Thursday, August 21, 2014

Caught up...

I think blogging is a lot like working out. 

When you’re in a good swing, it becomes part of your normal routine, and you just do it, and know that it’s not hard.

When you get out of regular practice, it just backs up and backs up, and you start creating reasons to avoid it <there’s so much I have to write about!> that you just decide to play more video games instead.  Ahhhh….

So yes, I have a block of time here for the next three+ hours while Shelley has a minor surgery (she’s having hear ears removed so that she doesn’t have to listen to me anymore), and this seems like the perfect time to do some serious writing.

I’m going to do the Amie update stuff up front, so those of you who are not overly interested in the inner-most workings of my family and my mind can opt-out of the blog post early.  J

Amie got done with her first round of chemo (for this cycle, which is actually her 15th round of chemo, according to Shelley) on August 9th, and has handled it great.  She hasn’t vomited once, and we’ve gotten really quite good at anticipating when to give her Miralax to help with the...other side effects.

However, we knew it was coming…She’s started to lose her hair again, big time.  She lost about 30% of her hair in the last 24 hours.  Here’s what came out last night after she was sitting on my lap, with her head against my chest.

It is what it is, but it’s just sad.

Also, Amie’s memory seems to be really wobbly (like her movement) these days.  Dr. Robertson says she believes it’s chemo induced (and temporary), and not radiation brain damage cognitive deficits.

For example, in June, Amie could sing the entire song of “Do you want to be a snowman?” from Frozen.  Now she knows the first line, and then she gets a really confused look on her face and says, “I  fregot”.  Same with shapes, letters, and some words she was already working on. 

We’re hoping that it is temporary, but let me tell you, to see a kid’s memory literally disappear….her quickness disappear, and her confidence in her memories disappear…it’s a kick in the pants.

Other than that, things have been really peaceful and quiet.  Some would say boring, but that has such a negative connotation, and the new me has gotten so much better at appreciating the silent periods in life, and living more in the moment.  I will never say I’m good at it yet, but I will say that I’ve gotten much better.

Anya had Special Days camp the week before last, and as it was the last 3 times she’s gone, it was amazing for her. She walked onto the bus with no fear of being away from Mom and Dad for a week, and had the best time ever.  I love the idea that she has this place that is only hers, and that she can count on, year after year until she’s 18.  Even after, if she wants to be a counselor and work there after she is done being a camper.  So, so cool.

Working backwards…  Hawai’i. 


I think that when I die, it will go down that Aulani is the nicest place that I have stayed in my life.  Part of that is Make-A-Wish granting our ability to get there, and part of it is our room being upgraded by an awesome guy….  But either way, it was magical for the girls and I.

We’re a month after getting back from the trip, and they haven’t stopped talking about it.  Whether it’s the family time that we spent on the beach, in the water, on the waterslides, in the lazy river or just walking around, they enjoyed it on a level that I think they’ll remember it for a long time.

People keep asking them “What was their favorite part?”, and Anya has a really hard time answering that.  I think part of that is that it was just overwhelmingly great, and a treat to spend so much time as a family together, not worrying about any of the cancer stuff…and just being as normal as possible. 

A good story about the return trip:

On the way to Hawai’i, we had a calm one hour layover in Phoenix, so we assumed we would have the same on the way back.

The flight from Honolulu to Phoenix was smooth and kind to us, going overnight and landing at 7:30a in Phoenix.  We knew we had to board the next plane at 8:40, and shouldn’t have been a problem being that we had only carry-ons, and were in the same airport.

We were wrong.

So we land at 7:30a, and start disembarking within a few minutes.  We were in the very last row, row 35.  At 8:00a, we still hadn’t moved an inch from our seats, due to the number of people in front of us.  By 8:10a, we are off the plane, and look at our tickets to see which gate we’re loading on.  BIG MISTAKE.  NEWBIE MISTAKE JASON!

We move quickly across the airport to our gate, which is about a mile walk away…..ya see, Phoenix Sky Harbor is way, way bigger than Detroit Metro Airport, and our gates were at opposite ends.  We make the quick walk between them (knowing the doors will close 10 minutes before takeoff) and arrive to see that they had moved our gates back to about ½ way between the two points.

I grabbed all 4 carry-ons, put Amie on Shelley’s back, and we started to run.  I’m not a small guy, as you might know.  Now imagine what I look like with my messenger bag, Anya’s backpack, my backpack, and Amie’s string backpack all slung around my arms, neck and back…it must have been quite a sight.  At one point, rounding a corner, Anya’s right shoe flew off, and she grabbed it and kept running.  She was crying by the end, but she made it (with both shoes off and in her hands by the end).  We made the gate just in time, and made the flight.  It was straight out of a bad movie.

The last thing I had to write about was the fundraiser we had with The Link Fund and the two couples from Teen Mom/Teen Mom2.  To start off with, everyone involved was incredibly nice.  Insanely incredibly nice.  You have these preconceived notions about what “reality TV” stars might be like, and you’re hesitant.  But they were sincere, genuine, and kind people.

The thing we couldn’t talk about beforehand is that we knew that the MTV cameras were going to be there.  We didn’t want to have that part get out because the event might have quickly become a madhouse with people who just wanted to get on TV, and would have tainted the spirit of the event.  But from what I’ve been able to figure out so far, MTV is doing another season with the original cast members of Teen Mom, minus one who seems to have gone off the rails a bit.

It was so incredibly cute to see your daughters performing songs from Frozen to groups of people, some of whom have Twitter followers in the millions.  Amie, of course, charmed the pants off everyone, and Anya loved doing art projects with Javi and Kailyn’s son. 

I got an email from a former student who works at a local chapter of the Boys and Girls club, and the kids there (some of which are former students) got together and did a Team Amie walk.  I was so proud and humbled by their actions, and wanted to give them a little love.  Thanks y'all!

I can't remember if I've talked about this before, but Shelley and Amie (as a means to develop rapport and break the ice with Amie meeting a ton of new people this summer) had a habit where they asked every new person they knew "What's your favorite color?".  They then came home and Anya graphed the results.  (Go Simons and Churchill!)  Mott recently included their summer survey in their Camp Little Victors mailing that went home.  Good stuff!

Someone asked me the other day when I was at school how my summer was…and I think the proper answer would be overwhelming.  It was overwhelmingly good to see my family having so many normal moments.  It was overwhelming to see so many people coming together to raise money for my family.  It was overwhelming to go to Hawai’i in such bittersweet way.  It was overwhelming for Amie to have radiation every day for so long, even though I had to be part of so little of it.  It was overwhelming to see Amie starting to lose her hair (again) and her ability to remember things so quickly.  Yes, overwhelming is proper.

SO… I’m going to call this caught up on the blog, and move on from here.  School starts on Tuesday, which means I’m back on a schedule, and much more able to keep focused on doing blog posts.

Hope all is well with each of you.

ps.  In case there’s blog readers on who aren’t on Facebook…I’m collecting Xbox 360 games for the kids on Mott’s cancer ward.  If you have any extra Xbox 360 games laying around and would like to donate them to me, send me an email and we’ll figure out how to get them there.  

Tuesday, August 5, 2014

He's Back!

Greetings All!

Sorry I took most of the last month off blogging.  I wasn't in a good head space to do it, and figured that it was better to not post than to post some angry/whiny/annoyed post. But playing a bunch of video games, chilling out, and being geeky has been good for my head, apparently.  Or at least I'm good at faking it right now.  :)

So today starts the next 6 months of treatment for Amie.  We've just settled into our room on 7-East, and we're scheduled to be here for the next 5 nights.

We met with Dr. Robertson a few minutes ago, and she was able to show us the images from the most recent MRI.  She lined up the images from the late May MRI where we knew that the tumor was growing aggressively, and then the MRI from just after we got back from Hawai'i.  

They had told us that the change was substantive, but it was more than that.  I'd say that it has significantly decreased, possibly by as much as 30-40%.  Let me tell you, that's quite cool to see.

Anecdote #1:  Amelie loves the hospital.  LOVES.  She's been talking about how excited she is for her "sleepover" at the hospital for the last few weeks.  She was originally scheduled to go inpatient a week ago, and her blood numbers were not high enough (platelets, specifically).  She was devastated.  I don't know if it's the number of shows she gets to watch, the attention from staff, the 1-on-1 time with me and Shel...but whatever it is, she loves it.  The picture above is her waiting today in clinic.

Summer has been great for the girls thus far.  We've been doing our best to make it as special as possible, knowing that the next 6 months is going to have a LOT of hospital time.  A LOT.

One of the things that I wanted to do last summer was to do a movie night on the ceiling.  It was a smashing success!

I projected the movie on the ceiling, and the girls nestled in their snuggly blankets (we cranked up the AC to make it movie theatre-like), and watched the movie.  Mommy's special popcorn, of course, was delivered mid-way through the movie.

The above is Amie's latest and greatest artwork.  Anya has been teaching her how to draw things, and this is her Lion.

Anya's instruction is the best, and I don't have a copy of her directions...she draws out each step, just like the books she uses.  Step 1:  Draw a circle.  Step 2....  Great stuff.

Anya's artwork continues to amaze me though.  The level of detail that she includes just stuns me.  She is drawing with more detail, more patience, and more skill than nearly all my students last year.  
Cool, eh?

Anya is at Special Days camp right now, for the 2nd year.  No hesitation at all to leave us for a week.  None.  She's fearless to leave...  makes me proud.  :)

Special days camp posts pictures each day, and this is one from yesterday.  
She looks miserable, don't you agree?

Another thing we were introduced to through Mott was an organization called Peach's Neet Feet.  They give away hand painted canvas shoes to children in situations like Amie.  You send in a questionnaire, and a while later, voila!  Here are the shots of the super-special shoes she received.  

I realize that I need to do a full blog post about the Teen Mom fundraiser, as well as the Make-A-Wish experience.  I'm going to do those this week.  
I figure 3 long blog posts are better than 1 GIGANTIC one...

One last thing!

As many of you know, I teach in Belleville, and was at the HS for 8 years.  During that time, I had the pleasure to work with Rachel and Ryan Dybicki, as well as Sara Watson.  They were all amazing kids, who constantly worked hard and were awesome to have in class.  Top notch kids. 

Tim Watson is Sara's older brother, and Rachel and Ryan's uncle...and he died of brain cancer in 2006.  The family started the Tim Watson Memorial Golf outing as a charity to help out families suffering from cancer diagnoses.  They have chosen us to be one of the families who are the beneficiaries of the charity this year, once again showing the amazing generosity of people in our communities.

If you want to be part of this, click here to email Kim, or to get more information.

More tomorrow.  I don't want to wear out my welcome now that I'm back!
Hope all is well with each of you.