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Dec 18, 2016 Latest post:
Mar 19, 2019
Thanks for being here and welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. The full backstory of email updates have been archived here as one journal entry. New updates will appear at the top of the page. I'll typically post before the end of the day when we have appointments or news to share. We appreciate your support and words of hope and encouragement.
The short version is this: In late November 2016, John was diagnosed with cancer. By mid-December they determined it was Merkel Cell Carcinoma, a version of skin cancer. He had lots of tests and on December 27th, 2016, two surgical incisions were made to remove two cancerous lymph nodes, along with 6 others that tested negative. He recovered and then had 25 doses of radiation therapy to the impacted area in March. In April, July and September, he had PET scans that showed no evidence of disease. That changed in January of 2018 when a new mass was detected in his upper chest cavity. Time to suit up!
The first six months of 2018 saw John in an immunotherapy course of treatment that didn't work, he switched to three sessions of chemotherapy which did help, and also 25 more doses of radiation that ended in June. We traveled to see some experts in Seattle and brought their wisdom and insights back to Siteman in St. Louis. In early August, 2018, we received word that our team at Washington University Medical/Siteman Cancer Center had effectively lobbied, and Bristol Myers Squibb had agreed to grant compassionate use for John to use a pair of their newest immunotherapy drugs. Unfortunately, October of 2018 showed us a new scan with good and bad news. The tumor in his upper chest was taken out of commission by the radiation and chemotherapy; yet three new tumors were now visible in his torso. One near the trachea and two near the spine about the same level as the kidneys. Those were treated with radiation, and we are now pursuing a clinical trial in Nashville at Sarah Cannon Research Institute.