

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