Radiation Option

So we heard from Dr. Chi this week that MGH will consider Emmett for proton radiation.  We should hear from them to setup a consultation any day.  We also met with the radiation team at Dana Farber for consideration for photon radiation.  (If MGH will do proton, however, that's where the doctors would send us because it has fewer side effects.)

It sounds like the doctors are getting on the same page that irradiating this spot is what we should do.  We're not sure how we feel about it yet.  Well, really we are sure - we don't want to do it!  Emmett's brain has not been irradiated yet, and we would like to keep it that way unless absolutely necessary.  We heard from Dr. Fisher at the Children's Hospital of Philadelphia earlier this week and he sounded like he would recommend observing this spot instead of treating it at this point.  He also believes that stereotactic radiation against a recurrent rhabdoid tumor is not effective, so why subject Emmett to the side effects of radiation?  Especially when we have no idea what this spot represents? 

"...but so great were the confusion and strife among the different [institutions], that it was impossible for a person young as I was, and so unacquainted with men and things, to come to any certain conclusion who was right and who was wrong."  Sound familiar?

Thankfully another MRI would be required for radiation planning since it's been over a month since Emmett's last scan.  I asked Dr. Chi what she would recommend if another scan showed a reduction in the size of this spot.  She said that while not expected, a reduction in size would give them pause to reconsider their path forward.  I then asked her whether she has ever seen a tumor reduce in size without any intervention.  I had asked her this same question three years ago and her answer was "no".  This time however, her response was different: "Funny you should ask that today Micah, in our tumor board meeting this afternoon we reviewed the case of a girl who's latest scan showed a significant reduction in the size of her spot, and that was completely unexpected."

We do believe in miracles.  We hope and pray that Emmett's body will find a way to address whatever exists at this spot in question, be it inflammation, infection, or malignancy, such that the best path forward for our Brave Little Lion becomes clear.

We're thankful for the opportunity to watch General Conference this weekend and pray the Spirit will bring peace and comfort to our family as we prepare for the decisions ahead.