Wednesday, January 7, 2015

Living Life on Pause

The last few days have been so surreal, so very strange, that I thought it best to sit down and do a bit of processing on it all.

It falls into that “best of times, worst of times”, category.

Let’s start off with the medical stuff on Amie, and how that plays out with everything else:

Amie hasn't had any substantive eating of any kind for over a month now.  When I mean substantive, I mean total caloric intake.  In the previous 3 weeks, she has eaten maybe three bites of anything.  So, let’s say she’s taken in 100 calories, total, in solid food, over 21 days.  This week, she’s started to eat pita chips.  She eats maybe 2 at a sitting, and then says she’s full.  According to this website, each pita chip is 9.2 calories.  I’m guessing she’s had 15-20 chips so far this week, so she’s maybe hitting 200 calories.

What’s going on in her body is an epic battle between the tumor and basic biology.  Her body is asking for food, and at times making her crave it (veggie meatballs, popovers, blueberry muffins, Jet’s breadsticks are all things she’s asked for this week), but as soon as she attempts to eat it, her tumor gives her a shove and tells her that EATING IS A BAD IDEA.  So she either takes a single bite, or puts it down.  Pita chips are the only thing that have made it in, and stayed there.

We’re medicating her with anti-nausea medication around the clock now (Go Zofran Go!), but that only keeps her from puking, and doesn’t affect things enough to let her eat.  I cannot tell you with enough force how freaky it is to have a kid not eat for a month.  She’s losing body weight slowly, but not nearly as slow as you might imagine.  She’s drinking 1-2 cups of whole milk a day, which is giving her 200ish calories, but that’s not doing much other than staving off dehydration, for the most part.

So, in a normal world, only eating pita chips would be catastrophic, but in our world now, eating pita chips consistently is monumentally good.  Surreal World Point 1.

Her bone marrow seems to have kicked in to some level, and she’s no longer at critical levels for her platelets and red blood cells.  She hasn’t needed transfusions for either in over a week.  She’s still operating at 20% of a normal persons platelets (we transfuse below 30, you’re at 150, she’s at 33), and her hemoglobin is at 9-10.  You’d be utterly exhausted and having nosebleeds, yet we’re doing little dances around the house because she’s doing that well.  Surreal World Point 2

I had a meeting down in Belleville today, and used that as an opportunity to stop into school, and man that weird.  The person who took over my classroom for the last 9 weeks quit the day before break, and they had a new guy start on Monday to take over my room (hopefully) for the rest of the time I’m gone.  He seemed really sharp, and knew what Magic: The Gathering is (uh, oh.  Geek Alert!)

Even though I was purposely avoiding them, the kids who saw me kept coming up to me, giving me spontaneous hugs, and then started immediately giving me crap about not being there, and when was I coming back.  This was not a singular experience, but happened over and over again.  I had to kindly remind them that I wasn’t coming to work for a very specific reason, and that I wasn’t going to return until that was all done (my exact words).  Over and over they were annoyed, but in that 13 year old way, and not the 33 year old way.  But it was still great to see people, talk to people outside of our little bubble, and get some love from some kids.   Surreal World Point 3

We got a phone call from a screener for the Ellen Degeneres show, as one of you wrote to them to let them know something about us, and our story.  I talked with Rachel from their show, and shared a bit more information about our journey and who Amie was with them.  I can’t imagine anything is going to come about from it, but it was so strange to be talking to someone from a high-profile show like that.  Surreal World Point 4

Probably the most surreal thing, though, was what we did this morning.  We purchased Amie’s burial plot today. 



The map above is of Thompson Lake, just north of downtown Howell.  Most people who drive through Howell never see the lake, and honestly, it’s the prettiest part of the city, and definitely worth the two block drive off Grand River to see it. On the western edge of the lake is Lakeview Cemetary.  We have taken so, so many bike rides, walks, picnics, and drives through the cemetery, as the point of it has this great willow tree that arches over the water, and is such a peaceful place to sit and read/think/eat/etc.  I know it sounds macabre to say all of this about a cemetery, but if you see it, you’d understand.  

Just north of the cemetery is the kids’ favorite park, and then the public beach that we bike to in the summer.  There’s this amazing hill you have to drive down to get to the beach, and shoots you down for several hundred yards, weaving between trees, and gaining serious speed.  The girls would love to ride together in our bike house, chanting “Go Daddy Go!”, as I rode to the beach.

All of this is to say that it was a very special place to us, and once we started thinking of where we wanted Amie to lay in rest (Lie in rest? Amy….help?), it was the only place that would make sense for us.  The only place.  So, when we heard that it was sold out, we were crushed.  Not overwhelmingly so, but still a good kick.  We reached out to them, and found out that what we had been told was partially true, but not completely.  The adult portion of the cemetery is sold, completely.  However, the area known as “Babyland” still had plots.  I called yesterday about this, and we went and bought the plot this morning.  No chances.




Those are the pictures of where we purchased today.  It’s hard to see the beauty of the place, but trust me, it’s pretty awesome.

On top of that, we were told that Shelley and her Mom can plant flowers on the grave plot, and tend them all they want.  Pretty darned cool, I have to say.

So…we’re joyous about the ability to buy her gravesite.  What a hugely strange thing to type and do, but we are, sincerely.  It really worked out nicely.  Surreal World Point 5

All of this is to say that we’re doing alright, and living this strange life on pause at the moment.  We’re not making plans, and couldn’t really make them if we tried. We wake up in the morning and try to have the best day that we can with her, and help her to have the best day that she can.  We have absolutely no idea when the next phase of our lives is about to start, and we’re not really anxious to have it start, but the not knowing any of the above makes it so, so surreal.  I imagine it’s a bit like being stranded at an airport for an extended period of time.  

Like the people who were in Iceland when the volcano erupted a few years ago that blotted out the skies, or people on business trips after 9/11….you’re stuck with no exit plan.  You’re safe*, but not in control of your destinies.  That’s exactly how I feel today.  I’m safe.  I’m loved. I’m missed.  But we’re so not in control of our destinies.

It completely unmoors you. This is not something that we’re trained for in society today, as you’re led to believe that you’re always the captain of your ship.

So, my friends, here’s to being unmoored in style, and adrift on your ship.  You’re not sure where you’re going, or when you’re going to get there…but you’ve got great company, and you might as well enjoy it.  Thanks for being participants on this journey.

I have more to write, but I’m thinking I’ve said enough tonight.  

G’night.