Friday, May 30, 2014

Snuggly bear wants to snuggle...

Greetings All!

I took the day off work today to help Shelley, because she looked like she was starting to develop cracks.  She's got all the burden of this most days, while I venture off to educate the masses, or do my darndest to try.  Shel's had a few massage gift certificates for quite a while, so I pressured her to allow me to take the day off work, let her get a massage, and have some time alone.  She relented.

I've had some people asking me about the fundraiser that the glorious Ms. Overholt has arranged next Wednesday.  Here's the details:

  • From 11a - 11p on Wednesday June 4th, if you go to Buffalo Wild Wings in Ypsilanti (B-Dubs, not BW3's as us old folks call it, as they dropped the 3rd W about 15 years ago...) and PRESENT THE PICTURE BELOW to your server, 20-30% of your bill will go towards helping us out with things.
  • For those of you less tech savvy, from your phone, click on the picture below, and then when it loads, hold your finger down.  It should give you the option of saving the picture to your phone.
  • From what I understand, we'll get 20% if the total diners presenting the flyer/picture are less than $2000.  If it's between $2000 - $3000, it will be 25%.  If it tops $3000, then it's 30%.  
  • The B-Dubs in Ypsi is located immediately off I-94 and exit 183 (Huron St.).  It's just south of the exit, right next to McDonalds.
  • I don't know if Shelley will make it to the event, and I'm nearly positive Anya wont.  However, I'll come by and hang out after work (3p arrival) for a while.
  • I've heard rumor that there are going to be gift baskets that people are bidding on as well.  Check out this facebook group for more information on the baskets. 
  • Need more information? Send me an email directly.

Amie spends a lot of time cuddled up with us these days.  This is a massive change from the way she's always been.  She's been a terribly snuggler, as she just wants to go go go go go.  With her being more tired/fatigued, we get a whole lot more snuggling.  It's a negative/positive development for sure.  I took this picture while she was snuggled up to me in bed the other morning.  Not sure why I like it so much, but I do.

I went and saw the new X-Men movie the other day, and really enjoyed it.  I've been a comic book kid for a long time, but generally only read them these days when a friend (DIRK!) loans them to me, as I know how addictive of a personality I can have, and I can only have a few addictive habits at a time. 

One of the characters in the movie is Professor X, a telepath...that is a person who can read and control other people's minds.  As you can imagine, the ability for this power to be abused is immense.  Good thing that the character is played by no other than Jean Luc Picard himself, Sir Patrick Steward.  <I recognize I'm on a massive geek-out here, stay with me please>.

Anyway, there's a part of the movie where the Professor opts out of his power, purposely giving up the ability to read other people's minds because it's become too painful for him.  Bearing witness to all the pain and suffering of all the people he can sense is just too much, and he'd rather not have the power at all.  At this point in the movie I'm totally crying, btw.

Anyway, he has an imaginary* conversation with himself from the future (I love geek movies), and tells himself the following message:  The greatest thing we can offer to those who are in pain is the ability to fully bear witness to their pain and not be broken by it.  I'm full blown weeping by this point in the movie.

Shelley and I do everything we can to ensure that Amie has no idea whatsoever how dire her circumstances are, and probably never will.  She has no concept of mortality, no fear of her treatments.  Hell, she actually likes the "spider man mask treatments" because she gets to listen to Dr. Seuss audiobooks.  <Note to self:  Record yourself reading all her books in case she's really sick.>

The above picture is from one of the aforementioned cuddle sessions.  
I'm getting better at taking upside down shots with my phone!

We are in the grind right now.  Amie got her 6th radiation treatment today, and it's still going as well as can be expected.  Amie has been crashing on the couch a LOT lately.  Before this week, she's never fallen asleep on the couch.  Ever.

This week?  3x already.  

Anya sat and sketched Amie laying on the couch for over 30 minutes.

I know some of you are looking at this and not thinking it's that hot.  But I look at it and think of all the details that she is observing.  She's noting the loops on the couch.  She's noting the placement of Baby Jumping (pardon her evolving spelling skills), the curtains, and even the folds in the blanket.  She's such a patient artist, and I'm so proud of her focus.

A few final things, if you're still reading...

We've decided to move forward with Amie's Make-A-Wish.  We've been approached several times, and always found a reason to delay.  We asked about its timeliness to Dr. Robertson, and she agreed that taking the Make-A-Wish the week after the radiation finishes is a great idea.  So we're moving forward with that, if we can get it all scheduled by then. (the week after 4th of July)

We need ideas of where to go, though.  Here are the things we know:

  • Disney is an option, but our girls have no connection to Disney whatsoever,  other than Frozen.  
  • Amie really only wants to spend time with us, and doesn't know much else.
  • Amie LOVES to spend time in the water. LOVES LOVES LOVES.
  • We'd all rather be somewhere warm.
  • Only Shelley has a valid passport right now.
For those of you who have ideas on where we should go, reply in the comments on the blog, or on FB once I post this.  We'd love to hear where you think we'd enjoy.  

As a final reminder, please click through on the ads below and to the right side of the post once you are done.  It's actually generating a decent amount of income for us right now, and we're totally surprised by that.

However, I did some research and learned that it does go back and dramatically decrease the amount it pays for multiple click throughs from the same IP address.  So for those of my friends/8th graders who are just clicking through endlessly, it realizes you're doing that and doesn't count those clicks.  Thanks though!

Ok....time to post this behemoth!  I'm headed down to infusion tomorrow, and then going to have an adventure with the girls before Shelley is scheduled to come home.  Time for bed!

Tuesday, May 27, 2014

A post in reverse from my normal...

Just because I feel like being wacky, I'm going to do this blog post in reverse.

Normally, I'd give you a bunch of medical information, and then finish it off with pictures.  

Now?  Backwards time!

Anya's school had a volunteer appreciation concert today at 1p, and I was able to go to it as I did not go to work today, for a variety of family reasons.  They had written a lot of the songs themselves, and then sang "It's a Wonderful World" and "Hakuna Matata" on top of that.  It was really nice!  Great job Narwhal, Dusky, and Hector classrooms!

They also had some of the kids' artwork on display.  This is Anya's self-portrait.
I tell ya, the kid's got more talent than me, hands down.  It's proof that mastery = practice.

This is the Child Life play area in the radiation quarters of the U of M Hospital.  Due to the cost, they do not have a "children only" radiation suite.  Kids get their radiation treatments in the adult suite, and we had just finished here.  Note the redness on the left side of her face.  
You'll see what that's from in a second. 

All photo credits for the radiation shots go to Shelley, as they were shot last Friday.

Amie starts the process getting loaded onto this bench, and is lined up precisely.  They have previously made a mask (far right) that is made of similar material to a broken arm cast.  

They then snap the mask into place, with push-rivets attached to the side of the mask that physically attach her head to the table.

Once her head and body are positioned correctly, they scan her head to assure that it's 100% in the correct location, as the radiation needs to be delivered to the exact spot to avoid damage and enhance treatment possibilities.  

Amie is covered with a blanket, she holds Baby tight, and she stays "flat like a board" and "doesn't move a muscle" for over 15 minutes.  Dr. Hamstra says that she's the youngest patient he's ever seen who can do this treatment without a lot.

I'm including this one not as overkill, but to show you just how tight this mask is.  It's smashing her face in pretty good, and the damned kid never makes a sound about it.  Helps remind you to stop complaining about little stuff, eh?

Bet you didn't know hunting the elusive "Anyapants" was in season, did you.

I caught me a good 'un.  Them's tasty.

Shelley decided we needed to teach Anya something about sports.  We started here.  

As you might imagine, she had about as much desire to eat beef jerky as she did to learn how to hit a ball.  But as with everything else, she was incredibly patient with us, and did her best.

Shelley has really gotten into the selfie craze, even pushing me to take them.  Since I look like a goof in them, I have to push that further.

We spent a few hours on the beach in Luna Pier on Sunday.  Gorgeous day.  Learned that all of Amie's treatments and medicines make her HIGHLY sensitive to the sun, no matter how much sunblock we put on.  Have to make sure we have sun shelters all summer, or only play in the shade.

Saw this on FB the other day, and really enjoyed it.  It aligns with so many of my successes, and so many of my failures.  Wanted to share it.

Memorial Day...I had every intention to write this post yesterday, with all of Memorial Day's symbolism, but didn't have my heart in it, and knowing that I was seeing Dr. Robertson today made it easier to delay.

Over a year ago, Amie was in a promo spot for a challenge between U-M and MSU.  It was there that I met Maddie, the 8th grader from Woodhaven that I have praised on previous blog posts. (She's on the far left) I got to know her a little more over the next few months, and then she took a massive turn for the worse and passed away last July. 

I was reading the paper on Sunday morning and saw an article about a Harland High School student. Mid-way through the article I realized it was another kid from the Make-a-Wish video, this time the kid on the far right.  Pulled me apart quite a bit reading that.

I still think about Maddie a LOT, and about the strength that it takes to be a parent of a kid with cancer.  We are constantly told that Shelley and I are strong, and that we are inspiring...  and I feel like anything but some days.  For those of you who have read "The Fault in Our Stars", I am Hazel's Dad.  Not a real presence in the book by any means, but when he's there, he's in tears more often than not.  I found myself tearing up over and over and over at Anya's school today.  To reference Fight Club, I am Jason's overactive emotions.

So while Memorial Day is a day to be spent honoring the nation's soldiers, I think it might just be alright to honor kids who are soldiering on valiantly in the face of cancer too.  Any veterans out there who disagree with me, let me know.  I don't think I'm offending, but I might be.  Amie's a soldier in my book anyday.  

Her orders come from somewhere outside of her ability to respond to them, she has to follow them to a T lest a consequence happen that would be overwhelming, and as I've heard said in many films, "Shit rolls downhill."  Yep.  She's a soldier.

Finally, to the medical stuff:
  • Amie has been far more balanced the last few days, and got some of her energy back as well.  Not that you knew that she had no energy, because I haven't blogged in a week.  But she spent most of the last week with no energy at all.  They're attributing her increased balance to the steroids she's now on, as it should decrease the intracranial swelling that was going on.
  • Dr. Robertson came back from vacation and was able to review all the findings.  She says she's more positive about the MRI results than those who had looked at them before.  She says that she believes the growth in the MRI that was stated to us is smaller than others had said.  
  • She also reviewed the MRI results for the spine, and talked about how doing MRIs of the spine is a mixed blessing.  Things are not as clean and clear as they are in the brain, and you can sometime get false positives for things that you previously would never have known about.  She said that she hopes/believes that the cancer cells have not spread to the spinal fluid, but can't rule it out until we do a spinal tap to directly examine the spinal fluid.
  • They don't want to do a spinal tap (it's properly called a lumbar puncture, but I love the movie Spinal Tap, so I call it a spinal tap) until she's scheduled for her next anesthesia, which may be another 5 weeks or so....
  • In our BEST case scenario, we're looking at another 5 weeks of radiation, with chemotherapy (Temodar and Irinotecan, started today) on top.  After that, a small break, and then 6 rounds (1 round per month) of chemotherapy with different combinations of drugs aimed at the rhabdomyosarcoma, and not the previously targeted medulloblastoma.  Best case scenario puts us in treatment all the way until February (at a minimum).


They also told us about the prognosis if the rhabdomyoscarcoma has metastasized (started to spread out of the original area) into the spinal column.  According to Dr. Robertson, and confirmed by her Nurse Practitioner Marcia, if the rhabdomyosarcoma has spread into the spinal column, any further treatment will be done merely to extend life. With that said, any further treatment might possibly seriously affect her quality of life as well, and should be debated.


We move along with that.

Short term:  Amie looks great, continues to charm the pants off everyone, and is a true joy to be around.
Long term:  If the cancer has spread to her spine, then everything is....  different.

One final message, that will hopefully make you smile.  After mentioning me turning on the ads, apparently many of you started clicking on them.  That clicking made us $50 in 2 days.  

So feel free to keep clicking through on the ads.  Even if you are a young 20-something living in Arkansas (right, seƱor?)

More information as we know it... 

Thursday, May 22, 2014

I get my medicine in the AIR!

For those of you who crave pictures of the kids, there's no pictures of the kids this post.  It's been a hell of a busy week, and I haven't spent much time around the kids, honestly.

My work people are saying...Wait!  You leave at 2:35p every day! How can you not spend a ton of time with the kids!

I leave MMS each day at 2:35, and head towards Hartland, where Anya goes to school at CSA.  It's an amazing program, and I won't bore any of you any more with their credentials...

Anyway.  I get to Hartland 55 minutes later most days at 3:30.  I could totally pick up Anya at this point, as she gets out of school at 3:35.  However, she LOVES going to "short watch", which is all the kids who can't be picked up immediately sitting in the gym enjoying each other's company.  This year there are a team of 5th graders who are future teachers who have taken a group of younger kids under their wing and started teaching them advanced concepts.  They actually taught Anya basic multiplication.  It's so, so cool.  They're actually making up their own interactive worksheets.

So, I pick up Anya at 4:15, and get home by 4:35p.

The girls eat dinner, and generally start fading from consciousness by 6:30-7p.

It's a quick evening, and then Shelley and I tend to chat and get house chores done.

Tonight's chatting was mostly about how much Amie rocked the radiation today.  She had her head bolted to the table for 20 minutes, and sailed through like a charm.

Shelley shared that the Dr. that's in charge came in 25 minutes after the scheduled starting time, saw Amie off the table,  and inquired about why they hadn't yet the treatment.  The tech replied that they had already finished, and the Dr. was utterly shocked. <all of this is 2nd hand retelling, btw>  He said that Amie was the youngest kid they'd ever had who had done radiation treatments without anesthesia.

We were really worried about that, by the way.  Amie had been anesthetized 19x prior to today, and we were looking at another 30x of anesthesia over the next 6 weeks. We know that it's "safe", but we can also predict that such intensive anesthesia cannot be good for the kid <Klimek input?> in the long-run.

Hopefully that will continue, and our little trooper will continue to rock things out for herself and us...and we can continue to not need anesthesia.

Next:  Amie loves to have things explained to her.  Her radiation treatment is on a table that is elevated, and the machine that delivers the radiation revolves around the table.  According to Amie she "gets her medicine in the AIR!"  I loved that idea.  Loved loved loved.

I'm running out of energy, but wanted to give some serious shoutouts to some VBPS people who are making me smile.

A bunch of former co-workers at the high school got together to sell cards for us, and they looked amazing.  Ms. Halliday (she of the donator of said Duplo Legos, favorites of Amie) gave us an envelope with the collected sales and donations that floored us.  It was great, great, great.

Jennifer Overholt, she of the bracelet sale, is also organizing a fundraiser at the Ypsilanti Buffalo Wild Wings for us.  You have to have the flier to gain access to the fundraiser, (hold the picture and save it to your phone for you techies.  Print it out for you luddites) but a certain percentage of the purchases will go to us.

I feel totally weird advertising that stuff, by the way.  Being that I'm the recipient, it seems slightly reminiscent of me pimping myself....  awkward!

One final thing for tonight as I fall asleep, the Ads on the page.  I realized recently that I could have turned on the ads a long time ago.  I've gotten roughly 130,000 page hits thus far, and that I could have been making money this whole time.  Disaster helps you erode your personal economic/moral boundaries, by the way.  So feel free to click on the ads, and help earn us a few spare cents.  I made $10 last week alone.  :)

More this weekend when I'm not so tired!  Hope all is well with each of you.

Monday, May 19, 2014

1/24th of a second....

Greetings All,

Been waiting to do this blog post until things were confirmed.  As Shelley said to me last night, my blog posts have always been informative, and not alarmist...and no need to break that pattern before things are confirmed.

(there's a lot of medical stuff about to be spilled here.  Sorry for so much, but then again, if you're reading you want to have it, so I should just shut up here)

So the MRI results are back, and they're profoundly not good.  There has been no chemotherapy treatment for about the last 8 weeks, and the surgery only really took a chunk out of the tumor without anything to get it to stop it's growth, or even check it's progression.  So it has been growing freely for the last 3 weeks while Amie healed.

Before I talk about the MRI results, I have to qualify the results somewhat.  As I mentioned in previous blog posts, they had a bleeding situation in the surgery that was slightly unexpected.  As the surgeon described to us, he was going to avoid being heroic in the surgery, and err on the conservative side,  so he stopped the surgery when the bleed happened.  This left a certain amount of blood in the brain that is causing some pressure in the area, and some distortion in the MRI.  Additionally, they laid down some cellulose foam to stop the bleeding, and that's causing some distortion as well.

When the surgery was completed, Dr. Maher stated that they measured the tumor around 2.5 centimeters, and he was able to resect about 80% of it.  That leaves around .5 centimeters of the tumor in place.  5mm.  Not too bad.

Friday's MRI sees a mass of tumor, blood, and cellulose around 2.8 centimeters.  They can't really tell how much is tumor, how much is blood, and how much is cellulose, but they can tell that there has been significant progression of the tumor in that time.  Dr. Robertson will be back from her once per year vacation next week, and we'll know more after that.

Additionally, (and this is another quite unfortunate and saddening step) there are now indications that her cancer cells have spread to her spine.  This would be right in line with just how aggressive this tumor is.  They can't confirm this until she has a spinal tap.  But she can't have a spinal tap because the blood in her brain is causing undue pressure on things, and increased pressure on the cerebral-spinal fluid in the brain could mean some dramatic leaking of it in the back if they do the spinal we're a bit in a waiting pattern as the Drs. debate the risk/need of the tap.

The plan (which I can't remember if I delineated fully in previous blog posts...) was to go in for all the preliminary focal radiation appointments this Thursday, and then start the focal radiation treatments the following Tuesday.  Due to the aggressively rapid progression of the tumor, they accelerated the treatment plan to tests for tomorrow, radiation on Wednesday....and every weekday afterwards for the next 5-6 weeks.

If they do the tap and confirm that the cancer cells have spread to the spine, then they're going to abandon the focal radiation treatments in favor of full cranial-spinal radiation.  Ugh.

Add onto the radiation treatments that they're going to dose her with Irinotecan and Temodar starting next week, and she's going to be rocking and rolling with it really quick. 

They have now found 12 documented cases of Rhabdomyosarcoma in the brain tissue.  That's out of millions of total cases of cancer.  Out of those 12 cases, 6 died and 6 lived 5 years past treatment.  That's "survival" by the way.  You beat cancer if you live 5 years past treatment.


I was just driving home from the Post Office a few minutes ago and had this thought... Dealing with Amie's cancer is like slowing down a car crash from a movie to the absolutely slowest speed.  In movies, there are 24 frames per second.  I feel like these blog posts, and our lives as a whole, are just happening one frame at a time.

I have this image in my head that we're in a car crash. But we're not really in the car either.  It's like we've gotten ejected from the car, all cut, bruised, scraped....but we're essentially safe.  Now we're just watching, frame by frame....1/24th of a second at a time, waiting to see what will happen to Amie as the crash proceeds without any control over anything at all.

Not the most heart-warming thought, I know...  but apt for the completely and utterly out of control feelings we have most days.

One final thought, as I was having this thought, I realized that I was listening to "Under Pressure" by Queen, with David Bowie, and what an awesome song that is....and also apt for our lives right now.

Ok! Enough wallowing in introspection and sorrow!

This is Amie's incision 1-week post-surgery.

This is her incision almost a week ago.  It's healing well so far.

Anya was acting like a statue.  I loved this.

Anya and Amie had tied my father up.  Papa Moustache must be contained at all times.

One of Anya's first official attempts at watercolor.  I really like it.  She's such an art fanatic.

The girls were playing "Mott" (see picture below) over the weekend, and had created hospital rooms.  Loved their adventure and play...not to mention taking the scary out of the hospital...not that there's much at all.  It's the place where they get to watch unlimited TV!

Next...  the awesome people at Owen Intermediate School.  
Michelle Wagner, a person who is amazingly awesome and I've only had a small chance to work with thus far, messaged me on facebook about her desire to do something for my kids.  She suggested first a tea party where she would arrange for Anna and Elsa from Frozen to host a tea party for my daughters.  I loved the idea, but knew that scheduling anything is often folly and is punished.

So she then asked about buttons with "Team Amelie" on it.  I gave Anya a circle, and told her to draw something with Team Amie in the center and make it look awesome.  She did just that, and Michelle and a friend from another school (Katy Jones from Tyler!) helped out with the buttons.  I've now got a mass of buttons.  If you want some, let me know, and I'll get them to you.  Maybe email me your address and I'll drop them off on the way home from work, or you can come to McBride and pick them up.  Either way, let me know and I'll get you your very own Team Amie button!

 They also got a whole basket full of really fun, amazing stuff for the girls. 
Look how happy Anya is seeing all of that?  So, so hard to get her to smile, eh?

 Amelie was really tired by then, and once she gets tired, she wants nothing to do with pictures.  
But she was really enjoying looking at it.  It'll be wonderland in the morning.

Some last thoughts on this really, really long blog post.

As I mentioned, things are profoundly not good.
But that doesn't mean they are over.
It just means that the next few months are going to royally suck.

Thanks for all the constant support, we really appreciate it....and so does Amie.

Friday, May 9, 2014

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?


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 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!

Sunday, May 4, 2014

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.

Saturday, May 3, 2014

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.