Tippy, Tippy, Tippy.

So.

For the last two weeks or so, Amie has looked drunk.

Lots of tipping over, lots of wobbliness.  Lots of falling.  LOTS.

We knew something had changed, but didn't tell anyone for fear of alarming anyone.



So.

There are two tumor sites from before that they've been watching.  One has not changed.  One has changed significantly.



So.

We're heading in on Monday for them to look at Amie, give her some specific tests, and most likely schedule another brain surgery to resect the tumor site to prevent any specific threat to the remainder of her cerebellum, and possibly her brain stem.

Nothing needs to be said, just making y'all aware of where we are at, and what's on tap for next week.

Good thing is that I'm off work all week, and if we have brain surgery this week, I'll be able to be here all the time, and not just part-time due to work, and the ever-present need to earn money and provide insurance.

I did promise some pictures, so here are a few from this week!

 

This much I know is true....

A long time ago, in a life I barely recognize, I read a book with that name.  I remember, vaguely, that I enjoyed it.

It seemed an apt title and frame to this post.

I've been crazy busy with work for the past 2 months, so I've avoided blogging.  Hopefully, y'all got some snippets of Amie's journeys through FB.  For those who aren't on there, I apologize.

Here's a list of the facts I know to be true:

• Amie's counts have been horrific for most of the last 2 months, and we've kept her in home for most of that time.  Middle of winter, middle of the worst winter I've ever lived, and we didn't leave the house much.  Yeah.  I'm a bear.
• It's sometimes easy to forget you have cancer as a house guest.  When there are no gastro-intestinal explosions, potty training is working well, hair is growing, and you go to work each day....you can actually forget that your daughter has cancer for a few spare moments.
• 8th graders who are away from home can act in ways that truly impress you, and make you want go all Moses and part the Red Sea for them.  Others?  You want to chuck them off the top of the Washington Monument.  Most of them are great.  2%?  eh gads.  Of course, if 96% of the kids you take to DC with you are great, you win.  win. Win!
• As Ben Franklin said, house guests and fish grow stale after three days.  What about 18 months?  This cancer stuff sucks.
• A 3-year old and a 6-year old can be best of friends and then utter enemies minutes away from each other.
• Amie's counts were out of this world last week, and we brought her out of the "bubble" that we keep her in.  To the Pool! To the Park! To family! TO ANYWHERE!  
• We've got our next MRI on Friday.
• Spring Break starts on Friday.

I'll do a picture post in the next few days.  Just wanted to spend a few minutes talking about the state of things.

Hope y'all are in shorts, sandals, and enjoyin' the sun...whenever it next appears.

WHERE IS SPRING? I NEED SPRING!

Greetings All, and hope this freezy cold winter hasn't driven any of you more insane than I.

Here is my pledge:

• I will not complain even once all summer about how hot it is, no matter the heat.
• I will spend enormous amounts of time outside this summer, with my children, soaking up the sunshine.
• I will ride my bike as much as I possibly can this summer.
• I will become the lizard that I am inside, basking in the heat.

I am so done with winter.  

Anyway, remember on the last post when I said that we were heading towards the next round of chemo, back near Valentines Day?  Well...  we haven't started it yet.

Amelie's platelets have been really, really low.  Like crazy, abnormally low.  They have always bounced back decently fast after a round of chemo, but this time it didn't.

They were unsure as to why, as it could be her body developing leukemia (not good!), it could be her body just responding slowly, or interactions between the chemo and the antibiotics she takes every day to keep her infection free.

So, we've waited. 

The numbers have risen slowly, and they're confident that it's not leukemia. (GOOD!)  They discontinued the antibiotics she's been on for the last year, and are switching over to a new one that is inhaled, and lasts for 3 weeks.  Amelie did not like that process yesterday, and we'll try again on it next week.

They're looking to start the next round of chemo next week some time, it looks like.  Who knows.  

Our next MRI is scheduled for 3/31, although I have my doubts if they'll do it that day because she'll be mid-cycle on chemo that day.  

We didn't want to update anyone without knowing what was what, so we went radio silent for a few weeks.

For those of you who want to see, here are some pics of the girls as of late.

A former co-worker at BHS is pregnant with twin girls, and it looks like they're going to arrive early.  

I took this picture of Anya with her friends dressed in her former preemie outfits.  I thought it was pretty cool to see the difference between what size she was when she was born (3lbs 5 oz) and where she is at now....and yes, she did fit into all of those outfits, and most of them were gigantic on her when she first popped out.

Anya is a budding artist.  She loves loves loves to create.

This was her making a bird's beak, and acting like a bird.  I proceeded to feed her worms through the hole.  At least imaginary worms.  We don't actually eat meat, silly!

This is how long Amelie's hair has gotten...she can do an elaborate ponytail scheme!

But she'd have to be pretty patient to leave it there.

More news when we have it, people.

Stay warm, and do a Sun Dance for me.  I NEED HEAT SOON.

Hey y'all. We're good over here.

Nothing much to report these days.  It was a quiet and peaceful month.

When we last checked in, we were about to start a new round of Chemotherapy that would require us to have a few nights of in-hospital stay, followed by a few days of IV saline hydration at home.

Amie weathered all of that just fine, and actually only needed to be hospitalized for one night, which went quite well.  

She breezed through her hearing test prior to the round starting, and even showed that her previous loss of hearing from a year ago was probably a false positive.  For those of you who didn't read it previously, the chemo that she is on right now (Cisplatin) is known to cause hearing damage.  No hair loss yet either, although that train hasn't left the station, so no gloating on that one.  Lots of opportunity with time and repeat doses.

So we're about to start that whole process again this next weekend, and we're in a MUCH better place this time around.

Shelley has gotten LOTS of time to decompress, get some balance, do some yoga, knit LOTS of stuff, and spend time with friends.

I've been doing a lot with college friends and our geeky pursuits, and seen a few really good movies this month.  Looking forward to the oscar races, big time.

Like I said, nothing much to report, but wanted to say hey to y'all out there and let you know that things are going well...everyone is as happy and thriving as we can hope to be in the midst of all of this.

A few shots of the girls to end.  I can't say how happy I am that Amie's turned out so well.  Her reticence to pose for pictures really drives me nuts at times...

Once more unto the breach, dear friends, once more...

It seems strange to me that I am quoting Shakespeare in the title to this post, as I usually detest Shakespeare.  I was made to memorize a soliloquy from Romeo and Juliet in 11th grade, and I've detested him ever since.  I have trouble finding life and spirit in the verse, and get distracted.  I've seen a few productions over the years, and I loved them.  But reading?  Meh.

Anyway, the quote was more than appropriate.

This is a "snapshot" of Amie that Shel got today.  I was chatting with Shel's Mom and Dad, turned my head, and she grabbed this.  Probably my favorite shot of Amie in a long time.  It's grabs her whimsy, her fun, and her impatience all at the same time. I think I'm going to print it for my classroom wall.

Anya went to Winter camp yesterday, and it was a complete opposite of last year.  She barely said goodbye to us, and raced onto the bus.  Of course it might have been because it was -1123123123 degrees outside at the time, but I'm sure it had something to do with how safe the idea of going away to this awesome camp was to her.

Here's a shot of her being a true version of herself.

We patted ourselves on the back a bit today with the idea that we had raised a kid who was so willing to go away from us for a few nights into the arms of people so foreign to her. (Ed Strzalkowski would be mad proud about that).  She's obviously having such a good time there, through the pictures.  It's great to know that she's got some things that are totally for her, outside of cancer madness.

So back to the picture above.  We had a "date" today, and it was very nice.  Let me explain my use of quotes there.  In previous years, our dates involved dinners, shopping, movies, yarn stores, brew pubs, hotel rooms, etc. etc.

Today?  We had free movie tickets from a friend (thanks Kristin!), a free Pepsi from a reward program, smuggled in popcorn and water bottles, and afterward a gift card from Panera (Thanks Michelle!).  We spent a total of $5 on our date.  I swear I'm not fishing for anything here, but our combined family income has taken a wickedly stupid hit in the last 2 years.  In 2011, when I was running student council and Shelley was working 1/2 time we brought in $98,000.  This year (I just looked at my W-2), we pulled in $44,000 with my paycuts due to budget issues at my school district, not running StuCo anymore, and Shelley no longer working.  We've done an amazing job adjusting to the $54,000 loss in income, but man... it's not easy.

We went and saw "Her", which was amazing.  I loved it.  Loved.  Spike Jonze totally scores again.  The movie would be a lot to handle for many of you, but was a great meditation on what it means to be in a relationship.  Shelley and I talked about it a TON afterwards, and that's not normal for the non-moviecaring girl.  I won't bore you with a review, as there are so many available online already, but it was good stuff.

Now to the new cancer plan, and the slightly good news.

This round, now that they know the cancer has not changed, they are going to try to up the game and really attack it.  Like old school attack it.

We started every other day Vorinistat today.
We started every day Accutane today.
We will start IV Cisplatin on Tuesday, with an expected 2-night stay in the hospital to make sure she's properly hydrated.

Cisplatin is the drug that causes hearing damage.  Yep.

We had a new hearing test on Friday afternoon, and learned that the hearing damage at the highest ranges that we were told Amie had suffered has not manifested fully, and might have been a false positive.  Good stuff there.

But either way, she's going back into the big leagues of Chemotherapy on Tuesday.  She's got a damned good chance of losing all her hair again, which makes me sadder than you can even understand.

To quote Shelley tonight, "She's far more resilient than you'd ever imagine", but I still am really sad for her.  She's been talking about her hair, and growing "ponies" for so long that the idea of it all going away again is just shit shit shit.  Of course, you all agree with me and know that.


More to come in the days ahead as we head back into the breach.  Rally forth my friends!

Is it February 2nd yet?

Why do I ask that, you might wonder?

February 2nd is Groundhog Day.

It's a silly holiday, really....but a great movie.  I haven't seen it in at least a decade, but I think it's time for a refresher, because we are caught up in it, for sure.

For those of you who have not seen it, a jerk of a guy gets caught in a loop, reliving the same day over and over and over.  Bill Murray, I love you.  Caddyshack, Meatballs, Groundhog Day, Moonrise Kingdom, Ghostbusters, Rushmore...I could go on and on.

MRI results came back, and there's no movement.  The tumor is "exactly the same as the last two MRIs".

Hmmm.

Good, I guess?

So what does that mean? It could mean...

1.  The tumor's growth has been fully arrested by the chemotherapy.  It's locked in a stalemate.
2.  The tumor stopped growing on it's own.
3.  There is no tumor, and just scarring from the surgery and chemotherapy.
4.  There's an alien living in Amie's head.

Shelley prodded quite vociferously on point #3, and they accepted that it is a possibility....just not one they currently think is a possibility.

The only way to really KNOW if it is cancer is to open up Amie's head and go biopsy it.  At that point, they would be just as good to just cut it all out.  Once they go in for that, the possibility of it going wrong is a risk.  They don't like doing anything like that unless the need is drastic, because the risk is drastic.  If something goes wrong in the operation area, it will go catastrophically wrong, by the way they describe it.

So we're in the proverbial loop again.

They're going to evaluate the case over the weekend, and get back to us on Tuesday as to the pathway we're going to take.  Most likely it will be tweaking the chemotherapy regimen and doing another few cycles of chemo and then checking again.

Other than that stuff, things are going as well as can be.  Shelley has decided it's high time to do some sprucing up of our condo here in Howell, and has been doing lots of touch up stuff.  We transitioned Amie into a bunk bed with Anya, and did a few changes to their room as well.  I'll go take pictures of all of that in the next few days and put it up in the next blogpost.

Shelley just got done knitting this.  Yes, she's that good.  No, I'm not allowed to touch it.

SPROUTS FOR THE WIN!

Night, all.

Namaste.

Happy New Years!

A good friend our ours, Sarah, gave us a "New Years Eve Party Pack!", which included a bottle of Sparkling grape juice, some poppers, and these moustaches and hats.  The girls were underwhelmed with the poppers, but loved the moustaches and hats.  LOVED!

We FaceTimed with the hats and moustaches to my parents in Florida that night.  

Did I mention that we celebrated the New Years on Paris, France time?  We did.  6pm on New Years eve is midnight in Paris.  Woo!

So a lot of people make New Years resolutions.  Massively world changing resolutions.

They're going to lose 50 lbs.

They're going to quit smoking.

They're going to change careers.

Us?   Naah.

We're setting our sights a bit lower.  We both agreed that we need to make the same resolution.

1.  Survive this.

2.  Stay married.

Both of the above might sound a bit grandiose/minimalist, but stay with me for a few.

Firstly, from what Shelley and I have read/heard, there's absolutely nothing more destructive to a marriage than a child's chronic illness.  Nothing.  She quoted me the number of 70% tonight.  70% of couples that have a kid get chronically ill get divorced/split up at some point due to the stress, carnage, erosion of the basic principles of the relationship.  

I totally understand that too.  We are so completely, overwhelmingly full of stress many days.  You can't take it out at work, you'll lose your job.  You can't take it out on the friends that are still around, you need them too much. You can't take it out on the kids, you're evil.  So...you take it out on each other.

HOW DARE YOU NOT EMPTY THE DISHWASHER!

It's silly, but we've gotten into fights like that in the last year.  It's like enamel getting worn away, the littlest things can drive a person crazy, and prompt totally inappropriate responses.

A nurse at Mott which we recently saw again for the first time in 9 months, who is my nighttime conversationalist, said much the same.  Her comment was that over and over she sees parents come in supportive of each other at the start of the illness, and by the end, they're split up and pulling separate (if any) shifts.  Totally understandable in how overwhelming it is, but sad as crap.

So, we're going to stay married.  

Also, we're going to personally survive this madness.  Not in the physical sense, really....just in the holistic sense.  I'm much, much better at this one than Shelley.  I am GREAT at advocating for my needs, but then again I'm the much more extroverted and assertive one in the relationship.  I'm great at letting her know when I need to roll some dice (D&D, not craps), shuffle a deck (Magic: The Gathering, not poker) or see a movie.

It's a lot harder for the introvert to do that.  

What does the introvert need?  This comic does MUCH better than I could to explain:

Got it?  She needs quiet, order, and home.

What does she get at home?  2 kids, cancer, me, my extrovertedness, and life.

She asked me today what she can do to be less frustrated with things (she used a different term, but I can't remember the exact word she used, and I'm sure as heck not going to wake her up to ask) and I responded with a few things. 

1. Go to Yoga every single Tuesday, Thursday and Saturday.
2. Tell me when she needs alone time, and I'll arrange it.
3. Stop trying to make everything so darned perfect, if possible. <not banking on this one, IMHO>

I can make 1 and 2 happen.  I'm useless for 3.  So I'll concentrate on 1 and 2.

I'm losing steam on this post, and it's been a hella long day, so I'll recap a few Amie things.

When I last posted on the blog, Amie was puking and pooping all over the place.  That continued and we ended up going to Mott on the 26th to get hydrated.  She was a sack of jelly when we arrived, and they had her hooked up to IVs for the majority of the day, with us cuddling at the hospital.  At the end of the day, with no pukes all day, but lots of diarrhea, they admitted us overnight for hydration and observation.

We stayed overnight, almost got caught up in the c diff cycle of hell, got release on good behavior, and battled the dehydration and diarrhea for the next 5 days.  She stopped the pooping on New Years Eve.  Woo!

We painted the girls' bedroom for a new refresh now that we got rid of Amie's crib and she's graduated into her new bed (next blog post) and some new IKEA hardware to manage their stuff (when Uncle Chad comes to help install it),

As a final note to things...I've received a lot of inquiries as to how anyone can help us.  I'm totally good.  If anyone wants to buy anything for us, get Shelley some yoga classes at her studio.

She loves the crap out of Spirit Rising Yoga.  It's the one thing that she loves doing right now more than anything.  Really and truly.

She goes to yoga, goes to Aldi's afterwards to get fruit, goes to Target afterwards to browse....whatever the heck she does, and comes home absolutely refreshed.  It's good stuff to fill the soul for her.

I've rambled enough for tonight.  Night all.