Wednesday, June 25, 2014

Cancer Compromises...

Greetings All,

Let’s knock out the medical/update stuff before I get all philosophical: 

  • ·      Amie is doing really well this week, and is right now at her 23rd radiation appointment.
  • ·      As they said would happen, she’s starting to get these slight radiation burns on the back of her head.  I haven’t had a chance to take pictures of them yet, but they look like a bad rash.  They haven’t bothered her one bit yet, so I’m hesitant to bring any attention to them at all.
  • ·      She started her next round of chemotherapy yesterday, and will get that every day this week, through Saturday.  We’re hoping the medicines they gave her prior to her start this round will help ameliorate (see what I did there….) some of the more negative side effects of Irinotecan….without a doubt the worst of the chemo meds we’ve encountered this far.
  • ·      We are waiting on the travel agent’s call to get the final details on the trip to Hawaii.  We’ve asked to go the week of July 13th, just after the Teen Mom/Teen Mom 2 fundraiser on July 13th at Mt. Brighton.

Without a doubt, this was the best year of teaching that I have ever had.  I’ve had better relationships with students, felt more on the ball with certain things other years…but this was the best year overall for everything coming together in my classroom.  However…

I am so glad this school year is over.  By the end, I was barely holding things together… my filter was terrible.  I can’t remember if I said this to a parent, or in the blog…but the kids who need the most patience in my classroom are often the ones that inspire the least patience in teachers.  It was so, so hard to summon that patience for kids who were not being the best versions of themselves.  Those students are often the ones that lack the guidance, discipline, mentorship…whatever you want to call it, outside the classroom.  They need patience, and boy oh boy did I run out of it after I got back from Washington DC.  I’m very lucky I didn’t say something too snarky to someone.  Looking forward to having a few months to recharge my well of patience.  J

I’ve been thinking recently about parenting, and more specifically about parenting during a struggle such as we’re going through right now.  I know we don’t have a monopoly on struggles…and there’s tons of other parents going through really hard situations too. 

In my mind, I was thinking of many of the situations we’re going through as “Cancer Compromises”.  For instance:  Anya has developed a serious habit of denying any responsibility for mistakes with the words, “I didn’t mean to…” or “I wasn’t trying to...”  For example, Shelley asks Anya to put away her art supplies at the table, and she gets sidetracked playing with Amie.  Shelley will then ask again 10-15 minutes later.  She’ll get sidetracked again, and Shelley will repeat again.  By the 3rd time reminding Anya, Shelley’s voice will get much sharper (and this could easily be me too…but mine would sharpen on the 1st reminder) and Anya will immediately launch into a conversation about how she didn’t intend to forget, and why her forgetting was justified.  She often ends this whole episode in a ball of tears when we explain ourselves.

To me, all she has to say is “Ok, Dad.” …and then do it.  That’s all.

So.  Cancer Compromise: 
  • ·      Is Anya acting like this because this is a natural developmental milestone where she’s asserting her independence, and she needs our firmness to fall into line with our family’s expectations?
  • Is Anya acting like this because she’s having a hard time dealing with the stress of knowing that her best friend/little sister is massively struggling with cancer and could die, and has so many emotions bubbling around in her mind that she has an extremely hard time processing them, and gets overly flustered?

Just so you don’t think this is just Anya, let’s do one on Amie.  Shelley asks Amie to put her Princess nightgown back in her PJ drawer so she could wear it to bed tonight.  Amie looks right at Shelley and says, “No.”  Shelley asks Amie what she just said, and Amie says “I said No, Mommy.  I not going to do it.”

Cancer Compromise:
  • Is Amie acting this way because she’s 3.5 years old, and its natural to assert one’s independence, and needs to understand that our family does not talk like that, and her sass is rude?
  •  Is Amie acting this way because she’s undergoing an inhumane torture of radiation and chemotherapy that you wouldn’t wish on your worst enemy, thus making her grumpy, tired, irritable?

In both situations <and I could type out 20 more if I felt like taking the time>, we feel totally justified in talking to our daughters about the way our family acts, the expectations we have for communication, and how we expect them to behave. 

In both situations, we struggle….knowing what both kids are going through.  We know that as adults we are constantly wrestling with the emotions that are going through our minds, and what that does to our behaviors and reactions towards others.

Shouldn’t we be far more lax in how we react towards the kids?  But can’t that same argument be used for why I have students in class who are constantly focused on themselves, rude as hell to others in 8th grade, trying the patience of teachers on a daily basis?

I do not have the answer to this question…  and not sure there even is one other than for us/me to  our hearts and guts and live with the results. 

Anyway… just thought like riffing on this idea for a while as I wait for Shelley’s car repairs to be done (recall work).

One last thing…  it’s our 10th anniversary tomorrow.  We’re spending it together at radiation and chemotherapy, and then home.  We had grand plans this time last year, but those are on hold.  I think we’ll have a ceremonial dinner in Hawaii in a few weeks, and make that our “official” 10th anniversary.

I did buy Shelley an awesome present though.  I can’t wait to give it to her.  I have a problem with things like that.  It actually hurts me to be patient.  So I will now shut up…

Finally, pictures!

I've long showcased Anya's drawings here, but not sure I've shown you any of Amie's "Persons".  
I love them, but they can be profoundly creepy in an awesome way.
Put a knife in any of their hands, and they can easily jump into a horror movie.  MUAHAH!
But I possibly love them even more because of that.

Not sure if any of you have as many apps as I do going on your phone, but I've recently become a big fan of the Google app that hooks your pictures up with Google+.  If you take a bunch of pictures in succession, the app recognizes that...and then automatically makes pictures like this for you.  In some of them, they make an animated .gif, in others they arrange them in cool ways.  Anyway, I thought this one was cool, and immediately made me think of The Brady Bunch....with cloned Amies.

This picture got a ton of love on FB yesterday, but I wanted to highlight it for another reason.  I know a LOT of you are passionate Detroit Tigers fans.  If you look at the door behind Amie, that's the Child Life playroom in the cancer infusion clinic, where she and others get chemotherapy delivered.  This room was sponsored by Brandon Inge and his wife.  
I know nothing about this guy, but love that the room is a place that she gets lots of enjoyment out of when she has the energy, and his donation made that possible.  :)

We went to Book Buddies last night at the Howell Carnegie Library.  This was in their Build It room, while we were waiting for it to start.  
I love love love how Anya is always willing to take a silly picture with me, no matter what it is.  

Amie hasn't done a scrunchy face for me in a long, long time.  He's an update with her sheepdog hair.

Have a great day everyone!

Thursday, June 19, 2014

What a week...what. a. week.

What an absolutely surreal week.  Truly.

Here's a few highlights:

  1. We were still in school today, and it is June 19th.  June 19th.  When I first started teaching, we were always out of school by the end of the first week of June.  There's nothing like teaching in khakis that are wet to the touch from sweat.  I was going to say moist to the touch, but that would be uncouth.
  2. We lost power for 2.5 hours on day 1 of final exams, and had to sit in the dark for several hours.  When the power didn't come back on, we bussed the kids to the HS to eat, as we have such a high percentage of kids who get the majority of their meals at school.  As soon as we left, the electricity came back on.  We came back to have two more hours at school.  
  3. An article about Amie was in the Livingston Press and Argus on Wednesday.  That article then got picked up on Thursday by the Detroit Free Press.  That article (with modifications) then got picked up by, due to the inclusion of the Teen Mom/Teen Mom 2 participants.
  4. We were tentatively approved by Make-A-Wish for our request to go to the Aulani resort in Hawaii.  There's a bunch of stuff that could derail it, but as of right now, we're headed there for 5 days in about 3 weeks.  Crazy.

Yeah...  what a week.  What. A. Week.

....and we got the results of our Spinal Tap back and we're happy/proud/elated to announce that Amie's cancer has not spread to her spinal fluid.  YAY!  That is a giant thing.  Massive.  Huge.  

There's a TON of things I could write about, but honestly, I just want to run around and celebrate and not be writing at the moment.  Please excuse me, Shelley and I need to dance around a bit.

<Insert Counter-Argument Figure on Shoulder>  To temper our enthusiasm, it might be appropriate to note that having a clean Spinal Tap means that we're going to have another 6 months of bone-blistering chemotherapy starting soon...  Amie will lose all her hair again, be in the hospital for days/weeks on end, and that will go on for the remainder of 2014.  It will be awful.

<Kicking Counter-Argument to the Curb.  PUNT!>  But that's all about next month.  Let's focus on now.  Now?  We've got something to celebrate.  Amie's cancer has not spread.  I'm done with school after noon tomorrow.  TONS of people are reading about Amie in newspapers and websites across America.

Tonight's for the good stuff only.

As a final moment, here's a picture from the fundraiser Shannon did for us almost two weeks ago.  So many good shots, y'all need to go give her more of your business. woo!

Saturday, June 14, 2014

Samson lost his hair too....

This week was a busy week.  I'm in the process of wrapping up school, and all the panic and elation that that sort of thing entails.  I never in my wildest dreams thought I'd be in school until June 19th.  Ugh.

Amelie has no real interest to take pictures these days, for whatever reason.  However, according to Shelley, if you give her the opportunity to take one silly picture, she'll do one serious one as well. 
Here's the evidence to that.

Shelley and Amie got the opportunity to  head to Grammie's place on Friday, while Anya had a full day of school.  She usually has half days each friday at CSA, because they do planning and professional development each Friday.

As some of you might know, Grammie has a massive flower and vegetable garden.  Apparently, the last few weeks have been plentiful to her garden with the heat and wet.

Of course, in Shelley land, you must process and store those fruits!  Strawberry Jam it is!
She made a LOT of jam.  I'd guess 16+ pints of it.  
The girls will eat that for the next 12 months, so it's a good investment of an afternoon.
<edit:  Shelley, ever humble, wants you to know that she only made 8 pints of jam!>

Shelley had an appointment to meet with the couple from Teen Mom this week, to plan out the fundraiser that's going to happen on July 13th.  She said that they were really kind, super-good with Amie, and of course Amie charmed the living heck out of them, as per her usual habits.

Amie loves to tell jokes, and she's been telling this one all week.  
Thanks Janell and Rawlin for providing the gift, and the joke.  
Both were well received and we're super appreciative.

Firstly, I love the picture for a lot of reasons.  She's playing like a regular kid on a slide.  She's happy, and her hair is going static crazy.

However, take a second and look how much hair she has underneath.  
The picture above was shot on Monday June 9th.

The picture above was shot tonight, Saturday June 14th.

What is it about hair that makes things so much more real?  We tie so much to virility, power, and ability in this culture to the hair.  Wigs, rogaine, toupees....we seek to cover up our loss of power.  Or else we cut our hair as a sign of mourning, as a show of change or harnessing our own destiny.  Britney did it, Miley did it, Samson did it.  When kids lose hair (and lose hair again) it punches us in our gut, because it's such a powerful manifestation of illness.

Anyway.  Amie lost all this hair since Monday.  Each day it was just....gone.  They had said that most likely she would lose some around the incision site, but warned that it could be worse.  Looking at the next three pictures will prove that it's worse.

When her hair is down, you still can't see much as far as hair loss.  Scrunchy face still wins.

Medically, it was a normal week for us.  
  • Amelie continues to move around more comfortably, and needs far less assistance in her movement.  That's a total plus. 
  • We're now 1/2 way done with radiation, and Amie continues to amaze everyone with her ability to cruise through what is nightmarish for some.
  • We've got the lumbar puncture to check for the spread of the cancer <with all that information entails> for Wednesday.
As a final note, we met with the Make-A-Wish people tonight at our place to discuss our views on Amie's trip.  After much thought, much weighing the pros and cons of all the things we'd hope she'd get to do, matched with our fears of complications, we've requested a trip to Hawaii.  

There's a resort there that's specifically tailored towards families, and is owned by Disney.  It's called Aulani, and we're really hoping it falls together.  If Amie has no energy, she can sit in one of our laps and we can enjoy the quiet serenity of the waves on the beach.  If Amie has a massive amount of energy, we can swim all day to our heart's content.  It offers flexibility to us, and instant access to modern hospitals if needed.  Let's hope it falls within what they can offer us...

<edit:  Shelley said that I didn't have anything uplifting in this post, and it was too much, so here's an addendum>

I can't even explain, nor do I have the words to do so, to talk about the generosity of all of you over the last few weeks.  Between the BWW fundraiser, gifts that have found themselves to us in the hands of friends and postal workers, or the fundraiser that Shannon threw last week, it's beyond overwhelming.  (In all seriousness, go give Shannon some business.  She's great, and really got the girls to open up to her!)    So thank you all.  I feel bad that I don't have anything witty, funny, sarcastic, or.....  whatever in me for this post.  I've got nothing for today.  I'll go digging for it tomorrow.

More news after we get the LP back on Wednesday...  Hope all is well with each of you!

Saturday, June 7, 2014

Sto lat, sto lat, Niech żyje, żyje nam

Greetings All!

To get the Amie medical stuff out of the way, we're seeing some serious improvement in her walking since the start of her chemotherapy/radiation regimen.  She's far more tired, sure, but we're seeing a far more stable little girl walking around.  Got to like signs of improvement.

As some of you might know, steroids can often cause facial swelling.  I'm putting this picture here not because it's a good picture, but its a good example of the swelling that we're seeing in Amie's face.  Her "Spider-Man" mask is much much tighter these days.  It hasn't caused a problem yet, but we're hoping that the cessation of the steroids this past week will alleviate the need to create a new mask for her.  Here's for hoping!

Thank you so much for clicking on the ads.  It's making us a tidy sum of money.  Crazy.  
Keep it up, faithful readers!

Anya turned 7 on Friday.  For those of you who weren't around back then, she was born during finals week in 2007, approximately 8 weeks early.  For our 3 lb 5oz preemie, she's doing pretty darned well.  

This is a picture of Anya on her way to school, the last day of being 6.

The girls had gone bowling a while ago, and part of the birthday celebration was to go bowling on Friday.  I am so impressed about their ability to make bowling easier for kids these days.  This easy contraption was the best in getting even Amie to be able to bowl, once the bumpers had been raised that is.

Birthdays are a great time for Shelley's craftiness to emerge.  The special birthday girl gets to have her special birthday chair decoration, underneath her special birthday banner.  Special birthday hats are matched with special birthday cakes (see below).

This is a strawberry ice cream cake made to look like a ladybug.  Shelley cut it before she took a pic, of which she was heartbroken about.  I think it still looks dandy.  Don't you agree?

Allyssa, Amie and Anya (nice alliteration, eh?).  Selfies.

I just have this image of Amie at a car show, in her brand new Tesla Roadster, looking basically the same.

Love, love, love this picture of Anya.  Auntie Beth took it, I monkeyed around with it.

We also took a bunch of wacky pictures.  Of course, being that I'm in this one, it was the best.
I live for my vanity, as you can imagine.  I am frequently voted best dressed, and hottest all around.

Before you click on the video below, be aware that the cuteness meter is about to blow apart.
There is nothing practiced about this video.
This is the way the girls act towards each other when they're both being kind.  It's not constant by any means, but when their moods are aligned, this is normal.

Shelley and I got the chance to see The Fault in Our Stars this afternoon.  If you click through on the name in the previous sentence, it will launch the trailer to the movie.  Give the trailer a watch if you haven't seen it yet.  I'll wait.  :)

The movie was great.  Really enjoyed it, really and truly.

My sister said we might not want to see it, as she wasn't sure that we would be able to handle it with our current mind set.  We took her advice in stride and went to see it anyway.  

Here are some of my thoughts, walking out of the movie. 

  • Firstly, it was sad, but not overwhelmingly so. I can honestly say that in my daily life, no matter how upbeat I might seem on a daily basis, I am profoundly sadder than that movie.  Knowing that, the movie was much easier to absorb than it might otherwise we're living it in a lot of ways.  I might not be Augustus Waters, but I am definitely Mr. Lancaster.
  • I love the book, but I realized watching the movie, I love the book for different reasons than most other people.  I love it in spite of the love story, and not because of it.  Shelley asserted that without the love story, it falls apart, and I agree.  It is the glue of the story.  However, I love the book/movie because it gives me hope.  Yes, my friends, TFIOS gives me hope.  It gives me hope that I can survive this horrible mess.  Cancer is a grenade.  Hazel is totally right.  However, all people do not die from the grenade, and honestly most people don't.  We get hit with shrapnel.  We are the walking wounded.  In our wounded states, we get to decide HOW we react, how we recover, and where we go after the explosion.  It gives me hope that I can survive this, no matter which way it turns out.  
  • As I mentioned in a previous post after I watched X-Men, I loved the Professor X quote about witnessing pain/suffering.  I took the time to look it up this time:  “It’s the greatest gift of all, to bear their pain without breaking. And it’s born from the most human power – hope.” There's a scene in TFIOS where Isaac's girlfriend breaks up with him (not spoiling anything from the movie, it's super early, I swear) because she can't bear to be with him as he goes totally blind.  I think about that, and the previous post about Comfort IN, and Dump OUT.  She was dumping in, and breaking from witnessing his pain.  People often say that Shelley and I are strong, and I guess we are.  But in the end, we're only doing this for Amie and Anya.  We've never been surveyed about whether or not we're interested in bearing this pain.  We just do it because it's necessary, it's required, and it's our lot in life.
  • I want to talk about more...but I won't for a while, because it has mucho spoilers for the movie.  Believe it or not, there are many people who haven't read the book, nor seen the movie.  I'll do that in the future.  :)

Ok y'all.  Time to post this bad boy and let it ride.  Two weeks of radiation are done, and another 4 to go!  Woo!  Now if we could just get the Irinotecan cramping under control....

Friday, June 6, 2014

What words can express....?

Greetings All!

How does a person go about talking about what happened on Wednesday night?

At a macro view for those who aren't on FB and weren't there, hundreds and hundreds of people drove to Ypsilanti, waited an enormous amount of time to get a table, and then waited to get their food.  They did it with patience, they did it with fun and excitement, and they did it to help out my family.

The previous high water mark for events like this was nearly doubled by the event, and it astounded everyone's expectations.

Some lame micro level observations:
  • I was utterly amazed by the sheer number of people who drove out to spend time for the event, from so many different eras of my life.  A former girlfriend from HS, co-workers from my time in television, students who graduated 7 years ago, and a ton of people from this year.  It was a true spectrum of my life.
  • People in Belleville like fried meat.  
  • It was amazing how many students from so many years came out to support Amie.  I must be doing something right, occasionally.  :)
  • When asked, the people of this community show up in force, and it is beyond overwhelming.
I'm going to stop writing, because all my words are feeling horrifically insufficient to the task.  I lack the language to say thank you to the levels that I feel needs to be said.  We cannot possibly express our gratitude and thanks to the level they deserve.  Thank you.

Amie is doing as well as can be, all said.  She's in the process of trying to regulate her GI process, and is moving back towards normal.  I will spare you the details because after the last post, I'm sure I've warn out my poop welcome....and I know I'm going to do another post tomorrow about how it's Anya's birthday today.  That one will have lots of pictures.

Before I talk about this next part, I wanted to put up a disclaimer that there is no one in my life who is currently violating the diagram I'm about to reference.  
I just love the idea.

Lindsay, the friend who posted the John Green picture, posted the above diagram, with the accompanying article from Huffington Post, a few days ago on Facebook.  After reading the article, I thought about how awesome the idea is, and how nice it would be if everyone did this.

Here's the idea in a TL; DR - Comfort In, Dump Out. 

To start off, I'll describe what you see.  At the center of the diagram is the person suffering from an illness/catastrophe/seismic life event.  The circle directly outside of that is the most closest confidant/family member/life participant.  Each next circle is a person a little more removed from the person, all the way out to total strangers at the furthest edges.

When interacting with someone who is further in towards the center, you should never dump negativity, unasked for advice, criticism, whininess, or any other negative behavior.  They are struggling more than you, and you should not add to their burden.

If you feel the need to process what you've witnessed, what you're feeling, what you're dealing dump those feelings out....that is you talk to someone who is more removed from the situation than you are.

If you are interacting with a person inside the circle, you add comfort.  Whether that be a listening ear, a hug, a kind gesture, a whatever. You add comfort into the give what you can, you keep what you have, and dump out what you can't handle.

Putting that into practice, Amelie is at the center of the circle.  Shelley is one step closer than I am.  I try to be a listening ear more than anything else to Shelley, and not offer advice to what she's doing.  She's doing her absolute best to provide for Amelie every minute of every day, excepting when I'm there. My sister and parents are further out of the circle, and my coworkers further out from that.  

With this diagram and idea, we consciously consider our roles in each others lives, and then give to the inner circles what they need to survive/weather the crisis that they live within in their daily lives.

Like I said, not an indictment by any means of anyone's behavior, but something I think is really awesome in guiding behavior towards anyone in a moment of crisis, no matter what that may be.

Another post tomorrow with pictures from Anya's birthday dinner and then birthday party.  But for now, I want to get this one on the road.

One final thing...  I made this picture I'll post at the bottom of my blog from now on as a reminder to click on the ads before you leave.  It's making us a stupid amount of money, and we'd love for that to continue with something so easy to complete on your end.  So thanks again!

Monday, June 2, 2014

Warning! Warning! This is an unauthorized post!

Some of you don’t know this, but I teach 8th grade.  8th graders are the strangest creatures.  They look like mostly formed adults, they talk like mostly formed adults.

However, they are still children.

I’ve only been teaching 8th grade for 2 years now, but I’m starting to believe there is a tangible reason I’m teaching here….  In a lot of ways I’m just as immature as them.

So, ladies and gentlemen, boys and girls, tonight’s blog post is about…. Poop.

Before I begin to sing the praises of pooping (and I shall), I must announce, with sorrow, that Shelley has ordered me NOT to write a blog post about poop, as it is inappropriate, and not to be shared.

I shall now cast aside her concerns and plunge (I fear there may be many puns in here, beware) forward with my tale.

I like to joke about poop.  I like to make random poop comments to students.  I once took a picture of this EPIC blowout when Anya was a kid in which the poop shot up into her armpits and stained her onesie like a Rorschach test blot.

In probably my worst parenting moments, but one I bond with Anya the most in…I try to make her ask for Poopcorn at Target when we stop in to get it afterschool.  She is totally out of her mind with embarrassment, but she wants the popco…er Poopcorn so much that she considers it…but then she reconsiders it because we’re NOT SUPPOSED TO TALK ABOUT POOP. …and that’s kinda the point of this post.

For those of you who are new to the cancer thing….chemotherapy is not kind to the body in many ways, but one of the most dynamic ways for Amelie is that she has massive pooping problems.

She starts out her chemotherapy rounds (each round is roughly a month) with massive constipation.  As of tonight, she was on day #6.

Thought experiment:
  • ·      Go to McDonalds, and buy 3 hamburgers.  The basic ones.
  • ·      Take a bite.  Chew it up.  Don’t swallow.
  • ·      Keep doing this until you have every square inch of your mouth fully extended.
  • ·      DO NOT SWALLOW.

·      This is what Amie’s abdomen looks like.

We use lactulose.  We use miralax.  We use Colace.  We soften. We hurry.  We push it out, push it out, way out.  It doesn’t move.  You don’t want it to get too packed in there, as it could rupture.

But any of you who are still reading (are any of you still reading?), you’re thinking about the balance of power.  The Jedi vs. the Sith.  The Yin and the Yang.  U-M vs. MSU.

If you give too much of the poop interventions, you end up swinging the pendulum back the other way too far, and that’s possibly even worse.  Once the 2nd half of the chemotherapy trick sets in, you’re already going to have that problem.  Accelerate it even more, and you’ve got disaster.  Ya see, the chemotherapy, in addition to the prophylactic antibiotics, wreaks havoc on the balance of bacteria in the GI tract.  You swing from constipation land to diarrheaville.  Not a fun detour.

I was driving home tonight thinking of how absolutely lucky most people are to be as good of poopers as they are.  We DON’T TALK ABOUT POOPING, but it’s one of the most essential parts of our own happiness. Doubt me on that one?  Eat a box of Imodium and call me in a week with a report.

Anyway, I’m starting to lose my amusement for the whole thing, so I’ll share the last few bits of information.

I had a few spare minutes earlier today and made this design. I'm seriously considering designing and selling T-Shirts and Patches for this...

It’s in honor of today.  Today’s the 2nd, #2 in some places.  From now on, when I’ve got to head to the toilet, I’m going to be going in for a 6-2 (todays’ date).  For me, like Kramer with Festivus, I’m creating a national holiday.  National Healthy Pooping Day.

As of a few minutes ago, Amie came out and announced that she’d pooped in her sleep.  (wrap your heads around that one!) She popped out a baseball sized chunk, and there’s probably a ton more where that came from in the days to come.  But she’s far more comfortable, far more able to sleep, and maybe…just maybe…  we’ll get to sleep through the night tonight.

Just a reminder:  For those interested, B-Dubs fundraiser is on Wednesday!