Radiation (take 3)

Emmett started radiation this week.  He has done wonderfully in every meaning of the word.  He isn't nervous or scared in any way and actually seems to look forward to getting his treatment each day.  He sits perfectly still while they put on his radiation mask (which holds him perfectly still during treatment) and at the same time Katy or I start a playlist of his favorite music which helps him stay calm and focused (and pumped up!) while they verify his positioning and then administer the focal radiation after everyone leaves the room.  (More on the playlist later....maybe.)  They tell us that the radiation beam is only on for ~30 seconds or so. All said, he's in the radiation room less then 15 minutes and then he comes and finds us in the lobby of the Francis H. Burr Proton Therapy center and we collect our things and head back home.

In years past when he required sedation during radiation we had to be there an hour before his scheduled radiation time and we wouldn't leave until perhaps 30 to 60 minutes afterwards depending on how long it would take him to wake up from sedation.  Now, we can be in and out in less than 30 minutes if everything goes smoothly, and that is amazing!  In addition, because they do the sedation patients early in the day, in years past we would be leaving the house at 6:30 AM and would sit in more than an hour of rush hour traffic on the way in.  Now, without sedation, we can schedule later in the day when traffic is light and that reduces the stress that much more.

Clayton never wants to be left out and he wants to come with us to radiation each day.  The boys both got a nice treat when the Boston Bruins came to the clinic last Wednesday.  The boys had a great time visiting with the hockey players who were all very nice.  Some of the players jumped right down on the floor to play with the kids.  Emmett enjoyed comparing scars with one of the players who had seen some action on the ice the night before (can you  guess which player it was?).  He agreed that Emmett's scars were by far the most impressive.

All said, things are going very well.  We're a week in to radiation, Emmett is feeling healthy and upbeat, and we're enjoying the monotony of a daily routine for once.  And Christmas is next week!

We appreciate the thoughtful cards and letters we've received from many of our friends back home in New Mexico and from friends and family around the country.  Your encouraging words bless and strengthen us -- thank you!  We wish you all Merry Christmas and hope you enjoy this special time of year when we remember and celebrate our Savior's birth.

One of Emmett's favorite pass times.

Emmett's toy from "Toy Friday" after his first week of radiation!  He loves it!

A good place

We got good news on Emmett's MRI results; everything looks stable.  They did mention that there's a lining near the tumor site that picked up a little contrast, but it's impossible to tell if it's because there's residual tumor there or whether it's the result of post-surgical change (scar tissue, etc.).  And that area is within the radiation field, so it will get treated either way.  We're happy about that.

We were glad that things looked stable and that there were no new areas of concern identified.  We also were glad that there were no questions raised about the area in his neck that got treated in Denver over the past year.  (We're always worried something might start happening there since he's not taking the EZH2 medicine anymore.)

All said, we're cleared to start radiation this week.  Emmett's first treatment will be Monday (moved up from Tuesday). 

With a full resection of Emmett's tumor, a clean MRI, and radiation and chemo starting this week, our family is in the best place possible, considering all the circumstances.  And for this we are very VERY thankful!  There is currently no disease that is posing a imminent threat to Emmett, and we're starting treatment from a clean baseline, and that's the best place we could possibly hope to be in.

Emmett is his happy old self again.  This week he has been obsessing over a toy trash truck that absolutely blew his mind when he saw it on Tuesday.  He's been talking non-stop about it all week and begging us to take him to buy it (with his own money).  We finally gave in yesterday, and he was very excited to bring it home.  He and Clayton have been playing with it constantly over the past day, and they're having so much fun.

Christmas is coming and everyone is getting excited.  And as far as we know, Emmett is healthy right now!  We feel like we've been given the gift of another Christmas where we will be in a good state mentally, where everyone is healthy, and we are hopeful about the future.  We have come to treasure these periods in our lives...and we pray that this one will last indefinitely.  We really do hope and pray that all the tumor is gone, and that the treatments will be effective.  Maybe another spot won't ever pop up again!  That's what we will continue to pray for!

The calm before the storm

Emmett's recovery from surgery has gone well.  The first week was pretty rough, he was rather discouraged by how different his body felt and how much pain he was in.  Feeling the stitches in his head was very strange.  He wouldn't open his mouth very much and didn't want us to make him smile or laugh.  Once he came off the post-op steroids his spirits brightened up significantly, and one week after surgery he was pretty much himself again.  And we were very glad to have him back!

Last Friday we had planning for radiation at Massachusetts General Hospital (MHG).  This involved a consultation with the radiation oncologist and a "mask making" session in conjunction with a CT scan.  The mask is to hold Emmett's head completely still while they administer the radiation to make sure that it goes to the right place.  They did a great job teaching Emmett was a radiation mask is for and they even made him his own mask that he could bring home.  Emmett did extremely well when they made his real mask and he actually seems a little excited for radiation.  In the past he did radiation sedated, but this time they think he can do it awake.  They suggest making him a playlist of his favorite music to listen to each day during his radiation sessions.  (He'll get radiation 5 days a week for 6 weeks, most likely).  I think Emmett is going to request some of the classic rock songs he's learned from some of his favorite Pixar and Dreamworks movies....I'm not sure how mom and dad feel about that. 

Clayton enjoyed the consultation with Dr. MacDonald perhaps even more than Emmett.  Clayton we've learned is very heterosexual and he gets so excited whenever there are new "gurls" around.  He was excited to ask Dr. MacDonald if she knew what bladders were and told her all about the pig's bladder that Laura and Mary played with like a balloon after Pa and Uncle Henry butchered the pig in the book "Little House in the Big Woods".  He then asked Dr. MacDonald if she was going to come with us in our car to Camp Sunshine up in Maine that night.  (What a way to warm up a girl before an invitation for a date!)

Camp Sunshine was a wonderful experience -- stay tuned for more on that.

Today we're back in the medical world and Emmett is getting his "post surgery, pre-radiation MRI".  We're praying that everything looks good to start his therapies as planned.  Radiation starts Monday and chemotherapy will be shortly after that.

The boys were excited to get a Christmas tree this past Monday and we even got a small tree to put in their room upstairs.  We are all excited for the Christmas, especially the boys!  The bad news is that Emmet wrote another letter to Santa yesterday and it was even bigger than the first...and I have a feeling that there will be more.