St. Jude – Looking to Christmas

Summer and I escaped St. Jude last week.  It was near-perfect timing.  She is feeling great and was able to stay in Carbondale for a few days.  She and Nate came up to Decatur and had a Christmas get-together with his Mom.  I am stealing some pictures from that.  I think she efforted more smiles for Nate’s mom in the 4 pictures posted on Facebook than I have been able to acquire since our adventure started at CARLE! 

I did get to the TwistedXMAS concert put on by Q101 at the Aragon Ballroom.  The headliner was Jack White but I was honestly there for the band Wet Leg.  Jack White was a bonus.  Angela tolerated all of it…  Barely.  She said this might be her last standing-room-only concert!  I’ve been thinking of ways to describe that show.  Freight train, Flamethrower, jackhammer, or buzzsaw should all give you an idea of the energy produced by the bundle of raw musical nerves called Jack White.  I know enough of his tunes to be a casual fan…  But I was in pure awe at the skills and showmanship he has.  If you have the opportunity to see Jack White, I highly recommend it.  (Wear earplugs if you are old like me… My ears are still ringing!)

Wet Leg was not what I expected at all.  I was expecting a pretentious hipster band oblivious to the crowd in front of them as I had a mental picture of rude and brash women thrashing their guitars.  Instead, we had a super-talented group with pleasant personalities.  I’ll probably play them too much over the next month and upset my Wife till she threatens to take away my Spotify.

Before the concert, Angela and I made our way to the Kriskringle (sp?  German market)  Market at the Daily Center in downtown Chicago.  We then headed over to the Marshall Fields to read this year’s “story” in the windows.  (It’s Macy’s now if you are confused).  I do believe I am having a hard time appreciating these things without the kids and during my time in the market I could feel some anger or resentment deep down.  Do you make new traditions or do you keep playing the classics that got you here?

Friday I slipped into work and attempted to clean my desk before Monday morning.  It might have worked.  Ang and I did make the Fort’s Christmas party Saturday night at Maquet’s Railhouse.  It was great to see everyone and thank people for their support of Summer.

This week in Memphis:

Summer has been chauffeured to Memphis by my Mom and her sister Carla.

Monday Summer has 1 appointment in the morning and a wide-open schedule.  Tuesday she sees Dr. Gajjar again after getting her blood tests and counts.  We have no reason but to expect good counts at this time.  Midweek, Summer will be getting her monthly Lumbar Puncture(Spinal Tap) and MRI.  These are always stressful and when we all need the highest amount of strength.   Pray for clean results.

Summer told me the other day that she has fears of sitting down in our St. Jude exam room and Dr. Gajjar telling her she has 1 month to live.  Immediately she added that she also has visions of being 42 (twice her age now).  I get very angry and sad when I think about this kind of stress being placed on her.  This is not the first time we have had talks like this, but I don’t dwell on these things because it’s not productive.  She is tough, but nobody is THAT tough.  I give her lots of credit for being the adult in the room sometimes and cut her slack if she seems irritable.  Your entitled kiddo.

Toward the end of this week, Summer will start another round of Chemotherapy.  Its a small dose.  When the medical plan was set up, it timed perfectly with a light dose around Christmas Break.  We still need Summer to take this Chemo and hold her counts through next week if we plan on getting her back to Illinois for Christmas.  Dr. Gajjar will surely be watching us, and every other family like ours who wants to come home for the holidays.

Relieving Mom and Carla this week will be Aiden and his friend Alex.  Oh boy.  There has been a lot of back and forth on this one.  Summer knows that her brother loves her.  But, she is VERY concerned that her baby brother will lack compassion during his time as a “caretaker” in Memphis.  I think her guilty conscience from being an older sibling might be kicking in a little bit!  Aiden is ready to help and we are more concerned that Alex might be too serious!!!  If you know Alex…You know he can be SUPER responsible.  Hopefully, they find a balance to keep things fun and productive.

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2 weeks ago I started an email group with Ang and the kids with some vacation ideas for this summer after treatment is over.  I told Summer I would go anywhere!  Honestly… Anywhere she wanted to go.  I found trips all over the world.  Nile Cruise, Italy, France…  I found some cool stuff.  Aiden said Egypt was a “proper vacation”  I put it this way…  I am not leaving anything in the tank when the time comes to enjoy time with the kids and family this year.

Summer came back this past week and said “Alaska Cruise”.

I didn’t see that one coming, but I know that she really hates heat or the thought of being hot ever since she started all these medicines.  So, Alaska makes the most sense.  (Plus, as Angela points out, it checks off a box on her quest for 50 states.  I believe she is at 35?)

I looked up some cruises…  We have time to book.  But I definitely want to make sure we have time to finish chemo and get the facial reconstruction surgery over before heading out.  The thumbnail sketch of the end of treatment should be in late May or early June.  Definitely need to plan the trip with a moderate amount of certainty for her health.

So… That’s going on all the time in the background!

As I told a friend this week…  I have a lot of plates in the air.  I think I must come from a family of circus performers.