Temporal Reframe

Firstly, sorry for the lapse in blogging.  The marking period is over on Friday and I've been drowning in grading all week.  I haven't worked less than 16 hours a day this week.  Been getting up even earlier just to get stuff done.  Being that I normally wake up at 4:45a, that's scary.  Anyway...sorry.  :)

Shelley made a comment the other week/day/month about patience.  She specifically said that she could wait just about any amount of time, as long as she knew what the exit time was.  She was speaking about getting discharged from the hospital, specifically.  

We had expected to go home around 4pm.  Someone told us we'd be getting out earlier, more like 11-1pm.  We were elated.  Then right around 10:30a something happened that delayed us until about 3:30pm.  We were climbing the walls.  Totally restless.  But we were 30 minutes ahead of time from our original expectations.  Why were we restless?  Because our expectations of the time spent had changed, and we felt cheated.  Looking at it at this distance, it's silly.  In the moment, frustrating.

So yeah, that's roughly how I feel tonight.  There's been a lot of "I can get through the 6 months of Chemo" thoughts in my head, and lots of emails cheering us on now that we're through "2 of the 6 months".  

We'd never really had a "best case" and "worst case" and "what we should expect case" scenario conversation with the oncologists.  We have always just been talking details about the treatments and what to expect regarding that.  We've been making the sausage, and not thinking about how to sell it.

Well.  Shelley had that conversation with the docs, and they gave us the best case....

Best case:

• We do the first 3 cycles of chemo, and then do the MRI in early December to see what things look like in there.
• We do the next 3 cycles of chemo.  These are the "rough" ones.
• They take another MRI.  They track progression and assess.
• They keep doing lower levels of chemo...different stuff, but still chemo, for the next 9 months until she is 3 years old.  (note:  She turned 2 thirteen days ago.)
• They do a series of radiation treatments at 3 years old.
• They do more chemo.
• They do more MRI.  They assess.

That's the best case.  So.  My "get through the 6 months of Chemo" is more like, get through the 18+ months of chemo.

I'm not saying this in any amount of dispair, but to say that I need to radically reframe the way I'm thinking about this....and asking many of you to do the same.

If she survives this, and I really hope she does, it's going to be a long, long time.

On to the pictures!

This is a Play-Doh sculpture that Anya wanted me to share with you.  She liked it alot.

There's a dry erase board in the hospital rooms at Mott.  We saw this after Anya was there the other day, and we asked her what all the little marks were.

She responded, "We're learning about quotation marks in school."  I loved the crap out of this.

I really like this picture.  This is Amelie getting out of the hospital on Sunday.

At first look, you only see Amie.  

2nd look, you see the looming Shelley.  I liked the juxtaposition   

This is a spooky Witch cookie that Anya made with Grammie.

My Aunt Jo sent Hello Kitty plates to the girls a few weeks back.  They haven't eaten off anything else since.  They refuse meals unless they are on them. Woo!

My brother-in-law Noe is in Florida about to do the Ironman race this weekend.  He's training for it this week, braving the remnants of Sandy in the cold and windy Florida panhandle.  Of course, he brings his Amelie wristband to train in style.

Today was Anya's Halloween party at school.  Shelley was able to go, with some juggling and finagling things with Grammie and with Mott.  Anya, of course, was dressed up as Dorothy.

Anya loves to eat desserts.  Yes, she has Adler blood.

Anya, eating more stuff while others play.  I'm including this mainly so that those of you are curious about Anya's school can see it.  It's a swanky place.  We dig it.

Yes, my educator friends...my daughter is in a charter.

Finally, here's an ultra-short video with Amie wishing you a Happy 'ween.  :)

Final words:

• Amelie has been crazy constipated for days, so they couldn't dose her with her upkeep dose of Chemo today.
• They put her on a new anti-constipation drug today that tastes way better...so its easier to get it in her.  She pooped a bunch just before bed.  Yay poop!
• Did you know that Vincristine both causes constipation and hair loss?  That's some awesome stuff!  What a great invention.
• We're back in the clinic on Friday for a blood draw.  They're predicting that she's going to need to be infused with platelets by then.  Platelets very often cause a fever.  A fever immediately sparks an admittance to the hospital.  Fever = 3 days minimum stay in the hospital.

With that being said, I'm taking the day off tomorrow.  We're going to do something together.  Shelley is going to have alone time to recover.  I'm going to have alone time to recover.  We're going to recharge for the likely event that we're in for the weekend. 

Hope all is well with y'all!

Tired. Tired. Tired.

I feel like I haven't blogged in days, months, years....who knows (quote source anyone?).

We got out of the hospital last night, hours and hours later than we'd thought.  I grabbed Anya from Grammies and we got home around 4:30p or so.  Once we got the cars unloaded and everything Tetris'ed back into place it was 6pm, and then started the process to get the kids in bed.  We were both asleep by 8p...on the couch.

Amelie is on IV fluids for 10 hours a night, Neupagen shots in the evenings, 4 types of oral medications and still doesn't really want to eat nor drink anything.

I feel like I'm totally cheating y'all by saying that's all I have tonight, but I'm beyond tired.

I've been actively working for 16.5 hours straight right now, and I'm fried.

We're doing as well as we can be for the moment...

Shel is back to Mott tomorrow for blood draws and another possible infusion.  Same with Friday.

Amelie is at home until the next cycle starts, or she gets sick.

Whee!

Time for bed...Night Night!

Short term vs. long term...

I'm writing this post from Lansing, Michigan.

For those of you who are geography buffs, you'll notice that Ann Arbor and Lansing are not exactly kissing cousins.  You win the prize!

I've been in a really strange headspace for a bit, and got an unexpected invitation to hang out with college friends tonight, and begged Shelley to take advantage of it.

My brain keeps bouncing between short term and long term goals.  I know that in the short term, what I need to do is to keep Amelie and Shelley on the straight and narrow, the supported place that they need to be.  In the long term, I need to keep myself sane, and make sure that I'm sane myself, and that I can keep them strong.

So today, I've kinda focused on me....keeping myself sane.  I went to see a movie, came back to the hospital, and then went up to Lansing for the evening.  The rest of the gang is sitting in the other room watching "VHS" right now....a reported "scary" movie.  I've never really been into them, and don't really get scared by them.  Right now?  My life is pretty much hovering around in a scary movie, so I don't need any more.  K?  K.  :)      <absolutely no regrets for those of you watching it right now>

So where does that leave me?  Eating a slice of pineapple pizza and wishing you all well.  We're climbing up on 50,000 page views, and I once again wanted to thank all of you who are reading my chaotic ramblings for all the attention, prayers, good vibes, gifts, and everything else I haven't mentioned.

We're doing as well as we can, considering...and it's a consistent comfort knowing we can rely on those who have reached out and offered things.  Thanks again, from the bottom of our hearts.  :)

Night!

Hospital, Day 4.

Firstly, an update is needed.  I haven't blogged in about 36 hours...

Amelie isn't eating anything, nor drinking anything...but that fact doesn't seem to bother anyone around here.  She's on constant IV fluids, which contains sugar...so I guess she's ingesting enough basic calories to survive, but I've got to believe that at some point, her not eating is going to become a problem.  I'm surprised someone hasn't marketed this as the new weight loss fad...  New South Cisplatin Diet Plan!  Only $29.99 a month!

Amelie is receiving the last of her chemo drugs at this very second, and will be released sometime tomorrow barring anything crazy from happening.  She's going to be on IV fluids for 10 hours a day at home, so she's leaving the hospital with her port accessed (needle still in), and Shelley is being trained on how to deal with all of that.  Sheesh.  

She'll be back on Wednesday for a blood draw, more chemotherapy, and then possible transfusions after they check out her blood.  Since we're not working towards the stem cell harvest, we have a good chance of staying out of the hospital for a little bit.  We'd like that, even though these people are incredibly nice to us.  :)

On the Anya front, Anya is busy helping Grammie to get ready for fall.  Its time to clean the fairies at the Adler household.  Anya was reported to have been a massive help in that regard.  Yay help!

...and finally, our mystery.  I received this posterboard yesterday at school, but it didn't have a note as to who it was from.  The postmark said New Hampshire, and listed the 6th grader who had made it.  We don't know anyone in New Hampshire.  If you sent this to us, will you take a second and email me to let me know who you are?  I really want to thank you for your incredibly hard work.  :)

We put the posterboard in her crib, as you can see. She spent an hour looking at it last night and seemed to really like it.

I have more to post, but I need to go help them walk.  Walk. Walk! WALK!   Yes, Amelie loves to do laps around the ward.  :)

The Wall of Life.

To start off with something wacky, in direct contrast to last night's morose dirge, here is a picture that Anya took of me.  She loves to take pictures, and especially loves how fast my new iPhone takes pictures.  

I'm not sure what she asked me to do, but I wanted to give her something big.  I responded with my Kung-Fu Spaz style.

This is a left over from two nights ago, and somehow didn't make it to the blog.  Too cute to leave out though.  Enjoy!

This is a pic that posted to Shelley's FB wall tonight, from her co-workers at CMH.  Love the "Wonder Twin Powers Activate!" feel to the picture.

My cousin Jackie's daughter, Karina, who I know is Jackie's daughter but sometimes I get so tired I make really dumb mistakes like saying she's Amy's daughter, donated her hair for Amelie (not directly, but in honor of her) a few weeks ago.  It got lost in the chaos of hospitalization, but I wanted to give her a little shine for what she did.  I loved that she did it, and it made us feel super special.

Beth (my sister) and her daughter Allyssa came up to the hospital tonight, and almost immediately kicked Shelley and I out to take a breather walk.

We walked to the cafeteria, so Shel could get a boughten dessert (Have I described that word, yet?  Not tonight, but I'll do it soon).  We sat outside in the warmth and she ate her pumpkin crapcake, or whatever it was (I'm sure it was good.  I don't care for dessert most of the time as I talked about before).  We went for a nice, long walk afterwards.

While on the walk, we went into the Arb, the Nichols Arboretum that dominates the landscape of NE downtown Ann Arbor.  We came upon this sign within the first few minutes and got a massive kick out of it.  We walked towards the sign and said really nice and supportive things about it.

He was sensitive after all.

We complimented the sign on it's bench, on how colorful it's leaves were in the area.  Then we left quietly.  He is sensitive after all.

We traipsed down to the river, and appreciated the view.  Did our best not to break anything as we were totally not wearing hiking footwear.  Managed to not maim ourselves.  Score!

Shel found an Oak leaf bigger than her face.  I wanted to show you how small her face was, in reference to the leaf.

Big tree.  Foreground. Background.  Photo composition time!

Anya is at Grammie's for the week, and they apparently have some leaves.  Lots of leaves.  Enough to bury lots of humans.  I wonder what else is under there....

We took a few shots at this location, but I think Shelley looks smashing here.  Don't you agree?

Shelley knit Amie a pumpkin hat, so that we could call her pumpkinhead. Amie's still on the fence about wearing the hat, but was up for a bit of fun taking pictures with it on.

A while back, Shelley found a flyer in the family lounge talking about the "wall of life" that they would be assembling in the hallways of the Oncology Peds ward at Mott.  Being the tech guy that I am, I quickly emailed them a picture of Amelie.  I kinda forgot about it.

So I walked in today and found Amelie to be the shining star of their Wall of Life.  She's got her picture, diagnosis and age on it...and a great smile as you can see.  It TOTALLY choked me up, every time I saw it tonight.

If any of you ever end up on the floor, you have to check it out.  We've been told it will be there for around 3 years.  Here's to hoping we won't be hanging around there for that long....

Ok, enough of all of the pictures, a few medical things:

• We were admitted last night for Round 2 of Chemo.  
• Amelie was too dehydrated to start Chemo last night, so they gave her a massive bolus of fluid and started Chemo this morning.
• They're doing Chemo treatments today, tomorrow and Saturday.  They'll also monitor her for 24 hours after the last application.  So we'll be there until at least Sunday afternoon.
• Once they send us home, Amelie will be on IV fluids for 5 days.  We're NOT looking forward to that.  Maybe we can work that into a Halloween costume.  Hmmmm....Super Shelley is on the case.

...and with that, I bid you good night.  I headed home tonight to sleep in my own bed.  Not sure why that rocks so much...but it does.  Night all.

Haunted Halloween?

Shelley and I have “dates” in the hallway outside of Amie’s room whenever we can.  We get a bite to eat, and sit outside her room and talk.  Sometime it’s a quick debrief of the day, sometimes it’s some bit of silliness that Amie did.  But we know that keeping connected in the middle of this is incredibly important, because it would be so easy to drift apart in the middle of this crazy. 

While sitting outside in the hallway tonight, we got to hear a whole different experience of kids at Mott.

Amelie has been tolerating all of this extremely well.  By this, I mean needles and chemotherapy.   She endures endless tubes and chaos and new stuff constantly.  She’s been great, and the nurses and doctors, social workers and child life employees are constantly telling us so.

So the girl in the next room over was (and please pardon my language) utterly and completely losing her shit tonight.  Screaming.  Moaning. Yelling.  Kicking and biting and hitting.  (We know this because we could hear the nurses sternly telling her that she could not bite them, nor hit them, nor kick them)  She was doing this for a long time.  20 minutes?

At one point, an alarm went off, an a stream of nurses rushed into her room….and then it kept going on and on and on.  She was at a point of misery and despair and pain and utter and complete DONE that I’ve never experienced before. 

It’s just sitting on my soul right now, and gave me another silver lining.  I’ve been looking for them, over and over through this process, as has my sister. When we talk on the phone, she’s always trying to spin things into a positive when she hears the retelling of the day’s events. 

So, knowing that both Anya and Amelie are handling things so well, and knowing that if you talk her through verbally whatever you are going to do, she’ll be an amazing shining star with it.  She cries for a bit, don’t get me wrong… but she’s able to be comforted, and gets past it.

Grace, the girl next to Amie tonight, was beyond consolation.  Beyond tolerance.  She was utterly done with each and every bit of everything that was happening to her.

On some level, it reminded me of several of my students.  They see school as something that is happening to them.  They do no work, they actively perseverate on utterly annoying behaviors to drive me crazy…. because they want to disrupt the process.  They want “school” to stop.  They don’t care about the consequences, because they win no matter what.  They are already in their own worst punishment; they’re forced to come to school.  Grace was in hers…but it was far more full of actual and real physical pain.

As I was walking out for the night, knowing Shelley would be sleeping within the half hour and Amie was far into sleep already, I stopped to talk to Grace’s grandfather outside her room.  He was taking a breather.  I said to him that I hoped his night got better, and that I hoped that she (grace) found some peace with the process.  He said that this was every single time she was admitted.  He stated that she was always sorrowful at the end of the screaming, but that it was always the same….each time she came here. 

I feel for her.  I feel for the nurses.  I feel for the grandfather.  Man.  That’s some seriously rough shit to have to bear witness to. 

Haunted Halloween?  Yes.  Tonight I am haunted.

PICTURES! TONS! BRAINS!

Took another night off of the blog last night so that I could spend 2 hours on the phone calling parents....parents of students who are failing badly.  

Yes, I had enough to take me more than 2 hours.....from just 1st and 2nd hour.  

That was fun. 

Tomorrow we're heading back to the hospital, as we're going to start Chemo:  Round 2.  

I wish that was as fun as going to see Rambo 2, or Lord of the Rings part 2, or even RoboCop 2.  

Nope.  None of those.

Amelie loves cats.  As shown by the overwhelming generosity of the presents that y'all showed me, you know that.  Grammie, however, wanted to take a step up and make Amie look gorgeous and showcase her love of cats.  So she made this dress for her.  It's awesome, don't you agree?

Anya had told me to make sure I came straight home from work today, as they had a special dinner planned for me.  I came in and it was decorated extra "spooky".  I use this word because Amelie kept saying "spooky" to me, as well as "surprise" and  "brains".

I love post-apocalyptic fiction.  LOVE IT.  Walking Dead?  Yep.  Charlie Higson and James Maberry zombie books?  WOo!  Comix, TV shows, movies, books.  Give me more.  Shelley of course knows this, and so does Anya.  They made me brain brownies.  Yes, I have an awesome wife.

They also bought me a fake brain, possibly to lure off the zombies in case the invasion starts tomorrow. I'm really hoping it doesn't though.  That would suck.

Anya was ready for me to return from work. 

 As you can see, she is loving up her Hello Kitty as she waits.

Amelie is rarely still.  She is a girl who moved.  Note how clean she is.  Bath times are good stuff.

Grammie didn't rest with the dress, but made a bib too.  

Shelley made skull ice cubes.  Yes, she went the whole way with dinner tonight.  SPOOKY!

Shelley has embraced the goodness that is Google Docs.  I love it.

For those of you in the medical field, here are Amelie's blood numbers since we started.  She's doing good, eh?

And now for the coup de gras....

It thought this video was Uh-May-Zing.  I hope you do to.  Night.

Takin' Care of Bizznezzz...

Yesterday we did very little to note.  We slept.  We ate.  We played.  We crafted.  We slept some more.

It was delightful.  I graded nothing.  I planned nothing.  I played some video games when everyone else passed out.  Whee!

Today?  It was back in the swing of things, with laundry, lesson planning, cooking, cleaning, and all the rest of the real world stuff that gets chucked to the wayside when things get hairy.  

However, Amelie got her appetite back with a vengeance this weekend.  She's been eating like crazy.  She ate several helpings of the pasta that I cook for her, and then ate more after that.  Plus Juice.  Plus, Plus.  Loving seeing her eating again.

On the other side, her hair is still going, going..and will soon be gone.  Such is life, right?  

First, a few housekeeping things:

A few great friends that I work with that apparently think I'm a decent human being got together and bought us a canvas print of the picture that I was raving about way back in the first week of this whole adventure.  They used a service called PhotoWow that changes the print into a hyper-real version of the original print.  

We finally got it hung up with the lull in things...

With Amelie's b-day in the hospital, we got a lot of balloons for her.  She loved the crap out of them.

Even though it was Amelie's birthday that scored her this balloon, this one was quickly scooped up by Anya, and it was "hers" from then on.

The hospital has really nice cakes for birthdays!  They sent 3 small cakes, and they were actually quite good....and I hate cake!  I took a single bite to test if they were as awful as I thought.  It was completely tolerable, and that's a huge compliment from the Dude who doesn't like cake.  I also don't like hot fruit. I'm a weirdo.  The Adler family ate dessert every night of their lives.  Strzalkowski's (at least our branch), never had dessert.  <Throwing the Mom under the BUS!>  It's a rare day when I care about dessert.

As I've said several times before, Anya is LOVING the medical play that she was introduced to.  Shel keeps.....acquiring new stuff at the hospital.  Things that they end up not using and are going to toss in the trash...or already have.  <Throwing the wife under the bus!>

I came up on Anya getting ready for Amelie's next "surgery".

Amelie was ready to have her experiments start again...with the proper pillows for her head, of course.  This girl loves pillows now.  Before this started, she'd never had a pillow.  Shel is super concerned with safety, and all that.  So she goes into the hospital, and BOOM...pillows everwhere in the hospital.  Of course, if your head was recently cut open in back, you'd probably want a little bit of cushion everywhere too.  So we're alright with it now.  

I made this picture extra small, for those of you who are a bit squeamish.  I've had inquiries from those who wanted to see how her incision is healing.  The top part, which was always much wider and scarier looking, is still scabbed over. 

The bottom part (and the top of the head) incisions are completely healed. 

For those who want to know about our medical itinerary for the week:

• Shel has a blood draw in Ann Arbor to check her blood counts.  If they are holding their own post hospitalization and post-Neupagen.
• She then has physical therapy in Ann Arbor as well.
• Wednesday will be start of Chemo:  Round 2, if her blood counts are holding up.
• If that's the case, we'll be hospitalized for Wednesday - Saturday again, for the chemo applications.  
• If not, they'll give her a week to heal up and then start it next Wednesday.

Time for me to sign off, and finish up my work stuff for the night.  Hope all is well for all of you.  :)

I am now 4d.

So I'm 40 now.  I think I'm supposed to care, or worry about that.  I think it's supposed to shiver me to me timbers, at least if I was a pirate.

I'm not.  In the least.  Is that ok?

No one did anything special for me today.  I'm kinda glad, and not sad at all.  I had a few really nice cards, especially the big Hello Kitty card from Hunwick that rocked.  It made me laugh.  

That's not to say that I didn't get some really heartfelt "Happy Birthdays", or a slew of Facebook messages.... I did.  But there was nothing traditionally magical.  No presents that I would never have expected, no massive gatherings and shots and toasts.

I think the fact that I'm so unshaken, and so totally OK with all of the above is yet another notch in the whole growing up thing.  We train ourselves, our friends, our kids to totally expect something extraordinarily special for our birthdays.  I know people who expect entire birthday weeks or birthday weekends...and they're well into adulthood.

But I feel like I've totally stepped back into the shadows of my life, and allowed others to take center stage, where they need to be.  Amelie is the star.  She's holding center stage.  We're the supporting actors.

More on that thought in a bit, and a timeline of today for it to make sense.

I worked, and then bolted to the hospital.  I carried at least 200 lbs of crapola to the car, and then got all the balloons into it as well (Thanks White Family and Berntsen Family!!)  Loaded Amelie into the car (got no love here in this picture at all).

We picked up Shelley's car from the dealership, and she headed home with Amelie.  I went to pick up Anya from the Adlers.  I got home, we unloaded the 200 lbs of gear, and started laundry.  Cleaned up everything, Tetris'ed it all back into place (yes, that's a verb around our place.) and had some food.

Amelie went to sleep first, and then we all loaded onto the couch to catch up on Project Runway.  We let Anya stay up to watch "The Sewing Show" with us, because we knew she needed some extra attention.  Of course both girls fell asleep almost immediately once the popcorn ran out, and I was left awake by 8:30p.

I moved Amelie into the bedroom (she falls asleep in our room in the pack and play), then moved Anya and finally Shelley.

So, that's where I sit right now....awake  and blogging at the end of a long day in which I "served" others....and I'm totally alright with that.

I think the birthday gift that I needed, that we all needed, was a few days at home sleeping in our own beds.  I've got all the girls home, and they're all ready to go crazy with crafts tomorrow...and that's a great gift to get on my 40th.  Right?

Have a good night all.

Quick Update...

Since people have been inquiring via text and the lot....

We heard back from the Bone Marrow Clinic (the people who oversee the Stem Cell harvesting).

They were hoping to get 15 million cells from their harvest, and they got 70 million cells from the harvest.

What's that mean for Amelie?

• This is the only time she'll need to do that procedure.**
• They have enough for cycles 4, 5, and 6 of Chemo...and then an extra just in case.
• We no longer need to give her a shot each night.
• She'll be getting the port out of her groin in the morning.
• She gets to go home tomorrow at some point.  Most likely after school because Shelley's car is in the shop on the far side of Ann Arbor.

So yeah, we're doing smashingly well over here in Mott. 

Happy Birthday, indeed.

Birthday Stuff...Part 1.

In case you haven't picked this up yet, Amelie is a charmer.  She endears herself to all the staff here like it's her job.  Today has been yet another series of times that Amie charmed the pants off of those who took care of her.

But I am at the end.  I need to rewind to the beginning.

I slept here last night, and it was a great...GREAT night.  We were largely left alone, and everyone got to sleep tons.  Amelie probably had...  9 hours of sleep last night.  That's awesome.

She woke up, and was in a great mood.  In the picture below, you can see her wearing the birthday hat that Shelley knit a while ago.  Amelie isn't very fond of it, right now, but she tolerated it enough for the picture.

Amelie came out of anesthesia from the port with no problems at all.  None.  So maybe last time was a fluke.  We'd like to hope so.  It was great...even if she looks like she spent the night out drinking Bourbon because of all the fluids they're pumping into her.

When we came to get her, we didn't see Baby Jumping, so of course we were worried.  Maybe she jumped too far this time?  But they wrapped her up special and put her under the blanket. Even better, they popped her head out the hole...because babies need air to breathe...right?

This is the machine they use for the Stem Cell harvesting.  It's the first thing we've seen here that doesn't look brand new.  But that makes sense because they took us all the way to the other side of the hospital for the procedure...just past the cafeteria.  It was a hike.  The machine looks like something that was sitting in Vault 13, for those of you who are down with my references.

I absolutely loved seeing a stack of Biohazard buckets.  I love the idea that they are so hardcore in the Apheresis clinic that they use buckets instead of Sharps bins.  They go hard in the paint.

We got back to the room and found this wonderful arrangement of homemade cupcakes.  The Doctor (her name is Emily) baked them herself, and they really are home baked.  None of that boughten desert for our daughter's birthday.  Yeah!  :)

They also made her a card, and it was really cool....even though Shelley insists that we spell "Amie" with an "ie" instead of an "i".  She has some nightmarish associations, apparently, with the other spelling. 

There's more to talk about, and more to write about...but we're waiting to see what the results of the harvesting turn out to be to talk more.  Woo!