Wednesday, December 31, 2014

Best Pie Charts of 2014!

This week, in all of my internet reading (and I do A LOT of internet reading, with as much down time as we have these days), I’ve been getting flooded with retrospective pieces, such as the Best Pie Charts of 2014!  (I wish there was such a thing.  I would click through on that).

So, I guess I might want to wade into the fray, and write a bit about the things that we learned this year.  Without further ado, the top things we learned this year <that I can remember/think of at 1:29p on New Years Eve 2014>.

When you open your lives and tell your story, it will draw people together. Through the blog, or Facebook posts, or emails, we have opened our lives to people to let them know what we’re going through.  At first, I started typing merely to provide a shield for Shelley, as the incredibly well-intentioned emails, phone calls, texts, and FB messages were going to drain her, and she needed all her energy and focus to take care of Amie.

Somewhere along the way, the posts became something more.  They became cathartic to me, letting me process, sometimes in the very moment of typing, the emotions that come from being the parent of a kid who is sick, and later dying.  

But they’re really more than that, too.  They’re a means to tie together a community.  I talked about reading Amanda Palmer’s book The Art of Asking a while ago, and in it she talks about how her sharing, her posts, her music, her tweets bind together the community that is her audience.  She shares with them, and trusts that her sharing, including her physical location certain days for fans to come say hi, will draw them closer and into a more caring and human place.

This year has been yet another example of just that.  In just the last month, two people that I had never met (Madison Y. and Laura R.) stepped forth and performed acts of service and caring for my family that I cannot explain.  They have never met Amie, nor my wife and older daughter.  I have met them both, but only after the fact.  They raised money for my family as a means to attempt to take some percentage of a burden off our shoulders…all because they felt it was the right thing to do.  For. A. Stranger.  That my friends is the power of trust and sharing.

People have no idea what to do in this situation.  When we get messages from people, we hear so many variations on the same message. We are so sorry to hear of this.  We have no idea what to say.  Argh.  Some people insert expletives.  Some people insert messages about prayer.  Some people just sit silent, and after a while tell us that it sucks.  We often then spend a few minutes making them feel better about it, and that’s absurd, and then you chuckle at the absurdity of that. Which makes me want to talk about…

“If there’s anything I can do for you, please ask.”  I wanted to talk about this for a second, but with a disclaimer.  What I am about to talk about is not meant as a rebuke, or a reprimand, or a call to action with us. We are fine right now.  But there are a LOT of people that you know that are in times of crisis and need.  I’d like to politely and kindly ask you to stop staying the above statement.

I know, at first blush, this seems rude.  Really rude, possibly.  Who am I to tell you what to say to other people.  But, stay with me here.  If this statement comes across your lips, you’re transferring the burden of action onto the other person.  You’re making them responsible for being weak, for being vulnerable, and taking the brave step to ask for help.  However, you have already recognized that they are in a position of crisis and they need help.  Instead of saying “if there’s anything…”, just help.

How can you help and identify their needs? Here are some thoughts…  Do they drive to the hospital on a regular basis for some sort of treatment?  Buy them a gas card, no matter how small.  Do they eat food? Get them a gift card for a grocery store near them (google their city, and you’ll know which is prominent).  If neither of the above two options are good for you, you can always choose your favorite restaurant/bar/movie theatre/yoga studio/etc and get them a gift card, or even just mail a check.

What I’m saying in all of the above is this:  it is hard to ask for help. If you are a guy, it’s damned near impossible.  We guys are socially molded <molded sounds too passive, but beaten sounds too violent> to never ask for help, to deny it when it’s offered, and to be shamed by it when it’s given, so that we need to simultaneously apologize and thank you multiple times while it’s given.  It creates a dynamic of power that is awkward and painful at times.  If you feel called to help, then help.  

Patience cannot be undervalued.  I have never been a patient person.  I give gifts early, or spoil them. However, the medical experience demands patience.  It cannot be rushed.  Amie is going to do well, or do poorly, on any given day.  She’s going to have days where she stares at the wall for 60+ minutes straight and refuses any change of activity.  She's going to have days where she wants to be snuggled for several hours straight, and not want to do anything else.  She doesn’t care that you have to pee.  She doesn’t care that you’re bored.  She just wants to be held.  Slow down.  Be in the moment.  Stop caring about what else you could be doing.  Stop.  Be.

Not working is hard.  This is the one that is most likely to blow you up, to make you go cray-zee.  As a teacher, and one that works my butt off to have good relationships with as many students as possible, I get a LOT of positive feedback each day on my work.  Kids say things directly to me, or they say things to each other, or they write things to me…and that’s the fuel that I use to keep going each and every day.  

Once I disconnected with that, stopping working on Halloween, I lost all of that.  I also lost the camaraderie of the teachers that I talked to on a daily basis…whether it was my ridiculous commentary with Tracy and Tracy in the hallway this year (or just Tracy last year), my jokes with Shannon, or any other silliness in those 4-minute pops that we have to bolster our sanity.  

But more than all of that, I lost the structure of the daily grind, and gained a LOT of introspective time to flip things around in my head and ponder possibilities.  Some of this is fine.  I think about how awesome it would be to hike and camp in Glacier National Park again, and maybe see a moose or grizzly. OOOOH Coool!  

But I also get to ruminate on the other side.  The awful side.  The collection of grizzly and brutal possibilities that could happen, and fill my nightmares and wakeful hours at times.  There’s a beauty and peacefulness that is found in meaninful work, and not having that, not having the teaching….is sometimes hard.

People are good.  We have always loved the Life is Good shirts/hats/etc stuff.  Its way too expensive, but it’s also really well made, and is a trade off.  Part of that motto, deep down, is that life should be celebrated.  I’m not saying that in the “pro-choice/pro-life” debate, but in the love what you’ve got while you’ve got it kinda sense.

People have been overwhelmingly kind and generous to us, in an infinite number of ways.  Whether it be in things made, gifts given, gift cards purchased, money donated, checks written, or time spent…people have been overwhelmingly kind to my family.  That might be because I’m so charming, handsome, and dashing………………………. or maybe just that they feel called to do so by the pain they witness, or that they want to wade in and help.  To that, we say thank you, eternally.

So.  On this New Years Eve, I reach out and shake each of your hands, give you a hug, or a high five, to this coalition of strangers, friends, and family to make 2015 a year that is better than this.  I can’t say better than I have, because that would discount what I have now.  Amie is happy, except for when she’s not.  Amie is comfortable, except for when she’s not.  I have to push myself daily to remind myself of this, and to always remember the peaks, and not the valleys.

Have a great New Years Eve, and maybe even make a resolution to be a little bit more kind, a little bit more generous, and a little bit more awesome to the people in your lives.  I guarantee it’s worth it. 

See you in 2015.

Wednesday, December 24, 2014

Loving it to pieces...

Greetings All!

We had the Adler Christmas tonight, and it was incredibly nice, as always.  Everyone (except for Kris Adler and Family, who are in Virginia) was there for many hours, and everyone got to spend time with each other.

The superstar of the day, of course of course (she's not a horse), was Miss Amelie.  She stayed up until 3pm, took a 2-hour nap on my lap, and then went strong until 7:30pm.  What a trooper!

We wanted to take a moment tonight and say thank you.

If you permit us, this is a blanket thank you to all the enormous acts of public and private generosity that we have been so humbled by, and amazed by, and overwhelmed by, and honored to have received.  We have been trying to write thank you notes to all the people who have sent us gifts, checks, money, or gift cards...but it has just overwhelmed us.

So.  To everyone who has helped us out, in all the ways that people can, thank you.

It takes the burden off us financially, emotionally, spiritually, and relationship-ally (I know this is not a word, but it works in my narrative, ok..thanks Amy :)  )  It sets our minds at ease knowing that people have been touched by Amie's (unwanted) adventures, the blog, or any combination of the above.  Most of the time, we are speechless.

If you would permit me, I wanted to spend a few minutes talking about two different gifts that we received, one months ago, and one yesterday.  I want to talk about them not to thank people explicitly (although that's never a bad thing), but to explain the bigger life lessons that I have learned, and hope you can hear/see a slice of, and reflect on...

Story 1:  Back in October, a family of a current McBride student approached me and asked me if I wanted to receive an American Girl doll for my girls.  We chose to give that doll exclusively to Anya for lots of reasons, most of which are that Amie doesn't really have passion and energy for dolls, and Anya really does.  Also, Anya is of an age that many of her friends have one, and it is a focus of conversation for them...and she can feel "normal" with it.

Here is a picture of her receiving that doll tonight.

The thing that touched me was what the Mom told me about it.  She has triplets, and won a single doll from a contest.  She said that she and the girls discussed the doll, and how trying to share it would be problematic (to say the least...).  The idea was floated that maybe there was another kid that would enjoy it more, and Amie was suggested.  They all agreed.

I hear this story, and I think many things.  I think about how we hear such terrible things about strangers and each other on a daily basis (thanks news agencies that I used to be intimately involved in!), and how it is a rolling conversation among some that the world is going to hell in a handbasket, and you might want to just focus on your family and leave the rest of the world alone.  I then see a family do such a selfless thing for my girls...girls they have never met, and most likely might not ever meet.  The idea of giving away an American Girl doll is floated by little kids.  Kids who society tells you are selfish, self-centered, and overly commercialized.  I met them to get the doll, and they could not have been any kinder, any more giving, and any more interested in elevating one little kid's life, even a smidge.

Story 2:  I got a FB message from a guy I used to work with for a few months at the end of my tenure at WNEM back in 2003.  Note that 2003 is 11 years ago.

He said that he had purchased some gifts for my girls, and wanted them to have them for Christmas, and would I mind if his wife drove them down to Howell.  I knew that Shelley and Amie were going to Mott for a day of stuff on Tuesday, and I suggested that we just drive up to see them instead.  I knew that Anya would get a kick out of seeing the inside of the TV studio, and seeing some of my former coworkers would be nice as always.

This is a picture of Anya crushing my head, as she was on the greenscreen used for the weather broadcasts in the station.

We got home, opened the gifts, and were floored.  They had spent a lot of money on incredibly well-thought gifts for both my girls.  They had bought 2 of everything, so they didn't need to share.

The smallest boxes contained the biggest punch, though.  In each of these boxes were identical lockets, for both Amie and Anya.  In the lockets were two pictures.   One was a family picture that we have hanging in our living room (thanks Janelle and Leia!), and one is of the girls hugging in Hawai'i after our amazing Luau.  Anya was overwhelmed by how awesome this gift is.

Here is a picture of her loving it to pieces.

This story tells me something different.  Zara and I worked together on weekends at the end of my TV career, when I was DONE with working in TV.  However, he says that I was incredibly kind to him, taught him a bunch of stuff, and he's always remembered me well....even after 11 years.

I look at this story and know that it's never the big things we do, the grand gestures, that matter.  It's the consistent kindnesses, the small gestures, the quiet moments, the times we go out of our way that people remember and matter to them.  When we spend the most valuable resource we have (time) to give to others, they will reciprocate.

So, my gift (and quest) to you, as you go through the chaos of Christmas and New Years, is:

  • to give thanks for what you have, while you have it, as you do not know when it will be gone.
  • to do the small things as much as possible, as they are the things that truly matter.
I could go on sermonizing for a while, but I shall not.  Today was a really good day, and I'm not sure how many of those we have left.

So, from the Strzalkowski family to your family, have a great Christmas matter who you define family as, or what religious persuasion (or lack thereof) you hold dear.  

Merry Christmas everyone.

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.

Saturday, December 13, 2014

A really overwhelming week...

This has been a really overwhelming week for me.  

How so? (you might ask, if we were sitting across from each other at a restaurant with cold, frosty beverages in front of us.  Coca-Colas, of course. Stop that)

Amie’s health is declining, and I believe it’s happening quite aggressively.

The fluidity of her movements has always been a major flag for us, in being able to see how easily she can pick up things, grasp a crayon, or do other simple movements.  We’ve gotten really used to picking up on that kind of thing as part of our daily monitoring of her.  Seeing it decline, and watch her having trouble doing the few things she can do independently is really hard.

Additionally, her blood counts have been literally the worst they have ever been.  Her platelets, which help her blood clot, were at 12 on Monday. As you’re reading this, yours are probably in excess of 150. She had a 90 minute nosebleed and we could not stop, and just went into the hospital to get her blood checked and transfused.  Her hemoglobin (red blood) was at 6, and yours is probably around 13-15.  That’s a little girl operating at less than 50% of the oxygen that she needs to thrive.  Marcia told me that most people, when they go below 10 refuse to get out of bed because their fatigue is so extensive.  Now make that 40% worse.  Yeah, we've got a tough kid.

Add into the mix that her radiation has all of a sudden exploded into radiation burns.  I could show you the pictures I’ve taken, but in all honesty, that’s not going to help anyone do anything, and is just going to scare and sadden so many of you to see it.  She says it does not hurt, and her blisters do not bother her… (we think we can say thank you to the methadone for that), but it is still REALLY hard to see, and not be overcome by it.

Top it all off with the fact that she’s vomited twice today, for no reason that we can really see.  She had some blood clots in her vomit, but nothing sizable to trigger her vomiting.  It's been a year since she tossed her cookies, so that's a warning sign.  Looking at the wikipedia entry for symptoms of a brain stem tumor, meaning that the tumor is spreading from the cerebellum into the brain stem, we’re hitting several of the qualifying symptoms.  Or she could just be vomiting.

Put it all together, and the signs that things are progressing, that the relief from the radiation is coming to an end, is very, very hard.

This is Amie and Shelley crafting this week.  Emotion shift!

But this week has also been ridiculously full of overwhelming and outlandish generosity from people.  We have received a constant stream of donations on our GoFundMe page.  Then Thursday night a virtual stranger to our family, with assistance from a passel of former students, hosted an event raised a ton of money for us at Egan’s Pub, in Belleville.  They donated 15% of their receipts to my family for all their sales this weekend, on top of the profits from the basket raffles/silent auctions that were held.  Then, tonight, Angels of Hope brought a whole car-load of presents to the girls.

What does a person even say to all of that.  It seems thank you is so pitifully insufficient, but then again, that’s not the reason they are doing this, that you are doing things….  

What does all this mean to us?  

We don’t have to worry, about the extra things.  I know that I will run out of vacation days on January 9th, and the money that is coming in will dramatically help supplement us until I can return to work….whenever that is.  I think we can all agree that the 8th graders don’t need to see a 42 year old dude weeping whilest teaching about the emerging antebellum emancipation movements, and how that helped precipitate the American Civil War.  That’s only going to be scary.

I'll be able to not work, to not worry about the money for as long as we need to.  To take care of our family, to take care of the details, and not have to stress about that side of things.  Oh, don't get me wrong, we've got plenty of stress...just not that stuff....and that's the power of the gift of weeks like these....of people like you. To lift the stress off of us that we have due to all this, at least the stuff that you can.

So, yeah.  I’m not feeling the spirit of writing today, at least like I normally do, but wanted to check in and say thank you, from the deepest depths our hearts, for all the generosity that people have shown to us.

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.

Wednesday, November 26, 2014

You matter more than you know.

Greetings all, and Happy Thanksgiving Eve!

Before I get to talking about Amie's 2nd ringing of the bell, signifying her end of radiation for the 2nd time, I need to talk about just how awesome and amazing a group of people are.

The above picture is Kristan, the Child Life specialist who works with the kids who are getting radiation.  Her job is help the kids have a calm and fun experience before they start radiation, and then to navigate the radiation therapies themselves with the least amount of stress, anxiety, or frustration.

Radiation, for you new readers, is a much more extensive thing than chemotherapy.  In chemo, we'd get 1-5 days of chemo, usually in-patient.  Radiation is quick (10-25m per session), but happens every day for weeks on end.  This time, we had 21 sessions of radiation, each time in Ann Arbor.  

Every day, when we arrive, we'd walk into the Radiation Oncology playroom and find Kristan setting up a craft, a game, or some other activity that would bring joy to Amelie.  I cannot possibly explain to you how much joy this brought to her to know that every single day someone amazing was going to be there waiting for her, to do crafts and play.

Shelley was really, really disappointed to learn earlier this week that Kristan was not going to be there for her last day in radiation.  Kristan held Amie last time when she got to ring the bell, and Amie adored her for it.  Kristan was heading up north for her husband's side of the family's Thanksgiving, and needed to leave immediately after work on Tuesday to get there.

While driving to Mott, she said to me that she really hoped that someone was going to be there from Child Life, because Amie really wanted to paint her Spider-Man mask after her treatment (more on that later).  If they weren't there, Amie wouldn't be able to do that.

When we rounded the corner, the entire Child Life staff (minus Kristan) was there.  All of Amie's best hossabill friends.  Jennie, J.J., Stephanie, Mariana, and well as Kiersten from music therapy.  They had all dressed up in pink (more on that later), and J.J. even improvised a cape, with J.J. and Molly covering themselves in pink post-it notes, as they hadn't worn pink that day.

Shelley and I were immediately overcome with emotion, seeing that they had all ditched all their other responsibilities to come give such an amazing send-off to my daughter.  The level of dedication, love, and affection that showed towards Amie  Want to know how overwhelmed I was?  I forgot to get a picture of them sitting there after we arrived. :)

To the Child Life staff who was there today (if you read this):  Thank you from the bottom of our hearts.  You made our lives today.

When Amie finished her radiation treatments this summer (in July?), she asked people to wear pink to celebrate the experience.  Most of the staff wore them, as well as our family.  It was an explosion in pink. As it worked so well last time, they decided to do it again, and  Amie was able to ring the bell again surrounded by an explosion of pink.

She was quite tired today, and as such, was really overwhelmed by all the attention...but that's par for the course for any interactions with Amie after her 12p nap these days.  As I said previously, she has a few really strong hours in the morning, and then fades quickly in the afternoon, and crashes really early for the day.

After she finished radiation today, she was able to paint her Spider-Man mask.  Last time she painted it red.  This time...she wanted to paint it Rainbow. 

Amie did almost all the painting herself, as the palliative radiation has done exactly what Dr. Robertson said it would, giving Amie a relatively pain-free few weeks, and far more muscle control over her body.  

She's got full control of her torso, bladder, and bowels...and probably 70% control of her legs and movement.  She has 0 desire to walk, but she will walk with someone holding her under her arms and supporting her...if you make her.

The masks that they make for radiation oncology are there to stabilize the head, ensure their lack of movement during the therapy itself, and help them line it up exactly for each treatment.  They do so much work to make the therapy as benign and happy as possible, that the mask becomes a non-entity in the experience.  

But to me, it's a scary as hell artifact of a scary as hell experience.  I am not claustrophobic in the least.  I fell asleep during my only MRI.  However, the idea of having my head strapped to a platform while radiation is streamed into my head... that's creepy as hell.

So Amie painting her mask, and us hanging said mask in our living room on the wall is both awesome and horrifying in the same moment.  It's a torture instrument, an artifact of hope, and a medical instrument all in one simple device.  Ahhh, cancer treatment.  What a devious monster you are.

Now:  For my big plan.  I need help.  From you.  My loyal readers.

Amie loves jokes.  I can't find a specific video right now of just her telling a joke, but there's several inside of videos we've already posted.  Anyway, the below two images, which are from a card that Grammie sent to Amie a week ago or so, explain perfectly the sweet-spot of jokes that Amie loves to tell, and hear.

Her jokes are simple, easy to understand for a 4-year old, and often revolve around animals.

Here's one of her current favorites:

What's a bird called in Winter?

A Brrrrrrrrrrrrrrrd.

So, your mission, if you choose to accept it:  I need jokes.  Fitting the above description.  Lots of them.  Possibly hundreds.

Send them to me in Facebook messages.
Send them to me in texts:  810-513-3180
Send them to me in emails:
Send them to me in actual mail:  email me for our address

Thank you, giant loving community of people who care for Amie.  You matter more than you know.

Saturday, November 22, 2014

The final product!

Greetings All!

Before I get into the meaty substance of this post, I will warn you loyal readers that there’s a few details in this post that are a bit…  much.  You’ll see when you get to them.  If you’d rather stay warm and fuzzy, you might want to skip this post.

But of course, you clicked through voluntarily….to a blog about a family that’s taking care of a kid who is dying, albeit gloriously and happily.  So.  You probably weren’t looking for warm and fuzzy, but Real.  True.  Honest.  I’ll do my part on all three.

People keep emailing us, calling us, texting us, FB messaging us (my, my…we have so many ways to communicate these days, and I’m not even listing them all!) and wanting to know “How are you doing?”  My response to each of those queries is the same, we’re as good as can be, given everything going on.

…and we are.  Really.

I can’t speak for Shelley, but I’m profoundly unhinged right now, unmoored.  Adrift.

For the past two+ years, I’ve had a schedule, a structure.  I take care of my girls, then I go to work and take care of my kids.  Work, home, work, home, rest.  It has a pace and a structure that are exhausting, yet profoundly comforting.  It gave me a constant source of positive/affective support that I could count on daily.

Now that I’m not working, and don’t have that…  it’s profoundly unsettling in some weird ways.  That’s not to say that I don’t enjoy the living crap out of being home every day with Amie, making videos, making her smile, cuddling her to sleep most naps and nights.  I do.  It’s the stuff of legend.  But that’s the entire kit and caboodle right now, and my brain doesn’t have much else to focus on…but death, dying, survival, and the process of the previous three.

As a total aside, I have no idea how Shelley has done this for the past 2+ years.  She quit her job immediately after diagnosis in September 2012.  (To be precise:  she went on FMLA, and then quit when her time to come back to work came due, but I digress). This has been her whole life, for the past 26 months, and I’m not altogether sure I could have done what she has done.  Moving along…

Being at home each day, in some weird way, is this weird waiting game. We know she’s going to die, but we have no idea when.  I find myself, at times when I’m off in my own head, thinking about life after cancer.  Thinking about what possibilities are going to be there for us as a family to travel again, to live again….without being tethered to cancer treatments.  I barely even remember what the hell that feels like.  

But then I immediately snap back and feel really crappy for thinking that, because in a sense I’m looking forward to her death in having those thoughts.  But then again, having those thoughts is completely normal, wishing to have the life back that was taken from you.  It’s…surreal.

We’ve gotten a lot of inquiries into people wanting to set up times to come visit us…a lot of them.  We’ve quietly declined most of them, and we wanted to kind of explain what Amie’s days look like, so that you can see why most of the time, bringing people into her life right now is really hard, and not so practical:

5am - 7am:  Amie starts coughing.  This is not a normal cough.  It’s a profoundly unsettling cough.  It’s a “grandpa who smoked for 40 years” cough.  She starts coughing, and you can hear her fighting to get a breath back at times.  She does this for several hours each morning, as she’s getting close to waking up.  

Marsha has listened to her lungs several times, and says they are clear, so it’s not pneumonia developing.  Dr. Robertson said that for people on such intense regimens of radiation, they can sometimes have bits of tissue and fluid leaking from their lungs which come loose and cause coughing like this.  She just needs to work through it.  

I cannot explain to you how awful it is to hear your 4-year old daughter have emphysemic coughing jags.

7am:  Amie wakes up.  Many mornings she wakes up in a massive pool of her own urine.  We have no idea why she’s not going to the bathroom during the day.  We take her multiple times a day and have her sit on the toilet.  Most of the time she says that she doesn’t need to go.

7:01am - 10:30a:  This is Amie’s prime-time. She’s energetic, funny, alive, and wanting to play/craft/interact.  We are not sending Anya to school in the mornings right now to take advantage of this time.

10:30a - 12:00p:  Sometime in this magical window, Amie fades. She starts getting grumpy, touchy, and overall wanting nothing to do with people.  That means it’s time for snuggle time, and then a nap.

11a:  Anya goes to school.  Usually I take her.

11:30a - 2:00p:  Amie is sleeping.  Hardcore sleeping.  Once she wakes up, she’s not overly energetic…but she’s awake.  She might do a little crafting, or maybe just snuggle on the couch.

3p: Shelley heads to the hospital to get radiation with Amie.

4:15p: I pick up Anya from school.

5:30:  Shelley and Amie get home from radiation at Mott.

6p:  Amie goes to sleep.

As you can see, adding anything into this schedule is….  hard.

Right around when Amie turned 2, Grammie made Amie a Kitty dress.  As you might imagine, she grew out of it, as she's now 4+.  She got the new Kitty dress a few weeks ago, and Grammie made another one for Baby Jumping.  SO CUTE.  

Amie and Baby Jumping can now wear matching Kitty dresses, as well as matching cupcake hats.

Steroids.  Not sure what the difference is between the steroids that bodybuilders use (illegally?) and the steroids that Amie is on, but she's poofy.  Hella poofy.  In order to fit her radiation mask, they've begun giving her a "Snowman beard" to help with discomfort.

A week ago, we went and cut down a Christmas tree from Broadview Christmas Tree Farm in Highland.  It sat (well hydrated) in our garage, waiting for today.  

Ya see.... putting up a tree is an event for the Shelley.  She starts off with a bare tree.

The kids need to be taken out of the way.  I ensconced them in Anya's bed, wrapped them in blankets, gave them treats, and gave them an iPad.  'Nuff said.

Once Shelley had the lights up, it was time for the kids to put on ornaments.

The final product!
(edit:  Shelley says she looks crazy in this picture, but I told her to do her best Vanna White, 
and she did....hence, the crazy.)

Once that was done, it was time for a Jet's Pizza and breadstick picnic!

This is another of my far-too-long posts.  So I'll end it here.  I have more to say, but I'll hold that until the next one.

Thanks again everyone for your support, for your thoughts and messages....sincerely.  :)

Monday, November 17, 2014

Some people are worth melting for...

The last 4 days have been.....full.

Not full like, I just ate a bagel from Panera, and man I'm full.

More like, I just ordered the bread bowl from Panera, with a side of baguette (yes, bread with a side of bread), and ate all the soup, the baguette, the torn off little hunk from where they poured the soup in, and then the entire bread bowl too.  That kind of full.

Thursday was the pool party that I described in the previous post.

Friday I went and bought a suit, the first since 1998.  Sarah rocked that out, and we were out in less than 40 minutes.  Good stuff.  Thanks Men's Wearhouse for making things stupid easy for me.

Saturday.  Wow.

First, we went to the Broadview Christmas Tree Farm in Highland to get a Christmas tree.  A family friend knows the owners, and contacted them so that we might be able to get a free tree, and have the experience together to cut it down.  The girls both liked that, although we had to bundle Amie up something serious in her off-road stroller to make her part of the experience.

Janey at Broadview was completely patient with Anya and Shelley as they wandered among the trees, waiting for one to speak to them.  This only took 20ish minutes, which was freakishly fast for my legendarily indecisive girls (Shelley and Anya).  Amie and I are way, way more decisive about things.  Probably to our own detriment.  We got TimBits on the way home, which made it even better for all of them.

Yes, I said them because side note, I don't really care about sweet things, for the most part.  After a meal, I might want a single square of chocolate like I do at work some times, but for the most part, I never want dessert. Or candy.  Or donuts. Or cakes. Or pies. Or really anything that I am supposed to like.  In the summer, I can get behind some ice cream, but for the most part, I can pass so easily.  All my cravings are liquid, unfortunately.  :)

Anyway, after we got home, and got Amie a nap (every day between 12-2), we received a visit from the lovely people who arranged the "Christmas in November" for us, courtesy of The Bayou Grill in Belleville.  Our elves?  Brian and Mary Copsey, Keith Barthauer, and three former students of mine, Janell Couperthwaite, Jillian Nelson and Leia LaPensee.

To say they brought a lot of stuff would be the most massive understatement.  This picture did not even encompass everything, as there was a lot of stuff on the kitchen table behind where we were taking pictures.  Yikes.

We spent the next 2.5 hours going through all the bags, organizing the gifts so that we could figure out what the girls could use now, what they could use in a few weeks, and what would be good for the future.  The girls were just blown away by the sheer amount of kindness, thoughtfulness, and generosity of everyone.

...and then we found the gift bag full of cards.  Wow.  There are no words.  Really.

Truly humbling.

We went to bed on Saturday night utterly exhausted, but surrounded by the love and well-wishes of a massive group of people who care about us, and are totally invested in the welfare of my daughter.

Sunday brought another event to us, and one with a slightly more unique visitor.

Camp Casey is a non-profit group that brings horseback riding to kids with cancer, to their houses, for them and their friends.  

They start off with grooming and education about horses, and then have the kids each take a ride on the horse...this one was named Ashley.

The girls had an amazing time riding Ashley, as you can imagine, and then got to do crafts afterwards, while the other kids rode.

It was chilly, but everyone had a great time with the Camp Casey folks, and especially Ashley.

Overall, the weekend was beyond good, but also beyond tiring for Amie.  We're hoping she gets her energy up/back over the next few days, as her nap requests have more than doubled since all that activity started.  :)  Good problems to have though.

One last little thing:  this is a piece of artwork I got from a student who I got to know well, but was never actually in my class.  She is a 10th grader these days, and I was so pleased to see this in our gift bags from the event on Thursday.  Thank you Ms. Lexie.  Truly.