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.