Good morning, prayer-warrior friends! I feel like all I do anymore is ask you for prayer, and we can’t thank you enough for faithfully answering that call! This week, as we traveled to Dallas, as we sat in the Neurology clinic, anxiously awaiting news of LeRoy’s latest MRI, we could literally sense your prayers. Grateful. That’s a small word, but we are sending it out to you with enormous depth.
You’ve traveled this journey with us since August, and we’re blown away by your faithfulness to intercede for us.
First of all, we have to tell you—God remains faithful. He is at work. When I say we have some “bad” news, really, as a believer, no news is “bad” because we know that all we experience is directed under His sovereign care. We are in His hands—and that is the safest and best of all places, no matter what. Through all of this, we are seeing tangible evidence of Him doing the unexpected to spread His glory. And that’s all that matters.
On Wednesday, the neurology team gave us both good news and the “bad” news (their terminology).
First, the good news: The aggressive steroid treatment they’ve had LeRoy on for six weeks has significantly reduced the size of his spinal cord lesions. We praise the Lord for that! Dr. “G” took us on a tour of his MRI and even our untrained eyes could see how the lesions have shrunk! They no longer light up the entire length of his thoracic spinal cord, but just a sliver remains. But that leads me to share with you the “bad” news.
The bad news: The lesions that remain in the spinal cord are in an area that cause significant pain. The sensory fibers embedded in his muscles in that area are not functioning properly; they are sending nerve signals to the muscles to tighten, when they are already pulled too tightly.
Dr. G threw out some big words (that I asked him to spell) as he tried to explain why LeRoy is experiencing such excruciating pain. One of those words was: pro·pri·o·cep·tion (prō’prē-ō-sep’shŭn). (Warning: this part of my post is a bit technical and you may want to skip this next sentence.) Proprioception is a sense or perception, usually at a subconscious level, of the movements and position of the body and especially its limbs, independent of vision; this sense is gained primarily from input from sensory nerve terminals in muscles and tendons (muscle spindles).
But, LeRoy has lost this perception.
The problem is, LeRoy’s sensory nerves are confused and out of control! This is what’s causing his excruciating pain. His sensory nerves keep sending signals to his muscles to tighten, when actually they don’t need to tighten. His sense of where his foot is, or even his ability to feel his left leg and foot in motion, is gone—preventing him from being able to walk without some crutch-like device and special “sensory” inserts in his shoes.
Another piece of bad news is that spinal nerve damage is permanent. The damage he has throughout the nervous system can be repaired, but if the spinal cord is damaged that is permanent. They can’t tell yet if that’s the case with LeRoy’s injury, and the neurologist said he is hopeful the steroids will reduce the remaining lesion, but he can’t tell yet if that area will have permanent damage.
Here’s the Treatment Plan:
They are doing another round of the high powered steroids to see if that last spinal lesion can be reduced. But this much steroids is hard on the body; steroids are not something that can be taken long term. They are also adding some different meds to try to help with pain and sleep. We are both sleep deprived and that affects the body’s ability to recover and heal. (It also makes me a bit brain-wonky!)
So, that is a big prayer request: that the steroid treatment LeRoy is doing this month will remove that last lesion that is causing such pain and he will be able to sleep at night.
We return to Dallas the first week in December for another MRI. The plan is to put him on a new immunosuppressant drug at that time (Remicaide) that has to be administered at the hospital through IV. It costs thousands of dollars for every injection, so we are applying for financial aid for that medication.
That is another prayer request: that God would give favor with the financial assistance for this medical treatment.
The doctor believes this is Neurosarcoidosis rather than NMO (which is one thing specifically we were praying for!). Remember when I asked you to pray for that back in September?
Back then I let you know that they haven’t started the immunosuppressant drugs yet because they’re still trying to determine whether this is actually NMO or Neurosarcoidosis. If it is the second disease, the prognosis is much better, but we know that every cell of LeRoy’s body is in the Father’s hands—no matter the diagnosis.
The good news (if Dr. G is right and this is Neurosarcoidosis) is that this autoimmune disease often goes into remission after three or four years, if the meds keep it under control during that time.
Big prayer request: That the treatment (or the merciful hand of God) will send this disease into complete remission—soon!
We asked about whether LeRoy will need to get on disability and the doctor’s response was: “I believe your body will respond well to this treatment, and after a period of rest and recovery, you should be able to return to your work as a pastor.”
THAT made me want to jump up and do a happy dance in his office, but I refrained. He doesn’t know me that well, yet.
Thank you, thank you, for your prayers. It still looks like a long road ahead, but we left Dallas hopeful that the treatment will bring recovery and eventually pain relief. Thank you for continuing to uphold us in prayer and walk this faith journey with us.
This passage has been a recurring one to bring encouragement through this journey. Perhaps you need to be reminded of this today, too?
[box]Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand (Isaiah 41:10).[/box]
We prayed for a diagnosis and a treatment plan—and God answered. Thank you for praying with us!!