Monday, May 27, 2013

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....

Friday, May 3, 2013

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!