St Jude – Readmitted

I came down to Memphis for the swap-out with Angela on Saturday morning— I must have surprised everyone by leaving by 8AM because I had a few calls from folks who wanted to send stuff down with me after I went!  I am not a go-getter or what?

I did come with a few iTunes gift cards and a few borrowed Nintendo in the car…  Thanks to everyone who heard my plea.  Summer told me to stop asking for anything… So, I will see how this week goes before I figure out anything else she might want or need.  We are going to be close—  I can tell you that.

When I arrived Saturday, Summer was still in the hospital for her platelet transfusion.  This had been scheduled for 2 o’clock and I thought that I might show up at the tail-end of the procedure after driving pretty much straight through.  Wrong.  I got to our room at Tri-Delta and waited around for a little bit, expecting they would be done anytime, I did not want to walk over.

After about 45 minutes.. I called and asked Angela what was going on.  She said they still had not even been admitted into the Medicine Room for her transfussion!  At that point, I headed over to be with them.  Nearly the minute I walked in, they were seated and hooked up.  We sat in the small room for 90(ish) minutes while Summer got a fresh infusion of a weirdly orange-colored liquid into her body.

Afterward, we headed back to Tri-Delta.  I had parked out front in the circle at the Chili entrance the whole while I was inside.  Parking has been a mess at St. Jude since they started construction of the new building inside the campus.  We came back to the “apartment” and made some plans for food.  Summer, because of her low counts cannot go anywhere with other humans.  It’s probably bad enough that I came down with whatever exposure I have had with customers and employees this past week.  But, I am all she has this week!  I convinced Angela she needed some Venezuelan food in her life.  It was in hopes that it might inspire a few bits from Summer as well.  Summer swore she would not eat, no matter what we got.

I put in an order for a “Travel Venezuela” and a seafood arepa from Sabor Caribe.  Summer and I loved it earlier this year while in Memphis and I knew it was a safer bet than it sounds.  Angela did love every bite of the cornmeal and cheese dishes.  So good.  Summer, held true to her promise and did not eat a bite.  She says she knows she’s hungry but earlier in the day had thrown up— and she did not want that to happen again.  She snacked on some peanut butter snack mix and a few goldfish.

The girls watched Hocus Pocus and I read one of my old Bourdain books.  Easy night.

Today, we all woke up as normal and thought about getting Angela out at a decent time.

Summer was laying down and I said something about the rash on her face.  She said she didn’t notice it.  (hard to notice when you never leave the bed!) Angela said it was worse than the day before.  The rash does not itch.  She’s not even aware of it.  But her cheeks, neck and back are now getting splotchy.

We watched the Jordan Peele stop motion movie on Netflix, Wendell, and Wild.  Its not exactly kid-safe, but it was fairly enjoyable as a twisted fairy tale version of a Tim Burton movie.  The movie started with “Ma and Pa” by Fishbone and ended with “Wolf Like Me” by TV on the Radio.  I was loving it just for the music choices.   Ironically, the politicians selling out the town to a “for-profit” prison was at the heart of the program.   I say ironic, since I am running for office, and it seems like there are business people trying to sell some use of our county with the same buzz-words used in this fictional horror comedy.  “Creating Jobs” apparently is the free ticket to approving anything no matter the unseen costs.

We decided, as a family, that a quick ride around in the van (to some mounds!) might be a good way to get a quick shot of movement and fresh air.  We drove 10 minutes down to Chicksaw Heritage park along the Mississippi river in south Memphis to take a look at Mounds that I have not explored yet.  Summer sat in the van and watched.  Angela and I checked out the site and were astonished that we were the only ones there on a beautiful Sunday morning!  The site was used as a french fort encampment and shows signs of its double life.  Also, there were lots of socks and paraphernalia to make me believe that it makes a great bed if you do not have a place to call home.  As does most of downtown Memphis. 

Afterward, we got back to the room and I noticed that Summer’s rash was getting worse.  It was now on the top of her head.  Her temp was creeping up as well.  Once it reached 100.3, Angela thought it might be prudent to go to the medroom for a second opinion.  Nurses and doctors came and went over the next hours and Dr. Hu told us that the readings for Summer’s white blood cells were exceedingly low.  Knowing this, with her temp, and the rash.  They wanted to re-admit her to the onsight hospital.  This admission process took over an hour and Angela knew she was getting late in the day if she was going to make the 6-hour drive.  She trusted me to handle this and took off around 3.

At 5 PM… We got a room and Summer was hit with barrages of questions about what could be causing this rash.  Nobody knows.  Thankfully, the temp has pulled back a little.  Summer cleared the covid test, but the blood tests for any other infections will not show results until Monday.  Even if those are clear on any concerns..  She will likely be in this new room till Tuesday.

So…  That’s where we stand.  She still has a rash.  Her temp seems ok.  We err on the side of caution and wait patiently.  I was concerned that I may have brought this on by coming from Illinois, but the rash was already there.  The fever, as told to us by doctors and other parents can be part of the chemo process.

Summer is as lethargic as any time I have ever seen her during this process.  So, even watching a movie all the way through seems to be a chore.  We are still in our little apartment at TriDelta when this saga is over.  I hold out hope that we get back to Target House so that I can get a permanent address again for letters and postcards.