Tuesday, October 27, 2015

October Update

Mass General has scheduled Emmett for proton radiation starting 11/23.  Before they can begin radiation they need a new MRI combined with a CT.  These two scans fused together will allow the hospital to plan how they will administer the radiation (i.e. what shape should the radiation beam be, what angles should it come from, what structures will they have to go through, etc.).  This should also let them determine what the expected side effects will be.  We haven't committed to this treatment yet, but to learn the side effects you have to at least go through the planning process.

If Emmett's spot hasn't grown in size, they will probably recommend stereotactic radiation.  This will mean only a few treatments to zap a small spot.  If Emmett's spot is larger, they may recommend a larger radiation field and more treatments.  They have him on the schedule for 30 treatments, but will cancel the ones that are not needed.

As I mentioned in my last post, the doctors have seen spots get smaller on their own without treatment on rare occasions.  They still don't know if this spot represents cancer.   But they don't like to take chances.  And if Emmett's next MRI on 11/11 still shows this spot, they will definitely recommend we go through with radiation, and perhaps other follow up treatments.  We have taken Emmett's treatment a different path than they have recommended before, though, so we will see what happens this time.

Emmett continues to do wonderfully clinically.  From all appearances he's your normal happy, healthy boy.

We're praying that Emmett's body addresses this spot on it's own, whether it's malignant or not, such that his next MRI will lead the doctors to consider a different course of action.  We are also praying that if Emmett needs more treatment, that his mind and his body will be protected from any ill effects.

We invite any and all to join us in this prayer.

Saturday, October 3, 2015

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.