The Changing of the Guard!

I had a wonderful Sunday watching Aaron in his Primary Program, catching up with good friends and neighbors, and getting lots and lots of hugs -- that's what I needed most.   Then we spent the afternoon carving pumpkins with family at our annual party.  All the cousins got to FaceTime with Brendan.  It was a nice break!

I returned to Primary Children's Medical Center this morning after walking Aaron to the bus and waving good-bye as the bus drove away.  Feeling pulled between home and the hospital is rough right now.  Not knowing when I will be back makes it harder.

As I parked the car and headed through the parking garage with my arms weighed down with bags of clothes, presents and cards for Charlie, and other "hospital necessities," I put on my yellow parent badge and felt like it was my final transformation for returning to life here at Primary Children's.  (Funny thing, when I was at home on Saturday I got dressed and put my badge on just out of habit.) 

I walked into the room just as they were getting Brendan up to head over to the Huntsman Cancer Institute for his radiation simulation and planning meeting.  Brendan was not feeling very well (tired and a headache) and had to be coaxed out of bed and into his wheelchair.  Shaun and I, not knowing what to expect,  just followed and watched for awhile. 

 First, Brendan was wheeled out of the hospital and loaded into a van.  We were driven around the corner to the Huntsman Cancer Institute by one of the security guards and accompanied by one of the techs.

Secured into the van for the short ride to the Huntsman Cancer Institute.

 We checked in at the Radiation Oncology center and they took us right back to the room with the CT scanning machine.

Checking in at the radiation oncology department.

 Brendan was helped onto the table and his head lined up with the red lights.  They tried to align everything perfectly, but Brendan was more comfortable with his head tilted a little to the left.  They didn't want him to have to sit in an uncomfortable position the whole time, so they aligned him the way he was comfortable.  As long as he lines up the same way every time, we are good.  And the mask makes sure he does.

Getting onto the table in preparation for the mask and a CT scan.

Finding something comfortable to rest his neck on.

Marking Brendan's face with a sharpie to line up his head correctly each time.

Warming the plastic then forming it around Brendan's head to make his mask.

Forming the mask around his nose, chin, and ears.

Letting the plastic harden.

Moving in for the CT scan

CT scan

Waiting for the doctor to check the CT scan

 Dr. Poppey told us that Brendan's radiation is scheduled to start November 9th.  We will have a practice run on Friday, November 6th to make sure everything is ready to go.  He will have 33 treatments, running Monday through Friday for about 6 weeks.  (They are giving him Thanksgiving off. . .)

While it seemed like everything was set, there is now discussion about whether to radiate the lymph nodes, or remove them.  Or radiate them, then see if they need to remove them.  Since no one knows much about this type of cancer and how it responds to the different treatments, they are consulting with more doctors to see what everyone thinks is best.  Depending on what they decide, we may have to come up with a whole new plan. . . We're getting used to that.

Brendan can decorate his mask any way he wants.  Aaron wants him to make it Spiderman!

As a parting gift, Brendan got a tattoo dot on his chest so they can be sure to line him up correctly each time.  

While waiting for the van to come pick us up, we enjoyed Jim Jensen playing his accordion.  He comes to play whenever he's not busy working at the Bountiful Temple.  He does a beautiful rendition of "Amazing Grace," and was so impressed with Brendan that he gave him a CD of his music.

 We enjoyed the fresh air, the view of the Salt Lake Valley, and the sunshine on our faces while we waited for Brendan to be loaded back into the van.

Home again, home again, jiggety jig

 While waiting for the van, Brendan thought he would starve to death!  He was so hungry he couldn't think of anything else.  So he sent his dad ahead (he didn't want me to push too fast because it hurt his head) so food would be ready when he got to his room.

He downed the fruit loops in no time.  The tech brought mac & cheese to round out the meal.  Then he ordered lunch consisting of a salad and a cheese quesadilla.

 Then he settled in to rest and read a few cards while waiting for his lunch to arrive. Unfortunately for him, lunch and the physical therapist arrived at the same time.  So he was off to therapy.

 The occupational therapist had him putting puzzles together to begin with.  I ran out to the car to get some of my things before Shaun left for home, and by the time we got back, Brendan was just returning to the room.  He was just so tired, they felt like he needed to rest.

So physical and occupational therapy will go something like this:  Getting up in the mornings and dressing himself, eating by himself, and getting to the bathroom.  Then rest.  Occupational therapy will start at 10 a.m. for 30 minutes and build up time as he can tolerate being up.  Then he will come back to the room to eat and rest.  Physical therapy will start at 1:45 p.m. and will increase as he can tolerate it.  In house therapy will increase to 3 hours a day.  Afternoons will be reserved for nap time as they know that is as much a part of his recovery as the strength building.  Then visitors and activities in the evening depending on how he is feeling.

Shaun leaving for home.

Oncology is now scheduling Brendan's hearing test.  They will check his hearing before radiation and keep an eye on it during radiation to see how the radiation affects his hearing.

 After such a busy day yesterday, and all the activity today, Brendan just wants to sleep. . .Oh, and eat!  A little sleep, then more eating.

 As the day has gone on, Brendan has been feeling worse and worse.  We are now back to total darkness and no noise.  We were told there would be days like this, with changes in the pressure in his brain.  His cerebrospinal fluid is fluctuating and he is having to adjust to being up.  Hopefully, these days are getting fewer and farther between.