First IVIG infusion

 Day one of my many future infusions for my CIDP diagnosis. Today will be about 3 hours. Prayers appreciated. “Jesus led me all the way” was the song in my heart in the night. 🎶 http://barryshymns.blogspot.com/2016/01/jesus-led-me-all-way.html?m=1

PayPal Fundraiser active for those who have inquired

 We just set up the fundraiser on PayPal, and prayer is the main thing. This was done as a number asked if we were going to have one available. Here it is.  https://www.paypal.com/pools/c/92PqgxozPm

MRI and Port Placement

 MRI’s went well Monday. We have to wait for the neurologist to review. The one of the brain 🧠 (see below) was a concern to me when I read this text in the report (but then my medical training is minimal).  

Yesterday was port placement, and all went smoothly. I remember seeing the big lights in the operating room and I remember thinking how wonderfully cold it was in there (I prefer cold), and then NOTHING.

Tomorrow is my first of 5 “loading infusions” and then after those over a period of a week and a half, are infusions every 2 weeks. We have learned it can take 3-6 months to find out if it is effective. Apparently this treatment is effective in 75% of patients in slowing down, or reversing some of the effects of this life-long disease. Some of the effects of this illness I have been experiencing since I was honorably discharged from the Navy in 1979, and the symptoms are progressing rapidly now and can lead to total paralysis primarily of upper and lower limbs but can impact other functions such as swallowing and many others. We will be following a traditional/alternative protocol and will be doing other things traditional medicine may or may not approve of.

In view of the extent of the expenditures we have had over the past 5 years with Cheryl’s stage 3 cancer diagnosis (about $25,000 still owed) and now my CIDP diagnosis on February 21, some friends have asked us to set up a GoFundMe (or another platform if any recommend others), so we can continue alternative protocols as well. Stay tuned if that is something that interests you. Prayer is the main thing we wish for not funds, but we do want that avenue open to those who desire it.

Latest on Kevin

 Update on my CIDP (you can look it up and I will post a couple links) diagnosis: Monday I have 4 MRI’s (lumbar, cervical, thoracic and brain). Wednesday I get some anesthesia and port placement into an artery. Friday I begin with loading doses of IVIG. (5 total I think), then again the following Monday, then Wednesday. I recently lost 20 pounds (thank you to my dear wife) so that will help me in the days to follow, hoping to lose more. I looked at walkers and Medicare will provide one with tennis balls and no brakes. Thankful our church has loaned me the one I pictured earlier. I am no longer able to work, so appreciative also of those who have expressed concern on the financial side after five years of our fight with Cheryl’s stage 3 cancer diagnosis, much of which was alternative and not covered by insurance.

A New Diagnosis CIDP by Cheryl

Kevin was diagnosed last week (2/21/24) with CIDP, chronic inflammatory demyelinating polyneuropathy. It’s an autoimmune disease, and the body gets progressively weaker. It is a lifelong disease. Kevin has been using a cane for over a year and he now has a walker. His feet suddenly went numb, and that can happen in any part of his body. He is on pain medication and there will be more tests and regular infusions given of various chemo/medications. We know the Lord loves us and He is with us. We are praying for a reversal of symptoms. We would so appreciate prayer. Thank you.