Sunday, December 6, 2015

Camp Sunshine

Last weekend we had the opportunity to go to Camp Sunshine, a retreat for children with life threatening illnesses and their families.  It's located on a Sebago Lake in Maine.  It was a wonderful experience.  Emmett and Clayton both made lots of friends.  70 volunteers from across the northeast came to host the camp.  The weekend was full of lots of fun activities including swimming, ping pong, air hockey, pool, arts and crafts, Frisbee golf, miniature golf, and much, much more.  The ice skating rink wasn't frozen yet, and the lake activities were closed for the winter, but there was still plenty to do.  

Here's Emmett enjoying some time by the lake in what turned out to be a weekend of amazing weather.


Emmett and Clayton quickly made lots of friends with the counselors.  One of the most rewarding experiences as a parent is to watch other people get to know your kids and fall in love with them.  And that's exactly what all these counselors did.  They were so excited to get to know and love these kids with all these challenging illnesses.  They'd come up to us at the end of the day and tell story after story of all the things Emmett had done or said throughout the day that were so cute or hilarious...and the same thing with Clayton.  And we couldn't help but fall in love with all of them too.  Here are a few of them.

And here are some of the activities we got to enjoy over the weekend.

Clayton chowing down on popcorn.

Clayton enjoying kicking back on the mini golf course.

Emmett on the Frisbee golf course.

We had to get a picture with Mike and Sully!
And Emmett had to bring his new helicopter to camp with him (yes, Emmett found a new helicopter on his second "toy day" at radiation.  So mom, me, and Emmett are all feeling much better after letting his first one fly into the street and get run over).

The weekend at Camp Sunshine culminated in a talent show put on by the cancer kids.  It was one of the most awe inspiring things I've seen in my entire life.  Imagine these precious children, fraught with the physical and mental challenges that accompany malignant brain cancer, climbing out of their wheel chairs and walkers to break dance and lip sync to pop songs such as "what doesn't kill you makes you stronger" and "this is my fight song, take back my life song" in an effort to inspire one another to keep fighting the monster of cancer that haunts them all.  This was nothing less than the 'YouTube cancer kids' music videos come to life....for real.  And some of the kids we saw are not expected to survive much longer.  And watching them up on the stage absolutely melts your heart and breaks it at the same time.  Heroes.  Warriors.  Angels.  Precious Angels...that are facing the greatest challenges in life...greater than I can comprehend.

And to think that our precious little Emmett is one of these cancer kids.  I can't dwell on the thought.

After the talent show there was a masquerade ball.  Emmett has never been a dancer, but he threw on his green hat and ran out on the dance floor before we knew it.  And it wasn't long before he was in the middle of it all.  He ended up being the star of the show.  He told me afterwards, "at first I was nervous because I don't know how to dance, but then I realized, I'm a really good dancer."  All the counselors thought so too.  It reminded us of the days on 9 north when Emmett would hang out at the nurses' station.

What a fun, inspiring weekend.  What a wonderful opportunity for cancer kids and their families.  God bless all those who donate their time, energy, and resources to lighten the burden of pediatric cancer!  Go Camp Sunshine!

Thursday, December 3, 2015

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.