Shoes

Emmett loves shoes; truthfully, he really likes clothes in general. Even months ago, I'd hold out 2 shirts and let him pick which one he wanted to wear and he would really look back and forth between the 2 and decide. He really has opinions on what he wears. It's pretty funny. We found some flip flops for him this summer and he wouldn't take them off. The sandals and his feet both stank like a teenage boy's feet. He'd sleep with them on. If he wasn't wearing them, he'd ask for them. Even in the halls at the hospital or out on a walk random people would comment on his flip flops.

The other night....or since I'm so slow at posting, last month is probably more like it, Emmett took a nap and his pants are wet, so we took them off as he was falling asleep.  When he woke up, all he wanted to do was go downstairs (our bedroom is upstairs and all the fun and toys and people are always downstairs) and was very opposed to taking a second to put pants on.  However, he still wanted to put shoes on and was willing to take a minute to do that.  So he hung out like this for the night.  He makes me laugh!

Here he is with his very stylish cousin, Tyson!

easy breezy bathtime

Emmett had his Central Line taken out a few months ago now, when there was an infection. The intent was to put in a temporary PICC Line and replace the CVL in a few weeks. However, that was in the middle of not really knowing what they were doing to do next. When they decided to essentially buy some time with 2 more rounds of chemo, they just left the PICC line in since they could do the chemo through that. No need to go to the OR for a new CVL until they decided he needed one again. A CVL is a permanent IV essentially that comes out of his chest and has a dressing around it that has to stay clean to keep the site sterile. When he bathed, I'd have to wrap his whole chest up and try to keep it dry. Needless to say, it is MUCH easier to just have to wrap his arm where the PICC line is and he begs for baths now!

Fire Time

One of my early memories of Grandpa T was being taught how to build fires in the wood stove.  One time he even let me hold the match, and as it started to burn close to my fingers he told me to hold the tip of the match up so it wouldn't burn me.  Unfortunately I tipped it the wrong way and burned myself good!  Needless to say I've never forgotten the experience of that day.

Grandpa always challenged my brother and me to build "single-match fires" -- a demonstration of skill.   Funny how he preferred to use the blow torch.

I enjoyed seeing the tradition of grandfathers teaching grandsons how to build fires continued this year.  And I'm happy to report there were no casualties!

YAY for fires and hot chocolate and snuggly soft blankets!  (And yes, he does try to blow this fire out, too.)

The Parked Truck

Turns out the Kenton Landscape/Masonry, who are the ones that actually dropped the trucks off in our yard for Emmett a few weeks/months?!? ago, are not that far away. So sometimes we head down there and Emmett visits his old friend, who has been parked on the lot most days. And finds that same button that makes the beeping sound. Cousin Tyson came, too, last time!

Meet Destiny

On October 5th Emmett began his 7th round of chemotherapy after having about six weeks off. It was a Friday afternoon and we started in the Jimmy Fund Clinic where they began Emmett's pre-hydration (you have to be pretty hydrated before they'll start dripping chemo into your veins).  This round included a three-day infusion so later in the day we were admitted to the hospital.  It was apparently a very busy on 9 North (our usual home) so they sent us down to the 6th floor, argh! (6North is the general oncology floor, where they are obviously know all about chemo, etc...., but we just don't know any of the staff personally.  We have stayed on a floor before that was for organ transplants-kind of cool-but they aren't familiar with his meds or any of that stuff.  We were glad he wasn't getting chemo during that stay!)  This had only happened once before, and we were only there for a night or two before we were able to move back up to 9N where we know and love all the staff.

We were a little sad to be away from our usual friends, but one bonus was that Emmett was new to this place, so he didn't know where the elevators were and didn't know his way around, which means he was happy to play in the play room (which is actually a little bigger than the one on 9N and has an amazing view) and wasn't trying to run around the whole hospital, like usual.

On Saturday, when Emmett was in the playroom, this pretty 11 year old girl came in and started painting and Emmett showed a liking to it, so she gave him the Halloween pumpkin she made (and later painted him a pink car...Emmett's color choice ;). And from then on, she just adored Emmett and has been so nice to him! She's here from Alabama with her mom...for a full month! That's a long time to be in the hospital away from the rest of your family! They did bring us back to 9N, but when we left Tuesday morning, we made sure to go down and say goodbye to Destiny, too! She is the sweetest girl we've ever met I think! We're happy for our short stay on 6N so we could meet her. 

(Lately, its been harder and harder to get Emmett to smile for the camera, Little Stinker!)

Here's her handiwork:

Medical Update

We wanted to provide a brief medial update.  For those less familiar with Emmett's treatment history, we started him on the Dana Farber protocol for treating ATRT in March.  The protocol involves an induction phase and a maintenance phase.  The induction phase involves surgery, chemotherapy, radiation (with chemotherapy), followed by more chemotherapy.  Induction typically lasts about five months.  The maintenance phase consists of more chemotherapy but at a lower intensity than induction chemotherapy.  The maintenance phase lasts seven months.

The key metric in determining survival is whether the tumor is gone at the end of induction chemotherapy.  Those who have survived have been tumor free at the end of induction.  Those who have moved onto maintenance therapy still having bulk tumor visible on their MRIs have eventually passed away.  Unfortunately Emmett still had tumor on his C7 nerve root between his spine and his left brachial plexus on his 9/5/12 MRI at the end of induction.  This left our doctors scratching their heads as to the best path forward.

Our oncologists recommended two measures for getting rid of the remaining tumor.  Option one is high dose chemotherapy with stem cell rescue.  Option two is drastic surgery to remove the tumor which would leave Emmett physically disabled to some degree, but to what extent they can't say.  The oncologists recommended doing surgery first followed by high dose chemotherapy with stem cell rescue to mop up any remaining cells.

The neurosurgery team was not so anxious about a surgery that would leave Emmett with a disability, especially if the oncologists couldn't convince them that the surgery improves Emmett's chances of survival (which they can't).  Meanwhile, the stem cell team came back indicating that they wouldn't accept Emmett as a patient if he still has bulk tumor because stem cell alone wouldn't be enough to get rid of the remaining tumor.  This left our oncologists leaning harder on the surgery team.  Twice in September we told our oncologists we'd like to move forward with surgery, albeit hesitantly, and twice the surgery team refused to schedule the surgery.  Needless to say there's been a fair bit of friction between Dana Farber pediatric oncology and Boston Children's Hospital neurosurgery over the last month.

One thing that makes this so difficult is that there is no clear best path forward...how much are you willing to sacrifice to increase your child's chances of survival?  What if there's no guarantee that you're increasing their chances of survival at all?  Where does it leave you if your medical teams cannot agree with on what path forward presents the best outcome for your child?  Honestly there are no best answers, no clear best path forward.  Dr. Chi indicated that this is probably the most ethically challenging case she's had to consider.

Finally, in early October, our doctors came forward with an interim plan: conduct two more rounds of chemotherapy similar to what he received previously in induction, then re-evaluate to see how the tumor has responded.  If the tumor shrinks or remains stable, that strengthens the case that we have some control over the tumor and justifies surgery to remove the bulk of it.  If the tumor continues to grow through therapy, that indicates that we can't control the tumor so removing bulk still doesn't pose a good long-term solution and other options need to be considered (what those options are we have no idea).  So we started down this path early this month and are about to start the second round of chemotherapy today. (In the meantime we're pursuing second opinions at other hospitals to make sure our doctors haven't missed anything.)  Emmett also had a round of intrathecal chemotherapy in September while our doctors were struggling to come to consensus on what to do.  He also had an MRI (to serve as a baseline for these two interim rounds of chemo) in conjunction with the first round of chemo this month which indicated no significant changes since early September.

The good news is that Emmett continues to do well clinically!  He has lots of energy and spends every waking minute of every day wringing out every ounce of fun he can.  Sad as it is to say, he's been our strength through it all, often buoying us up when it should be just the opposite.

Clearly this has been a difficult time for us...much prayer, pondering, fasting, introspection, and soul searching.  We appreciate so much all of you who are praying and fasting with us!  (Go City View!)  We're anxious to move forward with therapy, but we're also loving absolutely every second of every day we get with Emmett having full use of his arms.  (Though yes, his left arm is already somewhat impaired).

We've seen many miracles throughout Emmett's treatment and we feel strongly that more are in store.  Please pray they continue!

Emmett enjoyed seeing his name re-written on the scaffolding outside 9 North.

Band Aids

Emmett has to have a daily shot after his rounds of chemo  to help his immune system recover faster.  This is of course torture for him to have to get it and torture for me to have to give it.  One thing that has made it easier is that the last 2 weeks, he has finally gained an appreciation for fun bandaids!  YAY!  Even during his tears of the shot's aftermath, he will smile and be excited to see what bandaid he's getting.  Last week in the hospital when the nurse gave it, she asked if he needed a bandaid.  I told her that I wasn't trying to be difficult, but it really would help if she had a cute one...and she found a Curious George one somewhere (which is a huge favorite)! 

2 nights ago, I let him go the band aid drawer and let him pick out his own (grandma has quite the stash).  I wasn't sure this was a good idea, because he'd go there all day and try to get bandaids and the novelty might wear off.  Last night, Aunt Besty Pants also let him pick his own (I'll let you in on a secret-it's very hard for him to pick one), plus she started the new tradition of putting on as many as he would like. 

So here's what he looks like tonight:

 Only one bandaid on each leg is a real war wound, but he gets very excited to point to each of them and count up all his bandaids.  Plus, he saw his lion costume on the bed around dinner time and kept hugging it to his chest and saying "Mum...Mum...Mum" as if asking for help getting it on.  He thinks it's everyday wear.  Last night we put it on and he was so excited to put it on.  It's like footie pajamas so I laid it down on the bed and he scurried over and laid sideways across it, trying to help get in position to zip it up.

 These bandaids also all have names:  The first one is "WackWack" (as in quack quack, because that is what all things with beaks say);  2nd is "y'ow" which is short for yellow and 3rd is "Brs" for bears. 

Since he has started loving bandaids, he will randomly want to pull up his pants leg in the middle of the day (or take off his pants) to see and point to his bandaid or to show of his battlescars to daddy or just to be excited about it!