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.