Saturday, December 6, 2014

It was the best of times, it was the worst of times

Greetings All,

“It was the best of times, it was the worst of times”.

I remember reading that when I was a young lad, thinking it was a strange thing to say, probably not really understanding it very much…and moving along past it.

Well folks, I realize now that I’m living it.  Funny, how life works sometimes.

This past week has been really amazing, but also really crappy.  

Amie’s platelets are low.  Like crazy low, and have always been a consistent problem for her.  The platelets are the part of the blood that stop you from bleeding, and help clots form.  So, a low platelet count can be a really bad thing if you get hit hard, or do something really jarring to your body, because the bleeding can be internal, and really cause problems.  A “normal” person with no problems hovers in the 150,000+ level when their platelets are checked via blood test.  Amie gets transfusions at 30,000.  She’s had a few of those during and since radiation concluded, and was just above that threshold last Wednesday when she was last at Mott.

So, all week long, Amie has been getting small bleeds through her various body openings <ahem>, and that’s most likely due to the normal everyday things that she does.  Her platelets are most likely really low right now, and the coughing (more on that later) is probably causing some minor tears and ruptures, causing her to bleed.  

In what world does your normal shift to where you’re ignoring the nasal and anal bleeds from your 4-year old, and chalking it up to things just being as they are.  Ugh.

But then again, she still has 3-ish hours a day to really have fun with Shelley and Anya, crafting and creating, and coloring, and eating, and eating.  During those hours, she’s so animated, so fun to listen to and talk to, so…Amie.

But back on the crappy side those hours are so few, and she’s sleeping more and more as time goes on.  She’s sleeping about 16 hours a day now.  She “wakes up” at 7:30a.  She starts coughing around 5am, and then we give her an Oxycodone, to attempt to limit her coughing.  She coughs off and on for 2-hours.  Horrible, wracking coughs that have moved into that “normal” that disturbs me so much.  She’s energetic and awake until Noon, and then sleeps for 2-4 hours.  She wakes up, and is running between 25-50% energy until dinner, at which time she crashes for the rest of the night by 6p most days.

But back on the happy side, she’s amazingly affectionate all of a sudden.  She keeps giving us these amazing kisses, hugs, and wanting long stretches of snuggle time.  It’s primarily been with me she wants to snuggle, which I’m not going to argue with…ever.  So these periods of snuggling, where she pushes her little arm over my neck and attempts to pull me close to her are just….transcendently amazing.  Life affirming, memory making, and beyond special.

But back over to the crappy side, the steroids, of which we have taken almost down to zero, have inflated her face so far beyond what I think of as Amie.  


Here is a pic of Amie from November 9th.  


Here is a pic of Amie from December 6th.  The change is so, so dramatic.

Her skin is pulled tight, like a swollen area after a bee sting.  Her smile is so awkward, because it looks like it might even be a bit painful….which I know is just parental overreaching, but still.

It all just builds into this really, really weird time period….because we’re essentially on a death watch, paired with a memory acquisition imperative.  Wait for the bad, build the good.  What a screwed up, but completely special time.  

If any of this sounds like complaining, I swear to you it isn’t.  Not even a little.  I’m just riffing on the existential weirdness of this time, and could probably do so in another venue….but y’all have said to me that you want me to process what I need to process, write about what I need to write about, and move along.  I imagine that there’s tons of people out there who could read what I just wrote and think that I’m complaining because they’d love to get that kind of time with the person that died unexpectedly.

But as a parent, living in this time is so. strange.  We’re programmed by society to do everything we possibly can do to fight, to protect, to prolong our kids’ lives…and there’s a giant slice of acceptance and surrender that are present in this time.  But I know that if we were to start pumping her full of all types of experimental stuff, we’d just be doing that for us, as it would be our desires to “win”, and not her overall quality of life, that would be the reason for doing so.

Ugh….so much stuff to unpack in there.

Last thoughts before a slew of pictures:   Our final fundraiser (I promise. Really. I’m feeling like a burden) will be December 11th at Egan’s Pub in Belleville.  The organizer, the amazing Ms. Laura Ridenour, would love a few people to help her run 50/50, Silent Raffle, and other things on 12.11.14.  If you’d like to help, and can commit to being there for her, send me an email and I’ll give you her information to coordinate stuff.


Shelley had first knit Anya a cupcake hat, many years ago.  She knit another for Amie a few months ago, and it has become Amie's go-to hat for a while now.  She DOES NOT TAKE IT OFF, except for when she's in the bathtub (which is less than 5m each time) and when we're changing her clothes (which is less than 30s each time).  It's now how I see her, in my mind.  Shelley just finished another hat for Anya, and of course one for Baby Jumping.  Three cupcake hats! Yay!


Here's the snuggling that we do. I've gotten a lot of practice at it.  It. Is. Priceless.

Night all.