I was actually surprised at the amount of folks who came out today. I had sent out a message on Facebook that Summer and Angela had a long night and that we would be limiting visits to a few people and short spans. That didn’t keep anyone from wanting to come out. And I have no problem with that.
I called Ang when I left the house this morning to let her know the bathroom contractor and I had changed some plans… He would be waiting till July 11th to start. When Tim from Ekhoff Construction rang the doorbell at 8… I answered and said, “Is it Monday already?” He laughed and asked if we were ready for him.
We talked about Summer’s condition, which he is fully aware of, and how things had escalated over the past few weeks beyond what we had expected. When we got the ball rolling on this, we thought Summer would be moving in with us for at least a summer or longers depending on her condition after a successful treatment at St Jude. Even when they said 6 months (maybe) after the growths found on the last scan, we were still hoping that Summer would be using her new walk-in shower. It all kind of went to hell and I told Tim the bad news about hospice and timetables moving up.
He was still optimistic that they could have this done in the next week so that we would not have a destroyed bathroom if our house becomes a grand central station in the next few weeks. I went back to the garage to clean up some mess (long long long story!) and caught Tim as he got off the phone with the office. Let’s reschedule. It makes more sense with everything going on.
I was down for that. I had to make Angela feel OK with it… She wanted this done a month ago, or at least while we were gone.
I called her and explained… Asked how Summer did last night and then asked if she needed any breakfast.
Yeah, she was not happy I rescheduled. Second, she had a long night with Summer. As active as she was during the day with all the visitors… She held that energy into the night. Talking, mumbling, and pulling herself around the bed. Ang said she didn’t get any sleep. Third… No pref on breakfast… I got weak and swung by McD’s (I had gone a year without a McD’s anything up until our vacation!) so we could have something quick.
Doctor Deeter the head of the hospice staff caught us first thing when I got here today and wanted to talk about the current condition. I told her I had used Dr. Google last night for the Terminal Agitation diagnosis and saw that it said 24 to 48 hours to live. She said… “Well, if Summer were in poor health… Maybe.” The doctor still thinks that Summer has at least a week or more before her body starts shutting down. Then again… Cancer could pop up anywhere in her nervous system and create havoc that they are not prepared for.
Summer was still very “agitated” and we decided that posting the message about visitors was a good way to set expectations.
It seemed to work. Everyone was super quiet and her room was more of a space of reverence than a dorm party. Some people sat for a long time… Others made a brief check-in and talked outside in the seating area.
Lilly and her Mom brought Crumbl cookies… Oh man did that start some stories. Another friend brought some rocks from Southern Illinois because they were rock buddies with Summer. I told them to send me that story so I could share it. I have posted some pictures in my Instagram and Facebook stories with #rocknerd as a tag. She was that after a few years in college.
Kat and Z (Roommate Nate) stopped by for their final visit before leaving town back to Carbondale. Z, was wearing Geno in the “carrier” backpack when he came in. and As soon as I saw it… I wanted to take my shirt off and cover it up. Unlike Genos first visit, there were nurses everywhere today!
Today, as soon as Z walked in… I saw one of the nurses turn her head and zero in on the backpack. It’s nearly transparent like a Florida lanai on your back. Geno was in full display. Nate said to Z “The doctors going to see that!” In a knee-jerk response, Z turned around and presented the backpack right in the face of Doctor Deeter. From my vantage a few feet away, I thought she missed it.
Z and Kat stopped by the room to say goodbye and were gone within a few minutes. I saw them outside the window of the seating area as Doctor Deeter and a nurse with a “pulmonary” badge came up and asked if we had time to talk. I said sure, “But should I grab Angela?” The doctor said yes and I walked down to Summers room to retrieve Mom. What are these two going to tell us? This other nurse looked serious and I was scared that bad news was coming.
We sat on the couch and they pulled up two chairs in a way that were facing us. “We need to talk to you guys about some things. We have concerns that you are breaking some policies….” I cut her off right there. “It’s about the cat right?” I was johnney-on-the-spot with an apology for the backpack today and assured her this conversation was mute because the cat was gone and that would never happen again. I think they wanted to talk more about it, but they had a second subject to chat about as well. Alcohol is not allowed on the property. Another family wanted to have drinks on the patio and was shut down for breaking the rules. These other folks pointed to our indiscretions as the basis of their motivation… And basically narced us out.
To be fair… We never asked about drinking. We did know about the cat rule. But, I can’t control every gregarious college kid with a pet cat. I did the best I could!
Doctor Deetor was super nice and said her family is Catholic as well… she knows how big families are. I joked that I thought she was going to say “summer is going to have to leave here”. She just smiled and said “oh gosh No”.
Aiden was sitting within earshot of this conversation and Dr looked over at him and said Happy Birthday. She then said something about what a “sharp dresser” he is. I was ROFL on the inside. Aiden was quick to defend himself by pointing out that he wore a world’s biggest Holstein shirt yesterday. As if to say, I can be casual!
Summer laid low all day. Seriously low. It was a bit disconcerting as I felt like we have seen her best days in hospice and now everything would be non-verbal.
Aiden, whether he liked it or not, was getting a birthday party. Linda made banana pudding, Mom picked up a giant cookie at HyVee, and sans booze, we celebrated on the patio at Hospice House. It seemed to work out. Aiden was against it, but I think he thought we were going to do this on Summer’s bed with her laying there. That would be rough and I can see why he thought this might be stealing attention from her so he was willing to wait. Happy 20 Stig!
Steve came in and said goodbye and while he was keeping his voice to her a whisper… She took her finger and poked him saying “This one is perfect” (I think??? Correct me Steve if I screwed that up)
About 5 or 6PM… She woke up a little more and started talking to Nate. She can’t hear well, but she was talking more coherently. That was enough to have a few of us circled around her listening to her every word. She’s frustrated. She is starting sentences off with purpose, but by the time she gets to the meat of the sentence she has forgotten something. That ends in words and phrases like “Whatever” and “You know”. It’s hard to understand and I have yet to hear anything guess what she is talking about.
Nate, Angela, and everyone cleared out so that I can be here tonight. Summer got a bath and her meds… She’s pretty zonked for me. Wish me luck that shes not restless all night.
Niki came by to talk to me and check on how we are doing. She last set eyes on Summer when she was born, since we worked together at Choicepoint together at that time. It was a nice chat and she gave me a different perspective to use when looking at the circumstances. Thank you, Niki. It’s still going to be a long slog before I come to peace with this. But we made a good step forward.
Gabe dropped by and brought Aiden a birthday gift. A bottle of Brute cologne. OMG was that the hit? I think my Dad and Uncle Steve applied a dash of the classic men’s scent after marveling that it’s still in existence. Dawn and I came up with the Captain costume after Aiden told us his roommates called him Captain at Carthage. Well, 25 bucks on Amazon completed the look. He rolled with it all night!
My cousin Jessica with her parents, Terry and Penny. They have been unsung heroes through all of this. Jessica fought and won her battle with Leukemia a few years ago. She used her experience with treatment and hospitals to send Summer “care packs” full of thoughtful items for her journey through St. Jude. Motivational and seasonal decorations. Lotions. Letters and advice. It was all used just as she hoped it would be. We sat and talked about everything from the first diagnosis to today and then compared it to Jess’s experience with being a 27-year-old (at the time) trying to work through an Obamacare health plan. It’s all as torturous as you might expect.
Olivia sat with Summer while we celebrated Aidens birthday on the patio outside. It was a huge help and kept me from feeling like a parental fraud for leaving her by herself.
George and Alex… Thanks for the lunches for us and the boys. (The Decatur crew who showed up to build a 1000-piece lego flower arrangement!)
Megan… Shes awesome. She wore an awesome shirt… And she took this awesome pic of the Stig.
Started talking to some folks about scholarship plans. Will keep pushing. Continue to give me those recommendations.
Jen is working on that badge logo so we can make a sticker or patch later on. Everyone has ideas but I just want to get an order put in for stickers so we have them for everyone.
Talk to your spouse or loved ones about where they want to be buried… Or not buried. Angela and I have never even had these conversations. Summer is obviously too young to think about it and when you are working under the veil of hope and cures… This was a conversation we avoided!
But even having a basic conversation about this with Angela… I realized that we don’t know each other’s wishes. What are my wishes? I don’t really know.
Aiden told us he is being buried in Fairbury. Weird since he has been to that town about 20 times in his life. He says its the place with the family lore. If its good enough for him… I’m down with it.