Whatchoo mean I can't post videos?

Hmm...  as of yesterday, there's a new restriction of what you can post with Blogger using the hospital's internet connection, and I can't embed pictures or videos into the blog due to that filter.  I think I might need to go learn to use those bypass programs that I used to hear the kids talking about at school.

So, if you want to see those things, I'll drop links to them.

For example, we shot a really sweet and nice video of Amelie this morning.  She's chattering away, much like a certain big sister.

So, if you want to see it, you'll have to click on that bit of text that is a different color above.  Same with pictures.

If you want to see this picture or that picture, you'll have to click on the word this and that from the beginning of the sentence.  Make sense?  Good.

(I can't help teaching.  I really can't.  There might be one person out there who doesn't know what a hyperlink is, and I must educate them.  I can't control myself)

As an official thing, we're here until mid-week at the very least.  We met with Dr. Yannick, the bone marrow doc who is overseeing the stem cell harvest, whenever Amelie is healthy enough to do the harvest.

Go watch the video.  She's a cute kid, and is at her cutest this morning.  We love seeing that, as its a signal for us that she's bouncing back a bit.

...or maybe she's just the cutest zombie that we've ever seen.  The Walking Dead does restart this weekend... ya never know.

Photo post? Testing

Seeing if I can back door around the filter w my phone.

Anticipation makes the heart grow fonder?

So that's a comment I've heard for a long time.

Well, my heart grows no fondness today, because the anticipated infection is HERE!  Woo!

Ok, that's not quite the right tone.  I don't think it's alright to cheer on an infection, but at least there's no waiting around for it to show up.

Amelie had a temp somewhere in the range of 101-102 when we woke up, so Shelley get the process going to get down to U-M, after dropping off Anya at Grammie's place.  I think Beth is going to go grab her from there and keep her with Yit Yit and Charlie for a few days.  She could even get in some Strzalkowski grandparent time too... :)

We're in the ER for now, and will most likely be admitted for a few days to nuke the infection.  We were scheduled to come down on Sunday anyway for the harvesting of stem cells, but who knows where we are with that.

Have I ever told you how awesome my co-workers are?  I got the call that Shel and Amie were coming over here and within 10 minutes had people to cover my 4th, 5th and 6th Hour classes.  I was out of the school within the half hour.

Not sure why, but the filter in the ER is now blocking pictures from being uploaded to blogger.  Hmmm...  I'll drop them in later.

Update.  We're being admitted now!  Woo!

Form of...

Does that title spark any memories for any of you?

It does for Shelley and I.

We are the Wonder Twins... or at least we aspire to be most days.  Thus far, we haven't had many days where we hit emotional potholes at the same time.  We do a seriously adequate (not raising any bars here) job at pumping each other up, filling each others buckets when we hit a snag/bottom/obstacle.

Last night was mine, tonight was Shel's.

Amelie looks like a bag of hot, tired mess.  She's still the shiny happy baby we love the crap out of...but when I just moved her from the Pack n' Play in our master bedroom (where she falls asleep) to the girl's bedroom (where she sleeps the rest of the night), she was sweaty and feverish.  But it's not the big one yet.  She's only at 99 degrees.

The magical number is 100.4.  When she hits 100.4, they want us to call....and soon after get in the car to head on down.

Unfortunately for us tonight, we only have this thermometer that slides across the forehead, beeping like mad.  It's worked great for us since Anya's baby shower.  However, its quirky and not exactly accurate.

So we ordered a new one through Amazon Prime, and we'll get it tomorrow.  It's one of the fancy schmancy inner ear ones.  We need precision.  :)



Shel keeps telling me that a "good blog" needs "great pictures".  I didn't take any pics of Anya or Amelie today.

So, as a way of saying goodnight tonight, I have a picture of Amelie sitting in a paint bucket that's filled with water.  We did this all summer.  Filled up the buckets, and played outside.

Night all.  Go hug your kids.  Or call them if they're currently out of hugging range.

For you kids out there who are not possessing your own kids, call your parents.  K?  K.

Want to learn more about blood?

Good.  I'm glad you do.

Before I launch into things, I have to make a few statements.

Firstly, I have actively avoided learning much about the treatments, about the disease, about the possible ways that things WON'T work out.  I figure that my job is to stay ultimately positive and supportive and awesome....whatever the heck that means in the middle of this.  I am the rock upon which other people lean, to find support in the middle of their weakness.  That's my self-imposed goal.

I figure that the basic desire in learning as much as I can about something like this is to gain some sort of control over it.

I have no control over any of it.

Now that we've gotten past that, I have to give a massive shout out to Kate.  She's in a similar boat in that they've gotten a recent diagnosis which has turned their entire world upside down.  But within that reality, she's thrown herself 100% into learning about Spina Bifida, and challenging herself to rework their world so it's copacetic with wheelchairs, braces, physical therapy and alternative outcomes.

The normal for me is to know absurd amounts of things about things.  When I hear that Aronofsky is making an new movie, I research the basics of the plot, the stars, the producers...and find out all about the stars in the movie who I haven't seen before, et al.  I like to know things.

But apparently not about chemotherapy and medulloblastoma.

So tonight I had to start learning.  Here's what I learned:

• The blood is composed of platelets, white blood cells, red blood cells and plasma.  There's more, but I don't care.
• The platelets help control bleeding.
• The white blood cells help fight off infections.
• The red blood cells help carry the oxygen to other parts of the body.
• Chemotherapy pretty much destroys the blood.
• The harvesting of the stem cells is really harvesting parts of the white blood cells.
• Chemotherapy specifically attacks the white blood cells.
• A normal person has a White Blood Cell (WBC) count of 6000 or more.  
• A person on Chemo who is doing badly has a WBC of 500 or less.  That's when they start to get really worried.

Amelie has a WBC of 100 right now.  

yes, folks, she has no immune system.  None.  

So what does that mean?  

She's going to get sick, really sick...really soon.  The body encounters so many bacteria and virus each day...and the white blood cells fight them off.  But if there's no white blood cells, there's no fight.  It's pretty much like New Orleans when Katrina hit.  There's going to be a buttload of looting, and Amelie is Best Buy.

Some of you are saying, "Oh, they can just keep her at home".  That's a great idea...as long as we're not there.  And she's not there.  And Anya too.  We are all drenched in bacteria, and there's no keeping it away from her.

Shelley had a checkup and a blood draw today for Amie, which is where we became privy to all this wonderful information.  Her 1 hour checkup became a nearly 7 hour journey where Amelie was transfused with new blood and platelets.  

So, today?  We're glad we're not adherents to the Jehovah's Witnesses, nor of 7th Day Adventists, as we'd have blown that out of the water.  Not sure what other faiths are against blood mixing at the moment, but we're officially opting out of those as well.  Someone keep me abreast of the faiths I'll never ascribe to, thanks.

Amie went through all that today, and then came home...got her shot to help her white blood cell count, got pissed at us for the shot for 20-30 seconds, and then hugged us and asked to go to bed.

Oh yeah, she ate two monster bowls of cheerios before that too.  

Today was such a crap day, for so many reasons.

Can we just act like it didn't happen?

I'll be honest...

...I've not much to say tonight.

I got off from work, got an oil change (a bazillion miles since the last one), went to pick up Anya from school at 4:15p, got home by 4:30p.  Amelie was fading fast towards bed by 5:45.

I didn't get to spend much time with the girls at all tonight, as they immediately started playing together, and they're never really that interested in us parents once that starts.  It's a blessing to us most days, but sometimes you DO want to spend a bit of time with your kids.  Scary idea for some of you, I know.  :)

Not sure if we've talked about this in a while, but we're giving Amelie a nightly shot of some gook that is helping her build up her stem cells.  They'll be harvesting them next week, and the shots help her get big and strong....at least in her blood.  Amelie has been a heckuva trooper through it.  She cries, sure... but she calms down as soon as we're done, and we clap for her and she likes that.

So...Anya drew this picture last night.  We have these templates of Matryoshka that I used in my 6th grade class last year, and she loves drawing these little triptychs with a common theme.

Last night was a much like most of them, at first glance.  It has Amie, Anya and Mommy.  I get the boot of course...stinky boy that I am.

However, when you look closer at the lower level triptych, it's amazing.  She's got Amelie losing her hair, and still smiling through it.  I swear to you, we did not influence these in the least, excepting for the conversations that we've been having prepping Anya for her losing her hair sometime soon.

As you can see, as each picture is progressing, she has less hair.  But notice also that she's holding her hair that has fallen out (she's a clean girl who likes to clean up, clean up...everybody every where), as well as smiling.  I love this picture.




Finally, there's this video that Shelley shot today.  Amelie wanted to provide her bonafides to her love for Play-Doh apparently...

In case you don't know, you can press the [ ] looking boxes at the bottom right of the video box to make it go full screen.  It's worth it.  :)

As you can see, it's amazing.  She's amazing.  Not much else I can say to follow that bit of goodness up.

Night all!

Sweet Home......Howell. Where the skies are so blue.

Home Sweet Home.

I didn't post yesterday because we wanted to take a day where we just ignored the rest of the world and lazed about the house.  It was needed, it was nice. Sorry to have made my legions of fans weep for the lack of posting.  :)

However, more than anything else, yesterday was about laundry.  We did laundry for most of the day in 35 minute intervals.  For most of you, laundry is a thing that is a start and forget about kind of thing. It's an easy thing that y'all do that is part of your day...or weekend or whatever.  For us? We... live in a quirky place.

Shelley bought this condo when we were just starting to date, and she bought a unit in the first building in the development.  In subsequent years, we learned the the developer was a crook, had a history of ripping people off, promising things, etc. etc.  He pretty much abandoned the development at some point, and there were buckets of lawsuits that were filed, all solved long ago.

The reason I'm telling you all this is things are just not up to spec in our building, and one such thing is the dryer vent.  Our dryer vent, the ductwork that leads from the back of the dryer in our pantry to the outside world, venting the heat and moisture, does not work.  There is a duct opening there.  However, nothing leaves that room.  We've hired people to snake it, the association has done the same.  They've basically told us the next step is to rip out all the walls where the ductwork travels in order to figure out where the blockage is at...or rebuild the whole darn thing.  We'd incur the cost for that, and always opted out of that.

So what do we do, now that we can't dry our clothes?  We hang them.

Lots of hanging things.  This is just two pictures.  I could have taken another 10.

We have two dryer racks for the things that can't be hung very easily.  We then use hangers to hang things off of every surface that we can.  Door frames?  Check.  Shower curtain?  Check.  Chairs? Elliptical machine? Check. Check.

Yesterday we harnessed all our extra hangers and had about 60 things hanging, and both dryer racks maxed out.  We are well humidified, let me tell you.  That's a lot of laundry.  I think we did 8 loads.

If you didn't look too closely (at the massive head scar and the port beneath her shirt), you'd never know that anything has happened with Amelie.  She's just running all over the place, and saying all these new words.  It's really cool to hear her vocabulary fleshing itself out so well.  She stopped saying "Gah Gah" and now says kitty or cat.  She now is saying the specific thing she wants to eat (when she does) and not "MMMMMMMM" like she was a month ago.

This morning she looked at me (I was bleary eyed, as it was 6:05a) and said "Daddy.  Bread.  Jelly.  Amie eat."  That's about the longest string of words she's put together...and in the middle of this chaos, I think it's about the best I could ask for.  We've seen no cognitive delays or changes of any kinds yet.

Actually, that's not completely true.  She perseverates on things way, way more.  What I mean by that is that she wants to do the same things over and over, and is WAY more stubborn when we try to redirect her.  Sometimes to the point of utter meltdown and its just not worth the fight.  This was not there a month ago, but if that's the worst thing that's going on, we're winning.

More than anything else, Amelie wants to play with Play-Doh.  Some days she asks to get it out 10-15x....  She'll play with it each time for between 10 and 60 minutes...we're talking hours of playing with Play-Doh.  ...and the girl has really specific rules about what  you can and can't do! I keep getting her really mad by doing things I'm 'not supposed to do'.  She likes to roll out the Play-Doh and press a cookie cutter into it. However you're NOT ALLOWED TO TAKE THE CUT PART OUT.  I didn't know that.  Now I know.  I've heard that's half the battle.

We had two sets of visitors to the house after we got out of the hospital.  My sister was first.  She came into the house, cleaned up, and stocked our fridge.  She bought a ton of stuff that will help with Amelie once she starts to eat more.  More on that later.   The balloons tend to sit at the peak of our ceiling in the living room, which is quite high as you can see.  My sister came out and really made the place look great. Balloons, tons of food, a juicer, a "ninja" and fun cards all around.  Didn't take pictures because I was just plain worn out.  But trust me when I say that she put a ton of effort into having a great homecoming.

In regards to Amie's eating, she's pretty wary right now.  She's eaten about a days worth of food over the last three days, but that's within the boundaries of what they said could happen.  She had a few pieces of toast this morning (with magic sprinkles of course), and some orange juice.  Some mac and cheese for lunch, some pasta (with broccoli hidden in the sauce) for dinner last night.  Some cookie this morning.   We're totally aware that she's not rocking the protein yet, but we need to get her eating something before it needs to be the correct somethings.  

We also had the Jim and Linda Heraty out for a bit, as they were attending a wedding in our neck of the woods.  I'd have taken pictures of the cookies and arrangement that they brought, but the girls destroyed them with their greedy fingers and mouths before I had a chance.  SUGAR!

I'd mentioned this before, but Anya has been really enraptured by the medical play that U-M introduced to her while Amelie was recovering from the brain surgery.

We took a video of this scene, but both decided that it was WAY too graphic to show, not to mention creepy.  Kitty (this is one that Sarah got Amelie) needed surgery, so she's on her back, arm prepped with an IV and having her belly sawed open with an IKEA butter knife.  Not exactly precise medical instruments, but I'm sure Kitty was in no position to complain.

So far this morning Anya has broken a leg (and hopped around the house while retrieving medical supplies), used about $5 in gauze/tape/bandaids from the dollar store, and all sorts of other medical mayhem.  The kitties, dolls, uglies and all other friends look like a tornado (and a mean one at that) came through and really roughed everyone up.

Schedule wise:

• We are back to U-M on Wednesday (10/10) for PT, blood work with pediatric oncology and a few other things.  
• We're back the following Sunday (10/14, a week from today) to start the stem cell harvesting.  That could be anything from an 8 hour stay to a 6 day stay at the hospital, depending on how the harvesting goes and how strong she is.  It also looks like it'll be the first in our predicted long string of blood transfusions.  Feel free to go give some blood somewhere if ya want to help.   :)

Have a good Sunday out there y'all.