Ron's MRI and ECP #50

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

Two Happy Birthdays for Ron

I can keep track of Ron's appointments, medications,test results and also contact any of Ron's doctors through the U of M Patient Portal. It is a convenient, helpful system which we have used a lot. Last Friday I sent a message to Ron's neurologist, and he responded that same day. On Monday I sent him a summary sheet of Ron's complications from the transplant and the more recent changes that have occurred since his hospitalization for staph pneumonia in January-February 2013. It was sobering to see all of that information on one piece of paper. He has been through hell but amazingly, considers to see his glass as half full. His office then called on Wednesday and told us that Ron could be seen on Thursday afternoon. It just felt like something we had to do, so we changed some other plans and made a day trip to Ann Arbor yesterday and spent almost 2 hours with the neurologist who had seen him in January. It was good that he had a baseline for comparison of Ron's cognitive and motor skills. Ron did have more difficulty with the tests and tasks yesterday, so the next step is a full work-up with the Neuropsychology Clinic at U of M and an MRI. Amazingly, the stars aligned, and we were able to schedule both appointments for the coming Tuesday. For the clinic appointment, someone had just canceled for that Tuesday appointment which we filled, or the next open appointment was in December.
We are in scary territory, but maybe we will have some answers and a course of treatment soon. This offered a sense of relief in some ways, and we actually felt light-hearted on the way home.

If you follow the blog and would like to send a birthday card to Ron, his 65th birthday is September 4. We are planning a short trip to Bowling Green, Ohio, to celebrate with Cale's family on his birthday. We also pass the two year anniversary of his bone marrow transplant tomorrow.

Much love to all of you and thank you for your support in many ways. We are both grateful for your positive thoughts, good wishes, and prayers. This tumultuous journey started almost 3 1/2 years ago with his first diagnosis of acute myeloid leukemia.

Hanging in there,
Ron and Jan

Update after Ann Arbor..

We were in Ann Arbor 3 days this week. Ron has made some improvement with the med change, and I feel like that particular med did aggravate whatever is causing his recovery to stall, but things are not "all better". So the next step is an appointment with his neurologist who Ron last saw in January. Maybe he will be able to provide us with some answers and/or change his medications if necessary.
We also met with the dentist, and she recommended 8 extractions, so we go back to the oral surgeon in September. The amount of decay, its proximity to the bone, and broken teeth are the reason for oral surgery. It is hard to know when/what to put him through. Although the chemo played a part in this, Dr. Mag says the decay is more due to chronic GVHD in his mouth which causes dry mouth.
So we move on, and Ron will taper ECP to once a month in September. That was good news! He is being scheduled to see his BMT doc every 6 weeks as we move past the two year anniversary of the transplant August 24. So hoping that the neurologist can provide direction with addressing the cognitive issues.
Both of us are enjoying the cooler weather, and we were out on the pontoon today. I feel like I have a better handle on taking care of this property. Things seemed a little overwhelming for awhile during the summer. I am cleaning out things and simplifying, and George continues to faithfully mow the yard for us. We have had twin fawns and a doe out by our garden. Sadly, "sad duck" has disappeared from the lake. We had enjoyed him for several years.

Two Entries Today....

I have shown restraint to not put our most joyful news of the year in the blog. I can wait no longer!! Ron and I will be blessed with our ninth grandchild in January. Andrew and Lisa are expecting a sibling for Abby. Next month they will learn if the baby is a boy or girl, breaking our tie of 4 granddaughters and 4 grandsons. The first 8 grandchildren arrived in 7 years, so this baby seems extra special since it will arrive 5 1/2 years after Allison, our youngest, was born. Big sister Abby will be 6 1/2 by then.
Woo!! Hoo!!
Congratulations to Andrew, Lisa, and Abby!! Baby Hover will be born in Landstuhl, Germany where Andy and Cale were born when we were stationed in Baumholder, Germany.
Love,
Pa & Grammy

Moving on...

My project of cleaning out this house and garage has taken on a life of its own. I am making good progress, but it is a huge undertaking. I have spent the last few days going through tubs of pictures and other momentos. Ron and I have both loved photography, so we have overdone it, and I can't understand now why we didn't throw bad pictures away consistently over the years. It has been fun reminiscing and feeling once again thankful for all the experiences we have shared as a family. Because Ron and I are both sentimental, we have collected a huge amount of stuff. That being said, I have 5 more garbage bags of stuff ready for trash pick up Friday. I can almost hear the kids cheering.

Ron definitely is doing better than the "low week" when he fell; also at that time, I took a hard look at the confusion he was experiencing and his behavioral changes. This was 3 weeks ago, and he is definitely better since not taking Noxafil which is an anti fungal med. He continues to take 2 antibiotics, an anti viral, low dose of steroids, vitamins and minerals, and meds to improve lung function. He only takes meds twice a day, and his high blood sugar is nearly resolved. Six more weeks and we should be able to taper our number of trips to AA. By winter I am so hopeful that monthly appointments will be adequate. August 24 will be the two year anniversary of the transplant.

Back to School! How did that time of year roll around so quickly?! This is a busy day for daughter in law, Lisa. She and Abby are moving on post while Andrew is TDY in Miami, FL. They have housing on Vogelweh for those Army friends who are familiar with the Landstuhl, Germany area. I am so glad that they will be living on post. Hope you are enjoying the end of summer weeks and looking forward to the beautiful fall season. This cooler weather has me thinking of fall colors! Ron and I both love autumn.

Moving On...

Things have continued to moderate which is very acceptable to me. I think that I am prepared for accepting that there are just going to be more instances of "not Ron" behavior. Yet at the same time I am trying to not worry about what that might be because there is no predicting! Life continues to be an adventure. Because Ron's fuzzy blanket slips on the leather recliner, he duct taped it to the chair. Because he has bumped countertop corners which tear his skin, he has scotch taped countertop corners. He puts return address labels on furniture, his canes,items of clothing, baseball hats, etc. At the same time, most of his behavior is totally like it used to be, so as I said there's no predicting.
Yesterday we went to Battle Creek, Michigan, to get his new military ID. Medicare will become his primary health insurance September 1, and Tricare his secondary. So hoping that this will be a seamless change!
I am enjoying this very unlike cool August weather. It makes me wonder about the upcoming winter. I do continue to enjoy my gardening, and Mother Nature has cooperated by sending frequent rain this summer, so I have not needed to water much at all. Everything is still green! The biggest problem has been moles burroughing through the yard.
Love to all of you. Thanks for keeping in touch and following Ron's journey.