"You never know. Sometimes these little ones can really surprise you"

Those were the words of our Pediatric Oncologist tonight, when we mentioned that we'd successfully made it through the easiest of the 6 chemo rounds.  She replied that, "You never know.  Sometimes these little ones can really surprise you."  So those are our hopeful words of the moment.

We totally realize that it could go much longer, but owning the idea of 6 makes it seem able to be defeated.  We like 6 as a number.  Dice.  Months in half a year.  Half a dozen.  Half an hour.

So, a funny story about Shel before I go into photo extravaganza.  Shelley (and her family) locks everything.   They lock car doors, house doors, screen doors...  they think about locking, and worry about locking, and recheck the locks.  They're not dysfunctional or OCD about it, but they lock things.
I do not lock things, even when I lived in Flint.  I figure that people might need my crap more than I need it, and if so, they can have it.  ...and at least I won't have a broken window that way.  I frustrate Shelley with my lack of locking.

With all that being said, Shelley left her freaking window wide open in the parking ramp for almost 3 days straight.  She just didn't think about it.  Wide open, GPS device was still there, and nothing missing.  I imagine it's just not something that happens there...or at least not that much.  She was horribly embarrassed when I told her.  :)   Ahhh, stress.

Yesterday, Anya came up to the hospital. 

We both like playing crazy picture games...  with our crazy faces.

But we can also be sweet and do traditional FB self-portraits.

 Yes, A Strzalkowski does live here...

....and you best step off if you're not ready with baby.  She matters more than you could imagine.

They do a lot of medical play at Mott.  It's cool stuff to see how much the kids love it.

...and finally we checked out, and headed home.

More than anyone else, Amie was ready.

More tomorrow...so tired I've got double vision.  Wish it was for other reasons.  

Unhinged....in a good way.

We have a good friend who is from India.

She is a former professor of mine, and Shelley and I have kept in touch with her over the years.  We've had multiple dinners, lunches, picnics, and all sorts of times where we've gotten together, had great conversations, and shared good food.

In case any of you don't know this already, Shel has a massive affinity for all things Indian.

Whether it be food (Neehees, Curry on Crust, Shalimar, etc. etc) or the clothes or the spices or the movies or whatever...  she just loves the culture of India.  That predates me for sure.

Our friend offered to make us dinner once a week, and make us Indian food at that.  Shelley was beyond excited by this offer.

So tonight was the night that she wanted to bring the dinner up to us at the hospital.

It had been a semi-rough day for lots of reasons, and almost none of them medical.  Information, over-stim, visits, lack of sleep, chemo discomfort, and more.

We got Amelie to lay down and Shelley and I sat outside our room for a moment of silence and connection.  Iman walked into the hospital almost on cue at that point.

Amelie was out cold.  The food was hot.  The conversation was great.  The food was AMAZING (even the cauliflower which I usually detest).  The length and breadth of talking about things that WERE NOT ILLNESS AND CANCER was so beyond great.

It was rejuvenating, and amazing, and necessary.  Did I mention wonderful?  That too.

Tonight is the last night of the cycle of Chemo, and I'm crashing at a friend's house again in Belleville.  I have a 5 minute drive to work in the morning.  Oh. My.

Night all.

Day three of Chemo.... Happy kid?

Things have gone really well thus far with Chemo.

I stayed last night, and she recieved her three doses of Chemo at 9p, 10p and 11p.

They hung them all on the IV stand and pumped them in through her port.  She slept through all of them.  

The tech kept coming in and waking her up to do vitals, which are the things she hates the most.  Blood Pressure cuff annoys the crap out of her.  The pulse ox lead makes her cry most times.  So yeah, pump her full of poison?  Nothing.  Attach something to her body that she sees?  Loses it.

Who knows.

Anyway, the dietician came around today and gave us some guidance regarding Amelie and what she eats over the next 6 months.  They want her eating 1.5x the calories and 1.5x the protein at all times.  They gave us incredible suggestions, and things like "Add heavy whipping cream to a smoothie.  Use ice cream too!".  It's pretty much the ideal diet for most kids.  Cookies?  Sure!  How about 2!

Amelie really likes the whole cookies at every meal thing.  Luckily, I was at Whole Foods last night (Yo Kyle and Linnie) and bought her some cookies.  Yes, they're boughten, but she seemed to like them.

Now, for my first complaint about this place.  They don't have high chairs.  

When we were first here three weeks ago, they found one "in the garage", wherever that is, but it took two days for them to get it after we requested it.  We've been waiting on it again for two DAYS.  So I make sure Shel and Amie were good, and then I drove to freaking IKEA and bought a cheap plastic high chair.

I totally don't understand how you can have an entire wing of rooms for kids, and not have at least one high chair on every floor...  Really?  I know that most of the peds kids here are older than our little girl, but what the heck...does everyone just eat in bed and live in their food?

Our little girl is so out of sorts when we give her food in bed.  We would NEVER do that at home.  The kids eat at the table, and nowhere else....and now we're giving her pudding in bed?  Really?

Anyway, we have one now and that is solved.  It breaks down in 30 seconds, and I can carry it back out to the car for next time.  Whatever.

One last thing...  This post should push me past 30,000 page views for the blog.  I cannot even possibly understand that number.  Unless there's one of you sitting there pressing refresh a 1,000 times a day, we're humbled by those of you keeping up with Amie's (unwanted) adventures.  Thanks for that support, it really means the world to us.

Sleeping like a baby...

Amelie is snoring away across the room, out cold for the past two hours.

To quote Hazel from "The Fault in Our Stars" by John Green, "Sleep Fights Cancer!"  Although the manner I just delivered that in my own head was a lot more energetic and positive than the sarcasm that was dripping from Hazel most of the time when she uttered that.

I only got to talk to Shel for a bit, as I took over and she got ready to leave.  Amelie was really demanding our attention, which always makes it hard to focus, remember and attend to the other person's desires at the same time.  I say all of that because the information I might have to relay is highly suspect due to sleep deprivation, stress, and overall fatigue.

With that being said, we're receiving 3 more doses of chemo tonight.  9pm, 10pm and 11pm.

Hoping she can sleep through all of that and sleep the rest of the night.  They might give her an ativan to preempt any nausea, like she had last night.  I told them to do whatever they thought best.  I'm sure not the one who spent years studying anatomy and pharmacology.

We haven't been showcasing much of the artwork that we've been receiving lately because things have been just so overwhelming.  However, I received these two today, both from former students, and wanted to do a little bit of thanking and bragging.

Not sure why I loved the crap out of this so much, but the idea of Dylan drawing Amelie walking down her "road to recovery", holding hands with a cat, and wearing a MSU shirt just really connected to me.  With so much uncertainty about her future, including whether or not she'll have one at all, it really just hit me how much there was in this picture....and I loved the leaves all over the place because, having spent so many years in East Lansing, I know how awesome fall can be in that town.

The other picture came from a long, long way away.  In 2010, I had an exchange student named Kaisa, from Finland.  I had previously had her sister Emma in 2007.  They were both utterly amazing students, ultra-kind people, and the kind of person you just wanted to keep in touch with for a very long time.  As with most sisters, she and her sister had a lot of similarities, but some very drastic differences as well....all good of course.

I'd previously learned of Kaisa's art skills when she drew me a pickle waving a Finnish flag (a heckuva great April Fools Day prank, if I say so myself), and now I get to see her rendition of a kittens playing in a field.  I showed it to Amelie and she just gushed over it.

Chemo's here...got to go!

A Job Description for Parents?

I was talking to someone today, and I mentioned that getting puked on is probably part of an official job description for parents.

I sure haven't seen that job description, and the powers that be probably wouldn't ever want to have that job description written down, because then it would be a legal document that would be able to be argued in court.  Not to mention the crappy parents who would use it to say "I don't have to do that, it doesn't say it on here".

Nonetheless, a virtual and imaginary job description would definitely have "getting puked on" as part of it.

I say all of this because Shelley has a massive and major problem with puke.  She's had 3 pregnancies in her life, and I don't believe she's ever puked once during all of them.  She has this ability to think herself off the ledge of puking.  Breathe. Deep. Breathe.Deep.

(Edit.  Shelley said that she puked at least 10x during the 3 pregnancies.  She never told me though, as that must have been quite traumatic for her to hide that from me.)

Last night they gave Amelie the first dose of Chemo, but it happened after I left the hospital.  In a bout of total graciousness, they do it through the port/IV contraption, and avoid having to wake her up while she was sleeping.  Woo technology!

But she did wake up several times over the night, suffering from the poison that is chemo (poison that you are glad that exists, however) and asked to be rocked.  Shelley of course did so.  Amelie then puked all over Shelley.  Shelley took a deep breath (mouth away from puke of course) and took it in stride.  There's a whole lot of "growth moments" for all of us these days.

I think they will dump approximately 3 buckets of chemo into Amelie today, and then again tomorrow. Following that, they'll monitor her fluids for a day, making sure she's handling the chemo which has one part that is totally dehydrating.  Once they believe she's as OK as she's going to get, they'll release her out.  Most likely Friday night/Saturday morning.

We asked about hair loss, and they said it will start in the next two weeks.  So it looks like we're going to have a pale, sick, bald, sutured-head little kid for Halloween!  Shelley, being the saver and frugal deal master that she is can definitely work with that.  No extra charges for makeup to go as Baby Frankenstein!

Ok, enough completely wrong morbid humor for today.

I'm writing all of this on my prep at school, because I haven't seen them today.  Thus, no pictures.

I'm taking tomorrow off work to help out.  More later...  prep is almost over.  :)

Chemo starts today! 6:34p.... No chemo yet!

I'm sure that the gentle art of patience will come more easily to me after a while. Really.  Right now?  Seething annoyance...

But as of right now, Shel's been in the hospital since 11am, didn't get into room until 3pm, and we still haven't gotten the chemo treatment.

We heard from nurse that there was a bunch official hoops she had to run though, with blood tests. She passed all those tests, and she's on track to start tonight. Around 8p.

PThe first thing is Vincristine. Wicked stuff, but apparently it gets delivered in 5 minutes. Cisplatin takes 6 hours.

Anyway, she's now hooked up w her port and getting all her liquids shot in that way. It's curiously cool.

Shel asked them to see a pre-implanted port, so they brought us one.

I used my "good" thumbnail to offer context.  My "bad" nail looks like an angry raccoon gnawed on it for a few hours and I didn't want to upset my internet constituency.

So that's implanted directly in the middle of her chest.  I haven't taken a picture of it yet, as it was covered with a bandage until last night.  If I can get a shot of it, I will...for posterity and those who wish to wallow in the gross-out stuff.

Also, her sutures in her head seem to be dissolving.  What a strange thing to see them one day, not look for a few days, and see a wound that's all closed up and no sutures.  It's MAGIC!  I love that someone is using their magical noodley appendages on the back of my daughter's head.  I'd like teleportation if anyone is handing out spells.  Although I don't want the lame 5th level one, but without error at 7th.

More geek humor.  Check back tomorrow for more of it!

I forgot to go to a staff meeting today.  Oops.  That wasn't good.  But it was honest, and I didn't ditch.  I am just a bit...preoccupied.  Ya know?

Looking for Escapism...

No news on in this post, or at least not much.

Shelley and Amelie are on their way to the hospital right now (literally as I type this) to be admitted and start chemo.

Most likely we'll be there until Saturday morning or so.  We'll see how that goes.

Last night we got the girls into bed, and then I went out to the movies.  For those of you who know me well, you know that I love movies.  They are to me as sports are to most men.  The idea that there are great movies out there in the theaters that I haven't seen is....painful to me.  It drives me to distraction.

So I went out to go see 'Looper' last night, from a director I really enjoy.  His previous movie, Brick (available for free on Netflix!) was FANTASTIC...and such a surprise.  It's one of those movies that is so different, so shocking in how it presents itself that you just have to see more from that director.  Much like reading a John Green book for me, I just want to consume their work.

I expected Looper to be escapist fiction...it had time travel theme, and a large amount of action.  However, it took this massive turn in the 2nd act into a wholly different movie.  I did not expect where it went at all.

Before I talk more about it (and I promise not to spoil anything, as that is sacrilege), I loved the movie.

However, the primary theme in the last act (for me) was "What would you do to protect those you love?"  ....and of course, the answer is anything.  Anything.  ANYTHING.

I jumped through a portal from my life and ended up in....my life?

I was not ready for the movie, the theme, nor the ending.  I was a mess.  Good movie though.

Cameron, my good friend in New Zealand, did a great job of processing my angst and giving it form and function...and I'm here today with some sort of smile.

Amelie starts chemo today...  and here we go.