Monday, October 29, 2012

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.

Wednesday, October 24, 2012

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!

Tuesday, October 23, 2012

Our Brave BIG Lion

A friend sent this for Emmett last month and I thought it was cute.  Then I put it on him and was in love.  Just when you thought your kid couldn't get any cuter ;)
 (sidenote;  He's looking at an iPad with the front camera working, so he's
 seeing himself in costume and roaring at the 'other' lion)

Monday, October 22, 2012

For Da-ee!

We went on a hayride today without Daddy, so these are for him! We went to the 'beach' after (Horn Pond, just a few miles away from us). Emmett is obsessed with the beach lately-he can be tricked into believing the beach is anywhere that has water and rocks to throw or sand to dig.We took my sisters, who are in town!!!  (YAY for sisters!) and Grandma and baby cousin Adrik, who Emmett loves.


Here's a Halloween shout out to all our friends in NM! 
(trick or treating aliens from a UFO crash)
Emmett sat down in the middle of the mall the other day and put his arms out.  I had run into the pharmacy before and left him with Besty and Ren.  Besty said he kept doing this and couldn't figure out what he wanted.  I laughed-this is what he does when he wants to hold Baby Ben, who lives close by. He just sits down with his arms out.  So he sat on the floor of the mall and held his visiting baby cousin.  It was pretty cute, but the lady that almost tripped over them seemed annoyed.  We've caught Emmett a few times sitting down waiting for someone to hand him a baby.  Here's his latest catch tonight.  


Wednesday, October 10, 2012

answer key

You can see how one thing led to another and he got himself up under the crib! There's a rut for an oxygen tank or something that was a perfect road for the truck to ride in. He loved it under there.




Tuesday, October 9, 2012

look at that face

Emmett's feeding tube came out last Thursday night. Usually he gets his feeds over night and to have the tube replace we either have the VNA (visiting nurse) come to the house, or we have to go down to the ER. Since we were planned for an admission and chemo on Friday morning, we just waited it out and decided he'd be ok til the morning. In the meantime, we were able to see his face for a while for the first time in months.
 Here's the handsome little devil...and Emmett looks pretty good, too ;)


He's gotten lazy in his sign language, but this is him signing for candy. The sign is really done on your cheek, but he's used to tape being on his cheek and is very cautious of his tubing, so he signs it on his chin now.  There's a CVS/drugstore in the lobby of Children's and he usually picks out a bag of candy there (and pretty much never eats it, but he loves the tradition and likes to pick something out and swipe the credit card). This is him in the parking garage Friday morning (he wanted to stay in his jammies).  He recognizes where we are and starts asking for candy before we're even out of the car usually.

Saturday, October 6, 2012

Where's Emmett?

Here's his crib and his IV pole behind it with chemo running, so there's proof that he's got to be close by.
Can you find him?

Wednesday, October 3, 2012

diaper change

Lately Emmett loves to throw away his diapers. In fact, this morning, he had a cow because Micah helped him by taking the dirty diaper from him and throwing it away. Micah fished it out of the trash and gave it back to Emmett, not realizing how much he likes this chore.


Now if only I could teach him to change it, too....

Monday, October 1, 2012

Peach Fuzz

Yup, look closely! That is some peach fuzz on the top of his head! It's very blonde and very short, so it's hard to capture, but imagine that blurriness around his head and bumpiness on his scalp is hair that you can see. In person, it's there; trust me. My sister noticed it last Tuesday when we were in clinic. Just the day before, I had noticed eyelashes coming back, so he's going to be one hairy monster at this rate! I'm guessing it won't stay long, because hopefully he'll be starting some kind of treatment again soon, but he's had about a 6 week break, which is just long enough for hair to come back, apparently. 

I had to put this up because I didn't know Emmett could take a bad picture ;)
(I know, I'm such a conceited mom), but this one made me smile.