What words can express....?

Greetings All!

How does a person go about talking about what happened on Wednesday night?

At a macro view for those who aren't on FB and weren't there, hundreds and hundreds of people drove to Ypsilanti, waited an enormous amount of time to get a table, and then waited to get their food.  They did it with patience, they did it with fun and excitement, and they did it to help out my family.

The previous high water mark for events like this was nearly doubled by the event, and it astounded everyone's expectations.

Some lame micro level observations:

• I was utterly amazed by the sheer number of people who drove out to spend time for the event, from so many different eras of my life.  A former girlfriend from HS, co-workers from my time in television, students who graduated 7 years ago, and a ton of people from this year.  It was a true spectrum of my life.
• People in Belleville like fried meat.  
• It was amazing how many students from so many years came out to support Amie.  I must be doing something right, occasionally.  :)
• When asked, the people of this community show up in force, and it is beyond overwhelming.

I'm going to stop writing, because all my words are feeling horrifically insufficient to the task.  I lack the language to say thank you to the levels that I feel needs to be said.  We cannot possibly express our gratitude and thanks to the level they deserve.  Thank you.

Amie is doing as well as can be, all said.  She's in the process of trying to regulate her GI process, and is moving back towards normal.  I will spare you the details because after the last post, I'm sure I've warn out my poop welcome....and I know I'm going to do another post tomorrow about how it's Anya's birthday today.  That one will have lots of pictures.

Before I talk about this next part, I wanted to put up a disclaimer that there is no one in my life who is currently violating the diagram I'm about to reference.  

I just love the idea.

Lindsay, the friend who posted the John Green picture, posted the above diagram, with the accompanying article from Huffington Post, a few days ago on Facebook.  After reading the article, I thought about how awesome the idea is, and how nice it would be if everyone did this.

Here's the idea in a TL; DR - Comfort In, Dump Out. 

To start off, I'll describe what you see.  At the center of the diagram is the person suffering from an illness/catastrophe/seismic life event.  The circle directly outside of that is the most closest confidant/family member/life participant.  Each next circle is a person a little more removed from the person, all the way out to total strangers at the furthest edges.

When interacting with someone who is further in towards the center, you should never dump negativity, unasked for advice, criticism, whininess, or any other negative behavior.  They are struggling more than you, and you should not add to their burden.

If you feel the need to process what you've witnessed, what you're feeling, what you're dealing with...you dump those feelings out....that is you talk to someone who is more removed from the situation than you are.

If you are interacting with a person inside the circle, you add comfort.  Whether that be a listening ear, a hug, a kind gesture, a whatever. You add comfort into the experience....you give what you can, you keep what you have, and dump out what you can't handle.

Putting that into practice, Amelie is at the center of the circle.  Shelley is one step closer than I am.  I try to be a listening ear more than anything else to Shelley, and not offer advice to what she's doing.  She's doing her absolute best to provide for Amelie every minute of every day, excepting when I'm there. My sister and parents are further out of the circle, and my coworkers further out from that.  

With this diagram and idea, we consciously consider our roles in each others lives, and then give to the inner circles what they need to survive/weather the crisis that they live within in their daily lives.

Like I said, not an indictment by any means of anyone's behavior, but something I think is really awesome in guiding behavior towards anyone in a moment of crisis, no matter what that may be.

Another post tomorrow with pictures from Anya's birthday dinner and then birthday party.  But for now, I want to get this one on the road.

One final thing...  I made this picture I'll post at the bottom of my blog from now on as a reminder to click on the ads before you leave.  It's making us a stupid amount of money, and we'd love for that to continue with something so easy to complete on your end.  So thanks again!

Warning! Warning! This is an unauthorized post!

Some of you don’t know this, but I teach 8^th grade.  8^th graders are the strangest creatures.  They look like mostly formed adults, they talk like mostly formed adults.

However, they are still children.

I’ve only been teaching 8^th grade for 2 years now, but I’m starting to believe there is a tangible reason I’m teaching here….  In a lot of ways I’m just as immature as them.

So, ladies and gentlemen, boys and girls, tonight’s blog post is about…. Poop.

Before I begin to sing the praises of pooping (and I shall), I must announce, with sorrow, that Shelley has ordered me NOT to write a blog post about poop, as it is inappropriate, and not to be shared.

I shall now cast aside her concerns and plunge (I fear there may be many puns in here, beware) forward with my tale.

I like to joke about poop.  I like to make random poop comments to students.  I once took a picture of this EPIC blowout when Anya was a kid in which the poop shot up into her armpits and stained her onesie like a Rorschach test blot.

In probably my worst parenting moments, but one I bond with Anya the most in…I try to make her ask for Poopcorn at Target when we stop in to get it afterschool.  She is totally out of her mind with embarrassment, but she wants the popco…er Poopcorn so much that she considers it…but then she reconsiders it because we’re NOT SUPPOSED TO TALK ABOUT POOP. …and that’s kinda the point of this post.

For those of you who are new to the cancer thing….chemotherapy is not kind to the body in many ways, but one of the most dynamic ways for Amelie is that she has massive pooping problems.

She starts out her chemotherapy rounds (each round is roughly a month) with massive constipation.  As of tonight, she was on day #6.

Thought experiment:

• ·      Go to McDonalds, and buy 3 hamburgers.  The basic ones.
• ·      Take a bite.  Chew it up.  Don’t swallow.
• ·      Keep doing this until you have every square inch of your mouth fully extended.
• ·      DO NOT SWALLOW.

·      This is what Amie’s abdomen looks like.

We use lactulose.  We use miralax.  We use Colace.  We soften. We hurry.  We push it out, push it out, way out.  It doesn’t move.  You don’t want it to get too packed in there, as it could rupture.

But any of you who are still reading (are any of you still reading?), you’re thinking about the balance of power.  The Jedi vs. the Sith.  The Yin and the Yang.  U-M vs. MSU.

If you give too much of the poop interventions, you end up swinging the pendulum back the other way too far, and that’s possibly even worse.  Once the 2^nd half of the chemotherapy trick sets in, you’re already going to have that problem.  Accelerate it even more, and you’ve got disaster.  Ya see, the chemotherapy, in addition to the prophylactic antibiotics, wreaks havoc on the balance of bacteria in the GI tract.  You swing from constipation land to diarrheaville.  Not a fun detour.

I was driving home tonight thinking of how absolutely lucky most people are to be as good of poopers as they are.  We DON’T TALK ABOUT POOPING, but it’s one of the most essential parts of our own happiness. Doubt me on that one?  Eat a box of Imodium and call me in a week with a report.

Anyway, I’m starting to lose my amusement for the whole thing, so I’ll share the last few bits of information.

I had a few spare minutes earlier today and made this design. I'm seriously considering designing and selling T-Shirts and Patches for this...

It’s in honor of today.  Today’s the 2^nd, #2 in some places.  From now on, when I’ve got to head to the toilet, I’m going to be going in for a 6-2 (todays’ date).  For me, like Kramer with Festivus, I’m creating a national holiday.  National Healthy Pooping Day.

As of a few minutes ago, Amie came out and announced that she’d pooped in her sleep.  (wrap your heads around that one!) She popped out a baseball sized chunk, and there’s probably a ton more where that came from in the days to come.  But she’s far more comfortable, far more able to sleep, and maybe…just maybe…  we’ll get to sleep through the night tonight.

Just a reminder:  For those interested, B-Dubs fundraiser is on Wednesday!

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!

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 anesthesia....by 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).

But.

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.

So.

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, señor?)

More information as we know it... 

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.

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 tap...so 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.

Ugh.

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.