St Jude – Heavy Legs

I was talking to Summer and Angela a few days after they were released from the inpatient chemotherapy services…  Angela was getting Summer off the St. Jude grounds to do some walking, but Summer was saying her legs felt like concrete.  Not a term I have ever heard before… And certainly, not something Summer has ever said.  She must be dog-tired. 

Angela told me today that Dr. Gajjar is trying hard to get Summer over to Target House again.   Right now the lodgings at TriDelta are adequate, but they do not lend themselves to long-term stays.  A lack of a kitchen will drive me nuts!

Yesterday I was at lunch with Drew and Angela called me.  I didn’t answer when she called because I didn’t want to deal with the guilt of enjoying a relaxed lunch!  But when she rang again for the second time in a few seconds I knew I better pick up no matter what the excuse.  Angela was pretty upset.  Possibly the most upset I have heard her since we started our journey with Summer.  My heart sank…  What was she going to tell me?  While Summer and Angela have been at St. Jude over the past few months, we have made lots of acquaintances and become brothers and sisters in arms with other families that share the struggle.

Angela had made friends with a mother and daughter over the previous weeks.  They met up again in the MRI waiting room this week and Angela sent a text asking if they wanted to get together while back in town.  Angela got a text back saying that the scans were bad and they were getting a flight back home because cancer had come back and there was nothing that St. Jude could do.  There is no more treatment plan.

Mind you… I was catching all of this for the first time while staring at a smoked chicken plate at the Blue Duck Tavern in downtown Peoria with my technician across from me.

I know that story is pretty vague because I don’t know the parties involved… But it’s a perfect example of why my kid says she doesn’t want to make friends with anyone while at St. Jude.  I totally understand.  Angela said something to the same effect and I had to poke back that we are not alone and people are invested in our journey as well.  It is not realistic to think that we can do this and shield ourselves from feeling for everyone around us.

Today Angela called me a few times.  I had no time to talk, but I knew it wasn’t an emergency because she said I could call her back.

When I did, she had some bad news for us.

Today’s lab test results showed that Summer’s white blood cell count has dropped to a seriously low number.  This means she needs a blood transfusion on Saturday.  The procedure for this is said to be pretty easy, but the bad news is that Summer needs to stay isolated in her room wearing an n95 mask the whole time.  When I get to Memphis this weekend, we will be a happy family of 3 snug as a bug in our Tri-Delta room.  I guess the benefit of 3 people is that we can send one person out for food.

I am not sure how long it takes to bounce back…  But I will share as Summer and I work out the next week of appointments and treatments.

Summer told me on the phone tonight that it’s imperative that we get a room at Target House.  “You snore Dad”.  “I won’t be able to sleep if we are sharing a room!”

Oh boy…  It’s going to be a fun week!

Frankly, I’m ready, I have been running around every night with my various activities.  Campaign Sign Planting, Podcast Recording, and multiple boards and political meetings.  Tonight I parked the camper (that we never used this year) in the Fort’s storage facility.  After that, I drove to a few different Krogers in search of a Celica GTS Hotwheels car.  Its not much, but it keeps me busy till it’s time to sleep.  Otherwise, I might find myself eating fast food or grabbing a beer or two I don’t need.

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I shot some vacation ideas at the family this week for the summer of 2023.  International for sure!  It seems hard to think about being free of the hospital next summer and I think I need to ask the doctors what a realistic expectation is for traveling when this is all done.