“Good news! He doesn’t have Leprosy!!” The young doctor burst into our room to make this announcement . . . almost knocking down the even younger OT tech standing in the doorway. I wish I’d been able to shoot a pic of that young tech’s face. Her eyes were huge and she almost ran from the room, never to return!
Yep, Leprosy was on the list of several rare diseases that they’ve been considering. Because of LeRoy’s many trips into Brazil and Africa, serving the “least of these,” holding the hands of the ill, picking up naked little ones wandering through the filthy streets, visiting invalids and prisoners in places we wouldn’t put a dog to live, the doctors had reason to think his symptoms, and the lesions on his spinal cord, were indicative of certain parasites (Schistosomiasis) or other rare diseases.
Now they are thinking it’s a rare autoimmune disease that they plan to treat with immune suppressant drugs (that sounds healthy, huh?), but they have one more blood test pending for Mayo Clinic to review. They are strongly leaning toward this being Devic’s (or NMO), but a rare form of that—one that is in like the 10% category of the 30% who are A-typical.
How’s that for rare?
But since they aren’t positive that’s what it is yet, I’m continuing to ask for prayer for a definitive diagnosis. I don’t want him put on high powered drugs that will deplete his immune system, especially if we’re not even positive that is what he has. I asked the doctor if that treatment would make him much more susceptible to illness. This particular doctor’s quick solution was, “Just don’t be around children.” (And I wish I’d had a pic of my expression when he said that.) Obviously he doesn’t know how important children are to my husband.
“He has six grandchildren!” My old fierceness was probably showing when I let the doctor know that. The doctor (quite young, unmarried, and he sounded like children disgusted him) replied with all the reasons children should not come near him.
But Children are Leroy’s Favorite People!
What these doctors don’t realize is that my husband spends as much time with little ones as he does adults. He’s on his knees talking to them before church, he’ll scoop up the snotty nosed ones and give them a hug without a thought of germs, little people are his favorite. And the children in our church adore their pastor. He’s not planning on bypassing the youngest in his flock.
Leprosy might’ve been the quicker fix . . .
We’re still in the early stages of this journey, but removing children from LeRoy’s life is not an option he’s going to want to choose. For the first time since all of this began, I’m starting to have concerns about some of the medical choices that are being made for him. But my uneasiness with medicine doesn’t outweigh our trust of the Sovereign rule of our Savior, and the faithfulness of the Father . . . but pray for us to have wisdom and discernment as we move forward.
They plan to do two more Plasma Exchange treatments, if he holds up, the last one is scheduled for Wednesday, which will make a total of seven. Hopefully, he won’t need to continue those once we leave the hospital.
The Plasma Exchange (PLEX) is removing the antibodies that are attacking his nervous system and replacing it with “clean” plasma. It leaves him feeling totally depleted and weak. We can tell that the treatments are helping him, he’s getting greater mobility. Although he’s still using the walker, the Physical Therapist has been helping him learn to operate with a cane for a couple rounds on the floor.
Please pray for relief from pain ~
Since the last PLEX treatment, he’s had intense pain, greater than any he’s ever experienced. The doctors think it may be due to the fact that the treatments are waking up (hopefully repairing) the damaged nerves. We hope that’s what it is. He’s been in pain for two years, but nothing like this and the strong pain medications aren’t eradicating the pain.
But even in his pain, this morning he prayed with his PCT who is from Sierra Leone, and hasn’t been able to find out if her family is safe or among the 600 missing due to the unprecedented flood that hit there a few days ago. Even through searing pain, he is communicating the love of Christ (when he can rouse himself up out of the fog of pain meds).
They are hitting him with mega drugs that keep him knocked out until another sharp pain hits, almost jerking him out of the bed. It’s excruciating to watch him endure so much pain, while at the same time being so doped up that he’s not aware of much of what’s happening. He hasn’t been himself at all since Saturday afternoon.
I miss my man.
I’m so grateful to all of you who’ve been faithfully lifting him up in prayer.
Today’s Scripture verse on the hospital white board:
[box]“The Spirit of the LORD gave them rest. You led Your people this way to make a glorious name for Yourself. From ancient times no one has heard, no one has listened, no eye has seen any God except You, who acts on behalf of the one who waits for Him.” (Isaiah 63:14; 64:4).[/box]
- PLEX treatments are almost over: five down and two to go!
- He doesn’t have Leprosy (although that’s curable, and perhaps an easier fix than autoimmune diseases). It’s not every day you think about needing to be thankful that you don’t have Leprosy, in this country at least.
- God’s faithful presence is a continual encouragement to us, He is keeping us in perfect peace as we travel this new road.
- We’re being carried to the throne of grace by believers from across the globe. We are deeply moved by the number of you who’ve left comments on the blog or supported us in prayer, and in so many practical ways . . . we are blown away by your love!
- Continue asking God for a definitive diagnosis and for wisdom with how we should move forward with the medical team’s recommendations.
- We would be grateful for God’s merciful work of healing, but ask for grace to receive whatever He has appointed for us.
- Please continue to pray for our daughter and the birth of her little one. As I type this, she hasn’t arrived yet, but may be here by the time this is posted!