Sunday, May 26, 2013

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.

Sunday, May 12, 2013

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.