Saturday, January 31, 2015

Yeah…she’s good stuff.

Greetings All,

I like to be the deliverer of happy witticisms in my posts, and I’m going to do my best to do that with this one as well, but there’s just no hiding the fact that this will most likely be the last post I make before Amie dies.

Let’s back up since the last post I did on Wednesday.  When I was last checking in, Amie was vomiting every 90-120 minutes.  She was really uncomfortable, and had started reporting what we knew to be both tumor pain (head) and nerve pain (extremities).  Remember what I was saying about things getting worse in the last blog post?  We were starting to really see it.

We called hospice on Wednesday night, and they came in on Thursday morning.  After consultation, and seeing in just how poor a shape Amie was at the time, they called Dr. Pittuch to consult.  They decided that the vomiting was most likely due to the brain tumor growth, which was affecting intracranial pressure.  

As a relatable point, if any of you have ever had a really bad migraine, and became nauseous because of it, you were suffering what Amie was suffering…’cept hers was stretched over 36 hours.  

Kathy (our hospice nurse) accessed Amie through her port, and then we gave her a large dose of steroids every 6 hours for the first day, and then have been giving them to her every 12 hours.  This immediately stopped the vomiting.  I cannot possibly explain how much more comfortable she was, and relieved we were, to see her vomiting stop.  I think she puked 15-20x that day.  So. Awful.

As we were giving Amie super frequent doses of Oxycodone for her pain, they also increased her dosage of methadone.  She is now comfortable and resting, which is beyond helpful to our mental state.

But she’s also slipping away.  She rested and dozed for around 22 hours yesterday, almost entirely in her bed in our bedroom.  Today, she woke up this morning around 7:30a, and wanted to come with us out to the living room, and that’s where she’s been all day.  

She talks occasionally, but mostly just sleeps and gazes at things when she’s awake.  We keep her warm, and comfortable, and talk to her when she’s awake…but mostly she's just floating.

I hope the next bit doesn’t come off sounding overly-jokey or minimizing, but it’s so damned strange to be playing a computer game, and look over and wonder if your daughter has died.  You stare at her for 20 seconds, don’t see a breath (or at least it’s shallow enough you can’t see it from 8 feet away), and wonder if that was it.  Then you see her take a breath, or move her eyes, and think….”Well, I guess not”…..and then repeat that a few times an hour, all day long.

Shelley and I are both ready for it to happen.  We’ve prepared ourselves as much as we think we can, and made a bunch of phone calls/texts/emails to close family to let them know that time is short, and last goodbyes are ready to be said.

Ok, now that I’ve done that, I wanted to share with you Shelley’s quest.  Her mission.

When we went to Borek Jennings (Thanks again to Noel for doing all the prep work for us!)  to do all the preparations a while back, we both said we weren’t interested in the traditional Catholic prayer card.  We wanted something a little more personal, a little more appropriate for everyday life for people.  That was the last I thought of it.

Shelley, however, thinks all the time about crafty stuff, and has been plotting out a way to carry out her awesome plan.  She wanted something that she could make a LOT of, and have available to everyone who came to the visitation/service…but wanted them to be something that people, both religious and not, could keep with them to think about and remember Amie.

What she came up with are these small fimo clay hearts, with a small A pressed into them, with a metal punch A.

She searched for several weeks for the correct tool, and found it at Wal-Mart of all places.  

Here’s where things got difficult, though.  How many to make?  We would love as many people to come to her visitation and service as would feel comfortable coming (seriously…if you want to come, then come.)  But we also imagine that there’s a lot of people who might not be able to handle coming, which we also understand.  Should we make 200, or 2000?

Shelley decided on the more the better.  She is aiming for making 1800 of them, and all the ones we don’t use, we’ll leave for people across the world, as we go about our journey in the years to come.

Anya is always willing to do the silliest stuff with me in pictures.  So, so much love for her.

She was getting hungry.  She started trying to eat them.  I had to stop her.

Here’s what I love about Shelley (ok, not the only thing, as that would be cruel), is that she is the eternal “lemonade from lemons” kind of person.  As Neil Gaiman said in the best graduation speech ever, she just wants to Make Good Art.

Give her the worst thing that a parent could be hit with, and what does she want to do?  Make Good Art, and share the love, share the memories of Amie, and share the experience that she’s been going 

Yeah…she’s good stuff.

OK, y’all.  I promised Shelley I wouldn’t take too long on this, and I want to hold myself to it.  Be ready, friends of Amie, we’re almost home.

Wednesday, January 28, 2015

Must. Stop. Typing.

Greetings All!

Ahhh, what to say, what to say.

The day after my last blog post Amie and Shel went for a checkup at Mott, to see Dr. Robertson, Dr. Pittuch (the hospice), and Marsha (the nurse practitioner).  They sat down and talked with Shelley for a long time, and they ultimately said  (I’m paraphrasing here) that she still looks really good, all considering.  They said she could go on like this for weeks, if not months.

I was not there when they said this.

My brain nearly exploded when Shelley related this to me.  How in the hell could this be considered good?  We’re still above water?  Really?

But what they were really saying is that the end is going to look so absolutely terrible, so awful, that you have a long way to go until you find out what bad really is.

Now, that’s of course not what they were saying, as that would be incredibly unkind and not helpful.  Except that is exactly what they were saying in spirit.  I know that.  It’s just a gut-punch to hear it.

We slid several steps more towards that eventuality this week, as Amie has been vomiting much, much more this week.  She puked 6x on Tuesday, and literally couldn’t keep anything down.  She’s losing her ability to keep herself upright, and can’t sit at the table to do crafts much anymore.  We tried several work arounds this week, but the simple reality is that the act of keeping her torso and head upright and straight is such a huge energy suck that it is just not worth it for her.  She’s also sleeping more, moving less, and far more inconsolable.

On a terrific, and much more sunny side, Anya went to Special Days camp last week. Parents:  you know those moments where all your worries subside? When you really realize just what a good kid you have on your hand, forgetting all the things you want them to improve upon?

Bringing Anya to the bus for Special Days camp is just that moment.  

As we are driving up to the bus, she says to me that in past years, everyone has come out to put her on the bus.  Amie, Shelley, me…we all come to send her off and wish her well.  She said that having us all there to send her off was great, and not having it happen made her kind of sad….but that Mommy was where she needed to be, taking care of Amie.  To be able to step outside of yourself and your needs, and make a comment like that…  priceless.  It’s definitely one of those golden moments where you know that you’ve done alright.

On top of that, in her two previous trips, she’s always sat at the very front, and loved that.  As we walked on, these 4 younger girls were sitting in the first 4 seats across from each other.  She stopped, looked at them, looked at me, and then said quietly, “This is where I’ve always sat.”  I smiled, looked at her, and said that she was older now, and they were younger, and maybe they needed the seats more than her. She just smiled and sat in the next row.  The patience and acceptance of that is great.  

Of course, I take very little credit for any of that, I give it all to Shelley.  I’m the “rile the kids up” guy…the “poop and fart joke” guy, the “wrestle until someone gets hurt” guy.  I insert chaotic fun into things.  Shelley inserts the stuff of legend.  :)

Camp for Anya is this place of fun and escape, and something that is 100% hers.  She is protected, cherished, and never ever has to talk about cancer, or how she needs to calm down for her sister’s sake.  Ever.  It is such a great escape for her, 2x a year.  Love those people.  Right, Jen?

Shelley's parents came over today to spend time with Amie and Anya to make cookies with the girls.

Amie did her absolute best, but it was just way beyond what she had the energy for.  
As an aside, do y'all notice the new hat for Valentines Day?  :)

I want to write more, but I want to post this tonight. 

Must. Stop. Typing.

Night All.

Tuesday, January 20, 2015

“She looks so good!”

Greetings All,

Been wanting to write a blog post for a few days now, and haven’t quite had the critical momentum to put my thoughts in order to make it happen.  

I’ve been thinking all day about a common response people have made about Amie all throughout her journey:

“She looks so good!”

This is usually exclaimed in response to telling someone new that she had brain cancer. It’s usually bookended by, “No Way!” and “I would never have known!”.  We usually take these comments with a grain of salt, because like many other things, they’re incredibly well-intentioned, but ultimately not helpful.

Yes, she has had the incredible luck to look really good for most of the time she’s been in treatment.  She continued to eat enough that she never needed a feeding tube, either through her abdomen or her nose.  Her scars were hid by her hair, or hats, quite easily.  She lost weight, but never so much to cause alarm.  She got pale, but never so pale that it freaked people out.  Overall, she’s looked far more like a healthy kid than a sick kid.  We’ve been lucky, if you can call the external looks “lucky”.  I’m not sure I’d use that term.

Which makes me think, if you will pardon my wandering mind, how hard it must be for kids with depression, in that the things that they are feeling and experiencing are invisible.  People look at them and only see the external, and wonder “What the heck is wrong with that kid?  Shake it off.”  It’s brutal in a way that is extra hard, in that they don’t have the benefit of having an external manifestation of their illness to give credence to the fact that they are sick.  Not going anywhere with this, just postulating.

Well, this week, things have been sliding quite quickly, and dramatically.

Here’s the progression for the last 4 days.

What we’re seeing is several things:
  • Her right eye is misaligned quite badly, and off to the right.
  • Her eyes are both overly dilated.
  • Her right eye is dilated more than her left.
  • Her right eye seems to be bulging a bit.

Internally, we’re also seeing a few things:
  • Her short term memory is dramatically decreasing.
  • She’s becoming more sensitive to smells.
  • She’s no longer interested in playing with Anya most of the time, only in parallel play.
  • We talked to hospice when they came on Monday, and they said that she’s exhibiting signs of what they would call dementia in an older adult, which we agree with.
Here's what that looks like:

So what’s that mean for everyone else?

Things are progressing.  Truly and really progressing towards the end that I’ve been getting ready for, and getting y’all ready for, for the last few months.

People continually email me and say that I have a great knack for dropping some really depressing stuff on people, and then turning it around and making it seem alright.  That I can temper the doom in some of the posts with an underlying seam of hope.  I’m not sure how to do that tonight.  Really.

When I look at Amie in the last few days, the disease is just so much more manifest in her face than it was, and has been.  It makes it far more real, far more intense, and that then makes me more anxious.  I’m really worried about her descending into a spiral of pain, and hope that when it comes, it comes quietly and with peace.

But, as with anything else that we do in life, we are not in control.  No matter how much we want to be, crave to be, or demand that we be…  we aren’t in control.  Life does not spiral out that way.

The only thing we can do is do our best with what we’ve got in this moment.  To look at what we’ve got in front of us, and do the best to make our spouses, our children, our peers, and our kids proud.  

It makes me think back to Monday, with the Martin Luther King Jr. holiday…  My absolute favorite moment on the DC trip is when we go to the Lincoln Memorial, at night, and gaze out, as Mr. Lincoln does, looking east over the reflecting pool.  

MLK gave his “I Have a Dream” speech from the landing beneath that majestic statue. 

Both men saw the reality that was in front of them, and made the absolute best out of the tools and situations that they had in front of them.  But hot damn it’s hard.  It’s so damned hard to do the good thing, the right thing in the face of that.

<Those of you with basic historical knowledge are going to point out that both of them were assassinated for their efforts.  
I am not comparing myself to them, but to their struggle to do right in the moment.>

So, with that historical reflection, I bid you adieu this night.

…and for those of you following the Oscars race:  Go see Whiplash.  Oh, my I loved that movie.  It’s not calm….but man does it resonate with me.

Thursday, January 15, 2015

Damn, she’s a good kid

Greetings All,

I had every intention of doing a blog post last night, but well, that didn’t happen.  Decided to hang out with Shelley instead.  Woo!

Tonight I had a meeting with the students and parents who are traveling to Washington DC with me in April (at least I hope I can go, I’m working on that detail in another email, later).  More on the meeting later, but first on a conversation I had 3x today.

“How is Amie doing?” 

It’s such a well intentioned question, and one I don’t know how to answer, really.  Because, honestly, it’s a question that needs to be more fully defined.

The first answer that I want to say is, “She’s doing good.”  That’s the answer that ends the conversation if I think the person is asking to be polite.  I think a lot of people don’t want to bother me, don’t want to upset me, and possibly, don’t really want to know.  They can’t imagine themselves in this situation, and are not in the head space at that moment to really want to wade in emotionally to the reality of my life at the moment.  But they also don’t want to be rude and not talk about it, so they ask “How is Amie doing?”  

If the person asking is someone I know better, and I know they’re asking because they want to wade in, I answered it like this,  “I don’t know how to answer that.  I guess it depends on what I compare her to.”  Because, in reality, it’s totally contextual.  How she is doing is compared to what you put her next to, and compare her.

If you put her next to a “normal” 4.25 year old, she’s doing utterly terrible.  She has horrific memory and word finding lapses.  She cannot walk.  She does not eat.  She can’t tolerate many smells, nor loud sounds, or even tight hugs.  She’s a wreck.

If you put her next to a person who’s not alive (trying to be delicate in my language here, yet as real as I can be), she’s doing great.  She’s still talking to us, hugging us, loving us.  She’s still creating art, and living life on her own terms.  She’s comfortable, and she’s interested in things.  She breaks your damn heart with how sincere she is in her hugs, in her greetings, and her joy in speaking about certain things.

I guess the last thing, and probably the most appropriate thing is to compare her herself.  If you do that, I think the most appropriate way to describe her is diminished.  She’s there, but there’s less of her than there was in October.  Less memory, less specific word finding, less energy, less focus, less stamina….less Amie.  But she’s still there, and there’s extreme value that.

To throw some medical details at you…  her bone marrow post-radiation seems to have recovered and stabilized.  She hasn’t needed any platelet or red blood cell transfusions for the last 4 checks we’ve done (2-weeks).  They’ve actually moved us down to once per week visits to the hospital as well.  She’s still not really eating, although we had a small spike in consumption in the last few days where she’s had a few bites of things.  Baby steps…

Anyway, tonight I had the meeting for the Washington DC trip, where the parents and the students had to come listen to me talk about rules and stuff, fill out forms, and then they got to start the process of figuring out which hotel room they were going to be in.  Shelley has asked me, as well as building principal and several others, if I didn’t want to just pass that off to someone else still in the building.  It’s hard to describe.  My most emphatic answer is no.  It’s something that is inherently positive, and fun, and amazing to take kids somewhere that will so dramatically open their lives to a different experience.  

I love taking kids on this trip, because you only need to stand with one kid at JFK’s tomb, looking back east at the Lincoln Memorial, with thousands and thousands of tombstones between the two points…and watch a kid get it.  Not just get it but really and truly GET IT.  They start to connect the dots…the sacrifices you make as a teacher for them, and the sacrifices that their parents/guardians make for them…and the soldiers who died for them to have their freedoms that they so callously disregard.  To watch that process is magical, and I guarantee each and every one of you would want to put up with so many annoyances, and not sleeping, and all this other hassle to have that moment of transcendent connection and wow with a kid.  Yes, I want to go on this trip, how could I not?

The meeting is also good just to see the students again.  We all complain about our jobs, and teachers are no different than anyone.  We get annoyed at the ill-trained students, the annoyances of the legislators who think they’ve got the key to teaching, and they need to make you do it their way, as well as 100s of other small things.  But being away from the students for the last 11 weeks is hard too.  I thrive on the symbiotic connection between us where I feed them, and they feed me.  I really miss it.  Not to mention the daily structure and routine of things.  I enjoyed seeing them tonight, and seeing their energy, and making fun of a few of them in front of a room of 400.  Sorry Brian and Patrick.  :)

One last thing to report out is both awesome and gut-punch worthy.  Amie’s growing her hair back, and is elated.  Totally excited.  She has always wanted to have Anya’s long hair, and has never gotten it.  She wanted it pre-diagnosis, but it was ├╝ber-fine, and not nearly long enough.  She had these soft little curls that were just amazing.

Then she lost it all, and it grew back.  It got to a really adorable length, and survived numerous rounds of chemo.  

But then we dove back into hardcore treatment in the fall and she lost it again.  She’s been in that bald-headed cancer kid wearing a cupcake hat for months now, and that’s probably who she’ll be in my memory.  Here's us doing what we do best together...being silly.

But she now has eyelashes again, and has stubbly nubbins of hair, at least according to Shelley.  I haven’t had the chance to look, as she does not like having her hat removed, and I have no desire to be needlessly cruel to just check on somethings as minor as that.

Anyway, to Amie’s statement, the reason I’m wandering in my thoughts here…  She keeps saying, “Daddy/Mommy, I can’t wait until I have long hair again…I want to have braid across like Anya.”  (Shelley does this special thing where Anya’s hair has a headband like braid across the area above her forehead).    Oh man does this hit me when she says it.  Yes, Amie, you can have that hairstyle anytime you want.  Of course.  Of course.  Whatever you want.

Damn, she’s a good kid.  She knows nothing, but never complains either about her deficits.  Ever.

Thanks for sharing our journey with us friends.  Thank you sincerely.

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.