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Jun 22, 2017 Latest post:
Mar 12, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Below is a summary (I know it is a bit verbose, but that's just who I am...sorry!)
On June 10, 2017, shortly after assembling some bookshelves with Conrad on a nondescript, summer Saturday afternoon, Jay suddenly couldn't speak. He tried to communicate with Conrad and knew what he wanted to say, but could not formulate words. I was on the road back to Ann Arbor after spending a couple of days in Columbus. Shaken, Conrad called 911 and Jay was taken by ambulance to the University of Michigan Hospital emergency room, where they initially thought he was suffering a stroke. Stroke was ruled out, however, when a CT and MRI revealed an "abnormality" in his left frontal lobe, the portion of the brain responsible for speech and language. He was admitted to the hospital for further tests, and by Sunday night he had suffered multiple "subclinical" seizures - not the big, obvious convulsive type of seizure, but a less visible kind that affected him in other ways. A lumbar tap to test his spinal fluid for evidence of infection came back negative, so the doctors ordered a brain biopsy. The biopsy occurred Monday, June 12, and as of this writing, all of the tests that have come back so far on the biopsy have tested negative for any cause (infection, inflammation) other than a tumor.
Jay remained in the hospital while the medical teams worked to stabilize his seizures so that he would be safe to go home. On Friday, June 16 the head neurologist at the hospital and the neuro-oncologist we have been referred to met with us to give us the report of the Tumor Board that had met that morning to discuss his case. The conclusion was that they are 95% certain that Jay has a glioma - more precisely an astrocytoma. This is apparently a diffuse, slow-growing, tendril-like cancer that is extremely difficult to treat, and impossible to surgically remove. As you can imagine, the news was shocking and devastating to all of us. Life expectancy is 1-2 years, barring some unusual and unexpected circumstances that could change such a dire outcome. They discharged Jay to go home. So far Jay is managing at home very well, but is very low energy, tires easily, and struggles to remember things and find words. He seems to be recovering nicely from the brain surgery (12 staples in his head) and the seizures are under control.
We are still adjusting to our new reality, and are alternately frustrated, angry, depressed, and hopeless while we digest the information. We don't have a treatment plan yet, but hope to have more information after we meet with the neuro-oncologist on June 28. Jay being the scientist that he is, has been diving into the medical literature about this disease and potential treatments, and also checking out our doctor, Larry Junck. He seems to have an impressive medical pedigree and we feel fortunate to be part of the U of M health system (pretty strong endorsement coming from two ardent Ohio State Buckeye fans...!). Two of Jay's colleagues, experts in genetics and oncology, will be going with us to the appointment with Dr. Junck as we discuss and consider treatment options on the 28th.
As we have been reaching out to various friends and relatives to share this sad news, we have been touched by the outpouring of support and the willingness of many people - even in this early stage of things - to forego their own families and priorities to be there with us when needed. From neighbors pitching in to take care of Conrad's new puppy (many thanks to Kim and Amanda!!) to siblings giving up a week of work to travel from far away to be with us, we are overwhelmed by the kindness and love we see all around us. So many others have offered to help out in any way they can, and that gives me confidence that whatever happens, we won't be traveling this journey alone and isolated.
I will periodically post updates here, and invite you to check in from time to time if you are wondering how we are doing. Conrad is living in Detroit for the summer and will be going back and forth as he trains Sophie and looks for a job. Our primary job right now is to be there for Jay in whatever way he needs us to be, and to focus on achieving the highest quality of life for our family that we can for as long as we can.