I know I have not updated the blog in several days. The mental and physical exhaustion just got the better of me. So this "update" is lengthy, covering in retrospect, a bit more than the past week. The blog is not only a vehicle for keeping our friends and family informed, but also a chronicle for our family, so it is a bit more detailed than most of you need. Feel free to skip to the end for the "bottom line".
In the morning I arose very early so that I could arrive at the hospital well before the 7:30 a.m. meeting with Dr. Crane. I managed to make some coffee but real food had yet to be replenished at the house. As a matter of fact, I had not even unpacked the car other than what I absolutely had to have for the evening and that morning. I had planned on removing my bike, but Tom had put it on the bike rack and I could not find the key for the bike lock. It could wait. I should have left my car in the garage and driven Dan's car.....but my mind just was not functioning on all cylinders b/c of lack of sleep, so I dragged all of our belongings that were packed in my car along with me, back to the hospital.
The drive up I-75 to West Chester was beautiful. It felt more like an Adirondack July day instead of one in Cincinnati. The early morning mist softened the concrete landscape of the expressway. For a few moments I could almost forget the looming discussion.
Megan had a hard night. Sleeping in any hospital room is a challenge and she was very concerned about her father getting his pain meds in a timely fashion. Because of his difficulty communicating she wanted to make sure to hear him if he needed something so that she could advocate for him. Aides were coming in to check on him, but it takes him so long to respond, she saw that he would not be able to get across what he needed before they quickly moved on.
Dr. Crane arrived shortly after 7:30 and surprised me by telling me that they were scheduling another MRI. They would compare it to the one done on Wednesday evening in Utica to see changes; whether things were improving or getting worse. He said we would talk about "treatment plans" after that. I followed him out of the room to ask some questions. I told him that I realized that the results were likely grave and asked if he agreed. He did. Even when you know hard things, it gets harder when they are confirmed.
During the day on Saturday, Dan was about the same except maybe a tiny bit less responsive. He was still able to look at us some and to respond with a word or two at times.
At about 4 p.m., Dr. Crane returned. I was surprised. He looked at Dan, asked how he had been doing and then motioned that he'd like to talk to us in the hall. Meg and I went with him. I instinctively knew that this was going to be a difficult discussion. He didn't just speak to us outside in the hallway, but led us to a small room. He told us that they had been unable to look at the MRI from Utica b/c their technology was so different, but that in the end, it really did not matter b/c what they saw on the new MRI from that morning was so devastating. The tumor that had bled and caused the sudden episode of paralysis was fairly large and in a very sensitive area of the brain. He said that Dr. Warnick was on vacation but had wanted to look at the results. He (Dr. W) said that there were "an overwhelming number of new tumors since his last MRI here 7 weeks previously." Dr. Crane said the only thing left to do for Dan was to begin hospice treatment. Even though we knew what was coming it was so very hard to accept.
While we had been in NY, and even a bit before, I had noticed subtle changes in Dan's behavior and a couple of not-so-subtle incidents that suggested the tumors were growing and that there were probably new ones. I wasn't always certain it was related to his medical situation, but reasonably sure. We were scheduled to return to Cincinnati on July 8th to be here for a scheduled MRI on the 11th. I had been bracing myself for weeks, knowing in my heart that the news from that test would not be good. This episode was only a few days earlier than that but Dan's condition was way worse than I had imagined and there was nothing left to do.....
Because Dan seemed to be sleeping and resting comfortably, and because Tom was not with us, Dr. Crane said he would speak to Dan about the results the next morning around 8 a.m.
Later that evening, we got word that he would not be in until about 1 p.m. so we let Tom know so he could be with us.
Dan seemed less alert, less responsive, but relatively comfortable. Knowing what was happening inside his brain explained it all but it was still so hard to take in.
When it was nearing the time for Dr. Crane to arrive we were remarking to ourselves how much less he had spoken through the morning. But when Dr. Crane arrived, Dan opened his eyes and said, "Hi, Dr. Crane." We were so surprised we started laughing. But the "alertness" or at least much of how we were measuring it, quickly passed. As the doctor asked him questions, he was unable to answer even very simple questions, just sort of staring blankly back at him. I thought the doctor would just go ahead and say what needed to be said but instead invited the family out of the room and back to that small private conference room. There, he once again explained Dan's physical situation to all of us and made suggestions for hospice care, explaining what hospice was and how it worked. He had arranged for a hospice nurse from the place I had always thought we would use if/when that time came, to come and speak with us that afternoon. I had asked Dr. Crane to tell us his best estimate of how long Dan would be in this sort of "limbo" and he admitted that they could never be certain but he thought it would be unlikely for Dan to survive much more than a week. Because we were so familiar with West Chester Hospital and comfortable in that setting and liked and trusted the staff, I asked if it would be possible for Dan to receive hospice care there. He thought it was unlikely.
After Dr. Crane left, the kids and I all knew we had to tell Dan whether he could hear and understand us or not. As the three of us stood close to his bed and held his hands, I told him the results of the MRI and what that meant. The kids thanked him for being such a wonderful father and grandfather and for fighting so hard to stay with us so much longer. They assured him that they would take care of me and that it was OK to stop fighting and to let go. We each told him through our tears how much he was loved and respected.
When the hospice nurse arrived, she had some upsetting news for us. One of Dan's good friends had lost a battle with cancer a few years earlier. We had visited him at The Hospice of Cincinnati's Blue Ash in-patient unit and were impressed with the setting and Dan's friend and his family were very happy with his care there, so that is where I had thought we would place Dan if this time came. But in late May they had closed the facility for a major renovation and it would not be available until sometime in October. Great. Now we needed an in patient hospice facility and had no idea which one to use.
That evening Karla and Tom brought the grandchildren to the hospital to see their PopPop. It was hard for them; they had just been having all kinds of fun with him at the lake and now he was lying in a hospital bed, barely able to respond to them. But each of them courageously took his hand and talked to him. I know he knew they were there. He was able to say Matt's name aloud.
The kids were available to stay with Dan so in the afternoon, I visited two other inpatient units. Either of the units seemed fairly good, but each had some element that made me uncomfortable; not wanting to commit to moving Dan there. I was still hoping I could convince the hospital to let Dan stay, I think, which kept me from committing. The kids were asking friends if they had had any experience with hospice and we were getting good comments about most, but I was still having trouble getting past my emotional, subjective reactions. The hospital social worker was wanting to know. I just did not know what I was going to do.
Monday night Tom stayed with Dan. We asked some friends to relieve him in the morning and stay with Dan till shortly after noon with other friends coming in then so that the kids and I could have the day to meet with some folks to make sure we had all the legal and financial things in place. Many of these arrangements were made 6 years ago when Dan was told he more than likely had only 3 to 6 months to live, so while I was pretty confident most things were in place, I could not remember the details and the kids needed to be assured I'd be OK.
After the meeting we all had a clearer picture of anything that needed to be done and of all the arrangements that Dan and I had set into place so long ago and of the few things that needed to be done now. I was reminded and they got a clearer picture of how much their father cared for me and for them and was so very responsible in planning and making sure we wold be OK.
Meanwhile, Karla had heard from someone about Hospice of Southwest Ohio in Madeira. We looked at it online and Megan and I decided to drive over and look at it. It is a relatively small unit with only 9 beds but the nurse seemed pleasant and capable. She had come from West Chester Hospital. I'm not sure but I think that added a measure of confidence to my evaluation. We had gotten word from the social worker that indeed, West Chester Hospital would not allow him to stay in hospital. His condition was not "grave enough" to prohibit moving him and I guess that is the qualification that is needed. So I began the paper work to have him transferred to the hospice unit in Madeira and called the social worker at West Chester to let her know we had made the decision.
The administrative nurse from HSWO came to the hospital to finish the paperwork. The hospital had not gotten their paperwork completed which delayed the move. With some help from friends, who facilitated things, we managed to get him moved by 3 p.m.
Since the move to hospice, many have visited, encouraging us, praying with us, laughing with us, sharing memories. It is a bittersweet time of fellowship and sharing. Many have called and sent cards....we are grateful.
Almost every day since the day we drove to the ER in upstate NY, there has been a decline in Dan's alertness/responsiveness. That continued right up to the day he moved into hospice and have since but not in as visible ways. The signs are more subtle The hospice staff are caring for him well, giving him pain meds regularly, positioning, suctioning, bathing. And they are caring for us; reassuring us of his comfort, providing drinks and snacks, coming when we are concerned and tolerating all the visitors in and out. We are glad to be here.
It is Sunday afternoon now and the doctor just came in. He thinks time is most likely limited to a few days at most. I think Dan must have heard Dr. Crane last week when he said the disease would most likely win out in less than a week and then he (Dan) determined to "beat the odds" one more time. He did it!
Although we have known for 6+ years that this time was most likely coming, we have received so many miracles along the way, we kept hoping against hope that they would continue forever. But this seems to be the last leg of his long, challenging journey. He has fought hard and well. He has continued to live life as fully as possible and has not "wasted his cancer". He has encouraged many and pointed to Christ as his HOPE and his Savior.
Tom put a poster up in the hospice room that says "Play Like a Champion Today". He is most definitely our champion!