Giving Thanks...

Ahhhh, the obligatory Thanksgiving post, where I ponder the things that I have to be thankful about.

I have many, yes I do.  Many, many.

But do you ever notice that sometimes you have one thing wandering around the back of your mind that prevents you from ever really properly focusing on the things that you have to be thankful for?

Yeah, I am totally suffering from that as well. 

My job is really going well right now, way more than I’d ever believed it could again.  Rainbows and sparkles abound.

We’ve got good friends and family that consistently support us through this mad process.

Shelley and I seem to be healthy enough considering this is about the most stressful thing a couple could go through, at least in my limited experience.

I’m healthy enough, Shelley an Anya are healthy, and Amelie is doing amazingly well with this round of chemo.   Amie is getting 21 days of chemo out of every 28, and she’s thriving right now.  Hair growing?  Check.  Gaining weight? Check.  Happy and energetic? Check.

All of that adds up to really good stuff, and should make me thankful as heck.

But the ticking time bomb of things, and the lack of any discernable plan for her treatment other than “Let’s see what it looks like in another few months” is this flapping bat of a thing in my head most days.  Need to figure out a way to work on that, and to start treasuring things as they are more, and not worrying about how they are not.  Yep.  Need to do that.  Follow my own advice.

SO….  Happy Thanksgiving everyone, from us to you.  No news from us on this front is very, very good news.

One funny before and after shot from Amie today:

This is Amie with her "sprouts" in...  She doesn't have enough for ponytails, but these Mileyesque hair buds are her favorite.

This is what her hair looks like afterwards.  CRAZY!  Her stupefied look probably doesn't help anything though.  :)

One more thing...  for those of you who want to feel good about students, go over to my school's website and watch the video that I produced for the staff this week.  Each of the kids volunteered their time and effort to be kind to staff members with no offer of compensation, credit, reward, or anything.  They just wanted to say what was on their minds.  I love it.

MRI brings clarity? Ha!

Just got off the phone with Dr. Robertson, and the results are....  boring?


The MRI from today shows that the tumor has not grown, but it also has not shrunk.  It's sitting tight.  That's a good thing, we think.  Right?

So.  That's not exactly good, but that's not exactly bad.

Dr. Robertson is going to present the results to the tumor board in the next few weeks, and see what they think regarding next steps.  Cancer grows, but now cancer is not growing.

So we're in a positive place.

Life in Casa de Strzalkowski has been great.

Things are really, really doing well for me at work, which is a smashing change of events.
Anya has really taken some great steps in reading, sight words, and math...and we're loving that. She truly loves each day she gets to go to school, and is so excited about each and every opportunity to learn, even though it doesn't come as easy to her as some.

Amie gained a pound this month, even though she had 21 days of chemotherapy over the past 28.  She's happy, energetic, fun, smart and always wanting to have her hand in everything we're doing right now.

Shelley is doing her best to keep an even keel with things, and enjoying every moment she can with the girls.  Yoga, knitting with friends, spending a few spare minutes talking with me....all good stuff.

As you can see from the pictures, Amelie's hair is getting wicked long.  I'll do a post soon with lots of new pictures.  For now, you'll have to sate yourself with this one.

No new news really.  Cancer isn't growing, isn't shrinking.  They're going to start another round of chemo next Tuesday with the same protocol, unless they don't.

Hope all is well!

Happy Birthday?

Firstly, for those of you who might not know, today is Amelie's 3rd Birthday.  I kinda want to shout it from the rooftops, to let everyone know.  I think that's mostly to both celebrate that she's still here a year after that wackadoodle crazy diagnosis that no one in their right mind can ever really be ready for...but also because I find myself so frustrated and angry that she's going through this process and she's in limbo.

There's such a different story unfolding with these rounds of chemo.  When we had the first diagnosis, they laid out a plan of attack in our first meeting in October after the brain surgery.  They told us exactly what would happen, for how long it would last, and then followed that plan.  They had slight deviations, but it was the same plan the entire time.

Now?  It seems (to me, a not-so-humble observer) that we're off into much more uncharted territory.  Every conversation we have with the Oncologist team is filled with lots of "we'll see what happens...", and "we'll make that decision when...".  To me, that's what happens when I cook.  I keep throwing things at a recipe until I get to a point where it's either good, or tolerable, and then I eat it.  For me, that works great, but Shelley says I have broken taste buds.  For Amie? It scares the hell out of me.

"Throwing spaghetti at the wall to see what sticks" is another analogy that I might use to describe her treatment.  I don't mean to say that they don't know what they are doing, but they are definitely just trying things out to see if it will work.  There's 0% certainty anymore, and that was really reassuring last time.

Anyway, today is her birthday, and Shelley is doing her absolute best to make it special.  We bought her breadsticks (Jet's Bread) last night for dinner, they're going to the pool to swim today, and then heading to Mott for chemotherapy.  They'll be there until 5:30p, head home, eat her "volcano cake" which is a pile of creatively frozen ice cream, read some stories and then go to bed.  She'll be wiped.


So it's another lost thing for a little girl who doesn't know what she's lost, losing nor might lose.  It's a bit sad for me, but the important thing is to make sure things are completely happy and explosively fun for her.  I can do that.  That's my best present for her today.

Go Go Energizer Bunny! (that's what Shel is calling me tonight with this blog post)

Ahhh, so what's been going on in the last three weeks?

Shelley and Amie did the first 4 days in the infusion clinic, and I did the 5th.  They were all very long days, but that's to be expected.  You have to be ready for this kind of day. (Except for mine, which was a Saturday and easy).  

It's long.  Like...  mindbendingly long.  Drop Anya off at 8:10.  Then you have to drive to Ann Arbor down 23 in the morning traffic (45m drive becomes 1:15).  Then parking, getting to the clinic around 9:30.  Wait in the clinic waiting room until 11am, possibly longer. Get called back to the infusion room.  First they have to give her anti-nausea meds, and wait an hour.  Then an oral chemo, then they wait an hour.  They hang the chemo, and that takes another hour or so.  All the while, if the nurse who is taking care of you has another patient has a rough day, the entire process slows down more.  Once all that is done, they deaccess Amie and send them home.  Shelley walked out of the hospital each day no earlier than 3:00pm.  Drive home, again an hour and walk into the house at 4p.  Or 6:30p the first day.

It challenges the soul if you aren't girded with patience.

...and here's the thing, I don't have to deal with much of it.  My job is to go to McBride Middle School and rock that out of the park.  95% of my students really enjoy being in my classroom, and really try to be the best version of themselves.  They are giving me great feedback, and filling my bucket on a daily basis.

Shelley?  She's kind of adrift right now.  She's giving her all to the kids, and then filling every spare second of the day with SOMETHING to not think about what's going on.  

We put the kids to bed each night between 6p and 7p, because the kids are just done by then.  Once that process is done, it's 7p-8p, depending on when we start.  We have virtually no energy at that point, and usually watch some bit of television, if we have a show waiting. (We don't have cable, and watch a few shows on Hulu, Amazon or Netflix).  But we're just empty shells at that point most nights.

Not sure how Shelley's staying afloat, but she is, and it's amazing.  :)

So that was week 1 of chemotherapy.  

We had a week with nothing, so we decided to try to teach Amelie to swallow pills.  Ever tried to do that?  Yeah, it's about that easy.  We started with Mini M&M's and she did great.  We moved on to the candy bits of the candy necklaces.  Once again, she aced it.  We asked her to swallow the Accutane pills that are the exact same size as my Nexium and she.....REFUSED!

Big shocker eh?

So what do we have to do?  Use needle-nosed pliers and squeeze the ever loving crap out of the pill, after we pierce it's surface, into a spoon.  We mix in a bit of chocolate syrup (Midnight Moo from Trader Joe's is the fav right now), and she takes it down no problem.  I bet we're getting 98% of the dose, so it's not really an issue, but seriously...just swallow the pill.  (Dreaming, I know).

We're in the middle of that protocol right now.  We end that protocol on the 15th, and then immediately start back with IV Chemo the same day.

Want to know the best part?  Amie gets to spend her 3rd birthday on IV chemo!

<Insert sounds of Crickets as no one is cheering here>

Yeah, her 3rd birthday is Friday October 18th.  Mine is the 19th, but I'm opting out of the birthday thing this year.

How is Amie handling all this?  With the grace and derring-do of a superstar.  She really is.  Not sure if this lower dose/longer duration chemo is easier on her body, or she's just getting more stamina towards it...but she's really doing great.  She has tons of energy, and really wants to move and play.  She stops eating during IV chemo, her GI tract goes bezonkers for a while, and she has her low days...but compared to the hospitalizations last year when she refused to get out of bed, she's doing amazingly well.

That's enough day to day for now....

Home Depot did a great day last Saturday, where they did a home safety day with  lots and lots of activities for kids.  The girls absolutely loved it.

I show you this picture not for any quality of the picture, but only to showcase the "Sprouts".  Amie loves her "Sprouts" as she calls her little hair nubbins.  (Should they remind me of Miley's hair nubbins? Why do they?  I don't know)  When she takes them out, they produce this completely obnoxious explosion of hair at the back of her head.

She is not at a "cute" place with her hair.  But she is enormously cute.

This is the current state of Amie's smile.  Her eyes are sort of committed to it.  Her mouth?  IT'S A VAULT!  NO SHOWING OF TEETH!

But I really think she's trying to smile, and am willing to give her a 7.5 on the smile.  Russian judge?  4.3?  Whatever!

Ok y'all.  Time for me to sleep.  I'm out!

Ready...Steady....GO!

Amie's been using the British version of Ready, Set, Go for a while now, instead saying Ready, Steady, Go!

Not sure where she picked it up, but it's quite cute and really unique.

She's also been watching a bit more TV as of late, having gotten sick twice now in the last month.  The show she's gravitated towards is Daniel Tiger, which we quickly figured out is a cartoon version of the friends from Mr. Rogers.  It's really cool.  Katerina Kitty-Cat, Daniel Tiger, and all the other friends that Mr. Rogers used to rock out back in the day.  He (Daniel) even changes into a sweater and switches his shoes when they start the show.  Check it out, oldsters!

Chemo round 2 starts today.  They were supposed to start it yesterday, but apparently Mondays are really hectic in the clinic.  We are really wondering how things are going to go with this time. (She has a mask on because she has a cold, btw).

When we started a year ago, Amie was a baby...  she was very compliant at all times and had no real idea that anything major was going on.  But we're a year older now, and she's a hella lot more aware of the world and what's going on with her own body.  She sees her sister's hair growing, and sees that she has much shorter hair.  Just that awareness is pretty major.  If she loses it all again, she's going to be seriously devastated.  We'll have to wait and see.

Here's what we know/ the plan thus far:

• Shel and Amie will be going into the infusion clinic at Mott each day to get her dose of intravenous Chemo.  Assuming that goes well each day, and she's not feverish (she has a basic cold right now), they'll send her home each day.
• Once that first week is done, we have a week of oral chemotherapy to follow up with the intravenous.  This will start approximately 15 days after the intravenous is done.  
• They will repeat this process one more time, and then do a follow up MRI.
• If that MRI shows a decrease in the tumor, then they will schedule a brain surgery to remove the lesions/tumor that are showing up.
• If that MRI does not show a decrease in the tumor, they will switch to a new chemo protocol to attack it in a new way.

Walked into work today and saw a Co-Worker wearing one of Leia's "Sleep Fights Cancer" shirts today.  I often forget, somehow, that we've got a great team of people offering help, helping in small ways, and overall cheering us on.  I know that it's obvious that we do, based on the responses when we post things on FB and the number of blog hits that we get....but it's also amazing how....separate you sometimes feel in all of these times.  This cancer, this sickness is so damned overwhelming, it just swallows all the rest of the conversations that exist around it.

I find myself being in small groups of people at work and forcibly telling myself NOT TO TALK ABOUT CANCER...because who the hell really wants to hear about it, and who the hell really wants to talk about it?  To quote a co-worker at McBride "It fucking sucks, and that's just about all you can really say about it".  (Sorry for the swearing, but I believe the word is appropriate to the conversation).

Yes it does kind sir, yes it does.

...and ya know what else really sucks?  Each night at dinner, we try to do what we call "Grateful", in that we all talk about what we are grateful for, anything.  Amie ALWAYS talks about whatever food she's recently eaten that makes her heart happy.  Shel and I mention something that filled our buckets.

Anya?  She always says that she's happy that Amie's not sick anymore, and that we haven't had to go to the hospital recently.  How crappy is it that her wishes/gratefuls are about her sister, and not her own life, and that the one thing that she really wants is no longer happening.


So, I've depressed myself writing all of this, but hey, maybe some of you are still reading.  :)  Things are fine, things are great.  I've got an AMAZING group of students this year, and the curiosity/affective feedback, and overall awesomeness of my students crashes like waves on me each day.  Lots of good stuff is coming from the medical side of things, lots of good stuff going on at school.  Shel and I are totally hanging on, and Anya loves the crap out of her school and the experience she has there each day.  Tons to celebrate.

It's just amazing at the power of this illness to suck the color out of things.

Round and Round we go, the 2nd time is always better than the 1st...right?

Just got off the phone with Dr. Robertson, our Pediatric Oncologist.

They had a 2nd look, with a new team of radiologists, and have now concluded that it is in fact a recurrence of the same cancer, but with massively slow growth.

They believe that it's actually growing off/near the original resection (surgery) site, in the 1-2% of the tumor that was left behind.  They couldn't remove the entire tumor because it was wrapped around a vein, and near the brain stem...and believed that the possible complications of the further resection far outweighed any possible benefits of it.

So, they're going to re-start Chemotherapy on Monday the 16th. The original surgery was on the 14th last year.

The regimen that they're going to use is quite new, and they're hoping to see some good results.  They'll do the oral outpatient + infusion clinic therapy for two months, and then do another scan to see if it is showing any results.  

She said that she has consulted with Dr. Maher, the original surgeon, and he said that the lesions, as they are calling them,  could be removed with surgery.  However, if we removed them right now, we wouldn't know if the chemotherapy was having any effects.

But Dr. Robertson was quite optimistic on several fronts.  The tumor has not spread anywhere, it is recurring near the original site, it is SUPER slow growing, and isn't that big yet.

Not sure if we're numb to the idea, if we are already prepared for the idea, or if this is just one long marathon that we're conditioned for...but we're taking this well.  Maybe we've just been walking on broken glass for so damned long that we're used to the cuts/have tougher feet.  Who knows.  I'll tell you in a few months.

 On a lighter note, here's some pictures from round our world as of late, for the Non-FB types:

Amie is quite the hipster with the Faux-Hawk.  :)

Anya made my parents cards for Grandparents Day.  This was a rough draft of my Dad before she finished his mustache.

This is my Mom and Anya.  :)

This is Anya's getting ready chart in the morning with Mom.  Her illustrations are always amazing to me.  Far better than I could do at 40.

If Anya does really well in the mornings, she wins "Icey Bucks" that she can spend on things.  She chose a movie night, in which our bedroom became Theatre 12.

So........

....the MRI is showing some "areas of concern".

What does that mean?

Here's what we know:

• The MRI is showing some areas on the outside of her brain that are changing.  This is not necessarily cancer, but is not good.
• The changes may be some damage that the brain has suffered through the intense regimen of chemo, but that is not overly likely.
• Shelley sat with our Oncologist, Dr. Robertson, and looked at the MRIs, and compared the last one to this one.
• The changes are indicative of what happens with Medulloblastoma, specifically that after it is attacked at it's primary growth point, that it sends out cancer cells to try to take root elsewhere.
• They are going to wait three weeks (the first week of school!) and then do another MRI and a Spinal Tap to look for cancer cells.  Once that comes back, they'll be able to compare the two scans and see what is what.  
• Once they do the next MRI, we'll know if, what, when, where, and how things are going to progress.  Until then?.......

So now that I gave you all of that, here's some pictures for the non-FB people of the last 5 weeks since we posted on the blog.

The Potter Park Zoo in Lansing does not WOW like others, but it has some really cool parts to it.  This is one of them.  It's a bird house the size of a good sized pole barn, and filled with HUNDREDS of parakeets and other small birds that I ought to know the name of, but honestly have never cared about.

Amie LOVED feeding them, and Anya as well.

Shel goes to the library with the kids on a weekly basis in Howell, and this is one of their excursions.  They had a foam table set up, and who the heck wouldn't want to play in that.

This was a picnic in the park a few weeks ago with Marci, Lilly and Matthew in Howell.  Anya looks like quite the super-STAR!

Shelley bought a Travelzoo package to The Henry in Dearborn.  It was all fancy schmancy, and something we could never afford/purchase, but it was stupid cheap for the room $100 of dining credit, and 4 tickets to the Village.  We had $17 credit after dinner, and got a pint of ice cream delivered to the room for dessert.  The girls were beside themselves for delivered dessert, and eaten in bed to boot.

This picture was taken today, for dinner.  Amie looks great, sounds great, and acts no different.

Just have to keep hoping that's the case.

No need for lots of messages telling us it's going to be ok.  We're doing alright.  If nothing else, we've got stamina and patience.  We're just really, really disappointed in all of this.


PS.  The blog now has over 100,000 views.  How freaking crazy is that?!?