Sunday, November 22, 2015

Back in the saddle...

Quick recap of the last two weeks:

11/10/15:  We met with the radiation oncology team at MGH about Emmett's radiation plan.  They want to treat this spot as AT/RT recurrence.  While it's not growing quickly like AT/RT, they say given Emmett's history, it's more likely AT/RT than anything else.  They also say the spot has qualities that make it look like a secondary tumor and not a primary tumor.

They also mentioned that just the day before, Dana Farber sent word that their final review of Emmett's 8/27/15 MRI revealed two spots that are enhancing slightly.  There's no bulk to be seen here, but the nerves in these areas are picking up contrast.  Looking back in time, these spots have been picking up contrast since 2014, so whatever is happening here is nothing new (good news -- we think).

These spots are very close to the nodule of concern (within millimeters) and could be included in the radiation field and treated.  They may be part of the nodule (best case) or they may represent metastasis.  Dana Farber asked MGH to closely examine these spots with a KISS (?) image sequence on their MRI the next day.  They also wanted MGH to carefully screen the rest of Emmett's brain and spine to make sure there were no other areas of enhancement, suggesting possible metastasis (this scenario would beg for systemic treatment first instead of focal radiation treatment).

They want to treat Emmett with 30 days of low dose radiation instead of 5 days of SRS radiation.  The main reason is because Emmett got 30 days of treatment last time and he tolerated it very well and it appears to have controlled his disease.  They can't predict if SRS would have the same effect on his tumor, although they believe the SRS and 30-day dose are "biologically equivalent". 

11/11/15:  Emmett has his radiation planning MRI at MGH.  The preliminary word from the fellow was that they do not see any other spread of disease (great news), that the two additional areas of concern are still showing enhancement, and the nodule is showing a small increase in size (approximately 1 mm in each direction).  This is on par with the last few MRIs (i.e. the nodule is slowly growing).  We were hoping for a reduction that would lead the team to reconsider the need for treatment...but at the same time, were very glad to see that things hadn't changed much from his scan in August. 

11/12/15:  Emmett had his radiation planning CT.

11/16/15:  We heard from the radiation oncologist on the radiation plan.  They plan to include the two additional spots in the radiation field.  Because they're so close to the nodule they can easily be included in the radiation field.  And the radiation field will still be quite small.

When asked about the size of the nodule compared to Emmett's last MRI, she said that because they did a more detailed image sequence this time with 1 mm slices, there's no fair baseline of comparison to say exactly how it changed from last time.  They call it "no appreciable change".  She said that it might have grown slightly, and that she's sit down with us to go over the images in the coming weeks, but her travel schedule has prevented that from happening yet.

11/17/15:  We met with Dr. Chi at Dana Farber.  This is only the second time we've met with her since coming to Boston in September.  It was insightful to get her perspective.  She said that MGH wants to treat this really aggressively, Dana Farber wants to be more conservative, and at the other end of the spectrum you have Children's Hospital of Philadelphia which suggests we watch and wait (though we haven't talked to them since Emmett's last MRI).  She was a little concerned when she heard that Dr. MacDonald at MGH was going to reduce the inner ear radiation field from 50 to 45 Grey, and she wanted to talk to Shannon about that.  Dr. Chi apparently thinks we should give the full dose, even to the outlying areas.  So they need to get on the same page....especially since radiation is supposed to start tomorrow.  Likely this will result in a delay in the radiation start date.

Chi also talked about options for follow-up, systemic treatment at the conclusion of radiation.  At this point she's not in the camp that we MUST do systemic treatment after radiation, though it sounds like she would recommend it.  But the question is WHAT -- there's no protocol for recurrent AT/RT.  Essentially you're on clinical trials exploring new drugs and options.  Thankfully there is a new drug that's shown some promise against AT/RT that will be available in the next month or so.

Our perspective:
  • While we were hoping for a miraculous reduction, we are encouraged and thankful that whatever this spot represents is progressing very slowly.  In fact, we DO consider this a miracle.  AT/RT doesn't creep back; it explodes back.  So why is this growing so slowly?  Maybe because Emmett's body is recognizing it and fighting it.  Maybe it's because of all the prayers.  We like to think it's a little of both.  And throw in radiation, hopefully it runs away with its tail between its legs.  No disease has returned where Emmett was radiated.  Maybe radiation's the silver bullet.
  • We're still very anxious about commencing radiation treatment...and for several reasons.  It's scary stuff.  It's lots of sedation.  It comes with side effects, and only some of them are known.  But probably the most overwhelming aspect is the fact that by commencing radiation we're admitting that Emmett has recurred....at least in some fashion.  We're stepping into the ring again...to watch our child fight cancer.  And that's my biggest nightmare come to life.
As we mentioned in our last post, we have so so SO much to be thankful for.  We're in a great place in so many ways, and continue to feel very blessed.  The last two years since Emmett finished treatment have been absolutely wonderful.  And Emmett's still doing wonderfully.  He's loving and enjoying every day so much.  And we have reason to hope he'll continue to do well for a very long time, and ultimately will beat this disease.

And those are the things we will focus on this week as we commence radiation and celebrate Thanksgiving.

Tuesday, November 10, 2015

The Glad Game

We have a big week ahead of us here in Boston.  We meet with the MGH doctors for radiation planning.  In some ways it feels like we're stepping back in time three and a half years to when this whole thing started with Emmett...and that thought is terrifying.  However, we're not in the same place now that we were then.  We're far from it.  And it's been helpful the past few days to count the ways things are better now than they were then.


We're already connected with the best doctors for Emmett's cancer

Whatever this is, it's growing very slowly.  Emmett's tumor was fast growing before, at least at one point.

We're discovering whatever this is at the very earliest stage of visibility instead of being rushed into emergency surgery when Emmett stopped walking.  This provides the doctors the opportunity to be methodical and deliberate.

There are new treatment protocols that are showing promise against atrt

I don't have fears about losing my job like I did last time.

Emmett is doing wonderful clinically.

Emmett can communicate and tell us what he's feeling now that he's older.

This may not be cancer.

We've been in a much worse place than this before.  We've been told there's nothing left to do and your son likely won't make it.  And Emmett pulled through.

Yes, things are much better now than they were then.  And we're hopeful that this isn't a big deal at all.  We appreciate everyone who has been praying and fasting for us the last few weeks.  The ward back in Albuquerque fasted for Emmett last Sunday, and more people fasted this week.  And we've felt the strength of those prayers!