Wednesday, October 31, 2012

Temporal Reframe

Firstly, sorry for the lapse in blogging.  The marking period is over on Friday and I've been drowning in grading all week.  I haven't worked less than 16 hours a day this week.  Been getting up even earlier just to get stuff done.  Being that I normally wake up at 4:45a, that's scary.  Anyway...sorry.  :)

Shelley made a comment the other week/day/month about patience.  She specifically said that she could wait just about any amount of time, as long as she knew what the exit time was.  She was speaking about getting discharged from the hospital, specifically.  

We had expected to go home around 4pm.  Someone told us we'd be getting out earlier, more like 11-1pm.  We were elated.  Then right around 10:30a something happened that delayed us until about 3:30pm.  We were climbing the walls.  Totally restless.  But we were 30 minutes ahead of time from our original expectations.  Why were we restless?  Because our expectations of the time spent had changed, and we felt cheated.  Looking at it at this distance, it's silly.  In the moment, frustrating.

So yeah, that's roughly how I feel tonight.  There's been a lot of "I can get through the 6 months of Chemo" thoughts in my head, and lots of emails cheering us on now that we're through "2 of the 6 months".  

We'd never really had a "best case" and "worst case" and "what we should expect case" scenario conversation with the oncologists.  We have always just been talking details about the treatments and what to expect regarding that.  We've been making the sausage, and not thinking about how to sell it.

Well.  Shelley had that conversation with the docs, and they gave us the best case....

Best case:
  • We do the first 3 cycles of chemo, and then do the MRI in early December to see what things look like in there.
  • We do the next 3 cycles of chemo.  These are the "rough" ones.
  • They take another MRI.  They track progression and assess.
  • They keep doing lower levels of chemo...different stuff, but still chemo, for the next 9 months until she is 3 years old.  (note:  She turned 2 thirteen days ago.)
  • They do a series of radiation treatments at 3 years old.
  • They do more chemo.
  • They do more MRI.  They assess.
That's the best case.  So.  My "get through the 6 months of Chemo" is more like, get through the 18+ months of chemo.

I'm not saying this in any amount of dispair, but to say that I need to radically reframe the way I'm thinking about this....and asking many of you to do the same.

If she survives this, and I really hope she does, it's going to be a long, long time.


On to the pictures!



This is a Play-Doh sculpture that Anya wanted me to share with you.  She liked it alot.


There's a dry erase board in the hospital rooms at Mott.  We saw this after Anya was there the other day, and we asked her what all the little marks were.

She responded, "We're learning about quotation marks in school."  I loved the crap out of this.




I really like this picture.  This is Amelie getting out of the hospital on Sunday.
At first look, you only see Amie.  
2nd look, you see the looming Shelley.  I liked the juxtaposition   



This is a spooky Witch cookie that Anya made with Grammie.



My Aunt Jo sent Hello Kitty plates to the girls a few weeks back.  They haven't eaten off anything else since.  They refuse meals unless they are on them. Woo!





My brother-in-law Noe is in Florida about to do the Ironman race this weekend.  He's training for it this week, braving the remnants of Sandy in the cold and windy Florida panhandle.  Of course, he brings his Amelie wristband to train in style.



Today was Anya's Halloween party at school.  Shelley was able to go, with some juggling and finagling things with Grammie and with Mott.  Anya, of course, was dressed up as Dorothy.



Anya loves to eat desserts.  Yes, she has Adler blood.


Anya, eating more stuff while others play.  I'm including this mainly so that those of you are curious about Anya's school can see it.  It's a swanky place.  We dig it.

Yes, my educator friends...my daughter is in a charter.



Finally, here's an ultra-short video with Amie wishing you a Happy 'ween.  :)


Final words:
  • Amelie has been crazy constipated for days, so they couldn't dose her with her upkeep dose of Chemo today.
  • They put her on a new anti-constipation drug today that tastes way better...so its easier to get it in her.  She pooped a bunch just before bed.  Yay poop!
  • Did you know that Vincristine both causes constipation and hair loss?  That's some awesome stuff!  What a great invention.
  • We're back in the clinic on Friday for a blood draw.  They're predicting that she's going to need to be infused with platelets by then.  Platelets very often cause a fever.  A fever immediately sparks an admittance to the hospital.  Fever = 3 days minimum stay in the hospital.
With that being said, I'm taking the day off tomorrow.  We're going to do something together.  Shelley is going to have alone time to recover.  I'm going to have alone time to recover.  We're going to recharge for the likely event that we're in for the weekend. 

Hope all is well with y'all!