Saturday, December 20, 2014

Peculiarities of Now

Greetings All.

Life has been normal, that is, our new normal, in the last week.  Amie is on day 7-ish of not eating.  That’s not saying “not eating” like a middle schooler might say they’re starving, as in “I haven’t eaten in 90 minutes, I’m starving.”  It’s ingesting no food at all for 7 days. None.  Not even a bite. 

Marcia, Amie’s Nurse Practitioner at Mott says that’s way more normal than Amie’s pattern over the last 2 years, which was having a hearty-ish appetite throughout her 20+ rounds of chemo and 2 courses of radiation.  Marcia made the comment that it was a miracle that she never needed a nasal-gastric tube (delivering food through a feeding tube through her nose) during that time, because most kids just stop eating.  She danced close to the threshold a few times, but Shelley and I (mostly Shelley) always figured out a way to convince her to eat...something, whatever it was.  All the food rules were out.

I cannot tell you how glad I am that we never had to go through that.

Back to the idea of the new normal.  It is so strange how quick you can adjust what it is that you say is normal.  Here is a small list of the things that we accept as being “the way it is” for us now:

  • Amie coughs, a lot, every day.  Horrific, wracking coughs.  They are decreasing, but yeah.
  • Her radiation burns (which are dramatically better now) on her back looked like someone painted her back, and bottom of her neck, with bright red paint.  It all peeled off like the worst sunburn you’ve ever had, and is just light pink.  She still reports no pain.
  • She pukes almost every day now.  It’s probably related to the tumor growing into her brain stem, but could also be related to the radiation stuff.  Who knows.
  • Shelley is now a champ when it comes to cleaning up puke.  She was phobic, now she’s pretty much ok with it.
  • Amie is now seriously confused at times.  She is forgetting pretty much everything but our names sometimes, and just looks down when that hits.  But she’s got really good times too.
  • …and the worst of the “getting used to it things”:  checking to see if she’s breathing after she’s been sleeping for a long time.  She took a 4h 30m nap today.  I checked on her 2x to see if she’d died.  Now, in a normal world, that would be the most over-concerned thing a parent could do, each time she napped.  It would be the kind of thing that you’d hesitate in telling friends and family.  Us?  It’s our new normal.
Which leads me to the philosophical bit of fluff that’s been bouncing around my head for the last week.  Before I wade into this, I’d like to say that this next bit of conversation is something that some of you might be unsettled by, but then again, you clicked through… 

So, my question is this…when is life not worth living anymore?

Some would say that you never give up.  That you keep treating the condition, the symptoms, and the side-effects as aggressively as you can, because you never know what’s going to happen in the long-run, and you have to keep hoping for a miracle.

I see their point, but if Amie’s cancer was to suddenly/magically disappear, she’d still have massively compromised heart and lung systems for the rest of her life, not to mention the brain damage that has been done through the palliative radiation that she received in November.  Being a dad that pays so much attention, I see the diminished capacity that she has in all these areas, and it makes me tremendously sad.

But then again, would it have been better not to have given her the palliative radiation back in November and let things take their course more aggressively?  Odds on, she’d be dead for weeks now.  We would not have gotten those 3 really good weeks before Thanksgiving that we got.  Those weeks were golden, amazing weeks.  We were able to do so many things as a family, and make so many new memories.  But in doing that, we seriously compromised her immune system, her ability to clot blood, and make new blood cells (the radiation messes with the marrow, which does all that).  She coughs like mad for hours most days, and is now slowly sliding away in front of our eyes.  Things are only going to get worse.  Would it have been better to sacrifice those weeks, in favor of a quicker and possibly gentler end?

I’m steadfastly on the “it was worth it” pile, but seeing her have these symptoms that she has to endure, and will continue to do so, for who knows how long….is hard.  Seeing her coloring at the table, unwilling to eat, coloring pictures, unable to respond to so many questions, looking really confused at times…that’s really hard.

…and if she gets an infection, with her white blood cell count to low, do we treat it?  We have been told by others that the end will be rough.  Would it be less rough if she got an infection and we let it take over, by not treating it?

Anyway.  Not the kind of thing that most people want to think about….but the kind of thing that bounces around my brain when I sit and look at her at the table.  

One last thing, before I forget, we made our funeral arrangements this week, and her funeral will be at the Borek-Jennings Funeral Home on Michigan Ave, in Howell.  For those of you reading who have connections to downriver, it’s owned by Todd Borek, Class of 1988 from Mt. Carmel in Wyandotte, where I graduated in 1990.  They’ve been INCREDIBLY generous to us due to Amie’s age.  


More news on that front when we get closer.


Anya and I had some time together this week, waiting for her art class after her Christmas concert.  As we were killing time, we were modeling sunglasses.  Want to know a truth about this girl?  She's hella resilient.  I imagine so many kids would be acting out, demanding more attention...or on the opposite scale, really sad that her best friend is dying.

Anya?  Nope.  She's as helpful as she can be, and still able to be silly and have fun with when the opportunity presents itself.  Such a good kid.


What does Amie like to do?  She likes to sort.  She can sit and sort things for seriously long periods of time.  She's 4.  She sorted these buttons for 90 minutes straight.  Good stuff.



...and here's what consumes most of the time that Amie's awake.  Coloring. Crafting. Making.

She doesn't want to watch shows (much to Anya's annoyance at times).  She wants to make.  To create.

We're having her write her name on the back of each creation, and have been giving them out as gifts to people.  She's also been creating Christmas cards.  For those of you who receive the cards with the hand-made tree made out of strips of paper, the girls each made those.  Amie was a champ at it.


But at the end of the day, no matter what, we're giving her everything we have, while we can.

She doesn't have a lot left, people...but she's not gone yet.  Here's to cuddling while you can.

Have a great Christmas, if I don't update before then.