Brian’s Story

Site created on March 12, 2018

Trying to use this site  for updates on my progress and any comments, etc. between family and friends.  I have listed known treatments in the calendar "Planner" via "Ways to Help" to share medication/treatment schedule.  This site will be updated periodically as we know more information and proceed through treatments.


I have not been updating the Planner so probably no reason to go to the "ways to help" tab.  Will update primarily via the Journal entries.

Newest Update

Journal entry by valerie barnes

You'll note that we haven't updated Brian's journal for several months while he ended the chemo part of the treatment and was only on the immunotherapy maintenance. 

Brian's ongoing stomach issues worsened and all treatment was cancelled in September.   14 days ago, Brian was taken by his friend, Jay, to the ER when he developed swallowing problems and was throwing up some blood.  After scans and an endoscope, a lung-based mass was discovered to be pressing on his trachea.  His blood pressure was very low. After stabilized, a stomach feeding tube was put in and radiation started.  After 2 treatments,  he began bleeding profusely and radiation stopped.  His BP dropped and we didn't expect him to last the night.  The next morning he opened his eyes and said "Hi Jay".  The doctors told him that the stomach tube wasn't working and the tumor was bleeding into his stomach.  He was informed that there was no further treatment.

Brian wanted out of the hospital so badly and his friend, Jay, arranged for 'hospice at home'.  After 11 days in the hospital, Brian returned to his home on October 18.  Sister, Valerie, came down to help Jay prepare the house for a hospital bed and equipment.  His brother, Scott, and mother are here right now for a long week-end, and sister, Tracy will arrive to help on Monday.   Although Brian may be dozing, he says that the interactions and help have been heartwarming,  And, of course, the foot and ankle massages and blood orange sorbet have been wonderful treats.

Brian is receiving very little nutrition or fluids.  He is able to sip H2O and some sweetened fruit juices - thank you much, Josh.

Someone will write for Brian again, but in the meantime, thank you to everyone for their caring well wishes and thoughts, for checking on me, and to Jay's mother for keeping her son and caregivers in delicious comfort food.  Brian would love to share this food, but is afraid that he'd lose the small opening in his throat.
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