Wednesday, April 30, 2014

Welcome back!

Wrap Up post of Day 3:

I took a picture like this almost two years ago, and thought many people would like to see the view from the PICU again.  This is facing NE, and the Architecture Building is in the center top right.

Nice view, eh?

As I noted this afternoon, this was a day of recuperation, healing and patience.  I spent a LOT of time in Amie's bed, comforting her and watching her watch Strawberry Shortcake.  (HINT:  I fall asleep a lot).

But as the day drew to a close (and we ate good food delivered by a parent of a student. Woo! Thanks!), Shelley and I started seeing "Amie" come through the cloud of pain.  She played around with me, tickling and being herself.  Giggling, and making jokes.

She started making a craft with supplies provided by Auntie Beth. She lay in bed, staring at the ceiling, relaxing and listening to music.

We also got a gift package from a good friend with a bunch of hair accessories (acknowledging completely what's to come...) and Shel put on on Amie's "hat".  The following picture (that Shelley took, not me!) was beyond classic, and our first real sighting of Amie being back.  I had to share.

Hi Amie.  Welcome back!  We love you.

Last week on...

I felt like I needed to give y'all an update on things, as I've just kinda left you hanging.

A typical day in the PICU:

  • 7am(ish):  The junior level main doctor handling your case (Neurosurgery, Oncology, Hematology, etc) comes in and talks to you to ask you how things went overnight.  They ask you specifics, and do a general look-see about Amie's body.  They do some simple tests with her hands, feet, and eyes.
  • 9-11a(ish):  The full Doctor team comes in for what they call rounds.  The junior doctor leads the session, giving them their vision of what's the current situation, and where the treatment will go for the next 24 hours.
  • Amie has a 1 on 1 nurse, for most of the time.  They sit right outside her room in this area that they can see directly in her room.  If you need something, or one of the alarms goes off, you can just give them a hand sign and they're in the room.
  • The nurses come in and do vital signs most every hour.  That's blood pressure, temperature, check her ICP level (intra cranial pressure) to ensure that she's not bleeding internally, and checking her eyes for dilation.  If she's sleeping, they might delay for an hour, but there's a lot of waking up and testing.  
  • We order food from room service.  We go get food from the cafeteria.  We eat the food that people have brought to us.  Food is a surrogate for life and joy.  Eating is FUN!
  • We're sleeping on a bed/lounger in the room.  When we can.
  • There are laundry facilities and a shower as well.  We get stinky.
So, with all that said, how's Amie doing?

Here is Amie waving.  Her left hand is rocking the world right now, and has become her dominant hand.  Prior to the surgery, we were noticing a LOT of tremors in her right hand.  They're just as bad or worse right now.  So she's using her left hand, or just opting out of using her hands altogether.

Additionally, she's still got a lot of "poofiness" in her face, as we like to call it.  I'm sure those of you with medical training could explain to me why the left side of her face is more swollen, but we're just calling in poofiness.  It went away quickly last time, and we're assuming this time it will as well.

She's talking, reporting her pain, "feeling lonely" in the bed by herself, and asking for people to come lay with her.  She's watching a vomit inducing amount of Netflix kids shows right now, but we're not objecting.  We keep trying to push her towards educational shows (Super Why!, etc) or at least slower paced shows (Calliou, Kipper, etc) to help her sleep...but she's got a crack-like addiction to Strawberry Shortcake and Friends.  (ACK!)  There could be worse problems, right?

But for the most part, this is what we see.  Slumbering Amie. Snoring Amie.  Healing Amie.

More when we know it.

Tuesday, April 29, 2014

Rebuilding normal....

Good morning everyone, and welcome to the sleep deprivation game!

We've got two contestants on today's show!

Just got done talking with the Neurosurgeons.  Amie is looking great, according to them.  She could grasp and manipulate her pacifier, can talk and interact with verbal cues, and has been repeatedly asking for things.  All good things.

She's got quite a road to recovery over the week, with an MRI at 2pm being first priority to make sure that things look as they're supposed to in her head.  They're not expecting anything to be amiss.

Talking to Dr. Maher, they said that the resection went quite well.  He said he got all of the smaller site, and it came off of the brain without much fanfare.  For the other site, which he knew would be far, far more difficult, he was able to remove around 80% of the tumor.  

Just to restate this from previous blog posts, the surgery was not intended to cure her of anything.  It was a measure to remove the tumor as much as possible so that there could be more time for other therapies to take hold and destroy the cancerous areas that remain.

They sent off the chunks of tumor to be analyzed as she heals up, so that Dr. Robertson and team can formulate next steps.  

They said to us last night that the most optimistic steps have possibly run their course, and it's probably going to be time to use some more intensive steps that have possible side effects.  More on that later.

Shelley slept a good portion of the night in bed with Amie and sang her songs.  Amie just wants to be rocked, but she's way, way too fragile for that as of yet, with so many tubes coming out of various places.

Amie's poofy, she's ornery, and overall quite uncomfortable.  But she's Amie. She wants hugs from Daddy, rocks from Mommy, and songs from anyone.  Good stuff.

More as we know it.

Monday, April 28, 2014

Caffeine...the other Vitamin C.

Just got done with a long conversation with Dr. Robertson (oncologist).

Here are a few of the things that we learned:
- Amie did well during the surgery.
- Dr. Maher was able to resect all of the non-threatening tumor that was visible, as well as a significant portion of the threatening tumor.
- Dr. Maher (prior to starting) said that due to the behavior of medulloblastoma, he was not going to be "heroic" in his removal of the tumor, because follow up therapies were going to be absolutely required.
- They went in through the same incision as last time.
- There was a slight problem with a bleed during the surgery, so they were less aggressive than they had originally planned because of that.
- They are closing Amie up right now, and will be another few hours until we get to see her.

We are thankful for everyone's thoughts, prayers, wishes of health and happiness, good vibes, food deliveries, random jokes, and all other offerings. 

This is Amie's balloon she brought to Big Bird 11 days ago...and is still here.  Such good stuff.

Just an update on the big board....Amie's still the winner!

This is what the pediatric surgical waiting room looks like at the end of the day.  Earlier?  Jam packed.

More later when we know it. Like the T-Shirt I saw earlier, Caffeine...the other Vitamin C. 

Sunday, April 27, 2014

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.

Tuesday, April 22, 2014

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.  :)

Monday, April 21, 2014

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.

Saturday, April 19, 2014

Tippy, Tippy, Tippy.


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.


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


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!


Monday, April 14, 2014

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 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.