Working for Long Term Success

Compared to the last week, today was a very mellow day.  Without all the doctors, Physician's Assistants, and Fellows, there was not a lot going on. 

Last night, Brendan had the tape holding his feeding tube in place cut back a little bit.

Today, Brendan took time to try to rub all the loose hair off his head.

And he enjoyed soaking up a sliver of sunlight this afternoon.

  After 48 hours at home (decompressing from the stressful week and getting caught up on laundry), I headed back to the hospital.  Maddy, Landon and I had a nice drive to Salt Lake.

 Upon returning to the hospital, I found Brendan in great spirits.  He's laughing, he's teasing, he's joking around with everyone.  He was glad for a visit from Sheldon & Angie.

 And from Maddy and Landon.

 Unfortunately, they had to return home before the weather got too bad and they didn't get to stay very long.

Later, Sarah and her friends, Yushi and Hunter, dropped in for a visit.  Yushi finished teaching Brendan how to solve his rubik's cube.

 And there were lots of jokes about muscles and steroids.  Brendan was extra hyper today and, having put on an extra pound or two, was feeling pretty buff.  He starts the steroid taper tomorrow.

I just got word from the nurse that Brendan will be scheduled for a full body bone scan tomorrow.  I think it may be a PET scan. He will be going to "nuclear medicine" to have it done.  Here is a definition:

A positron emission tomography (PET) scan is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. A PET scan shows how organs and tissues are working.
The nurse asked me if I knew what they are looking for.  I had to admit that I'm not exactly sure.  I know they want to look at the bone marrow spots that are dying.  Hopefully, they can see how extensive they are.  I think they also want to see the hip and the blood flow to that joint and if there is infection there, or just inflammation.  I also think they will be looking for other issues as to why the fevers have lasted as long as they have without a known cause.  And, unsaid,  we are always looking for any new tumors.  


This week has brought many other unsaid questions to the forefront of our thoughts.  Questions like, "With Brendan in such a precarious health situation, would we continue with round 6 of chemo no matter what?" 


I finally said it out loud and brought this point up with the oncology fellow while we were in PICU last week (starting the last dose of etopocide while Brendan's 104 fever was just coming down -- thanks to a dose of Tylenol).  

There are no hard and fast rules here.  Protocols for leukemia patients are pretty set (thanks to thousands of cases each year and 50 years worth of studies), but there is not much for esthesioneuroblastomas.  Everyone is just kind of feeling their way through this.  Brendan's variance from textbook problems gives an added uncertainty to management of his treatment.  How important is it that Brendan complete exactly 6 rounds of chemo?  No one knows.

While it would seem an easy thing to forego the last round of chemo in favor of sparing Brendan further life-threatening sodium drops or further blood flow issues in his marrow and bones, or further hearing loss, or kidney function, (and on and on)-- we are in a tricky situation.  Brendan has had all the radiation he can have to his head and neck.  What other chemotherapy drugs treat this type of tumor are not well established.  So of utmost importance is to kill all of the cancer cells in Brendan's body so that nothing ever returns.  That is why it is worth these risky health situations (brain surgery, radiation boosts to his lymph nodes, and precarious sodium drops during chemo) in order to eradicate these aggressive cancer cells.

Everything Brendan is going through has long term risks.  But that's what we're working for . . . long term.