Ron's Obituary and Celebration of Life

I couldn't figure out how to put a direct link for Ron's obituary on the blog, but if you google the following, you will be able to read it.

Deck-Hanneman Funeral Home obituaries

A celebration of Ron's life will start with a service at 11:00 on Saturday, April 8. We hope that many of our family's relatives and friends will be able to spend part or all of his celebration with us. Approximately 11:30-3:00 we look forward to a time to socialize and have refreshments. Both parts of the celebration will be held at Deck-Hanneman Funeral Home, Bowling Green, Ohio.
Thanks for your support, kind words, and prayers for our family.
Love, Jan

Ron is at peace. February 24, 2017

Ron passed away at about 6:30 this evening. Overall, it was a peaceful day. Cale and Jessica spent part of the day with us, coming and going before and after Anne and George came from Indiana. Matt arrived from VA about 5:30. I had told Ron that he was coming, and I think he held on to see Matt. We are so grateful that the suffering of this great warrior has ended.
We will celebrate his life in Bowling Green in April.
Love, Jan

Five and one-half years ago today

5.5 years ago today we waited anxiously for the word that Stefan's gift of stem cells for Ron's bone marrow transplant had arrived in Detroit from Sweden. Stefan was one of three, but the only one in the world, that was a match and available to make the donation. He had registered in Be The Match 25 years earlier when in college. His gift allowed us to make many more wonderful memories in spite of the medical complications Ron has endured. At the time of the transplant Ron had just entered his second remission from AML leukemia after nine months of his first remission. It was 7 years ago when Ron started to have sickness that was determined to be leukemia when a blood test was taken the last day of March 2010. He was very sick by then and arrived at U of M on April 1, 2010.

So now we are coming to the end of this journey. Ron is resting peacefully and after having morphine increased to every hour yesterday afternoon and evening and finally getting ahead of all discomfort, morphine every 2-3 hours is keeping him peaceful.
I am feeling so much gratitude for the many doctors, P.A.s, nurses, specialists, aides, family, and many friends who have supported us in such a variety of ways. We are at peace and have no regrets with our decisions.
Love and thanks to all of you,
Ron & Jan

Update on Ron 2-23-17

Ron's condition changed drastically overnight. We watched basketball, and he kept score sheets last evening. At 4:30 AM, I woke up thinking that he was having a bad dream. He had respiratory distress and told me that he couldn't get enough air. I adjusted his oxygenator from 6 to 7 liters, but he did not get relief, so I went to get the nurse. He had 102.4 fever. He was given tylenol and anti anxiety meds, but eventually, he needed the oxygenator set on 10 liters where it has been for almost all day. Dr. Wojo has been in to see him 3 times, and his morphine has been adjusted to keep him comfortable. Comfort and dignity are the goals. His level of discomfort and distress varied over the morning, but he has been comfortable most of the time since noon.
His brother and wife, Rick and Tammy, came today, and Jessica has spent the day with me. Cale has the flu but came briefly. Their Pastor also spent time with us, and Jessica's mother has been here, too.

Daytona 500 at the Manor

By evening last night Ron told me that it would be too much to go home to the Villa for the Daytona 500. This morning one of the physical therapists saw me getting some ice for our cooler that we keep in the room. She asked to speak to me and seemed to be relieved that we had chosen not to undertake such an outing. I think our first outing will just be a ride in the car. The staff will help me transfer Ron wheelchair to car and back again when we return. We might even go to the Villa, park backwards in the garage, and put down the screen garage door. We can look out the screen, and I could bring Blue out to the car. We would use a couple oxygen tanks and not be gone long enough to require an electric oxygenator.
Ron is making progress every day in therapy but is far from being able to go home with only me to help him move. (He requires two strong aides to assist him in moves.) He is proud that he is still in the fight. Me, too. There is no crystal ball. Our plan has not changed; no new meds will be added, no more immunity infusions or IVs of any kind. I am at peace with our plan once again.

One month and counting...

I took Ron to the ER in Bowling Green on January 21 (ER to their ICU); 12 hours later he was admitted to U of M Hospitals-Mott Hospital. (Then to ICU in University Hospital and back to Mott) Seven days later he was admitted to BG Manor with hospice services. He was on hospice for 19 days, and now he is in the same facility with skilled nursing services and rehab. Today he was planning with Doctor Wojo how he could go to the Villa to watch the Daytona 500 on Sunday. Really!! I will need to find manpower to get him from the car, up two stairs, and to his chair. We have a wheelchair at home but will need oxygen tanks again. There is some planning to do if this is going to happen!! The electric oxygen machine that we had at home only went to 5 liters, and he is now on 6 liters. I can hardly believe that this is a consideration!
Ron is making progress in therapy; he needs two people to transfer him, and he has an air mattress here, so it is too early to think of him going home. (But I am very sure that he is thinking of it!) He is having therapy 5 days a week. Stay tuned!

Ron being Ron

Why should I have expected any less? Ron is a fighter and continues to feel better. They no longer use the lift to transfer him. Two aides help him to his feet, and he baby-steps it to the chair or wheelchair. He is eating well, and we went outside for awhile yesterday. Wonderful and hard to believe it's February. In the courtyard we discovered that the daffodils have started to grow!
Ron is sleeping about 9 hours at night and takes random naps. Physical therapy will resume tomorrow. "Never give up."

Discharged from hospice services

Ron has had another productive day. He had his first physical therapy work in his room. He is no longer receiving hospice services, so physical and occupational therapy are available. He is receiving skilled nursing care. What that means is that he's in the same room at BG Manor, Dr. Wojo continues to be his physician, he has the same nurses and aides (but the hospice nurse does not visit twice a week), he has the same equipment and supplies available, but hospice doesn't provide it.
Ron is now able to move himself in bed, sit up in bed, and swing his legs over the side. He needs two aides to help him stand before taking tiny steps to his chair or wheelchair. He was outside his room and in a wheelchair for the first time yesterday and enjoyed looking out the windows and seeing the birds in a lounge. He has the will to receive physical therapy, so he can regain strength. Both of us have enjoyed visits from friends and family. I continue to sleep here at night but have been leaving for a couple hours during each day. we are less than 5 minutes from our villa.
The kidney specialist at U of M had an ultrasound of Ron's kidneys done to see if an answer could be found for renal failure. They considered a one time dialysis. After the ultrasound he drew a sketch to show me where the injury was that prevented his kidneys from filtering toxins, and he told me that the good news was that his kidneys might repair themselves from this injury which might have been caused from low blood pressure or the fall. Evidently that repair, at least partially, has happened. However, I must remember that his lung damage and compromised immunity cannot be fixed, and they cause a strain on his heart. Perhaps he has more surprises in store for me! The decision to request discharge from hospice services was made to honor his wishes to "never give up" by adding therapy to his healthcare. Therapy is not provided for hospice patients.

Our first Valentine's Day 1966; ages 17 & 19

More surprises. Last night about 2AM, Ron calls out to me and asks if we have anything in the room to eat because he is hungry. Again he is sitting on the side of his bed, feet dangling. So he had Oreos and Pepsi in the middle of the night! He has had 3 meals and snacks today; he is hungry. He told his friend Jim this morning that he could sit up on the side of the bed but knew that he could not stand up. So glad that he realizes that! He has made a couple transfers to his bedside chair by stand and sidestep with help from 2 aides.
Dr. Wojo made rounds today, and I was ready to beg for some PT for Ron, but he could see the improvements first hand. Hopefully, things have shifted from just comfort care (Hospice) to palliative care which will be comfort care and PT. He will need to continue to show progress. An infection could be devastating, and he would probably go back on hospice services. Things are in motion to make that change, but it hasn't formally happened yet.
When Ron was up at U of M, he was so sick from renal failure that he was very confused at times, couldn't move himself in bed, and couldn't feed himself. He also had injuries from his fall and had had a mild heart attack. Ron has improved enough that he wants to continue the fight. "I'm not ready to throw in the towel"; "Well, I'm NOT just going to quit." "I want to work towards going home." He continues to be the bravest person that I have ever known.

Keeping Comfortable

I can almost forget that Ron would have pain if not taking oxycodone regularly. At 2AM on Friday, he called out to me to help him get into the bathroom. As I got out of my bed to remind him that he has a catheter, I found him sitting on the edge of the bed. I couldn't believe it; he has been in bed or transported with a lift for 3 weeks now.
He is getting great care here at BG Manor. If I would take him home with hospice services, I would have to hire help to use the lift and do a variety of other things, too. Today he is resolved about staying here. I have played this over and over in my mind--especially when he is having a good period of time. With no bloodwork or urinalysis now, I really don't know where he is medically. It seems strange as we have followed his bloodwork for almost 7 years. He typically does not run a fever, but his temp has been in the 99s a few times in the past 3 weeks. Although that doesn't sound like anything, his temp had been in the 97s for a very long time.

Not Easy

I guess I had thought that these days would play out like an even-keeled decline, but that has not been the reality. At times Ron is very alert, philosophical, and talkative with a strong voice. Then he might nap for a few hours and awaken with a weak, quiet voice. He has had periods of anger about not being able to go home. The oxy keeps him mostly comfortable. Because he doesn't understand his limitations or understand the care he requires, he doesn't understand why he can't go home or go other places. Today he slept until near noon, again not eating anything until late afternoon. His mood is unpredictable and can change quickly. Last night he asked me why I got to sleep in a bed while he had to sleep in a chair, so I'm not sure what he is thinking at times.
The timeline is very unpredictable, so we just do the best we can.

No More

The rain has changed to snowfall to a cold, windy, blue skies day. This seems more like Ohio February. Ron has his fuzzy blankets, and I am wrapped in a yellow prayer shawl that my niece Kara has passed on to me. The emphasis for Ron's care is comfort, and I have found comfort in Kara's shawl.
Ron continues to have chest pain periodically through the day. It is sharp pain in his lungs, and the oxycodone brings him relief. He can now have half doses between his scheduled doses if needed. Today was scheduled to be an "Ann Arbor Day"; it was time for his February immunity infusion. The renal failure and fall at home were the tipping point which has led to Hospice care. The stress on his heart from renal and respiratory distress led to some heart damage. There were just too many things going on this time. Even Ron said, it's different this time." Yesterday he told me that he felt like his whole body was disintegrating, and he ached all over. He also had a dream that he was walking device-free down a long alley. On the right was a bright yellow house that he had helped to paint. On the left was a huge medical complex. As he walked down the alley, doors opened from the hospital, and carousels came out that had medical care staff revolving on them. As each new carousel came out a door, he would say, "no more" and keep walking.

A visit by Blue

Ron has not felt as good today. He didn't eat any breakfast or lunch, and he had pain in his chest but consistently scores it 3 on a scale of 10. Dr. Wojo visited him twice. He had nitro to see if it might be related to his heart, but hot compresses on his chest helped the most. (And oxy) He has a slight fever. He didn't want to get out of the bed today, just feeling that the whole lift routine was too much. He cannot bear any weight on his feet, and his core is weak, so there is no other way to transfer him bed to chair. He did eat some dinner and is now watching basketball.
Some big news of the day is that I brought Blue, our cat, in to BG Manor see Ron. Ron has asked repeatedly to go home to see Blue or bring him in. Blue was a good boy, lying down by Ron and purring. He also liked looking out the window.
With hospice services, no bloodwork, monitors, or other tests are done. No IVs, no pokes for blood draws, but I suspect the chest pain has to do with his lungs. It seemed fitting to have rain all day.

Status Quo

We had a Super Bowl party in Ron's room at BG Manor. Anne, George, Ron, and I had planned to watch the game together for several weeks. With all of our big screen TVs, we ended up watching it on an old JVC, but you know what? It didn't matter.
Everything is about the same today, so I wanted to let you know that. I may blog again later.
Thanks for checking in.
Jan

An Eventful Day

Friday was a fully scheduled day through late afternoon. My day started early!! I am thankful for a smallish bladder because then I check Ron as he sleeps. Friday morning at 4:30 AM, I looked at him when I was up and noticed that his face looked mottled. I keep the blinds slightly open at night, so the street lighting can filter in. His hands were warm under his fuzzy blanket, but when I checked his oxygen level, it was only 62%. (oxygen flow is adjusted to keep it in the 90%s) My first thought was that I was looking at the finger monitor upside down; my second thought was that the finger monitor wasn't working right. I had a second finger monitor with me, so I got it out. Same thing. I checked the oxygen machine, and it was on 4 liters, not 6 which he requires now. The nurse was very close by, and quickly noticed that his oxygen tubing had kinked. The machine bumped back up to 6, and Ron was coherent and responding to questions. His oxygen level rose to near 90 over a couple minutes. I had had such a shot of adrenaline, that I was wide awake for the day. I had gone home to sleep the previous night, but at 10:00 that night, I curled up on my bed in Ron's room and fell asleep. I think that I was just meant to be there.
So on Friday we had several great visits: my sister, her husband George and nieces Kara and Jody. My brother's daughter, Casey, also drove over; all of them are from Indiana. Ron's brother Rick and wife Tammy also visited; Rick had Ron laughing as they reminisced. So good to hear that belly laugh. Two longtime friends from BG visited us early Friday.
Ron's medical visits were from the BG Manor nurses and aides who have been beyond wonderful, same to be said for his hospice nurse who came, and a physical therapist evaluated Ron for the possibility of, with help, stand and pivot directly into a chair by the bed, but his core and legs are just too weak. A lift is used to transfer him from bed to chair.
This morning I have written a basketball "viewing schedule" for Ron, and he as slept all morning. A very sleepy day usually follows an active day, but not to worry, there are basketball games until midnight. I am starting with Purdue and Maryland, and Anne and George will soon be arriving for the weekend. We have had Super Bowl plans for weeks.
Love to all,
Ron & Jan

Nearing the 7th year anniversary of Ron's journey

Ron continues to keeps me guessing. Each day seems to have its own bumps in the road, but there are many good moments, too. Ron was conversational between his naps and clear-headed compared to our days in the hospital. I think taking him off most of his many medications has been beneficial, and the flushing of his body with IV fluids ridded him at least temporarily of toxins. The IV antibiotics at U of M partially knocked back his infection. However, the underlying chronic problems are still there. He does have some confusion and does not understand his physical limitations. He asks to do things that he can't do and becomes irritated with my explanations. It's pretty mild irritation, mostly tone of voice. His discomfort is controlled with pain medication. Most of his discomfort occurs turning on his right side where the injuries were from his fall at home two weeks ago. Also, the "shingles-like" area across the small of his back is painful. It is healing though, and dressings were changed today.
I went to the villa to sleep last night. I don't think that we had been apart 7 hours since I had to have my knee scoped about 2 1/2 years ago. I am planning on doing the same tonight; Blue is happy to see me and curls up on my lap or next to me. Tomorrow we will have several visitors as well as the Hospice RN.
Thanks for keeping us in your prayers and positive thoughts. Include a prayer for a 15 year old young man who is a nephew of a "distant" Hover relative. He was diagnosed with AML leukemia, like Ron's, about 2 months ago. He has become very ill with infections and pneumonia after his 2nd round of chemo and is on a respirator in an ICU. His name is Paul.
Love, Jan

Chest and back discomfort

I woke this morning to Ron's juicy coughing; this is painful for him. Although we do not know the timeline, Ron's chronic lung infection and renal failure are on the threshold. He is not receiving antibiotics any more. Having passed through the futile medical and painful medical procedures to fight one more time, I am at peace with our decision of "no more". He is requiring more oxygen this morning. He had blisters form across the middle of his back last week which broke, leaving raw, painful skin. That bothers him more than his shoulder and rib injuries from his fall 2 weeks ago.
With all of that being said, he continues to enjoy reminiscing and visits he has had with friends and family. Cale, Ron, and I watched Wheel of Fortune last evening, and as Cale and I were looking at the bonus puzzle trying to figure out the final answer, Ron solved the puzzle!! He continues to keep me guessing! Ron talks about his plans to go up North and visit our favorite places in the Traverse City area and also a trip to Hawaii.
Love to all of you from both of us,
Jan