Buckets and Buckets and Buckets...of information

Greetings All, 

Where's the one place you want to be on a Friday night?

At the Emergency Room you say?

We'll then.....YOU'RE THE WINNER OF YOUR HEARTS DESIRE!

Ok, turning off the sarcasm firehose.

When Anya came home from Grammie's house on Tuesday, she had a good cough, one of those deep in the lungs cough.  Of course, that meant that it was a ticking timebomb until Amie got sick.  Ding Ding Ding!  She's sick. Woo!

A bit of a recap of our week:

Anya's school regularly has culminating events at the end of each major unit of study.  These events showcase the student's learning and focus, and also help them develop presentation skills to adults, help cement learning, etc.

The students picked animals, and then worked in teams to do research on their common animals.  Anya really learned a lot, and is gaining so much confidence in her intellectual abilities, which we can all agree is a massive part of success.  Good stuff!

(This is not shameless pandering, I swear) We cannot possibly be thankful enough to the two teachers who take care of Anya each day.  These two teachers provide such a warm, welcoming, and safe place for Anya to go each day, and give her the shelter from the storm of all this crazy cancerland stuff.  I wish we had something to give them that would equal our gratitude, but this will have to suffice at the end of this Teacher Appreciation Week. (Thanks Churchill and Simon, you rock!)

Amie, as usual, is bouncing back as quick as ever.  Other than the stitches and pressure sores, you'd never know she's not even 2 weeks out from her surgery.  She's doing fantastic.  

(a little comb-over action to cover the stitches...works wonders!)

We are silly.  Silly we are.  In a train. In a car. On the floor?  Silly some more.

My new-found relative/co-worker bought the kids big old cookies.  Anya loved it.  This is while we were on the way to Grammie's tonight.  

News on the Cancer:  

• Amie has muscle cancer, in her brain. <Rhabdomyosarcoma> There's virtually no precedence for this, and they're really not sure how it's happening, but they've now DNA typed her tumor and re-examined the biopsied tumor slides from both surgeries.
• What this means is a new track of treatment, away from what they were doing for Medulloblastoma, and trying to fight it like Rhabdomyosarcoma.
• We're going to start 5x weekly focused radiation treatments starting just after Memorial Day.  For each of those days, she'll have to go to Mott, be anesthetized, be given 15-ish minutes of focused radiation on the tumor site, and then brought back out of anesthesia.  Those will go through Mid-July.
• They'll probably also be doing successive rounds of chemotherapy in there as well.
• Dr. Robertson's exact words were that a diagnosis of Rhabdomyosarcoma would be a very good diagnosis for a kid....if it was where it was supposed to be.  Since it's not, they really have no ability to guess what's going to happen going forward.
• Yep.  That's about what we thought.

EDIT:  This week also saw tons and tons of Amie recovering her walking and movement skills.  She's healing quickly, and also saw PT and OT.  We've been trying to get a video of her doing all this stuff, but she hasn't been about that yet.  We'll get that going when we can.

Three things fundraiser related, for those of you who wanted to know, as I've gotten lots of requests for information:

• My sister set up a site that allows people to donate money to us.  Here's the link.
• My amazing, generous, kind, and giving former student <Jennifer Overholt, yo> who ran the bracelet drive back at first diagnosis is organizing a Buffalo Wild Wings "Dine-to-Donate" event, where a percentage of the food bought at the event is donated to us.  Provided you show the flyer (save it to your phone and show it, or print it out and show it), a portion of your bill will be donated to us.  As you might see, the date for this event is June 4th, and will be at the Buffalo Wild Wings on I-94 and Huron St, Exit 183 in Ypsilanti.  It's on the SW side of the freeway, directly next to the freeway.  See the address on the flyer below.

• The Link Fund, a company that produces promotional bracelets for fundraising is sponsoring an event on July 13th with a couple from "Teen Mom" and another from "Teen Mom 2".  They're going to do a book signing and a meet-and-greet at the Brighton Mom-2-Mom sale. They solicited stories from families in the area who are struggling, and we submitted our story.  Amie, as usual, charmed them, and they chose us for this event.  This event will be on July 13th, and we'll keep you up to date on it as it gets closer, in case you want to check it out.
• 

More to come on all of that as we know it.  

Whee! Friday night, party time! WOO!

Dr. Gyllenhaal, I presume?

As I've mentioned, Amie has not had much desire to get out of bed, much desire to sit up, or even much desire to raise her head off the pillow.  Anytime anyone would even suggest that she do this, she would start to whimper, say it was going to hurt, and really protest with alternate courses of action.

Me:  Amie, we're going to have you sit up a bit, ok?

Amie:  <whimper> No, it going to hurt.  How about we watch more shows instead, Daddy? <whimper>

As you might imagine, with that performance, we pretty much let her lay on the pillow and heal.

So the Neuro doctor came in...

Wait a sec, I need to describe said Doctor.

He's our Neurosurgeon Fellow*...I'd guess he's around 27-29, looks like a young Jake Gyllenhaal.

Yeah. He looks pretty much like that.

So anyway, a certain nurse friend came in the other day and was watching the nurses watch him.  She was laughing at the hungry looks that the other nurses were giving him, while commenting that she'd been a nurse nearly as long as he'd been alive.  I laughed at all of it, as it was immensely entertaining to be thinking about something other than cancer.  

It also made me think of a conversation I had with my sister when she was here the other day and how she always wonders which Doctors and Nurses are hooking up with each other, and that she had seen way, way too much Grey's Anatomy, and it had ruined her.

Where was I in the story?  Dr. Gyllenhaal came into the room, and needed to inspect Amie's incision (which looks terrific btw).  We needed to get her into sitting position to do so, and we did it, and she didn't freak out.  Good start!

An hour or so later, a Physical Therapist (PT) came in, and wanted to work with Amie.  She was not about it at all, but he quickly won her over.  He started with her in her bed, won her trust, got her to a sitting position with me in the bed sitting behind her.  

Within a half hour, we were out of bed sitting on the couch throwing a ball, and then walking across the room, and then walking across the entire unit.  Don't get me wrong, she has no balance.  She still has no ability to walk unassisted.  She needs someone to hold her hand to walk anywhere.

She only needed that boost of confidence to get back on her feet and she was off to the races.

We can see massive improvement from her abilities pre-surgery in her leg movement and hand coordination.  Lots of stuff to work on, but definitely good stuff.  Good, good stuff.

Later on we had a family get together with Uncle Kris visiting to bring some food and news of our car repairs that he's doing for us, as well as my parents bringing food, and seeing Amie since they're back from Florida.  

Amie took a trip to the party on the 12th floor in honor of Cinco de Mayo!  Woo!

This is the picture of a miserable child, no?

So much tongue, many bows.

With all the improvement we saw today, I'm guessing we'll get out of here either tomorrow or Tuesday.  Good stuff.  Woo!

*I don't really know the differences between Doctors who are interns, fellows, or residents.  He's an MD.  He's a "real" doctor.  He knows his stuff.  That's all that matters to me.

Okay? Okay.

This is going to be a long post, so to quote our friend Kate, you might want to get a cup of coffee.

A few days worth of information to catch up on, before the fun stuff.

First, tumor stuff:

• During the first surgery in September of 2012, they cut out the majority of the tumor.  After the surgery, they take slices of the tumor to identify exactly what it is.  They then flash freeze the remainder in case they need to look at it later.
• Those slices should identify exactly what type of tumor it is.  For example, going into the surgery they thought it was going to be a JPA, but the identification of the tumor came back as medulloblastoma.
• However, about two weeks ago, just prior to the surgery, the DNA mapping (this is extremely new stuff, and we got into a clinical trial) of the tumor came back extremely abnormal.  The DNA of the tumor sample that they did was NOT medulloblastoma, but seemed to be a variant of rhabdomyosarcoma, a tumor type that exists in muscles, and not brain tissue.
• What that means is that the original tumor might have been a combination of tumors (think two skeins of yarn woven into one scarf), might be a mutation of the medulloblastoma into something else, or might be something else altogether.
• When they did this past surgery, there were two tumor sites.  They resected one site easily, and the other presented far more difficulty due to involvement with blood vessels and it's location. However, once again, the two sites seemed to be two different tumor types.
• The identification of all this variance of tumor types is something that all the researchers seem quite interested in, as you might imagine, so they're pushing Amie's new DNA mapping through the system right now, to see what type of tumor was there that was growing so quickly.  We should know within the month what they think they're dealing with.
• As Dr. Maher said to us post-surgery, even 5 years ago they had very broad categories for these types of tumors.  As they get to know more and more about these types of tumors, they are understanding that there are many more subcategories for each of these tumor pathways.  With those subcategories come different treatment types, and different behaviors.  

All of the above is not good information.  But it's better to have that information, than not have it.  We'll see where it takes us as we move forward.

Thursday was a day of healing and rest for Amelie.  Not much went on, other than watching a LOT of shows. They clamped off her intracranial valve and monitored her for 24 hours to ensure she wasn't in danger.

Friday morning (this is all me retelling the story through Shelley's observations, so bear with me) the team came to remove the valve.  First they had to remove the bandages, which gave Shelley a view to a massive pressure sore that was on her forehead.  Amie, being the trooper that she is had not complained about it, and has not since.  Also, she saw that they had shaved quite a bit of her hair for the valve placement.  

I don't know what it is about the hair thing, but man o man does it make me really, really sad.  I know she's going to lose all her hair again (or more...) through the next set of treatment, but the loss of hair makes it so, so much more real.  Anyway...

During the valve placement, they leave a stitch in place so that they can remove the valve and quickly close the wound.  Apparently when they did this, the CSF (cranial-spinal fluid) started gushing out of Amie, and would not stop with pressure.  They needed to put more stitches in, and needed to do it at that moment.  Without any numbing agent (as it would take valuable time), they proceeded to put 2 stitches in Amie's head.  According to Shelley, our little pain sponge barely even complained as they took 20 minutes to put them in, as it was harder for some reason.  

Shelley said afterwards that Amie's stoic tolerance of that procedure earned her a lifetime of watching however many shows she wanted.  I think I'm on board with that.  Yep.

Later on in the day, after Anya got out of school, the Adlers brought Anya up to the hospital.  

Much joy was had, much sister bonding.

This last picture is once again proof that they are my children.

...and also proof of how much improvement Amie is showing.

Friday also brought out the Mama Bear in Shelley.  The neurosurgeon team rounded on Friday and told Shel that she was going to be discharged later on that day, as Amie wasn't in emergent medical need for hospitalization.  She was extremely unhappy with that, as we had still not seen Physical Therapy nor Occupational Therapy (PT/OT from here on out) yet.  They said that all of that could be handled on outpatient basis at Milestones.

Shelley pulled out her Mama Bear claws and let them know that if her daughter has still not even sat up on her own, that putting her in a car seat a few minutes later was completely ridiculous, and that they needed to see PT/OT before she could be discharged.  Dr. Robertson was called in on the conversation and agreed.

So, we're going to be there through Tuesday or Wednesday, as there is no therapy on weekends.  Shelley wins!  or at least Shelley wins this, and has to stay at the hospital through then.  Ya see, I got some bug in me, and got banished from the hospital, so she's there by herself all day Friday and Saturday.  Good times, good times.

Now, for the final piece of magic:

From the start of her treatment, Amie hasn't really been overly fond of having pictures taken of her.  When you asked her to smile, she would often scrunch up her face.  We, of course being the creative people that we are, called that her "Scrunchy Face".  See below for evidence.

A good friend of mine went to a book talk/conference with Author John Green, of whom I've talked about endlessly on here, and whose book "The Fault in Our Stars" is about to become as massive movie on Anya's birthday (June 6th).  Seriously, all of you should read the book.  Now.  We'll wait.

Anyway, said friend (you rock Lindsay!) got to meet John Green, and asked him to do a scrunchy face for Amie.  He did it.  She put it out on Twitter and FB for me.

I know some famous guy whose words mean so much to me, and mean so much to my students doesn't mean a damned thing in the big picture....but it made my night, and day.

Hopefully y'all enjoy it as much as I do.  Now go read The Fault in Our Stars and cry your ever loving hearts out.

Okay?Okay.

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.

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.

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.