Nov 27, 2017 Latest post:
Sep 30, 2019
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Pastor Tom was diagnosed with Multiple Myeloma and Amyloidosis in December 2015. MM is a cancer of the blood. Amyloid is a very rare blood disease which deposits protein clusters in the organs. Tom's kidneys are the most affected organ with less than 40% functioning. His soft tissue (skin) is also affected as is his stomach and heart. He also has a large hydrocephalus that was shunted in March 2016. He was in chemo treatments Jan-June 2016. In July he suddenly experienced aphasia. Tests determined a possible stroke; medication for seizures reversed the aphasia . September he began to be followed by the Amyloid clinic at Boston University Medical Center . A time for healing without chemo was suggested by the clinic which we did while continuing to be followed by his oncologist and neurologists. In June 2017 his cancer and amyloid numbers began to rise. Our second visit to Boston this past September brought a diagnosis of relapse and a plan for a targeted therapy which he began in October. After two treatments his mental faculties were confused and physically was unable to walk unaided. Treatments were stopped pending PET scan results looking particularly for possible amyloid In the brain or other cause of increasing confusion and memory loss. The primary symptom of MM and Amyloid is extreme fatigue which causes him to sleep 24/7 being woken up to eat and walk to keep his leg muscles intact. At present we are awaiting PET scan results and a determination whether treatments can be restarted.