48 Hours in

I got all the sleep yesterday…  After posting that last update on my phone from under the covers of our bed… I was able to sleep in till 6;30 today…  That was nearly 8 hours.! It helped that we have 3 extra folks sleeping in the basement to keep our cat distracted from me.  Additionally, Geno, the cat, is probably the best reason that I did not have our cat walking on my face this morning…  She was preoccupied.

I then looked at my post from the night before and realized that I had lost whole paragraphs while trying to post it last night.  I swear my eyes were half open when I was typing.  I made a few fixes and updated it before leaving the house.

I texted Ang before I left the house to see if she needed anything.  It was about 8 and I decided to leave all the kids alone and let them sleep in if they wanted.  Plus, this thing where we ride with Aiden and leave a car at the Hospice center has been getting old.  I came up in a second car so that we could come and go as we please without regard to the kid’s schedules.

Ang said she wanted a real breakfast.  Something hot.  (I am telling you, this St Jude lifestyle we lived over the last year spoiled us!)  I drove to Grand Prairie and found the Original Pancake House.  Never been to one, today was as good as any.  Using their preferred app, I got her biscuits and gravy, a side of eggs to split, and some chocolate milk.  All things that she loves in hopes that I could make her happy.  She told me it was too many carbs…  She is sick of carbs!  LOL…  Anything that can sit in your room without refrigeration is likely a carb… And we have lots of that here at Summer’s bedside.  I will note it for later that she wants the fruit plate!

I got here around 9 and Summer was missing from the room.   Her whole bed was gone for that matter.  There is only one place they might have gone… Out to the patio.  Sure enough, I walked outside and found Summer and Angela under the pavilion in the mild temps.  It was a glorious morning and the day was so mild she ended up seeing all of her guests outside until 4PM.

Angela and I talked about her night.  She said Summer took her meds and did not have anything come back the other direction.  That’s always good.  She said she was up with her when started fidgeting around 4AM.  I asked her if she was handed her phone and Angela said “no”.   Bummer… I love knowing that she is throwing some casual messages out to random people.  It’s become a bit of a fun game to see who and what random things happen.  Is that macabre?  (Sidebar:  I did tell her HS friend John the other night that people should not get to excited if they got a message from Summer and it had been a long time since they spoke.  Nate and I watched her swipe up and pull up conversations from 100 weeks ago… She then sent them a picture.  I told John that nobody should measure their friendship by how recent of a snapchat they got from her!)

The crowds were asked to wait till noon at the earliest to visit and they listened.  Aiden showed up just about when we were done with breakfast.  That was time for all three of us to sit and “chill” while Summer rested.

At 12:15…  The turnstiles opened!  LOL… slightly kidding.  Bill and Owen stopped by first.  Then Linda and shortly after…  The rest of DeeMack Highschool showed up with a few of the regulars who have been coming by.  Marlee was back and I think they talked about doing some makeup again.  Summer was super vocal with the group and I could hear her talking from her bed as I was sitting with family and friends at the big table.  I’ll go back to what I said a few days ago…  You can see her demeanor and attentiveness change as she sees different people.  It’s a bit refreshing to see her perk up and shows how much conversation means even when you are feeling terrible.

 

When I was sitting outside with her before the opening bell…  She had both of her hands on her forehead.  I asked her if her head hurt.  She said she had a bad headache.  I said, “Do you want me to get some Tylenol?” and she replied that she did… “But I don’t want to become a drug addict”.   I had a laugh.  I told her that using medicine for pain does not make you an addict!  The nurses came outside and got her some meds.  She continued to rest, but the hands were no longer holding her head.

Friends, family, and families of friends came by today…  It was a constant flow.  Summer did not complain today…  Other than wanting to go inside.  She said at 4 that is was too hot and wanted to go inside.  Once in, it wasn’t long before she was sleeping.

Nate and the college gang went out to eat.  Aiden with to Alex’s house.  Angela went home by herself.  I gotta be honest… When Angeal called me about 30 minutes after leaving here…  I was sure she was going to climb my tree about the condition of the house.  I still believe there is a dish in the sink that has been there since we got home last week.  Ick.  If it wasn’t that, it would be the giant pile of laundry that still needs to be done.  It could have been any number of things but it was a call about Geno the Cat.  Geno has been living in our basement for the last 2 days thanks to a wild idea by her roommates to smuggle him into the hospice.  It kind of worked…  Chaos erupted and Geno didn’t seem to enjoy the tiny confines of a space he had never seen before.  All in all, he was decently behaved!

Geno was in the other side of the basement when Angela got home.  She called to ask me if someone locked him in the room on accident… since there is no litterbox on that side of the house.

I had an idea… Geno might have crawled through the walls that are connected by some heating ducts.  That was likely the case.

I think this might be Genos last night in the house.  If we get through this without a mystery cat turd in my basement I will be shocked!

---

This morning while we were lounging outside with Summer…  The Hospice Doctor came out to talk to us.  It’s been 48 hours here.  When we checked in the first night, we had talked about an evaluation of her condition after 2 days.  We talked to the doctor about the hard questions.

Summer’s mental state comes and goes.  She is great at responses and casual conversations.  She can chat with anyone, but sometimes you get weird answers that don’t make sense.  Fortunately, her demeanor is pleasant and everyone can overlook a conversation about “Really wanting to play with waffles” as she said to my Dad today.  She has no idea where she is.  Today she said to me that she was home.  I wonder sometimes what her brain is actually seeing through her eyeballs.  She can see her watch on her wrist, but tonight she couldn’t type in the passcode when it came off the charger.  She was scrolling her phone earlier but I don’t think she snap chatted anyone.  Sorry.

The doctor said that nothing is coming out of her bowels…  They have tried a few things…  But they are not working.  Summer has not eaten anything to speak of, but this has been going on since her legs went dead on vacation.  Her belly is not distended, so we don’t think there is a whole lot in there…  But, regardless…  That is not working. (Gigantic update at 2:30 in the AM. Nurses were very excited to report a BM. They said the next day might be kind of messy because of everything they have been doing to promote movement. Just write about her pooping, like after the surgery, and it’s inspired!)

We asked the big question.  Given her condition and the symptoms, we are seeing.  How long will she be able to go on?  As we found out with St. Jude and Dr. Gajjar… This is a complete guess.  Who to know?  The doctor said based on what she is seeing…  1 week…  Maybe 2.  But that was a big maybe.  The phrase “the cancer will decide” was dropped on us when we checked in but that is the first and last time I have heard that.

BUT…  Ultimately those tumors in her body are affecting her.  Backaches…  Headaches and confusion are becoming more present.

She does not remember Geno.  I asked her today while she had her arm wrapped around the stuffed cat that she has had since CARLE what his name was.  I know that she named him Geno when she first got sick.  Today, she responded that she thought his name was Ralph.  I said, he kinda looks like a Geno and she shrugged and said “Maybe”.  That name, a name that has been synonymous with getting home, no longer carries weight.  It’s sadly sending a message that anything can get lost in her head.

Tonight, she was holding her head again and I had them add more pain meds.  Earlier when we were talking outside with the doctor, she said she was going to up the dosage of methadone as well.  Tonight was the first bump in dosage.

After an hour of sleeping under the new meds… She opened up her eyes and started looking around and reaching in her bed clumsily.  I walked over and said, “I thought you were sleeping?”.  She opened both eyes fully and said “Well obviously I am not!”.  We adjusted her bed and moved around her pillow.  She fell back asleep afterward.

It’s just me here with her tonight.

---

Grandmother Marie was moved to a hospice in Pontiac today.  We have had folks coming and going between our place and hers.

There’s an oddness to know that these two Stahl ladies are racing to the same destination while being just 60 minutes away from each other.

---

Today was Summer’s Bonnaroo ticket.  I hope with all hope that the tickets were enjoyed.  When we bought them, they were a source of great pride and a goal to work to.  I believe that Summer would have drug herself out of this bed and across the floor to start making the trip if she had half of her mind right now.

---

I talked to my longtime customer Greg Henderson on the way back from Memphis the other day.  Greg owns Henderson Funeral Home in Pekin.  It’s a beautiful newer facility and has lots of space for the million people I hope show up when Summer’s life is celebrated.   I wanted to get the horrible conversation started and he was so cool and calm about it.

Greg told me that they had another St. Jude patient service conducted at his place a few years ago.  St. Jude assisted with the arrangements as well!  (I am constantly blown away!)

---

Ang and I have been thinking about building a scholarship for DeeMack students in her name.  It’s still early, but I am going to reach out to Principal Mitch and see if there is anyone who can help with this.   Summer loved the arts and as I think of ways that her short life can leave a legacy, I think this is a perfect start.

If you know anyone who has done this…  Or would know HOW to do it… Please send me their info.

---

One other person noticed what I did when Father Andrejek came by the other day.  When Father said Hello and went on to say that he was here to give her a blessing, she said “What a crazy, random happenstance!”.  That phrase is directly ripped from one of her favorite films.  Dr. Horrible’s Sing Along Blog.  I am in amazement at what might come out of her mouth at any given moment knowing what we have tossed in there over the last 21 years.