This is the not-happy post...

This is the not-happy post, but as a disclaimer, Amie is perfectly healthy.

Back in February, we had the opportunity to do a Make-A-Wish video with Lloyd Carr and a bunch of other kids.  One of those kids was named Maddie.

http://www.youtube.com/watch?v=T2OpU7d2lp8

Feel free to go watch it for a sec if you wouldn't mind.

Maddie is the young lady on the left with the blue bandana.

I had heard someone mention Woodhaven when they were chatting, and I approached her family to make the comment that I was also from Downriver.

(Total aside, what is it about being from Downriver that you are proud of it and want to talk to others also from there? )

Anyway, we got to chatting, and I realized that Maddie was also an 8th grader.

There's something about seeing a girl in 8th grade struggle through all of this that made her....more special in my heart.  I spent the year at McBride Middle School getting to know so many different 8th graders.  Some had virtually no problems, others had buckets.  Yet none of them had anywhere near the  set of obstacles on their plates that Maddie did.  Yet every time I talked to her she was happier than every one of my students.

In one of our last times we were in the hospital, Maddie was there as well, as her Leukemia was acting up.  We spent a little time in her room chatting and playing, and she totally doted on Amie.  She was a big sister in every way, and was really connecting with her.  Amelie wanted to go play with her more and more (in the persistent way that only a 2-year old can do), and we had to keep holding her off due to Maddie's strength.

Maddie was Amie in a lot of ways to me.  She was a girl doing her absolute best with an absolutely crappy set of circumstances and she was really happy most of the time.  Think about what it is to be an 8th grade girl in most schools?  You're judged on EVERYTHING, and there's a massive social hierarchy that has to be obeyed.  The social pressure was amazing.  When I asked Maddie about going back to school, she couldn't have been more excited.  The girl had a passion for life and friends and family and religion and....everything.

Maddie died Sunday night.

Her Leukemia took over, and through all the interventions....all the horrifically awful interventions that they tried, she was not able to get control of the disease, and she died.

The last time Amie was in the hospital for her last MRI, we came out of anesthesia and looked across the aisle, and there was Maddie.  She was miserable, in pain from her own procedure.  But she took a moment and tried to make small talk and to help Amelie get a smile on her face as she was coming out of her own procedure.  It's that kind of thing that just floors me.

I construct a really amazing little shell around us in my mind.  I know that the medulloblastoma is a ticking time bomb that could explode at any time, yet we have to plan for the best, plan for the most positive outcome.  I do a really damned good job of that most of the time.

But Amie is Maddie and Maddie is Amie.  Hot damn it's hard to keep that shell intact with something like this making it so damned REAL, so uncompartmentalizable.  I had only met her a handful of times, but what she was going through connected so much.  Seeing the normal 8th grader struggle in my classroom and then add in the nightmare of leukemia was just so much more...

So tomorrow we're going to say goodbye to her.  Her nightmare is done, the overwhelming burden of trying to stay strong in the face all of that poison in her system has ended.  She has found peace, no matter where that is.

Maddie, you were a great role model for many, and especially for me.  You wanted to take care of my daughter, even though you were in your own nightmare.  Sometimes we need to look outside of our own problems to find solutions.

I'm out of words for tonight.  I will finish in saying that I can only hope that my girls grow up to be as strong, selfless and kind as Maddie was in the few interactions that we had.  Thank you Maddie, and enjoy your hard earned rest.

Picture-palooza!

This is the first post I'm writing tonight, but will be the 2nd in line, the way it archives the posts.  

This post is just a massive update about the girls and life, with lots of pictures.  Blogger just uploaded them totally out sequence, and I'm not going to spend the hour to get them back into order.  Enjoy the randomness!

Shelley and the girls love garage sales, and they scored a Hello Kitty pop up tent at a garage sale.   Who wouldn't want a bright pink princessy pop-up tent for the living room?

To Shelley's utter delight, Amie has really taken to hair bows.  She doesn't mind them at all.  It also gets people to stop calling Amie a "really cute little boy!".  I don't correct them, ever, because I don't want to end up making people feel better for the fact that they feel bad that I have a kid who was diagnosed with cancer.  It's a strange thing how much I end up doing that.

Shelley and Amie were practicing emotions.  This was the best of the lot.  :)

Anya turned 6 just about a month ago.  This was one of her presents, a matching dress for her and her baby/dolly/hippo/bunny depending on the day.

One of the major benefits of living where we do is that there is a TON of u-pick fruit places near us.  This was at DeGroots, near Pinckney...about a 15m drive.  As you might notice, there's nothing in Amie's basket.  She ate a lot.

DeGroots' also has a livestock area.  I like this picture because you can see what a put-together little girl she is.  Water boots? Check!  Sun Hat? Check!

We've been doing a lot outside together, and this was a walk we took in Fairyland.  This was also the day that I got a MASSIVE case of poison ivy.  I look happy here.  I was not happy the rest of the week.

Amie is practicing a profession I dearly hope that she never takes up.  'Nuff said.

This is "Guy" or "Turtle".  He was a gift that we received from one of Shel's brothers.  It is loud and annoying as hell and Amelie LOVES IT.  She used it daily for a few months and then grew too big for it.  I put it in the garbage.  I was done with it.

She asked about it for weeks.
She asked about it for months.
She found another of them at a garage sale!

Turtle is now a fixture in our living room.

This was Anya and I playing around with pictures in Onekama, MI on one of our camping trips.

Amie likes to "dig holes" and then "put Daddy in hole".  She loves this game.  I do not however enjoy getting sand in every orifice, but I do so to make her happy.  Is that not what being a Dad is all about?

Watching the "Sun go to bed" in Manistee.  We've been doing everything we can to spend a ton of time with each other this summer.  Shel and I are both off work, and it looks like she's going to go back to work at the end of the summer, assuming everything goes the way I hope it does.

This is a terribly blurry picture, but it's the only one I've captured with Amie wearing her high heels, or as we like to call it, practicing her balance.  She's such a gender balanced kid.  She wears pink and high heels, but she loves her "diggers", kicks a ball like a banshee, and is really physically aggressive in her play.  I love it!

Ask Anya what the best time about Aloha State Park was? Mayflies (fish flies).  She loved them!  She was constantly playing with them.  My parents had taught her how to pick them up without hurting them (Luna Pier gets a plague-worth each year).

We really enjoyed the Mystery Spot in the UP.  It was silly and fun and totally worth the money.  TOTALLY.  Of course, we are weird.

This is the bike that Diane (Shelley's former supervisor) gave to us.  Anya loves it!

More to come in the weeks ahead.  As I said, I wasn't going to do regular blog updates unless there was something to report, but there's people following Amie's adventures who are not on FB, so I'm trying to do updates once a month if I can.

More camping starts......soon.

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.