Radiation Simulation

We got the radiation simulation results today.  This is one of the images.  There were 9 images total...slices through Nate's abdomen.  Honestly, when I first scrolled through the images, the room started spinning and I felt like I was going to barf.  I really just don't like seeing all of Nate's little organs that are going to be radiated.  This is actually the inside of his sweet, little tummy...and that is actually radiation.  Sometimes I just take a step back and say, "What the hell!".  It this really happening to my baby?

As you can see, though, proton therapy is clearly better for Nate.  The red is the highest dose of radiation, where they are actually aiming.  The yellow, green, blue is a descending dose of radiation.  Proton therapy is on the left...traditional (photon) radiation is on the right.  By getting proton radiation instead of traditional radiation, we will be sparing much of Nate's bowels, liver, heart and left kidney.  The radiation oncologist was even surprised at how beneficial protons are going to be for Nate.  Nate is a bit of a special case (which we've always known), because his tumor was taken out before chemo was started.  Normally, they don't even try to remove the tumor until after the 5 rounds of chemo...then they base radiation on the size of the tumor when it was removed (after it shrunk from the chemo).  Nate's tumor was never given the chance to shrink because it ruptured, so they will be radiating based on the initial size of the tumor (without any shrinkage from chemo).

  The real truth is that we will never know if choosing proton radiation for Nate actually will net him any benefit in the future.  Neuroblastoma patients get a relatively "small" dose of radiation compared to other cancers, but radiation is still radiation and it carries with it the risk of secondary cancers later in life.  We just feel that the potential benefit to Nate in the future outweighs the temporary inconvenience of being away from home for 2 and 1/2 weeks.

So...proton therapy in Houston it is.  We will leave on Easter night and Nate will receive his first dose of radiation at 7am on April 9th.  I'm scared.  I know that most people contend that radiation is by far the easiest part of treatment...and I'm counting on that.  It's just that Nate is doing SO well.  I don't want him to be tired or nauseous (the 2 most common side effects).  He's eating well, takes his medication without throwing up, and has so much energy.  He's gaining a bunch of weight and is even starting to look appropriately "3 year old chubby" in his face.  He has a little meat on his thighs and he has his butt back!!  It will break my heart if he loses his appetite and energy from the radiation.  Well...one day at a time.

Today...Nate is awesome!  We went to clinic today and all his numbers are great.  His hemoglobin started trending up on it's own, so no need for a transfusion.  He hasn't needed a single transfusion since being released from his bone marrow transplant.  He's been off of IV fluids all week and his kidney function and electrolytes were all perfect.  He spent the day fighting with his sister and playing with his brother and neighborhood buddies.  He's just enjoying being a regular kid.