Sometimes it is just harder to write a post for our blog. This is one of those times.
We were in Ann Arbor 3 days last week. The first day was for Ron's neurology follow-up appointments which included an MRI. Facing unknown territory was scary for me. Ron had his light therapy treatments Wednesday and Thursday, so the same 5 nurses in this treatment area have become a support group and a professional and personal sounding board for my concerns. As Ron has his treatment which lasts overall about two hours, I talk to the nurses. They have a variety of personalities but all are so nurturing to both of us. We share our family pictures and stories as well as issues regarding care of aging parents and of course, Ron's recovery. Thursday's treatment was #50, so we have spent a lot of time together. They urged me to talk to Ron's PA this week and to contact the bone marrow transplant social worker who has frequently made contact with us during Ron's hospitalizations. She also gave us the information for finding an apartment when we moved to Ann Arbor in August 2011. I follow their suggestions.
The results of Tuesday's MRI were sent to the neurologist who then discussed them with Dr. Mag. It would appear from the MRI that Ron has a brain infection. His symptoms which have been slowly progressing since his hospitalization for staph pneumonia in January-February, are consistent with this probable diagnosis. Ron will have a spinal tap some time this week to confirm this diagnosis and/or find which virus is causing the infection. Then a course of action can be determined. We are still planning to make our BG trip Wednesday (Ron's 65th birthday) through Saturday. The current plan is to schedule the spinal tap Thursday, which will be a side trip to AA, and return to BG afterwards. The BMT Clinic called me twice Friday to put the plans into motion. I asked them to please not schedule it on his birthday.
Ron is somewhat like himself part of the time with odd behaviors part of the time. He walks with his cane, but his movements are slow and not a smooth gait. He is very fatigued and sleeps 14-16 hours most days or sits with his eyes closed. He doesn't really seem to fully process what is going on medically. He is still very interested in the Tigers MLB and excited about the start of college and professional football. ...Going to relax and catch up on a few things around the yard, gardens, and house this weekend.
Love to all,
Ron & Jan
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Jan, I know how disillusioning it is to feel like everything is going along well and then a bump in the road pops up. Try to remain strong as I know you both are. I had to adopt the Bible Verse: "I can do everything through Him who gives me strength." Phil. 4:13 while Laurie was sick and it got me through a lot. I know you will get through this but also know that everyone is sending prayers from across the US for you two for peace and comfort for you both. Love and hugs, Ann & Bob
ReplyDeleteJan, An extra hug to you right now. You can pass that on to Mr.Ron too.
ReplyDeleteWe miss seeing both of you and talk about you often. Wish we were still in BG, might catch a glimpse as you pass through now and then. As Gilda Radner used to say, " It's always something." Keep up your strong spirit and press on. Know you both will. We are with you in spirit. Didn't know Ron was such a youngster...I am his elder. Scary eh !!! Give him birthday high fives from the Ginster. Love you guys, Ginny and Hutch
Wow----the train doesn't seem to stop! Perhaps this most recent diagnosis will help solve the confusion issues for Ron and meds will turn that around. Hopefully you will be able to get to BG---maybe Nancy and I will have the chance to visit with you, like old times. Thinking of you often and praying for Ron's recovery. Happy Birthday, Ron!....Chip
ReplyDeleteHoping these latest tests will give answers for treatment. Sending extra hugs your way . Know that you are constantly in our thoughts and prayers. Hang in there...Happy 65th birthday! Love, Ned & Terry
ReplyDeleteThank so much everyone for your words of support. Our family appreciates your friendship so much.
ReplyDeleteLove,
Nicci
I'm standing here in tears, and my "big" problems seem so small and welcome right now as I try to contemplate the hardships you are enduring. We are all thinking of you guys, and have been reading these blogs with hope and anticipation for a long time. (We aren't much for texting and computers, but your progress through this trial has been a part of many conversations here at home.) You are in our hearts, Ron, Jan, kids. I am sending all the loving vibes possible straight to you, and pray this is just a big bump in a road that we all desperately want to smooth out for you. Take care of yourselves. Lots of hugs your way. We love you all! Sally, Nancy and Family.
ReplyDeleteThanks so much to all of you.
ReplyDelete