Nuthin' to say but good stuff...

Greetings All,

Firstly, I apologize to any blog-only readers who aren't also on FB.  I realize that we did not update the blog after Amie's last MRI, and left those of you who aren't on FB out in the dark.

Amie's MRI came back clean and clear, and we've got a summer to celebrate.  Next check is due just before school goes back into session.  Woo!

Anya turned 6 last week as well.  It was a calm and quiet day, with Anya guiding the proceedings.  She's got a lot of crazy when she's around me, but delete me from the daily goings on and she's often a little version of Shelley.  She knows what she wants, what order she wants it in, and is very specific about how well crafted she wants the end result to be.  Lots of crafting, lots of drawing, scissors, glue sticks and fun fun fun.  Of course, she might just be a little bossy, but what 6 year old isn't?  Considering the chaos she's undergone this year, can you fault her for wanting things to turn out a specific way?

The girls play this game, often when we are driving around, that I refer to as Poof.  They like to "poof" things, as in use their magic wand to change things on each other.  I will at times jump into the fray, but most of the time I just let them poof each other.  Amie will poof Anya into a dog, and Anya will poof her into a turtle.

As I was driving today, I "poofed" Anya's hands off.  I told her she couldn't poof them back because she had no hands.  Without missing a beat she looked at Amie and asked for Amie to poof her hands back.  Amie did it instantly, and then they poofed me into a turtle.  I was driving, and asked them what I was supposed to do now that I had no hands and I was driving.  Amie told me to drive with my legs, as she had seen me do that before, while handing her something in the back seat.  Fun stuff.

Only one week left teaching, and then this wacky and chaotic year is done.  I need some serious decompressing after all of this.  I just looked.  Out of my 60 possible FMLA days, I only used 15.  Not sure how I survived all of that, but I do know that it's all a massive blur.

I'll do a post this week sometime with a massive bunch of pictures.  Amie's hair is now long enough that it can get all wacky and poky.  It's now longer than mine when I get it cut by Ms. Shelley.  I need also to do some shots of Anya's artwork.  She's getting really good.

More to come in the days ahead...

Pukefest 2013... Anyone want tickets?

Amie's energy really masks how tenuous her health is.  She does such a good job masking it with that explosive 2-year old energy, that I forget about her being sick.  Of course, her hair and her head scars are a damned good reminder, but there are moments where I just lapse into fun/crazy Daddy and start tossing her around.

But this past 9 days have been a pretty vivid reminder of the fact that she's on a road to recovery, and not recovered.  NOT recovered.  

Those of you connected on FB saw that we had a really brief hospitalization 8 days ago, last Saturday night.  Amie puked on the way to my parent's house in Luna Pier, and then again when she was there.  I was being overly optimistic, and didn't head home.  She was fragile, but playful for the rest of the day...and then spiked a fever later in the evening.  

Shel headed to Mott, where they cultured her blood and observed her for a few hours....and then sent her home.  They said that her counts were good enough that she should be able to fight off the little stuff, and they'd call us back if it was anything alarming.

She seemed to have bounced back for a few days, and these next few pics are from M-Tues where she was happy and not-fragile.

By Wednesday however, we were back sick.  No fever this time, but fragile and not interested in eating for the most part.  When she was interested, she'd puke it all up all over the place.  Meal after meal.  Wednesday, Thursday, Friday, Saturday.  Puke-o-rama.  More puking than all the rounds of Chemo combined.

But Mott isn't concerned.  They said her body needs to work it out on its own.  That itself is a nice framework of confidence, but still slightly scary as a parent.  She can't summon the energy to walk, and just wants to be held all day....but no need to go to hospital.  Not that I'm complaining, it's just strange hanging out in between sick and well.

She held down all her meals today, but still wanted to be held and watched a lot of shows today.  Onwards and upwards, right?

We've got the first of our 3-month MRI's on Tuesday, and hoping that Amie stays on the path of wellness that she's on so that we can make that happen.  I sure want to make sure that she's on the same path, plus canceling it will most likely impact our budding travel plans for June.

Hope all is well out there in the real world.  Us peeps over here are hunkered down, seeing if we can outlast the storm.

Knockin' on wood, every day...

Greetings All, and Happy Mother's Day as well.

Unless you're Anya, and then you're wishing people "Happy Others Day", which cracked Shelley and I up like mad.  She was writing out a note to Grammie to go with the present she made for her, and wrote Happy Others Day.  We both loved it. 

Speaking of mispoken/miswritten things, we have a good Amie story as well.  She loves to tell people to use the hand sanitizer when they come into the house, as Shelley is constantly reminding her.  She's made a contraction, and now calls it "Hanitizer", as in "Daddy, make sure you use da hanitizer.  You in da house now!"

Also, virtually everything that Amie says has about 3 exclamation points attached.  DADDY!!!  AMIE WENT PEE PEE!!!  AMIE GET HELLO KITTY MINTS NOW?!!!!?  

As you can see from previous paragraph, she's working on potty training as well.

As we've mentioned, we're in a holding pattern right now, as long as Amie doesn't get sick, we're only doing blood draws.  We've got our big MRI coming up on May 29th, which everyone is saying should show nothing.  I believe that 99%, but it's that horrible 1% that yells the loudest.

Some pictures from the last few weeks:

The above few pictures are all from the Faerie Festival in Fenton (nice alliteration, eh?) last weekend.  The kids really enjoyed it, and got to dress up like Faeries to go.  Amie will pretty much enjoy going anywhere at this point, as she's been closed up for so long.  Her blood counts are improving slowly, but still improving.

Of course we had to rock out the scrunchy face at the end.  :)

This is from "Little Bear" park, which is the park at Thompson Lake in the center of Howell.  The girls love this park, and it's a nice little bike ride from our place.  It's only about 1.5 miles, but pulling the girls it makes for a nice ride as they are about 100 lbs. with the gear and picnic materials.

Things to note:

• Amie's hair is growing back quite well these days.  It's growing back a little darker than it was before. Who knows what it will look like though...
• Amie's not wearing pants.  Blow out your pants at the park and don't have a replacement?  Wear your jacket as a skirt!  I swear, sometimes I think we're on Project Runway.  Where's Mondo when you need him?
• Amie and Anya are 90% best friends.  They love playing with each other, right up until the point that Amelie isn't doing exactly what Anya wants her to, for a period of time.  Then Anya gets all pouty and starts being mean.  It never lasts for long, but we are starting to see some serious sass.  It's either in her blood, or she's learning that at school.  eeks!  We no like the sass.

Amie cannot avoid throwing in a scrunchy face.

No, Amie doesn't wear this shirt every day, it was the same day as the above pics.  But I wanted to showcase that Amie got to visit Anya's school (Charyl Stockwell Academy), and Anya's school uniforms, which we love love love.



This weekend brought another humbling experience for us:

A friend, and former boss of mine at WNEM when I worked in TV, contacted me with an idea to throw an introduction to Yoga/Fundraiser for us.  We were able to arrange our schedules and be able to both attend, and it was truly great.

There were 4 instructors who were there helping people learn about yoga, and a bunch of people who came to support us/try yoga for the first time.  I've done yoga about 10 times, but I am IN NO WAY NEAR COMPETENT at it.  I just hope that I'm not embarrassing myself nor Shelley, and that's my goal.  I can see how it would really fit with my mindset, but just never can find a place for it to fit into my time....

Anyway, the people of that community were so amazingly generous, and I wanted to officially thank The Freedom Center in Fenton, and the Prana Yoga Center in Grand Blanc for being part of the fundraiser, and giving of their time and resources, as well as Jennifer Hogan for organizing the whole thing.

As we've mentioned, accepting help is not an easy thing for us,  which of course is a place that we've been consistently challenged over the past 8 months.   The generosity and selflessness that so many people have shown towards us just renews your faith in the utter goodness of the majority of people, across political lines, religious denominations, city and state locations and any other grouping.  Goodness prevails, because people take action to ensure that it does when they see need.

...and speaking of Goodness prevailing, I wanted to give a massive shoutout to Ms. Shelley.  This has been a really, really rough year for her.  I have had a rough year, sure.  But nothing compared to Shelley (in my humble opinion).

Shelley has always tried to be everything that a great mother can be.  She sacrifices her own comfort, her own needs, her own desires constantly to make the best experiences for the kids.  She knows that being the best mother that she can be is not an easy road, and one that is not filled with crappy food, television, or easy answers.  

She is constantly reading to learn, planning crafts, and doing everything she can for our family.  She gave up her career, she does almost all the medical treatments (when called for), and almost all of the trips to the hospital.  

So, on this Mother's Day, I wanted to say how much I respect and am awed by the sheer depth of strength that Shelley has within her, and uses it to drive our family forward towards becoming whole again.

I love you, Ms. Shelley, and look forward to another few decades of these as we watch both of our kids grow old in the years to come.

Ne me quitte pas, mi amore (as Ms. Spektor is serenading me right now)

Captain Overscheduled here, checking in.

We had our first real checkup this week, and Shelley wanted me to do a blog post to fill people in on what they said.

Firstly, everything is totally within the boundaries of normal, and nothing to worry about.

Amie's counts, however, are lagging behind where they'd hope her to be, in a perfect world.  They're improving, but at a microscopic pace.  So they're having us keep her restricted for another 3-ish months.  That means no gatherings with lots of new people, no communal areas like pools or play centers.    Also, if she gets sick, we get hospitalized again, and that's ultra-poopy.  They're also keeping her port in at least another 3 months.

Also, that means that we're postponing our theoretical June play date at Kensington which we talked about a while ago.  We're just in hang around mode, and enjoying the heck out of each other.

Amelie's hair is totally growing out these days.  It's not easy to see, but she's got a serious layer of peach fuzz all ove her head.  It looks dirty from a distance, as if she has been rubbing soil on her head.  I don't think that's what Shelley is letting her do.

It seems to be growing in MUCH darker than it was before.  We'll see how that goes.  Shelley said that she was a blondie when she was little, and then it morphed later on.  Time will tell.

As Shelley posted on FB, the kids really love mangos.  REALLY LOVE.  I'm sure they're going to have explosive diarrhea from all the fiber, but sometimes you do have to suffer for the things you love.  Shelley surely has to suffer loving me.  :)

I was in Washington DC all week, and boy...8th graders are really exuberant. I loved it....but man I feel old.

Hope all is well with each and every one of you!

Things are growing, but in a really good way!

Greetings All!

I made the comment a few weeks back that I was going to suspend blog posting until we really had anything to report back to y'all.

That's what I've been doing, but I've also been getting a steady stream of texts/calls/emails that sound something like "Hope all is going well!", which to me means that people are checking in on us.  Fair enough, people want them some Amie.

The following are 4 videos that we took over the last 10 days:

To say that Amie is doing well would be such a massive understatement.  Since our hospitalization over Spring Break, we've only had blood draws, and big batches of happiness.

On top of that, the explosion of hair is coming. I haven't successfully gotten pictures of it yet, because of life and work and business, but she's got a fine sheen of baby hair fuzz all over her head.  On top of that, she's grown about a 1/2 inch of eyelashes ( Oh, Ms. Spepcific Shelley wants me to say that it's only 1/16th of an inch.  Oh I see how it is.  We need to be all accurate here, w e can't just celebrate this....Sheesh Ms. Perfect.  :)      ) this week as well.

As soon as you mention her hair to her, she responds "Amie put in hair clips now?", which is so damned depressing and cute at the same time.  I'll do my best tomorrow to get pics of the hair and eyelashes before I leave for DC...and post them up.  If I can't get them, I'll get it when I get back with the new and improved goodness.

Anyway...we're all good.  Hope all of you are as well.

What a great day...inside of Hotel California...

Greetings All,


I'll start with the medical stuff, to go opposite of my normal stuff....

As the immortal line from Hotel California goes,  "You can check out any time you like, but you can never leave".

We're stuck in a waiting pattern for now, and have no discernible exit to the hospital.  Here's the situation:

• The cultures from St. Joe's Livingston (SJL from hereon) came back positive with for a gram-negative bacteria.  Gram-negative bacteria are no joke, especially in people with compromised immune systems.  Some examples of common gram-negative bacterias are e-coli and salmonella.
• However, she has only shown about 90 minutes of negative effects from this infection, on Wednesday.  They gave her a broad-spectrum antibiotic (cefepime) every 8 hours since Wednesday to beat down the infection, and it hasn't shown its head since then.
• As of today, they learned from SJL the exact type of bacterial infection that she showed on Wednesday in the culture, and again on Thursday morning in the culture at Mott in her broviac.  However, they're waiting back to hear about what specific sensitivities that the bacteria has, so that they can craft a specific assassination antibiotic for it.
• The bacteria that she showed evidence of has a tendency to be both mean and resistant to antibiotics.  They need to kill it, and kill it dead (I think I'm quoting an old exterminator from the 80's here), so that it doesn't linger or thrive.  To do so, they have to have all the information on the bug that they can.
• Amie has shown no fevers, no vomiting, no symptoms at all since having the broviac removed.  before that, she had a few minor fevers....but they might have already killed the bacteria.
• They want to be really, really careful with her and craft the best plan.  They want to keep us there until that plan is ready, so that if she manifests any symptoms...they're there to immediately jump on it.

We had two sets of visitors today, both wonderful.  Iman brought us a sack o' Samosas.  I ate one, but left the rest for Shelley, who has an eternal and binding love with Samosas.  I love them, totally.  But I'm not IN LOVE, with them.  If Shelley could marry a Samosa, I believe she might divorce me and cozy on up to the wonderful deep-fried folded potato pastry.  

Also, Matt and Tina Royle took time out from their anniversary weekend to drop by.  They braved the craziness of Zingermans on a Spring Saturday to get us brownies.  Seriously, that's dedication and friendship.

It was wonderful seeing all of them, and a great break to the monotony of the hospital.

Then we ventured out into the budding Spring of today.

Today was beautiful.  They disconnected us from the "tubeys" as Amie would call them.  They urged us to take a long walk, and go out and enjoy the weather.

Enjoy we did.  :)

We walked from the hospital to Kerrytown to the Artisan's Market, and then to the Co-Op, and all over the Main Street area to a bunch of different shops.  Ann Arbor Home and Garden to Jazzy Veggie to Espresso Royale to Rock Paper Scissors.  Eventually we decided to head back to the Hospital, and logged our journey at roughly 4 miles and 3.5 hours.

Amie loved the journey, had a great time and I can feel the effects of the sun on our faces.   I cannot possibly explain how much I need the Spring to be here.  I need to get on my bike and ride, take long walks with the kids in a wagon, go on bike rides with the kids in the bike-house chanting "Go Daddy Go", and all other sorts of adventures.

My hibernation of the last 6 months wants to end, and wants to end now.

So.  Mr. Bacteria (it has to be a guy, because ladies would realize it's time to leave and GTFO), please exit my daughter's body so that we can go home and enjoy the rest of Spring Break.

Hope all of you were able to go outside and stand in the sunlight for a few minutes.  It was wonderful in this miserable winter that we've just labored through.

More to come as we know it....  Also, lots of pictures to come...just didn't have access to them for this.



Addendum....  this is the 101st blog post in the series.  I think that deserves some sort of celebration.  Only realized I was that far in the list once I published.

Dun-Dun-Dunnnnnnnnn

It's been 11 days since we posted, and for 10.5 of them, we had blissful play, peaceful sleep, and a really amazing homelife.

Then came last night.

I wish I could have recorded the scene as it occurred last night and shown it in a reproductive health class.

Scene:  Jason's Living Room.

  Jason and Amelie are on the couch.  Amelie is shivering, while being wrapped in a blanket in Jason's lap.  Shelley takes Amelie's temperature, and it's 100 degrees.  That's cause to call the hospital.

Shelley calls.  They want us to come in, but stop at Howell St. Joes first to do a blood draw and get a first dose of antibiotics.

Jason picks Amie up, and walks towards the bedroom to put warmer clothes on her for the ride.  Amelie begins to vomit on Jason.  Fountains of vomit that land squarely on his collarbone, and run into his sweater.  Shelley, detesting vomit tries to help but is ordered by Jason to retreat.

Amelie continues to vomit on Jason, for a third...fourth...fifth time.  Amelie looks at Daddy and says, "Daddy...shirt dirty".  She continues to vomit a few more times.  Puke is running down his chest, onto his pants, and even in his underwear.

Jason looks at the camera and says, "Still want a cute little baby?"



Of course to me, this is nothing.  This is minor.  I know that vomit and poop and all the rest of the stuff can be washed off, and therefore doesn't matter at all.  But I bet there'd be some traction with a video like that.  :)



So we went to St. Joe's Howell, and then was moved to Mott via ambulance.  I was dropping Anya off at Grammies, and met them down there afterwards.

They treated us in the ER and moved us to a room on 7E around 12:30am.  I left soon after to set up my classroom the next morning.

Flash forward to today:  Amie's feeling great, but we learn that we have a central line infection.  Apparently the labels on the blood draws from St. Joe's Livingston were jacked, and they don't know WHICH part of the central lines are infected.  We have the port and the two parts of the broviac.  One part is infected, two parts are fine.

We're assuming that the broviac is the problem, and have scheduled its removal for 9am tomorrow morning.

If the labs come back that the port is the problem, we'll have to make some decisions, but sure hoping it isn't that....

So that's where we're at.  If the infection grows, it could get bad.  But we're hoping that tomorrow's surgery to remove the broviac, and then a follow up course of antibiotics will clean everything up.  If not, we'll figure that next part out with the help of the Docs.  :)

Have a great Easter everyone.