Arrrrrrgh. One eye that's good, and another that's covered

It's been a busy week, that's for sure.

My last post detailed that we're on our way to another brain surgery, and that it was scheduled for Tuesday.

Guess what?  It's tomorrow instead.

I posted this to FB, so my non-FB people are learning about this a little late.  Sorry.

Anyway, back to it!  

We decided to have a little getaway to Kalahari on Thursday and Friday of last week.  I didn't take many pictures, because...well....  I'm a klutz.  A bona fide klutz.  A ruiner of things.  As my kids would say, I'm a breaker and Shelley is a fixer. (although both kids will tell you I can fix my bike, the iPad and breakfast).

I know this about myself, and as Isaiah Thomas would say, "Water and Electricity Don't Mix!", so I left my phone in the room most of the time.

However, I did take one picture that will give some of you a chuckle.  This is what it means to travel with me.

Not included in this picture were the two iPhones as well.  Nor any of Beth's family's stuff.  Just mine.

Since getting back from there, Amie's been pooped as heck, as I imagine tumor is doing a good bit of damage on her.  I've had two sessions like the picture below in the last two days with her.  Good stuff though.

Her walking has deteriorated past anything I could have imagined as well.  The tumor must really be wrecking stuff in there.  As of tonight:

• She can't walk without bouncing off all walls.
• She can't stand by herself.

What does that leave her?  Crawling.  She was crawling "like a crab, Daddy" or hopping like a bunny on her knees all over our condo tonight.  Yep.  Cute AND depressing.

To quote a friend of mine today, "I mean, yeah, my Mom is old and I can understand when she can't do something.  But your 3-year old daughter, man...when she can't do something that's the stuff that freaks you out."  Yeah.  100%

So, Amie asked me today to just take her into our bed and snuggle her.  Shelley was packing, and Amie felt "kinda lonely" watching shows on the iPad in her room.  So we went and snuggled.

Mid-way through that, she covered one of my eyes and said, "Look Daddy, you're a pirate.  You've got one eye that's good, and one that's covered."  We played that game for a bit.

As I sign off for the night, and probably until after she starts the surgery tomorrow at 10:30a, I give you my best pirate look.  One eye that's good, and one that's covered.

Good night little one, I hope to see you tomorrow as you wake up.

Details, Details...

Just got off the phone with Dr. Garton at Mott, and everything is scheduled.

Here's what we know:

• Surgery is scheduled for next week, Tuesday April 29th at 7:30am.
• It will be a LONG surgery.  Last time she was on the table until 7pm or so, if my memory serves me right.  I need to go re-read the blog posts from then.
• Dr. Garton might let Dr. Maher, his peer and the Amie's original surgeon, do the surgery.  His words, "It's sometimes easier to let the original person do the surgery because of the particulars of their handiwork."
• We'll be in the PICU at Mott for 2-ish days, and then moved down to 7E for follow-up recuperative care.  Approximately 5 days of hospitalization should be planned.  Adjust that up or down based on recovery particulars.
• Anya will stay at Shelley's parents starting on Monday night, and through the rest of the week, to give her a stable environment as possible.

One last thing before I go off to my next errand...  I wanted to physically show you how well she's doing in light of all of this.

As a final bit, thank you to all the people who have emailed, sent private FB messages, texts, or called. As you might imagine, this is all moving fast, and the support of so many of you is really appreciated...more than you know.  Thanks.  :)

Amie's surgeon is...... Bill Nye the Science Guy?

Dr. Garton is the Neurosurgeon we met with tonight, as well as Dr. Robertson, our normal Oncologist.

  

He reminds me so, so much of Bill Nye, in a really, really, great way.

I say that, apropos of nothing, but just to lay out the feeling you get when you talk to him.  He's obviously a teacher and a doctor...he wanted to educate us as to why and how he made the decision that surgery needs to happen, and needs to happen soon.

He started by lining up MRI scans (which, incidentally are insanely cool), of Amie from the same view, across time.  He showed us the two sites that were of a concern last August, and then sped them forward through each scan.

The scan we had in January showed two sites.  One on the outside of the cerebellum up against the skull that had grown minimally, and one other site, much deeper in the brain cozied up to the brain stem.  The deeper site was negligible in threat, and they weren't even sure it was tumor tissue.

This time?  Holy moly.

From January 2014 to April 2014, the deep site has gone from the size of a.....flattened pea to the size of a golf ball.  As this has happened, it has destroyed good cerebellum tissue as well as pushed other structures around in the brain, harming their proper function.

So.  What do we know after this meeting?

• We will be having brain surgery within the next week.
• Amie's ataxia (meaning lack of coordinated muscle movements) is going to get worse as the cerebellum (the part of the body concerned with such things) is being eaten and pushed around by the tumor.
• The surgery will not be easy, because the tumor is well into the interior of the brain, which might mean some good tissue will be harmed in the pursuit of the bad.
• The cerebellum is remarkably resilient, because it's all about learning to overcome obstacles, and she (provided things go well) will regain most/all of her movement issues once the threat is gone.
• The surgery is not intended to cure anything, but to buy us time to intervene with other therapies that will attempt to restrict/destroy the tumor.
• Left alone, the tumor would grow into the brain stem quickly, and that would be terminal.
• Amie has the ability to charm the living pants off anyone.

So that's what we know for now.  They're going to talk about her needs tomorrow morning with their teams, look at surgery availability, and get back to us tomorrow about the time of the scheduled surgery.  It might be as early as Wednesday, or as late as next Tuesday.

When we know, I'll put it up.

Thanks, y'all.

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...