Woburn firetruck!

One of the Woburn Firemen has known my family for a while-he coached all my younger sisters on their soccer teams when they were little kids! Now he lives up the street and walks his dog frequently by the house. He wanted to take Emmett & Tyson on a special truck ride, so they made an appointment and he and the Lt came and picked us up for a ride! The boys were all ready for their truck date and so excited!

Tyson was smiley and excited-Emmett pretty much sat poker face the whole time, 

enjoying it but maybe a little bit nervous!

When they got back, they practiced their hose skills and filled the pool. 

(ignore the parent chatter in the background)

And not an hour after we got back, there were about 6 firetrucks, plus police cars and ambulances a few houses up the street that we went and checked out!  There was smoke coming from someone's roof.  They got to see lots of firefighters walking around in their gear with chainsaws and axes...no flames though.

Such a fun morning! Thanks!

Random

Good to know that despite all the chemo, some things about Emmett's body haven't changed: he still sweats like a pig. Except when he used to have hair, his hair would just be soaked. Now it just pools on his head. Not sure which is worse...

Back in April, Emmett was helping set the table so I gave him a handful of silverware.  He tried to climb up on the bench to put it on the table and slipped and fell off and landed under the table on his back.  And acquired this nasty cut.  It didn't bleed too much and we called the Jimmy Fund and they weren't too worried.

He was talking fine and would still drink some water and it didn't seem to hurt him so we weren't worried.  My bro is almost done as a dental student (so he's a pro at mouths) and when he saw it that night, even he thought it was a little gruesome, so we erred on the side of being careful and took him to the ER, with Aunt Besty, too, since she was in town. They weren't too worried about it either.  When they checked with the on-call oncologist, though, they wanted him on antibiotics to be extra cautious and make sure it didn't get infected.  It mostly looked nasty because it was so swollen and took a few days to calm down and about two weeks for it to close up.  He's one tough nut....with razor sharp teeth!

So far this morning....

This is from months ago, like usual, but I couldn't get all the pictures to upload at the time, so then this post got buried and forgotten...until now.

Here's your very typical 2 year old. I think in a matter of 10 minutes, he had exhausted 3 different activities one Sunday morning:

iPad:

Hey, the battery died!

So sad...life isn't worth living without an iPad
(ps don't you LOVE the lion hoodie?! THANKS to our friends that can sew!!)

 Marching around with Uncle Cris for a while-that was a good cheer me up! 

"Squirrel!" (name that movie)

This kid is constantly changing activities.  By the time you have play doh and the toys to go with it out and ready, he's already lost interest and on to the next thing.  We love that he keeps things fun and lively and has so much energy!

Emmett had another round of chemo last week (Monday June 10-Friday June 14 every day going down to the clinic) and on Day 12 (Friday the 21st) early morning had a fever, so we went to the ER and were admitted like usual.  He was discharged today and we just got home an hour ago.  This is big news because that means that Emmett now officially has only one more round of chemo, scheduled to start July 10!  holy cow!

A Truck Kind of Day....

Back in mid-April, Emmett and I were outside one morning, just doing nothing.  Kicking around in the garden and enjoying that it was a nice spring morning.  My parents have a woodstove and all through the winter they dump the ashes from it into the plot that is the garden when it's not covered with 3 feet of snow like it was this year.  Emmett realized one day that if you drag your feet around and kick in the piles of ashes, you get what he calls "smoke" (and what I call a mess).  Now that I think of it, all his 'smoke' is probably what attracted the attention of these fine firefighters!

My parents live on a busy corner and we were in garden and a firetruck came around the corner so we waved and they honked their horn....and slowed down!  And another truck came right behind it!  At first I thought, 'Man, Sean knows EVERYONE in this town that has a cool truck!' (I assumed maybe he had setup a little visit or something because it almost seemed planned). Turns out they were just driving by (the second truck just kept going) and saw Emmett and thought he could use a little pick me up so they stopped.  They let him hang out in the truck a little bit.  Emmett really needs to learn to take advantage of all this niceness ;) He's usually still pretty shy about this kind of stuff, but after they put him in the front seat and then he got out, he kept asking me for "Backside" (which of course means the backseat).

They waited while I ran inside and got a camera.  They let Emmett sit in the backseat, too.  And they felt bad that they didn't have a little kid hat or something to give him, but they made him 'Fred'-a balloon out of a glove, complete with a face they drew on it.  Emmett actually had a lot of fun with it in the yard after they left...until it popped about 4 minutes into his little game.

Bye!!!

A little sad about his popped balloon

Well, a Mailman that parks across the street often saw the firetruck stop and figured Emmett liked trucks & said hi and said we could come see his truck, too....anytime we wanted.  Another nice guy.  Emmett now thinks all mailmen are named Tony...and that there's only one mailman.  Anytime he sees a postal truck go by he yells 'Tony!'  He gets pretty excited to see Tony and asks often to go see his truck and yells his name when we're outside....and when we're inside and he sees the truck from the window.

Not long after that, a big truck came to drop off a dumpster. 

(My parents have some big projects planned before they leave!)

Emmett thought the dumpster was THE coolest playground 

(and I thought it was the coolest babysitter-close the door and he's contained outside for once!)

Then Tyson came to play.  Emmett is getting better at not being afraid of being in the driver seat of his Jeep, 

but when Tyson's here, he's got Jeeping in his blood and loves taking the driver's seat!  That motivates Emmett to drive it by himself (instead of me trying to cram in there with him)

Hoorah for such a fun, truck-kind-of-day!

Ambulance Ride

Well this a year ago now (plus a few weeks' change), so what an appropriate time to finally get it posted! We spent pretty much the month of April and a good portion of May 2012 in the hospital. After the first 2 rounds of chemo, 30 sessions of radiation come next on the protocol while still doing the 3rd and 4th rounds of chemo. We are fortunate enough to have a facility that does proton radiation for pediatrics right here in the city at another really big hospital, MGH. (Proton radiation is able to be more targeted on the tumor and doesn't have an exit beam, which means the healthy tissue is exposed much less to the radiation. There aren't a lot of these facilities in the country, and there are even fewer that accept pediatric patients, because children have to be sedated for treatment. So instead of just walking in, laying still for the therapy and then walking right back out, they have to have anesthesiologists, a bigger nursing staff, recovery rooms, etc... Even though radiation itself took 10 minutes, it would be almost a 3 hour ordeal every day for Emmett because of the sedation.)

A week or 2 before radiation is scheduled to start, there is a planning session when the Radiation Oncologist does her own CT & MR... Long story short, Emmett was still inpatient with fevers and low counts at Children's when he was scheduled for this appointment at MGH. So we got to ride in style (most expensive taxi ride ever, I might add... over $1000 to go just 3 miles). Emmett wasn't a big fan, as you can see, especially since he already wasn't feeling well.

He'd just had surgery a few days before.  You can see the bandages still on his head from the Rickham Reservoir Placement.  They use this to inject chemo directly into the brain;  more specifically, where the CSF is produced, so then the chemo circulates with the new fluid around the brain and spine.

One day, Emmett would probably think a ride in an ambulance was exciting;  

unfortunately, this wasn't the day, but we tried to document it well for him. 

The EMTs were really nice and answered all our questions about ambulances ;)

They were happy to take pictures, too.  They probably felt like celebrities. 

I'm guessing their job is pretty mundane.  Sounds like they don't respond to a lot of emergencies;

instead they just do a lot of planned hospital transfers.

 When Emmett woke from the sedation for the CT, he was still pretty mellow.  Usually he wakes up from sedation ok, but since he wasn't feeling great to begin with, he wasn't too lively.  (Plus, the CT room he was in had a cat obsessed tech or something.  There were kitty posters and cat calendars and probably someone's pet cat hanging out in there somewhere.  Maybe it was a little too much)

They had toys waiting for him on his recovery bed.  But instead, he saw the janitor's closet 

open across from his bed and wanted this broom.  That's my boy

 This is after he's done and on our way back to Children's

Back 'home', safe and sound

His second ambulance ride was about a week later. He was still inpatient at Children's when his first day of radiation was scheduled. Emmett was equally excited and the EMTs were a little less friendly, so no pics. Plus, been there done that....

For Cole

We have mentioned Keith on this blog before, also- another family that has been through all this and been an inspired support to us from far away. Keith's parents were in town for his Mom to run the Boston Marathon! We got to meet them at church the day before which was bittersweet....bitter for what we have in common that brings us together and sweet because we finally were able to meet. Keith has a twin brother, Cole, who didn't come on the trip but requested a picture of his parents with Emmett in his lion costume.  Unfortunately, we hadn't foreseen this request and he was wearing a boring shirt and tie for church.

The next day, On Marathon Monday, we were at mile 19 to cheer on the runners and we stood in the street when we knew Darcee was going to be running by. We brought Emmett's costume and this is exactly the picture I was hoping to get! (thanks ep) You can see Darcee running (she has a special logo with a K on her shirt).  This picture is for you, Cole!  (Plus, a lion's easy to spot, so it was a good landmark to see where some of her cheering crowd was).  The lion has become our little symbol for fighting and doing hard things, of course, so maybe it was a little motivating, too, right before the famous heartbreak hill!   

Someday we hope to meet the rest of the family, but for now, we're grateful for the little visit we had ;)  Thanks for taking time to see us!

Stephen's Run

For all of you athletes in Albuquerque:
 

I've been meaning to post this for a while, since it's obviously coming up here pretty soon.  We have mentioned Stephen and his family before, as they have been a great support to us.  Stephen was also diagnosed at UNMH (in Oct 2011) just a few months before Emmett was and sadly passed away a year ago.  For the run this year, they have chosen to help Emmett which is very sweet. We also think this is a great way to honor and remember Stephen.  We continue to hear what an amazing little boy Stephen was and feel that this event captured his personality and shows a lot of moral support for his family.  Last year's run was said to be "... filled with so much compassion, hope, faith and love, and ...if we all come together once again it will be yet another moment and day in our lives we will never forget!"  We hope to be there next year for this!

For more info, check out the Facebook page here