Monday, June 25, 2012

Recognize them?

It's ok, neither did we. But they are famous! Members of the New England Patriots NFL team!  And of course the first thing Micah asked is 'what happened in the Superbowl? sucks losing the big game, eh? and twice in a row!'  That's a great start to meeting guys that are twice your size.  Well, they aren't actually quite that big, which Micah likes to continually to point out.   
They came to Children's probably back in April.  They said celebrity visits are always last minute/unannounced.  Someone from PR just poked their head in one evening and asked if we wanted to meet them.  So here we are!  A few weeks later, this nice envelope showed up & inside was a black fancy cover with gold letters.  I thought we won an award or something...turns out, it was just the official picture.  Added some excitement to our evening and it was fun to meet them!  They were friendly enough & signed their autographs for us.  After they left, our awesome nurse, Jess, asked which ones came. We'd already forgotten, so we looked at the numbers they'd signed under their names & looked them up (because of course, we couldn't read the signatures).  She started laughing and told us one of them had made the news lately....for some court ordered community service.  Timely visit, eh?

Emmett had been due to start chemo on Friday.  His counts were so low on Thursday (410-neutropenic) so they didn't bother checking on Friday, which means we didn't have to go in at all because radiation was shut for a scheduled maintenance.  Today they checked again and he's only at 770 so we'll try again tomorrow.  His protocol says he needs to be over 1,000 to start so hopefully Week 10 (a major round which he gets admitted for) will be starting soon.  


Monday, June 18, 2012

A real live LION!!

Cassandra and Mike (Micah's sister and her husband) drove all the way from Michigan and met us right at the Franklin Park Zoo.  I've been to this zoo probably once in elementary school and didn't have huge expectations, but we actually had a great time!  It's setup more like a park than exhibits so there's more walking, but there are tons of trees and it's nice and shady.  It's in Dorchester which is a rougher part of Boston, so there were constantly cops flying by with their sirens on, which Emmett loved.  It wasn't crowded.  There was actually a pretty good assortment of animals.  Even more impressive, the animals were actually visible and not hiding behind rocks.  Lots of them were actually right at the front of their viewing areas, which was great.  Most importantly, the LION did NOT disappoint!  He spent a lot of time roaring and moving around.  I thought Emmett was a little young (although of course he is brilliant) to make the connection between his stuffed animal and the real deal, but after a minute of watching the lion, he started making his sign for the lion.  He LOVED it!  We got a few videos of it roaring and at home that night, my sister Betsy showed him the videos a few times.  Later, he kept signing lion and pointing towards the table and I was confused, because little lion was no where around.  I finally realized he meant the lion videos and he sat and watched the same 30 second clip over and over again.  Needless to say, we'll be going back again sometime! 


In the farm animals' barn


This little 'choo choo' tractor was a hit, of course
For Emmett's favorite Savannah







Emmett's a little confused as to why the 'door' to see the lion is closed.
Here he is pushing on it...
And then his hands up in that 'what's going on?' pose

Emmett led the way the whole time...like usual
Fences are for wimps!

Blowing a kiss goodbye to that huge snake...don't know who told him to do that 
but I'm pretty sure it wasn't me prompting that ;)



This tamarin/monkey came right up to the window...
...so Emmett showed him his monkey sounds-
and then 'rocked it' with him!
One of Emmett's all-time favorites is the 'Wack Wack!'
Black Swans?!?  Pretty cool!




A Bengal Tiger-there was also a white one!



This land rover is actually half way into the lion's cage and is the coolest viewing area!
We had a BLAST with Aunt Cassandra & Uncle Mike.  Thanks for driving all the way (on Mike's birthday) just to take us to the zoo (and stay for a few more days) - We loved your visit!
Here's a quick one of the lion

Saturday, June 16, 2012

A Special Memorial Day

Dear world's best firefighter Sweeney-

I want to send you a HUGE thank you note for letting us visit you at work!  You have always been so generous and cousin Tyson & I were excited to come visit you at the firehouse, but your surprise was above and beyond, like usual.  Thanks for being brave and asking your scary boss special permission to take me out on the town.  I'm sorry I was a little sleepy when I got there and a little hesitant.  I see firetrucks racing by grandma's house all the time and I get SO excited and have to rush to the windows when I hear the sirens, but I'm not used to them up close.  (Sometimes I trick my mom and dad and pretend I'm asleep and then pop right up as soon as one of those bad boys come racing down the street with their sirens blaring.) By the end of the ride, I was asking for more!  And thank you for the baby firetruck.  That really made my day and I played with it for a long time right next to the big firetruck.  Good thing no one called 911 while I was there playing in the driveway.  It stays in mom's purse now so that I can play with it wherever I go!   Tell your ambulance buddies thank you for the red, white and blue teddy bear!  He's nice and soft. And thanks for all the ice pops we could eat (and couldn't eat).  Thanks for such an awesome day!  It's fun to get out and do something special on days when I'm finally out of the hospital.

You've known the LaPierres forever, but I'm excited to live close by you this year.  We'd be best buds, cause I love all the things you do-basketball, bagpipes, firetrucks, drive buses...plus I love your Boston accent and hope I catch it this year learning to talk while living in Boston!  I pretty much want to be you when I grow up!

Love,
Emmett the brave little aspiring lion fireman    


















Friday, June 15, 2012

Modified IRS-III Protocol

We thought we'd post a summary of Emmett's treatment protocol for those who want to track his progress.  The protocol was created by Dr. Mark Kieran at Dana Farber Cancer Institute.  The protocol is largely based on a clinical trial for treating rhabdomyosarcoma written in 1983, the "Third Intergroup Rhabdomyosarcoma Study" (IRS-III).  Because Dr. Kieran made several slight changes to the rhabdomyosarcoma protocol, the Dana Farber AT/RT protocol is commonly referred to as the "modified IRS-III".  Members of the AT/RT community often refer to it as simply "IRS-III". The full version of the protocol is available here.

We've included several excerpts from the modified IRS-III protocol below including the chemotherapy / radiation schedule along with a list of chemotherapy drugs.  The numbers in the top row of the schedule denote weeks and the letters in each column designate chemo drugs administered each week.  The I and L on the bottom two rows indicate where intrathecal chemo is administered either by lumbar puncture or omaya reservoir (ideally alternate each dose).




Emmett completed his 4th week of radiation today (which is week 10 on the protocol).  However, his chemo is behind a week because low blood counts delayed administering week 7 chemo until week 8.  So we'll finish chemo week 9 today before we leave the hospital (we're currently in the MGH pediatric clinic awaiting vincristine).  The doctors say delays like these are expected and not to worry. 

The modified IRS-III protocol is something of an enigma.  More details coming soon.