No updates until later...

...I'm at work today.

I have no idea how Shel is functioning. She slept way,way less than I did.

I know we're due for some medical developments, so stay tuned.

Emily and Tina White made this awesome blanket for Amie. Gah-Gah!!

Thx all. The support is amazing.

A rambling, sleep deprived post...

I've tried to get some sleep, and there's just too many interruptions in the hospital room to get anything more than a few minutes, and then I'm just wired from being jolted out of sleep from some alarm or Amelie crying.

So instead, I'll do a rambling post about today.

This is my favorite picture I've ever taken of the girls.  Ever.  I could sit and write for at least an hour about why I love this picture.  Most of all, the reason I love it is the overwhelming personality that is shooting out of it.

My sister once said to me, "Jason, what is so wrong with being normal?" I've never really wanted to be normal.  I'm not saying I always strive to be different in all situations, but I do enjoy stepping outside the boundaries of what is expected, what is asked of me, and decide for myself what I think is best for that situation.  In some cases, this has been disastrous for me, and in others it has been an overwhelming success.

So I think more than anything else, when I see this picture, I think of my two girls as Adventurers, as Scouts on the hunt for something special.  A desire to find the unique, the spunky, the different.

Today, I saw Amie make the same face she's making here....at me.  It was our special scrunchy face smile that she started doing towards me, and it took a good bit of effort for her to do today.  But she did it, and it was perfect.  Just perfect.

Another thing I'm thinking about tonight is a Buddhist ideal....  When I first was introduced to the core concepts of Buddhism in a course at EMU, I chafed at the idea that to be Buddhist was to embrace the idea that "Life is Suffering".  I even totally offended a girl on a date once by challenging her Buddhist beliefs in that vein. (I do not identify as a Buddhist, but I do sure appreciate many of their concepts...I felt like I needed to say that at this point in my rambling.)

However, I came to this idea a while ago that if you can embrace the idea that life is suffering, that everything is temporary, that all things will disappear no matter how hard you struggle against life....you can truly appreciate what you have at that moment.  That's a thought that I really tried to embrace today.

Amelie is a mess.  We can all agree to that.  But once you look past that, she's this little girl who is scoffing at all this mess and pain and blood and her "hat", and just wanted to be close to her mom and dad and sister and start being herself again.

I could easily fall into a pattern where I was channeling all these negative emotions, railing against how absolutely freaking unfair it is that we've had medical emergency after medical emergency with the kids for the last 6 years....  or I can slow down. Breathe.  ....and enjoy what I've got.

I've got Amelie being a chatterbox and telling everyone "Hi" and "bye", and having her waving and blowing kisses.  I can sing her the same songs over and over and over and over and over that bring her solace and relaxation...helping her fall asleep.

So yeah, I'm doing my bit to embrace a little bit of Siddhartha's enlightenment here at 11:40pm, hoping Shelley is powering up while she sleeps and she has a little bit more energy when comes on shift after midnight.

Good night everyone.  I'm out.  Going to go kiss her hand, and sing one more round.

Celebrity Encounter!

Amelie got out of her bed today, and laid for many hours in our arms.  She LOVED it, although she really didn't like the back and forth a bit.  Got to endure a little pain to get to the pleasure, right?

Shel was first up, and listened to a book (The Fault of Our Stars) while Amelie slept in her arms.

Later on, Shel found a Hello Kitty tile, and of course for Ms. Anya we had to take a picture of it.

Amelie was sleeping on my lap and I was all alone...so here's a terrible picture of me, but one in which you can see Amie clearly, and see the glorious bow on her head.  Ed Strzalkowski would be proud.

Shelley asked Amelie if she wanted to find a bow to put on her "hat", and she said "DOW", and then pointed at the bow that was on the present that was delivered to our room today.  It's been on her head for the last 5 hours now, and she keeps patting her head and saying "Bow" "Hat".  She's already getting high maintenance and she's not even 2.  Sheesh!

Another small story to end the post... I was in the Ronald McDonald House folding the laundry we had just washed and a group of obviously well dressed people walked in, on a tour.  A woman walked asked me if I was enjoying the accomodations at the Ronald McDonald House.  I replied that it was the thing that was keeping us put together, because the ability to walk less than 2 minutes and be able to get good sleep for a bit was the single biggest reason we were still sane in the midst of this craziness (I'm making myself seem way, way more eloquent than whatever I pulled out of my...ear).

She asked me a few more questions, and I replied appreciatively.  The tour moved on.

I later learned that the person talking to me was Mary Sue Coleman, the President of the University of Michigan.  Woo.  I rub shoulders with all the best people around here.  You all should really adore me more.

Ok, enough of that.  Time to figure out what the heck I'm teaching tomorrow while Shelley is feeding Amelie.

Positive examples...

A former student, who shall remain nameless, (Jennifer Overholt, cough) messaged me the other day to let me know that her hockey loving and dance abandoning boyfriend has a brother who was also diagnosed with the exact same tumor at the exact same age.

She asked if we'd like to be in contact with them, and we of course said yes.

They went through the extra level of graciousness to come up to see us at the U instead of just exchanging emails.

They came up today and we had a really nice conversation about what they went through, what we can expect and how bad/good it would be.

Even better, they dragged the 15 year old shining example along...with his "stab wound" scar (there's no street cred for brain cancer apparently). It's been 13 years since he was diagnosed and he's doing great.

They also had the same doctor for the chemo, and glowed about her. That's the doc well be meeting tomorrow....or at least Shelley will.

Anyway, the meeting was great. Gave us some concrete hope and faith beyond the statistical gloom and doom we've read about. Great people helping out because that's what you should do.

Be the change you wish to see in the world...right Mr. Gandhi?

Shel and Amelie are asleep, and I'm thinking about doing the same for a bit.

Thanks again for all the support.

A lot of you have asked what you can do and I thought of an idea. Amelie LOVES cats. Lots of you are either artists or have kids who love to draw. If anyone wants to draw pics of cats or something like that, you can mail them to my school and I'll get them on a daily basis to decorate her room.

If interested:

Jason Strzalkowski
McBride Middle School
47097 Mcbride Ave.
Belleville mi 48111

I'll take pix of anything we get and post them.

Ok, thanks all...I'm out of words for a bit

Here's what we are hearing from the Doctors (all 1231234123123 of them)

• Amelie is recovering extra well from the surgery, and is completely where they want her to be post-surgery.
• She's gone from about 9 things attached to her down to 3.  Her ICP (insane clown posse? NO!  Inter-cranial pressure!) valve, her EKG leads, and her left hand IV.
• They are discussing removing her IV within the next day or so, because she's eating buckets of food (see previous post) and drinking as much as we'll give her (water and juice...the occasional Red Bull).
• They are going to clamp her ICP valve tomorrow, and remove it tomorrow night, if everything stays on track. 
• If those two things happen, she'll only have her EKG leads on..and I'm imagining those will go soon after.
• Once the ICP valve leaves, then we're going to get kicked off the PICU floor....because she's no longer in need of intensive care. Woo!
• We're scheduled to meet with Dr. Robertson tomorrow, who is the specialist for Chemotherapy.
• I will not be there, because I need to go to work.  Chanda (Shel's best friend since Kindergarten) is going to be with her all day.

So there's lots of good stuff going on, and it is bright and sunny outside.  Allyssa and Beth are coming here today and bringing us lunch for us to go eat outside while they visit with Amelie.

I'll take more pictures to share later on.

...and thanks a ton for all the messages of love and support that people have been shooting our way.  It's appreciated a ton.

Long night, bright and cheery morning....

Greetings All!

It's a bright and cheery sunday morning, and things are going exceedingly well.

Last night was a mostly sleepless night for Amelie, however, and she was a bit of a restless wee lass.  She lost several cords off her mass, which was a huge plus though.

Around midnight or so, she ripped out her auxiliary IV line out of her right hand.  Most of you probably don't know her overall loathing for bandaids, so we were very surprised at her tolerance of all the tape on her body.  Well, I think it wasn't tolerance, it was exhaustion and a lack of the ability to move to do anything about it.

Last night she ripped it out, and it took her less than a second.  Blood everywhere, but she wasn't phased.  We cleaned her up, and the docs said...who cares.  She's got the other one.  One tube down!

Then we noticed, while cleaning her up, that she had wet the bed and her foley catheter had leaked like mad.  We changed her, and then it happened again.  Another changing.  (the entire bed needs to be chucked in these situations).  Asked the doctor about the catheter, and BOOM...that's gone too.

The first picture for today is a shout out to the Kowalewski Family out in Portland, OR.  They both were in the architecture program at U-M, and we can clearly see the Architecture complex from our hospital window.

Next, a video of Amelie eating her first meal since the surgery.

She'd been on lockdown since before the surgery, and hadn't eaten anything at all since Thursday evening.  We asked her if she wanted to eat food and she responded with a hearty yes.  Actually what she says when she wants to say yes is "DOW", which has evolved from Da a few months ago.

So we ordered up a huge variety of food to see what she would want, and here's what she ate:

• Nutri-Grain Raspberry Cereal Bar
• 1/2 of a blueberry muffin
• 1/2 of a Dannon raspberry yogurt
• 1/2 cup of Oatmeal
• handful of Goldfish crackers
• Several buckets of water

That's a sizable meal for that little girl!

Most of you will notice the shaking as she brings the food to her mouth.  This is the legacy of the surgery, as the cerebellum was the location of the tumor.  The muscle memory of actions is built there, so she needs to retrain her brain to do those seamless things like moving food from a plate to her mouth.

From what we've been told over and over, its a good thing this was cerebellum, because it's a very resilient part of the brain that's good at re-routing processes.

I'll do the outlook for the next week as a separate post.

Long, Long Day...

It was a long, long day.  Lots of visitors to the hospital, I ran home to Howell to get Shelley some yarn for knitting, and big sister Anya came up for a visit.  More on all that in a second, first....fun stuff.

First up, can any of you NOT see the dog in this picture?

Shelley spotted the picture and I can't not see it.  The two blue knobs are the eyes, if you don't see it.

Next, we haven't showcased our medical good luck charm, Senor Ice Bat.  Fresh from his vacation in the Himalayas, where he was looking for his friend the Yeti.  For those who've been with my blogging since the beginning (2007, oh yeah!), you'll remember Ice bat.

Grampa Adler came down with Grammie and Anya, and showed some special love with Amelie.

Anya had a great time playing with Amie.  Her face is starting to unswell slowly but surely.

So there ya go.  Lots of love was shared, and Amelie was a tired, tired, tired little girl when it was done.

Not much else to say about today, really.  Since the news was released to FB, we've gotten flooded with love and support from all the people who have known us over the years. 

We debated for a few days about wanting it up on FB, as we didn't want it to be overwhelming.  But we decided in the end that people knowing and sending out their best wishes (in all the ways that can happen) was a net positive across the board.

Thanks again, and hope y'all are having a good night.  

Now if I can just finish grading those papers...