Sunday, December 30, 2012

Post-Chemo Round 4....

When I get to a break, my brain goes into slow-down mode.  As in, slow-down ya're killing us over here!

So please pardon the lack of blogging, for those of you who are following along and looking for updates.  My brain wants to relax, and the less I do on a daily basis, the more relaxed it gets.

First, I wanted to share a CRAZY shirt I got for Christmas from my sister and her family.  Those of you who saw my family pictures on FB already saw me wearing this.  But it was nutty enough that I wanted to share here as well.  The Garza's bought both Shelley and I cat t-shirts....mine is by far the nuttiest.

Anya was her animated self for the most part.  She doesn't stop talking, moving or thinking.  How she pauses to sleep still amazes me.

For all of Christmas eve, Amie had very little energy.  Much like the previous week.  She had no real interest in opening gifts either.

Anya got two entire Doctors kits, and really loved each for their different items they contained.  Being the good sharer that she is, she talked about how her and Amie could both wear them, when Amie got bigger.  I love the fact that the reality of what's going on with Amelie, and the negative outcomes that are a possibility, really aren't a concern for her.

IT'S A PUZZLE!  That's the face of happiness.

I've been told that the official name for a self-portrait with a cell phone is a "selfie".'s a selfie of me and the girls.

This is a bag that was given to us that I blogged about a few weeks ago.  Shel has been using it religiously for clinic and for our admit into the hospital.  Thanks again incredibly cool and anonymous person!

A few blogs ago I talked about the teenager who donated his brain to research when he got a fatal diagnosis of a really rough brain tumor.  The article talked about how they had mounted his signed Les Paul guitar in the hospital.  I sought it out and took a pic.

This kids' generosity, his amazingness is just inspiring.

So this post finds us just finishing up round 4 of Chemo.  It was a weird round. They swapped out one drug for another, so no new hearing damage, but they're getting us ready for a whole lot more transfusions.  The night that I stayed there, Amelie was such an angel and slept the entire night through.  The two nights that Shel stayed there, she was a wreck, and cried for hours.

Either I soothed her and I'm the WINNER, or Shel got the crap pile and the unlucky draw.  Not sure which it is, but either way, I got the better hand by far.

So, unless Amie gets sick, we're out of the hospital for the next 3 weeks.  Shel will still be going down for 3x weekly blood draws, and most likely 3x weekly transfusions.  That's a lot of hours sitting. I needs to get her more books. 

Did I mention that our kids, before this started, watch virtually no Television?  Anya was getting an hour or so a week, and Amie was getting 0 minutes.  Ever.

So, with that being said, we've had to really embrace the kids watching more TV.  Amie has no energy some days, and the only thing that will keep her settled is giving her the iPad and letting her Netflix some Dora.  We've gone from 0 minutes to hours a day some days.  She's ornery and restless.

Anyway, a nurse at Mott's said the first crappy thing to Shelley in that the nurse wouldn't be allowing her 2 year old to be watching as much TV as Amie was.  Shelley was totally shamed and angry at this woman, and we put it on our comment card.  In the end, she's right, but she's also TOTALLY wrong.

Yes, kids under 3 should be watching very, very little TV.  All the brain science research is saying the same thing.  But there's a massive difference between ideal and extremely, really un-ideal circumstances.

Ok all.  We're home, we're relaxing, and the girls are going to play together like mad tomorrow.  

Hope tomorrow brings festivities for all of you, and a great New Years Eve!

...and Amie wants you you to know that in life, why suck just one Pacifier when you could suck two.  


Monday, December 24, 2012

I believe I might be called a humbug...

First, to get this out there, I'm not a fan of Christmas.  At all.

I think that Christmas brings out the absolute worst in many people, and transforms usually good people into a ravenous mob who care more about stuff than about people.  This isn't a reflection on my immediate family, but more as a reflection on society as a whole.

Not sure when things shifted in America, but we're now a country who worships stuff...and usually poorly made, cheap stuff at that.  So, Christmas, being the holiday that revels in poorly made, cheap stuff, rubs me absolutely raw.

In my oh so humble opinion, virtually everyone I know has way too much stuff.  WAY TOO MUCH STUFF.... and we ought to instead spend that money on creating communal experiences with those we love.  That can be through shared sacrifice (like volunteering) or providing stuff for others who don't have the bare necessities (like kids in cancer wards).  Whatever the case, I'm anti-stuff.

Not sure when I became so vehemently anti-stuff, but I'm firmly there.  I have no doubt that if I was suddenly single, I could live comfortably in one of those crazy small IKEA rooms that they demonstrate out.  One room is fine with me!  Give me my technology and somewhere to sleep that is soft and warm, and I'm good.

I'm sure that the fact that my 2 year old having cancer has absolutely nothing to do with the absolute lack of patience I have for anyone whining about Christmas gifts, or shopping, or gas prices, or any of the other mundane complaints that people have.  None at all.

So, is this all a rant?  No.  It's explanation for my crazy mindset leading into Christmas.

Firstly, I totally forgot to buy Shelley anything.  I've been in survival mode for months, trying to do my job enough to keep it and the insurance it brings, while at the same time to take care of my family's needs at home.  It's totally overwhelming most weeks....and it hit me like a semi from that intersection I never looked at that I didn't buy anything for Shelley.

I'll be honest in saying that she does everything else.  She buys everyone everything for our family because she's way, way better at it than I.  I buy stuff that I think would be cool for them to get...and then it's often awkward and strange....or overly nice...or whatever.  She buys gifts that are appropriate and they will like.  She's the queen, I'm a lowly serf.

So yeah.  I have nothing, other than my undying service and attention to the needs of my family.  I guess that's a pretty nice gift too....but I still need to go buy some crap once we get past Tuesday.  ;)

For those who have followed me on Facebook, we've been having a great time playing with our Gnome (Finley), who has been being mischievous as of late.  I decided to play nice the last night he was here and make a grand spectacle that Anya would love.  She really did.  A little too much, because when we deconstructed it she lost her poop.  Crying, screaming...overwhelmed with emotions.

We've been trying to get as many good pictures of the girls this holiday season (for obvious and depressing reasons), but have been really coming up short.  Amie just wants to be held, for hours in a row, and only by Shelley and I for the most part.  She also wants to suck her pacifier for most of the day.  We're pretty much following her lead, figuring that Chemotherapy is not the time to set harsh limits on what comforts her and what doesn't.  Anyway, with all that being said, I loved the picture above.  Good stuff.

Same series, but without the pacifier and with the scrunchy face.

There's a lady who lives in our condo building, a few yards away from our door.  She's in her 80s, has skin cancer and other health issues, and is very lonely.  We try to check up on her whenever we can.  Anya decided to draw this for her today, and I thought it was extremely worthy of being shared.

Taking pictures of kids is never easy.  It's like trying to hit a 90 mph fastball.  There's an element of skill, but also one of luck.  This was about the best I could do with the twinsy T-Shirts I purchased from Shirt Woot a few weeks back.  I love shirt.woot.  

You can see from the shot just how much weight that Amie has lost, as well as how much hair.  But you can also see that she's in great spirits.

On the total positive side, her appetite has returned with a vengeance!  Andrea Sprague (a former co-worker) gave me a loaf of cinnamon bread the other day when we met up at the Corner Brewery in Ypsilanti.  Amelie ate most of the loaf over several days....and enjoyed it enough that we scored a second loaf today.  She also ate Krispy Kreme donuts and drank most of a quart of milk in the last two days.  Go eater girl!

We're back in the hospital for this Thursday for round 4 of chemo.  Woo!  More updates as we have things to talk about.

I hope all of your Christmases are filled with grateful, healthy people who love each other and take time out to notice one another.  What else can one really need in life?

Wednesday, December 19, 2012

Grab the Kleenex, I'm going to make you bawl...

Greetings All,

Things have been really, really quiet around here on the Amelie news front, so we haven't posted much.

Amelie is beyond fragile right now, for some reason.  But she's just wanting cuddling, which is what we've been giving her in buckets (and buckets and buckets....right Grammie?)

However, good stuff has just been POURING in from other fronts.

The donation from the Bayou Grill was the first of these, last weekend.

On Monday, a woman walked into my school 5th hour, and handed off a gift bag to another teacher at the school.  Inside the bag were lots of things.  There was an amazingly well made bag from the person (my wife was in awe of the sewing machine she used to make it, as she immediately knew it had the ability to do really great embroidery) with a ton of personal touches that really meant a lot to her.  Inside was a generous donation, a book, and a picture of the family having cut off their long, lustrous hair to donate to kids with cancer.  Wow.

(We're not sharing their names because we don't think they wanted it to be public.  But be assured, we're floored.)

Now, this is amazing enough....except when we realize this is from someone we've never met.  They have no idea who we are except through a friend of a friend who had recommended she read the blog.

That's not to say that we aren't touched when y'all who we've known for months/years/decades reach out and do something awesome...we do.  We love it.  But in an age when things happen in such unimaginably horrible ways like what transpired in CT last week....  it somehow means more.

We got a call from our Dentists who did a fundraiser for us, and they tell us to swing by to pick up the envelope.

When I walk into the office (Drs. Fuhst-Wylie and Kahn in Howell) I see this AMAZING banner that they've made, and I'm immediately crying and laughing simultaneously...and I haven't even made it to the front desk yet.

I was quickly ushered into the back office, and see all these handmade Christmas cards to our family, and Amelie specifically.  There's a lot of them that have cat stickers on it.  They're all over their walls...its just overwhelming in its kindness that these people who barely know her (she doesn't get regular dental care yet), and only know us from our sporadic visits have done all this for her and us.  We are speechless.

Then we go to the mail, and there's a bunch more checks from people....and cards, and pictures that kids have drawn, and stickers for the kids.

Then we get a visit from Shelley's (now former, unfortunately) co-worker Sarah (the chica who set me up on my blind date with Shelley...another story for those of you who are interested), and she hands us another envelope for the potluck that they did for her.

Have I mentioned how amazing it is to be surrounded by kind, considerate people who look out for you in your time of need?  Oh, my lord.

So that sets me up for heading into school today, where I've planned myself a nice little rest of week.

I get to my planning period, and heat up my lunch (Penny's Mac and Cheese.  Thanks, Penny!) and start reading where I find this article.  I read it for a second, and see that there's a video accompanying it.  So I start that.

(spend the 4 minutes to watch this video please.  Totally worth it)

By this point, I'm sobbing in my room, and I'm a complete mess.  It takes me about 20 minutes to pull myself together.

I show the video to Shelley tonight, and we're both crying again.  She clicks through to another video, and we get to this one:

It's not as shattering, but it does feel like a home.  Not as much as a home as our home, but man...this place does just about everything we could hope to make us feel like we're part of the solution, and that things are going to work out.

Anyway.  Tons of good people out there are showering us with love and adoration and generosity and just overall amazing stuff.  We wanted to let you know that we're so thankful for all of this, and that without all of you, we'd be in pieces.

Thank you, from all of us.

Saturday, December 15, 2012

Generosity + a reframe

Greetings All,

In light of the ghastly news that's consuming our networks right now, I wanted to start with the super awesome stuff.  The news we have of connectedness, reaching out, and how impressive and kind others can be.   

Some people that I've been close with for years (former students, and parents of former students) have been instrumental on getting the word out about Amelie, and making themselves available to facilitate donations to the Operation Ameliorate  fundraiser that my sister had set up.  I've been really hands off (and will continue to be) because it's not our style to look for handouts.  However, my sister and many friends have noted that if people want to help, it's rude not to let them.  Fair 'nuff.

So a local restaurant in Belleville (where I teach) donated a $1000 to us, to help with all the assorted expenses that are coming at us.  We went and accepted the check from them tonight, and took this picture to commemorate it.

Their generosity, considering that I have never met them before today, is staggering.  They heard that a family who has touched the community (their words, not mine) was in need, and they did what they could to meet that need.

So, I hereby have a favor I am asking of you.  This was not anything that anyone asked me to do, but paying it forward/back/sideways.  If you are wanting to head out for a meal, head into Belleville and eat at the Bayou Grill.  Their menu is here.  Go grab a meal at their place, indulge in your carnivorous ways and glorify your taste buds.  When you're done, ask to talk to Brian and tell him thanks for helping us out.  

Like I said, no one asked me to do this, but feel like I need to help spotlight the good things in light of how much awfulness is out there on days like today.

On to the rest of the stuff we wanted to talk about tonight...

Shel and I have been reading all the words of support, love, excitement and everything else that can be named and labeled from the MRI results on Wednesday, and wanted to lower everyone's expectations a bit...or at least put them in a file and put them away for later.

The MRI results were great.  Amazing...but they do not mean that Amelie is done with her fight.  This was a test to see if the chemotherapy was doing it's job, and it is.  If the cancer had come back in light of the chemo, then we'd be in really, really sad territory.

So, where are we going from here?

  • Amelie starts round 4 of Chemo on December 27th.  She'll be admitted that day, and be in the hospital for the regular 4 day stretch of chemo, unless things go haywire somewhere.
  • They are switching Amelie off the cisplatin that is harming her hearing.  The chemo drug that they are switching her onto is slightly less effective, and HUGELY harder on her blood.  But it doesn't attack the hearing, so they're going to switch to that.  
  • Amelie's blood counts are steadily moving up right now.  They're going to keep her off the vincristine boosters that they've been giving her on Wednesdays to keep building up her blood before we start on the next round.
  • My sister got a ball rolling inside MESSA (my health insurance provider) to review the denial for the stem cell rescue that Blue Cross/Blue Shield denied us from having access to.  Apparently, denying approval for a procedure that could possibly help an insanely cute and sick 2 year old might possibly be the kind of press they don't want.  Hmmmm....
  • Amelie's bones really hurt right now because of the Neupogen that she's taking to help encourage white blood cell development.  They said it makes people ache in their bones.  She's definitely feeling that right now.  We've been holding her for most of the last three days, and she doesn't want to walk anywhere.  Not like any of us are going to complain about a little cuddlebug wanting to sit with you.
  • There's probably more, but I can't think of anything.  If so, I'll add it once Shel reads this.
So yeah, things are bobbing along over here.  Amelie is getting prepared for round 4 that will start in 12 days, and we're settling in for an uneventful Christmas season.  

Hope all is well with you and yours, and that you can reach out and make some new/strengthen old connections this month.  I keep thinking, in light of the horror in Connecticut, that the more disconnected we are as people, the easier it is for things like this to happen.  Between the nightmare of the hate, fear and anger that is spewed at the state and national political levels right now, I can't help but think that we all just need to stop, spend more time connecting with each other as humans, and look for the our common humanity.  It's so much harder to hate someone when you can see their obstacles, their struggles, and their successes.

Night all.

Wednesday, December 12, 2012

12-12-12 'Tis a fortuitous and auspicious day!

Today, as many of you heard through my incessant posts on Facebook was a very good day.

For those of you who didn't, the 3 month MRI came back clean and clear.  There's no sign of the cancer after 3 rounds of Chemo.

It was a day to inspire some hope, to reinvigorate the spirit.

I'll be honest with you, Shelley and I tend to be the Yin and Yang in regards to the diagnosis.  Shelley is a positive thinker in this regard.  She thinks it's all going to be fine, and in keeping in good spirits and thoughts we'll shepherd her through this.  Me?  I tend to think the worst, and that we need to do everything we can to enjoy Amie every single second.  We need to squeeze the juice of that particular lemon.

So.  Today I start building hope.  

I've never seen a little girl go through so much, at such a young age.  I'm sure this is the standard story of people talking about adolescent cancers, but it's my story and I'm sticking to it.  So Amelie is a trooper, and she's become accustomed to pain, boredom, nausea and people constantly being in her business.    I can't count the number of adults who would fold under such pressure, and she shrugs it off....mostly because she hasn't learned that there's another option.

So I'm totally chalking today up in the win column.

On to pictures!

This is a really cool bracelet that Shelley's work team gave her.  I love the symbolism, and the reminder of their support.

We were trying to get Amelie to give us a smile, but only succeeded in getting her to give us a scrunchy face after the "Clean MRI" today.

Some friends of ours looted our hidden key and dropped off dinner for us.  A boatload of good Middle Eastern food from Woody's Oasis in East Lansing.  It was darned good eatin'.

Anya absolutely loves Hummous too.  :)

So there ya go.  3 months and 3 rounds of chemo are now done.  12-12-12  Woo!

Saturday, December 8, 2012

Numb, don't be a bum!

Things are rather boring right now, but I guess that's a good thing....right?

So we haven't been updating things much, as it's been the same old grind for most of the last week.  M-W-F Shel is heading to Ann Arbor for blood draws, transfusions and physical therapy.  Most days she's there all stinking day, and comes home utterly destroyed.

M-F I'm working my butt off trying to teach 8th graders to read properly, and doing my darndest to insert some Social Studies information in there too.  I get all three girls fed, cleaned and in bed, and then do lesson planning after everyone has fallen asleep.  Somewhere in there, I try to fit in something for me, but that's always the first to go most days.  (not doing a pity party, but moving towards a point...I swear).

It got me to thinking that I'm just numb.  Numb to the pain, numb to the grind of it all.

It reminded me of this TED talk that I've mentioned before, and how dangerous it is to numb yourself to certain experiences.  If you haven't already watched this, and you have some spare time, watch it now.  I promise you it is worth your time.  Really, watch it now...I'll wait.

So, as she says in the video, and I believe....if you numb yourself to pain and loneliness, you numb yourself to joy and exhilaration as well.

I'm really good at numbing, or escaping crappy things.  Really good.  But then I totally know that this prevents me from being totally in the moment of being with Amie and Anya right now, when they most need me there.

Not sure of where I'm going with all this, it's just what's bouncing around my head today, and I know that my constant desire to escape into books, into video games, into movies and awesome TV shows (I'm a total TV snob, and ignore 99% of what's on broadcast tv, but still) is part of this numbing.  But it's so hard to break out of the patterns of behavior we create, and into a new one.  Not even sure how to go about being me without those things. the pictures!

This picture was the first that I wanted talk about, because I was so proud of Anya.  As Shelley detailed the other day, we've had a really hard time with Amie keeping down food.  She ate great two days in a row (piles of Macaroni and Cheese made with Half and Half, cheesy breadsticks, and other high calorie foods) and both days she puked it all up when we gave her one of her antibiotics.  On both days, after we got her in a better place, Anya was doing such a good job of being a comforting big sister.  Sitting on the couch, feeding her some water and then milk when she was ready, and watching Kipper the Dog on the iPad.  Granted, she wanted to watch TV, but she was so caring that it was great to see her doing something unbidden for her sister.

Most Saturdays Shelley takes Anya to the Lowe's Build and Grow or Home Depot kids craft sessions at the stores.  I think the idea of these is that Dads and their kids can go do manly stuff together, but being that I'm little more than a half-man (if you compare my skills to the Man Chart that is out there somewhere), I punt and let Shelley go.  NO ONE wants me to be using a hammer if there needs to be a clean and neat outcome.  Anya loves the crap out of these events, and is close to earning herself a hammer at Lowes.  :)

My friend James Scofield made these amazing Millenium Falcon patches, and Shelley sewed it on a hat for me.  They are amazing.  I got a bunch extra from him and gave them out as Christmas gifts to the kids that I know love Star Wars.

Shelley has finished the tree, and it looks very nice.  Of course, I couldn't actually care less if we have a tree or not, but Shelley and the kids do, so therefore I do.  Hopefully that makes sense in the reading, as I hope it does.  It made sense in my head at least.

Did you know that Rudolf the Red Nosed Reindeer had two little girls?  Apparently his wife is a supermodel from Finland with all that blonde hair.  Some of you are thinking, don't you mean Sweden?  That's the stereotype.  Nope.  I mean Finland.  I'm partial to Finland.  There's way, way cooler people in Finland.  I've met 4 of them, and I'm sticking to my guns on this one.

This is a pic of the girls making presents for each other and pretending to be Santa.  It was ultra-cute, and occupied much of the morning hours while I slept and enjoyed the bed.  I got to see the last bits of it as I emerged at 7:30am.  Yes, our house is wacked.  I do see 7:30am on a Saturday as sleeping in hours past when I would normally get up on a non-work day due to a cute little gremlin that wakes up way before the sunshine on the off-chance that she can watch "a show" on the iPad.

Counting down to the big MRI on Wednesday 12-12-12 is the day we find out if things are progressing as everyone hopes, or if we are in the badlands.  I'm voting for staying in Michigan, and not finding ourselves wandering the ancestral holy lands of the Sioux.

Wednesday, December 5, 2012

Private Shelley Strzalkowski, reporting for duty

Hi All,

This is Shelley tonight.  We had some good news and wanted to share it with everyone.  Amie had her hearing test today, to follow up on the chemo that she recieved while in the hospital last week, and the results were awesome.  She has experienced no new hearing loss!

To top that off, the testing they did today showed no hearing loss at all in her right ear.  The audiologist explained that there can be a false positive in the testing but not a false negative and that the damage, once done is permanent (so it wasn’t that Amie’s body healed since the last test).  Yay!  I needed a little bit of good news thrown my way and for me this was it.  

Until Amie’s counts start coming up, we are spending a lot of time at the hospital.  It makes for long days with one little exhausted girl since everything moves so slowly at the hospital.  This is what this week has looked like/will look like for us:

Mon-blood test, platelet transfusion
Wed- blood test, hearing test, oncology appointment, chemo
Fri- blood test, blood and platelet transfusion, physical therapy

We’ve also pinpointed her puking to one medication, so I talked with the oncologist about it today and we are done with that one!  Yay!  Hopefully she’ll be able to keep a little food down now and gain back some of the weight that she’s lost over the last week and a half.   

The best part of Amie’s day was an unexpected visit from Auntie Beth while we were in the infusion room.  Amie’s face lit up when she saw her and she was completely speechless with joy.  I’m so grateful that Beth has lots of good tricks for getting Amie to eat and drink little bits here and there as they sang and played together during her visit.  

More to come in the next few days, but Jason is asleep next to me on the couch at 7:36p. That's a record for him, as he usually comes to bed hours after me.

Night all.

Sunday, December 2, 2012

Catching UP!

See that fountain?

Isn’t it pretty?

Imagine it coming from Amelie’s mouth, and replace the water with puke.

Not so pretty anymore, is it?


Yep, we’re in pukefestland these days, and it derailed some plans, and caused us to do a LOT of laundry this weekend.

But, I’m getting ahead of myself, because I owe y’all some time on this post, and need to cover some ground.

We got out of the hospital on Thursday night, and as always it was amazing to sleep in our own beds.

As always, Amelie likes to wave goodbye when we're leaving the hospital.

This is Anya's homework.  For Spanish.  In Kindergarten.

Have I mentioned how much I love our school?  I know I'm a heretic for putting my kid in a charter when I teach in public schools, but I just adore the parent buy in, the amount that they hold the kids to higher standards, and all that.  Don't want to gloat, so I'm moving along.

For these two pictures, I'm giving a shout out to the Flaishans family for sending Amie and Anya crafts to do.  The girls loved the stuff, and had fun with them for a few hours this afternoon.  Good stuff!  Amie looks worried here, but that's not the case.  She just hates taking pictures, and makes pained faces when I take them.

We went out and got our tree today, and Shelley got it moving towards her usual amazing end.  Of course, I thought pulling a Vanna on the tree was the best idea.

Notice the lack of pictures from yesterday.  Puke-O-Rama.  I was supposed to go down to Belleville WinterFest to rep the fundraising efforts there...didn't happen.  My parent's friends (and my parents) threw a party for us as well at the Monroe Boat Club last night as well.  

A ton of money was raised, and Shelley and I are both humbled and amazed at the generosity of all of you.  She is officially unemployed as of Wednesday, so it's epically cool that it's happening at the time that it is.

Ok, y'all.  I have more work to do...

Anyone who ever complains about teachers having the summers off, I'd like to know how many of you spend 10+ hours each weekend working, and not getting paid...weekend after weekend.  I always am chagrined when I hear that we have this cakewalk job with summers off.  I easily work more in 36 weeks than most people do in 50.  Whee!

Friday, November 30, 2012

I owe ya a longer post...

...but I graded homework for two hours tonight and I don't have anything else.

We got out last night and had a nice night here tonight.  Amie is on IV fluids tonight, and Anya is asleep in her bed.  We're vegging on the couch.

Tomorrow is two separate events, if anyone is interested.

First is the Mexican Dinner at the Monroe Boat Club, generously hosted by Manuel and Nancy Barbosa.... long, long, long time friends of my parents.

Link for more information:

Also, tomorrow is Belleville WinterFest, in which some people are hosting a booth to support us as well.

Link for more information:

For those of you interested about Winterfest, it kicks off around 3p, and will include a winter parade with lighted floats and the such.  Should be a nice time.  Anya and I will be there from 4-6ish.

Night all!

Tuesday, November 27, 2012

Struggle and Vulnerability at 1:42am

It's 1am, and there has just been so many interruptions to everyone's sleep tonight.  Of course, this makes it hard for me to get back to sleep.

I've been musing on the idea of strength.  If I've talked to you about this before, bear with my faulty memory. For those of you who don't know, Shelley is a therapist, and she works mainly with clients who have what they refer to as co-occuring disorders, in that they have problems with substance abuse and mental health at the same time.

In that vein, Shelley has been engrossed with the research of a Social Worker out of the University of Houston named Brene Brown...and strangely I have too.  Her work deals with the idea of shame and vulnerability, and how the so much of who we are and the choices we make are tied up into those two ideas. (I HIGHLY recommend listening to her two TED talks that are on the splash page when you click through that link.)

I'm thinking of how vulnerable and strong Shelley has been through this whole process.  Her entire life has been completely unraveled, much like one of her sweaters that she so gorgeously knits.

  • She has a daughter who suddenly has brain cancer.
  • She has to give her older daughter to someone else to raise for days/weeks at a time.
  • She has to give up her job, that she has worked for over 10 years to establish herself.
  • She has to risk losing her certifications, and being grandfathered into certain laws, due to giving up her job.
  • She has to deal with an at-times flaky husband who has some serious boundary issues with what he shares with the world.
  • She has to repeatedly ask for help from many people, acknowledging her inability to do everything.
  • She has to accept all of the above as being normal for now and not let it overwhelm her.
...and she does all of it with quiet grace, at least most of the time.  

She said to me that she was really envious of my "escape" to school most days, in that I get to have a different life.  Her life is now Amelie's illness, with occasional gentle forays into other things.  Of course I immediately get all "high horse" on her in my head thinking of how I'd love to not be working...  but know that among all the insanity that is teaching 8th grade in my school district, she is right that I get to have an adventure that is denied her. Among all my daily failures and frustrations in doing something brand new after years of success, I am at least on my own adventure.

She is locked into shepherding someone else on their adventure.  Not that there aren't immense rewards in all of that, because there are.  But she's on Amelie's (unwanted) adventure, and has to see it through to the end, wherever it leads her and us.

All of that leads me to think about how vulnerable that must make her in a world that tells women that to be considered successful you have to have healthy children, be perfectly slim and have an immaculately crafted exterior, work at a job that inspires/heals/creates/makes the world a better place, and make an appropriately suitable home for your husband.  She has basically had to give up her ability to make all of the above a priority.

On top of all that, she's had to embrace her emetophobia, and be strong as Amelie pukes on her at times.  She has to embrace letting Amelie watch more TV right now than Anya watched before she was 4.  She has to watch them pumping deadly, toxic chemicals in Amie's body while knowing that she was previously concerned about organic vegetables.

I say all of this as a dramatic and overwhelming love letter to Shelley, as I sit awake at 1:42am.  

So, Shelley as you sleep the sleep of the overwhelmed and exhausted in your own bed...  I love you for being able to embrace all of this with the spirit and energy that you have, and know that I am beyond lucky to have you to go through all of this with.

Night all.

Monday, November 26, 2012

Fist Pumping Babies!

Greetings and Salutations to one and all, the blogster has returned.

As we last detailed on Wednesday, we didn't start Chemo last week, so we had a week(ish) to get Amie to love her some food, and spend some time as a family.  We did this to our best the documentation.

I posted this on FB a few days ago as a Thanksgiving greeting from Amie, but wanted to include it here for those that are not on FB.  We have been making her whatever she wanted to eat, and she said she wanted "browns" which are mini-tater tots that Shelley just adores as replacement hash browns.  She always wants her "dip dip" for them, which is Ketchup.  Scrunchy Face of course makes it perfect.

We knew that Anya wanted to do normal Thanksgiving stuff, but that Amelie really ought not go out and about.  So my sister took Anya for a few days to do Thanksgiving with my parents, and then hang with the Garzas for a few days.  This was them on the way to see Rise of the Guardians, which she enjoyed.

Auntie Beth and Anya doing their best imitations of me.  I feel honored.

This is what it looks like outside my parents' house in Luna Pier, MI.  Allyssa is a great big sister.  :)

Amie likes to play on Anya's bunk bed...but knows that she can't do that without us.  We wanted to send Anya a picture telling her that her bed was getting used well while she was gone.

This is Anya's room at Grammie's house.  For those of you who don't know, this was Shelley's room growing up, so it's kinda cool for us that she gets to use it.

Anya was showing her cousins her room at Grammie's, and playing around in it.  Yan Yee and Moy Moy really enjoyed it.

This is one of Amie's pillows that she's using.  She loves it.  Have you seen Coraline though?

This is Amie tonight, as she was about to start round 3 of Chemotherapy at Mott.  This was totally spontaneous.  I can't help but think this is a lot like the internet meme picture that has been floating around a while...

I've been asked to let y'all know that anyone desiring wristbands, T-shirts, or to just have a grand old time should check out Belleville WinterFest this Saturday.  (click the link for details)  There's going to be a booth for those that are doing stuff to support us, of which we are infinitely humbled.  I'm going to do my best to come by and say hey at some point.  They're good peeps.

Medical details:  
Amelie's counts were good enough, and she was hydrated enough, for us to start round 3 tonight.  The word still isn't official on rounds 4 and 5, but most likely we'll stay with the same levels of doses from rounds 1-3, due to the insurance denial.  Dr. Yanik, the pediatric oncologist we're working with says this isn't a big deal, as the evidence that is going to be publish indicates that there's very little efficacy to doing both rescue rounds, even though we have enough to do about 5 infusions.  Such is life...

The first "post-chemo" MRI is coming up on December 12th.  This will tell us if/how much the cancer is coming back.  Hoping for a nice clean bill of health on that one.

More to come in the days ahead.  I'm staying there tomorrow night.

Time to work on Sub Plans for Wednesday!  

Wednesday, November 21, 2012

Shelley + Jason = Lots of Words!

This is Shelley's post:

So, as Jason posted last night Amie was not admitted for her third round of chemo yesterday.  Her ANC (absolute neutrophil count), part of her white blood count, the part that helps to fight infection, was too low for them to have her start chemo.  Her platelets were also low, so we stayed for a blood transfusion before we came back home (the low platelets alone and the need for the blood transfusion would not have caused them to delay chemo.)  

Amie was in good spirits and has been for the last few days, so the news that her counts were low really caught us off guard.  Someone asked me what this means in the big scheme of things and the way it has been explained to us is that the longer Amie’s body has to recover from the previous round of chemo the longer the cancerous cells also have to recover and grow.

There was other news yesterday that we got that makes the delay feel even harder.  About 2 weeks ago, we were carboned a letter from our insurance company saying that they were denying the pre-approval for the tandem stem cell rescue.  This is the treatment that Amie’s doctors have laid out for us from the beginning. This was recommended based on a study that had just closed at U of M, where that the last three rounds of chemo be mega doses and that for her body be able to survive them that she would be given her own stem cells back in a transplant/rescue.  

I was able to talk with Dr. Mahar yesterday for a while about the denial.  He said that he’d spoken with the insurance company for about 2 hours during 3 conversations and that although they were very knowledgeable about the study at U of M and others going on they did not consider it to have proven results since none of the studies have yet been published.  Dr. Mahar consulted with the team who is doing the current research and although their data has not been yet published and the statistics were still being worked out, the results are that the 3 rounds of treatment were “a shade of grey” different in recovery.  He said it was definitely less that 10% of an improvement and much more likely 2-3%.   The insurance company was willing to approved one round of the stem cell rescue, which has been a course of treatment that has been done for some time now.  (As a total side note I asked about the costs of the rescue procedure and he put it in the $50,000- $100,000 for each round.)

These two pieces are what made yesterday so hard for me.  Jason commented on this once before when talking about being discharged from the hospital.  We have so little control over anything in our lives right now (at least the big stuff) and when the things I think are going to happen don’t, it’s really hard to wrap my brain around accepting them and moving along.  

The new treatment plan at this point is that we will continue with 6 rounds of chemo, the first 5 being the same and then the final one being the massive dose of chemo and the stem cell rescue.  There will be one of the three chemo drugs that will change (to a less effective drug) at some point along the way when it causes a significant loss of hearing for Amie.  We are told that it is unlikely that she will lose hearing necessary for speech during round three, but that is a possibility.  They will continue to test her hearing after each round of chemo.  They have told us that it is “common” that children’s hearing is impacted enough to require hearing aids due to chemo and that if she requires radiation in the future that the impact would also be compounded by that.  

Jason's contributions start here:
There's more that we can share, but its not time for that.

My parents came out to see the kids today, and they played with them while we went out to eat.  

Do you know how hard it is to have a conversation about anything else other than cancer or the kids themselves?

Anyway, Anya went with them tonight and will spend Thanksgiving with my parents and my sister for Friday.  We'll grab her on Saturday morning, and Amelie will have our undivided attention for a few days.  Anya will get the fun and excitement of the Strzalkowski/Garza clan.

We're going to re-charge, re-fill and re-whatever and see how much we can fill our bucket over the break, and see what we can have put together by Monday when we go back in to hopefully start Round 3 on Monday.

Onwards and upwards, right?

Tuesday, November 20, 2012

Ultra-Short and to the point...

Tired, exhausted and emotionally beat up today.

Just a quick update to say that Amelie's blood count numbers were too low to start round 3 of chemo today.

They sent her home to heal up more, and they're going to re-check on Monday.

Yes, it's been 5 weeks of a 3 week cycle, but they say it's not horrible.

She gained a pound though!  So that's good news.


Monday, November 19, 2012

Rip roaring and ready to go...back into the hospital?

Did you know that last night was the night Amie turned 2 and 1 month?  Neither did I!

But that didn't stop us from having a much-delayed private invite only birthday party for Amelie, courtesy of the very tres cool Shelley.  

 We busted out the frozen cupcakes from Amelie's birthday, and ordered us some Jet's breadsticks (the go-to junk food around this place).  We figured that if the goal was to fatten up our little golden calf over here, stuffing her with ice cream and pushing cheese covered breadsticks dipped in Ketchup (yeah, me too, ick) at her was the way to go.  Amie loved it, and of course Anya thought it was the best idea EVAH.

Anya's been doing a great job making cards lately, with no help from us.  She's writing from memory for the most part, but she's learning lots of words too.  She is sounding through lots of stuff.  Woo!

Amelie loved the cupcakes by the way.  They were Dee-Vine.

I got home from work today and saw that Anya had this out.  She successfully spelled out her entire name (minus the middle - Quinn) several times in front of me, without mistakes. (she did not have the puzzle frame to help, thank you.  She's mastered that skill)
  Most of the staff of my school can't even do that.  (ooooh, burn!)

I just got done reading "An Abundance of Katherines" by John Green (thanks Jen!), the same author who wrote "The Fault in Our Stars". Both were great, but fault is the best of his so far.  Anyway, the protagonist of Abundance is a kid who anagrams things all over the place.  Reading about that made me want to anagram some, so here's my best shot with Anya's name.

Anya Strzalkowski = Lazy as a stork wink

Tonight's our last night home for a bit, so we had a movie night.  Most of you don't know how little media our kids have encountered, so this is a REALLY rare thing.  The girls of course wanted snacks.  

Tonight Amelie ate:
  • Popcorn
  • Fruit snacks (x2)
  • Ice Cream
  • Mac and Cheese
  • Peanuts
  • Pineapple
  • Toast
Apparently, all we need to do to get her to gain weight is to take a few weeks off chemo to get her appetite back.  Hmmmm, there seems to be a problem with that logic, but I'll come up with what it is later.

I asked Shelley what our reading audience needed to know about us being admitted back into the hospital tomorrow, and she responded with some amazing duck lips and said "dunno, going in for chemo".  So yeah, there ya go, from the duck lips of our fearless leader.  Goin' in for Chemo!

As always, the updates pick up greatly when we're in the hospital, because....what else do I have to do than go slowly mad listening to a cacophony of beeps and other random noises.