Proton Radiation Therapy

Emmett is back in treatment.  And I can't begin to describe how sobering those words are.

Emmett started his radiation treatment last Monday, 11/23.  The treatment is every morning, Monday through Friday, except holidays.  So that means he had a short week last week with Thursday and Friday off.  He got anesthesia with a gas mask last week because he didn't have any central access (i.e. permanent IV).

It was nice to have a holiday break so soon after starting the next phase in Emmett's battle against ATRT.  It's so emotionally overwhelming to be back in treatment.  We were glad to spend a few days with family and enjoy the distraction of making a Thanksgiving dinner.  My (Micah's) parents and two of my sisters drove here with their families for the holiday.  All told, we had six kids under the age of five in the house, and it was so much fun.  No shortage of excitement and people to play with.

This week we're back to the grind stone.  He got a port-a-cath surgically installed Monday so he no longer needs a gas mask for his anesthesia.  This allows the doctors to administer the "sleepy medicine" directly into his blood stream.  This is much less traumatic for him and he isn't afraid of his treatments anymore.

Emmett has his treatment every morning.  Because he gets anesthesia he can't eat before treatment.  We spend about an hour in traffic driving to the Francis H. Burr Proton Therapy Center.  Then Emmett gets to play in the toy room for 10 minutes or so until they call us back to the pediatric staging area.  Katy and I alternate who takes him back each day and the other stays with Clayton.  When we get to the staging area we spend another 10 minutes with the nurses while they connect his tubes, check his vitals, and get him ready for the beam room.  While he's waiting he gets to play with one of nurse Rachel's iPads which he loves because they're full of games.

Then we get called back to the beam room and they wheel Emmett's bed down the hall while he's still playing on the iPad.  Then we carry him over to the table, and he enjoys changing LED lights on the "spaceship machine" or continuing to play on the iPad while they prepare him for anesthesia.  The last two days the only thing that's been able to tear him away from Minecraft is IV propofol.  Then it's a kiss goodnight, then I head out and meet Katy and Clayton and we go upstairs for a prayer and something to eat while Emmett gets his treatment.

About an hour later we get called back to the pediatric staging area where Emmett's waking up from sedation.  He usually wakes up pretty fast.  Then it's back to the car and we're on the road home.  (Sometimes Emmett talks us into stopping for a treat somewhere along the way.)  All told it's about a four hour round trip.

Friday is toy day.  Emmett is so excited to get a toy tomorrow!  Last week he chose a toy helicopter.  He was so excited to fly it when we got home and he kept asking if he could fly it outside.  I told him no, absolutely not.  Uncle Mike also told him no.  But then he asked Katy, and she said yes.  Well, the next thing you know the helicopter's in the middle of the street where it gets run over by an SUV.  We're just so glad Emmett had the sense not to chase it.

Emmett was really sad by the loss of his toy, and Katy felt so awful.  Yet I felt this was a great learning experience for a young boy...though I felt bad too.  Hopefully he'll find another good toy tomorrow. 

And this is our life until the beginning of the new year.

All said, it's not a bad life.  Emmett's condition is stable.  He's receiving treatment each day to control his disease.  He's tolerating it well.  And so far it's not making him miserable like the chemotherapy he's had in the past.

I fear the day at the end of radiation when we have to decide whether to subject him to more chemotherapy.  That will be a very hard day.  But we're not there yet, and Emmett is doing well.  And we'll continue to take one day at a time.