Wednesday, July 25, 2012

MO'r!!!

You may remember this mower from MGH that I posted about with radiation. It's from the playroom on MGH's young pediatric floor and Emmett claimed it during both stays.  He kept it in the room, had it in his crib for naps, insisted on taking it down to radiation every morning, asked for it when he woke up before his eyes were hardly open....Emmett loved this little mower.  He also LOVES real mowers.  I'm sure the neighbors are creeped out by us-whenever Emmett hears someone mowing the lawn he gets giddy and anxious until you take him outside and he just wants to sit on the sidewalk and watch them mow.  Our neighbor has a beautiful yard and is very meticulous about his lawn and is often seen for the bulk of his Saturdays out with weed whackers, blowers, the mower....Emmett's in love.  Whenever he sees Vern out walking his dog or anywhere else, he still calls him "Mo'r," which probably isn't a bad nickname for him.
Emmett with the mower on the way to radiation. 
As a special gift for when he finished radiation on Thursday July 5, I wanted to take him straight to the toy store and get his own mower to bring home.  Unfortunately, he didn't get to come straight home his last day of radiaiton, as he needed a blood transfusion, which takes a while.  Secondly, I looked online first and called a few stores and Toys R Us told me they hadn't carried that mower in a while, which makes sense.  I guess it's been donated to the hospital's playroom because some other kid was done with it a while ago.  Luckily, they're still available online, so we ordered one.  This was a long time coming, though, because he was flirting with a fever even that same day and all weekend.  Sunday he spiked to 102.9 so we went back to Children's for the first time in almost 2 months and we were admitted for the week.  Micah also went back to Albuquerque that week.  Children's had a more realistic mower that Emmett also loved and also claimed (which Micah loved because it wasn't a loud popper one), along with a vacuum, a ride-in-car and a shopping cart.  Our nurses are so sweet-they made sure Emmett got to hoard all his favorite toys in his room and had access to them whenever he wanted.  Luckily, there weren't many toddlers around for competition. 
Short story long ;) - we were discharged on Saturday, right after Micah had gotten back into town. When we got home that evening, there had been a package waiting for Emmett all week!  (I love that at the peak moment of opening it, he is distracted by a siren, which he also loves)  His reaction does not disappoint!
Trying it out for the first time at home!
He knows that real lawn mowers go on the grass (unfortunately, his works better on pavement, though)
Anyone looking for a landscaper?!?

Saturday, July 21, 2012

Red Sox at Fenway

A friend gave us tickets to a Red Sox game and a pre-game lunch at the Royal Rooters Club for the June 27th game against the Toronto Blue Jays.  It was a blast!  My dad was in town so the two of us got to go together.  Dad played a lot of baseball growing up and really understands and loves the game.  It was great to be able to enjoy an afternoon at Fenway Park together.  The weather was perfect, our seats were great, and we got to see some amazing plays including some home runs, a few hits out of the park, and a catch on top of the right field wall!  The Red Sox won 10-4.

This year is the 100th anniversary of Fenway Park and we picked up some cool commemoration hats after the game.  It was a fun afternoon in Boston...riding the T, watching good baseball, and enjoying time with dad.  THANKS!!!







Monday, July 16, 2012

A Two-Month Sprint

As we've mentioned previously on our blog, the five-month mark is significant in Emmett's treatment plan.  Most children who have fared well were disease free at five months.  Though we've felt that Emmett has responded to treatment and has generally done well up to this point, we're starting to get nervous as we approach this big milestone.  Many ATRT kids receive a full resection prior to beginning chemotherapy and radiation.  Emmett didn't get a full resection, however, as only a 50% debulking was possible on the nerves in his brachial plexus.  Have the chemotherapy and radiation worked their magic on the remaining tumor?  We hope and pray that they have, but we won't know for sure for two months...and with each passing day we get more and more anxious.

One thing we've felt impressed to do lately is to pursue alternative therapies that will complement and increase the effectiveness of chemotherapy and radiation.  Several of the ATRT families we're in touch with feel strongly that alternative therapies were the key in helping their children survive.  Emmett needs every KICK and BOOST he can get!!!  There are so many alternative/complementary therapies available that researching and deciding what we believe in and will subscribe to is daunting...and our time is limited.  So we thought we'd enlist of help of our blog audience to help us learn about and identify alternative treatments we should consider.  As long as therapies have no potential negative side effects, we're willing to consider almost anything.  We'd rather administer 10 alternative therapies even if only one has any positive effect than to do nothing and have Emmett miss out on the benefit of one therapy that might increase his chance of survival.

Micah setup a website last year that he hasn't used so we turned it into a discussion forum for Emmett's cancer treatments.  The address is www.rootcellarresource.com.  Please feel free to register on the forum and contribute to the research and discussion.  There may readers of our blog who've had suggestions or therapies they've wanted to share but haven't for fear of overstepping their bounds.  This forum is the place to share your thoughts and comments without reservation.  You don't need to be an expert-any comments or experiences would be appreciated.  Even if you haven't had a personal experience with other therapies, but know someone that has, we'd love to hear about it.

As an FYI, the main therapy we've pursued so far has been diet.  We have a juicer and have done a fair bit of juicing of foods that are thought to increase the body's ability to fight cancer.  But there's much more we need to learn about dietary recommendations and other alternative therapies to consider.

If you have problems joining the forum please comment below or email Micah .  And thanks for your help!

Tuesday, July 10, 2012

Goodbye Radiation!

We were glad to have you, proton radiation. You are less damaging than the alternative photon radiation. We hope you did your job-no more and no less. May we NEVER need you again!

(Emmett's last day of radiation was July 5th)

The kids that are sedated for radiation get prepped and recover in this backroom.
They have a lot of toys and entertainment to preoccupy them while they wait.
This is "Gantry 3"- the actual treatment room where Emmett was sedated and given radiation every morning

Emmett's favorite thing out in the lobby was the trainset in the playroom, of course
We met some other kids & families that were there every morning, too
This is Kenia-she's from the Dominican Republic & her 3 year old son was receiving radiation also.
Her mom and older son were visiting for a while, but she had an 18 month old back home that she hasn't seen in a while.  We loved her.  She'd give us a hug every morning when we saw her & was so sweet.  There is always someone who has it harder than you, that's for sure. 
We hope all goes well and her family is united again soon!


This is the recovery room again.  Emmett was often the 1st or 2nd to go because he was the youngest.
There were anywhere from 4-6 kids that needed sedation also.
One morning when Emmett was very first-he asked for the RC Train, as soon as he got that, asked for the iPad, and then wanted bubbles, too.  I swear he did it on purpose & wanted to hoard all the 'good' toys before any of the other kids got them ;)
In the Gantry
Right before being sedated
This is his face mask.  He was fitted for it under sedation for another scan before we started radiation.
They put it on him every day after he's sedated to make sure his head stays perfectly still.
We were inpatient for Week 10 of chemo June 26 - June 29.
They had to come 'transport' us down to radiation every day in a wheelchair.  
And EVERY day, Emmett dragged along this lawnmower that he loves from the playroom.
He also slept with it in his crib during naps and at night.  And would ask for it before his eyes were hardly open when he woke up.  He loves all things mowers.  The neighbors I'm sure are creeped out by him because if he hears a lawnmower in the neighborhood, he begs to go out and then just wants to stand on the sidewalk and watch them.  (Well, truthfully, he wants to play with it, but we usually just try to watch)
This is the world famous nurse, Rachel.  She runs the Pediatric side of the Proton Center and everyone in the hospital knows her by first name-just like Cher or Prince.  And nurses at Children's also knew her by first name, although, they'd never met her.  These next pictures were taken on Thursday, July 5th, Emmett's last day of radiation!  That staff bought him his on RC Thomas Train because that was his absolute favorite toy there.  He's loved having one at home, now!
They decorated his bed for his big day.  I got him dressed in his Sunday Best.  Emmett has been a fighter and done great during radiation.  This is a big accomplishment to be done with a such a significant part of his treatment and I am so proud of Emmett.  He's so little, that obviously, he just goes where ever we take him, but getting yanked from bed around 6:15 every morning for 6 weeks and only getting weekends to recover, put into a carseat, spending anywhere from 20-60 min one way depending on traffic, not being able to eat before sedation, being nauseous, having his skin have a terrible burn on it now,  having chemo treatments simultaneously, having to be sedated every day....you get the idea.  This kid has been amazing through it all and today was a big achievement for him and so he was dressed to show that! 
Here's the other nurse, Eileen.  She's really sweet and we saw her every morning and she 
helped get Emmett ready or oversaw him while he woke up.
This is Emmett getting ready for his very last treatment.  I'm bummed, because we took a picture with all the staff (it takes 2-3 techs, a nurse, an anesthesiologist & a resident every day to get him aligned correctly) but the camera wigged out.  They also let me take one of him 'asleep' on the table as they were starting, but that didn't turn out either.  The only one I got was the back of everyone's head :(
Even though it was his last day, we didn't get to go home and celebrate right away.  Emmett needed a 
platelet transfusion, so we headed upstairs to the clinic and spent some time up there. Emmett started 'flirting with a fever,' as the doctor called it, but luckily it's Sunday and we're still home, as his fever has never gotten high 'enough' to go in.

Grandma
We've heard of this tradition at a few facilities-you get to ring a bell at the end of treatment



Grandma & Grandpa, Uncle Cris & Aunt Laree made it to my bell ringing!