St Jude – Socializing

We have been to St. Jude for the first couple of days this week…  But I had forgotten about the new “commons area that had opened during my absence.  The renovation has been in the works for a long time and it promises a nicer area to wait and play between appointments.   Summer and Angela talked about it last week on the phone and they were heaping praise. Smoothies, a food counter, a maker space, family services, and a business center are all located on the second floor of St. Jude.  Oh… And lots of seating!   Inside and out!

Yesterday (Wednesday), I made my first visit and spent the hour Summer was in her “group” investigating the area.  They even have a hair salon!  I need a haircut, but they are booked till next month.  I guess I will have to find a place in town or wait till I get back home.

Tuesday night dinner was provided to the residents of Target House by Cozy Corner BBQ here in Memphis.  Every Tuesday and Thursday it’s a different sponsor for dinner.  We have a calendar that lets you know ‘what’s for dinner”.  I don’t know squat about Cozy Corner… But it must be good…  I can tell you the line was as long as I have ever seen… It was easily a 10-minute wait.  Summer was laying down and I was solo.  So, I went next door to Target House 1 and picked up the mail, and browsed the BluRay library that is free to borrow from.  I came back and the line for food was halved and I figured I could weather a few minute wait.

While in line, I started talking to a nice couple and their daughter about all things chicken.  Fried Chicken turned to Raising Caines (Sp?)  and that led to southern specialties like crawdads.  Turns out they were from the Baton Rouge area and were confirming what I had heard about a crawfish food truck in the Memphis area.  I might have to make a trip, it sounds like the real deal!  This might be the most I have talked to any other family since meeting some folks during our time at TriDelta (Bryan and his son Ben and the Juliots come to mind immediately).

When I got to the front of the line at the food counter, the Target House staff told me that they were out of ribs… It was only chicken that was left.  Summer would not want either… So, it was not that big of a deal. I got one chicken dinner and said goodbye to my new acquaintances.

On Wednesday, while I was enjoying the new commons area… Kinda.  I was also questioning the comfort of the seats…  I felt like Goldilocks looking for a chair that was “just right”.  When I got myself situated, I saw the Mom and Daughter I had met in the dinner line the night before.   As they walked through the room, I quickly looked back down at my PC thinking they would not recognize me anyway.  Then, a few minutes later they walked back by the main seating area and I thought “I should have given a friendly wave on their first pass” so I did just that when they cruised by a second time.  If they saw me…  They didn’t show any signs of it.  They just kept on walking.  I know as well as anyone that getting anywhere in St. Jude has your mind spinning as you think about the most direct route and how long it will take.  If they looked right past me…  I am not shocked.

Similarly…  The past 3 days of getting mail… I see another Mom and her very young son sitting outdoors on a park bench by the entry door to our mailbox area.  I say hello every time I see them (or really anyone who gives eye contact)  as a personal confirmation that this is a kind and friendly place.  I have thought that others might have the same need to chat…  I might have an internal need… I am used to talking all day, every day.

The new seating and social areas of the second floor at St. Jude bring a new challenge that we have not had to worry about during our stay here this past 8 months…  Socialization.  St. Jude shut down every public space, every playroom, and any mingling with other families in the recreation areas at Target House during COVID.  Short of meeting a few people in the breakfast area of TriDelta… We have had very little opportunity to sit in any place that introduces us to other families.  Then again, I only come down here every few weeks… I have that luxury.  Folks who are here for months on-end might not have the same need to “chat”.

Thank God for the social group Summer is in on Wednesdays.  Because of her Child Life group, she has met other young adults and that has led to a few meetings with other parents while here in Memphis.  Those contacts mean the world to her and have given her a ribbon of continuity through this whole treatment process at St. Jude.

OK… Enough about the ramblings of a bored parent!

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Wednesday we laid low.  We definitely had to get to her “group” but other than that…  She was clear of appointments.  We hung out in the room and I did laundry (got everything out of the dryer) and dishes along with some kitchen organizing while she was bathing and napping.  When I went in to check on Summer… She was laying on her bed, still wrapped in her bath towel and on the edge of sleeping.  I told her she looked like Hell.  In a kind way.  We laughed that she was completely drained and I told her that there was no way she was getting out of St. Jude without a transfusion of some sort on Thursday.  She begrudgingly agreed.  When she is low energy and has no color, its a sign that all of her counts are down.

This morning Summer walked down the hall to get her blood samples taken.  I followed her and she was quite disgusted.  (I don’t want her to fall!)  Summer closed the door on me as she went into the Target House nurse’s station.  I was totally happy to head down to the breakfast area and grab a coffee.  Once back, I made breakfast and we had to hustle.  Appointments started at St. Jude at 9 AM.

Parking was chock full at 9AM, as expected, so I dropped Summer at the crosswalk and drove to the parking garage.  Summer did not wear a coat today, and I felt like Dad of the year as she was getting out of the car in overcast skies and 60-degree temps.  I ran back upstairs to the “commons” and finished up payroll…  But did not see anyone I knew.  Summer texted me that she was coming up at 10:30 and we hung out till nearly 11 before heading to her next appointment in E Clinic with her primary care team.

As we started walking to the clinic… Summer grabbed me and I could feel that she was VERY unsteady.  “Whoah?  Are you OK? ”  Summer said she was a little weak from the days of laying around.  I asked her how she made it from the car to the front door of St Jude earlier.   She said it was not pretty!

Great…  She might have fallen down in the crosswalk… in the cool temps…  while her Father pulled away.   Dad of the year is slipping out of my grasp again!

Doctor Gajjar was out, but our new Doctor (Who I don’t remember the name of!!!) said that Summer’s counts were OK.  So much so… That she could cancel the transfusion that was scheduled this afternoon.  The plan is to rest Friday and come back Saturday for blood tests in the morning.  Hopefully, her counts will be fine???

After St. Jude, we headed over to a bookstore in an effort to do ANYTHING besides going back to the apartment.  Summer begrudgingly got out of the car and looked around the store… But, while she was walking unattended, she was bouncing off some of the bookshelves like it was bumper cars.  I could tell I had limited time with her.

After that, we hit a coffee drive-through called Ramblin’ Joes that Summer said Nate had discovered last weekend.  On multiple occasions since her first visit, Summer has told me that “The Macha/Lemon Croissant is sooooo good”.  I ordered the croissant and a Caffe Con Leche (Cuban-style espresso with milk and sugar).  OMG.  I was giggling with every sip of my coffee.  Unlike a true Spanish version of this drink, they had a splash of cinnamon in the recipe that made me smile with every drink.  I told Summer this might be the best thing I have had in forever.  Then I tried the croissant.  Holy cow.  Is there anything better than a fresh, flaky, and buttery croissant?  Add some lemon and matcha…  And it gets even better!

OK… Distracted.  But it was good… Trust me!

I will likely ride out the weekend with Summer until my folks get here on Sunday morning.  There is a super slim chance that Summer could go back to Carbondale on Saturday afternoon to hang with “Z” and Geno… But her Nate will be out of town.  After her lethargic performances at St Jude and the bookstore today… I think lots of chill time is in order.  I might have to buy a book and sit outside while she’s resting… I can only take so much of Netflix/Amazon/HBO/HULU.