In 2001, there was a doc at John Wayne doing trials on a biochemo follow-up regimen. I think his name was O’Day. Steve was not enrolled in the study, but O’Day was kind enough to communicate with our oncologist. For six months, Steve was admitted to the hospital for a quick, high dose “blast” of IL-2 each month. They did decrescendo doses, so the first few hours were the worst. It would take about 24 hrs, and they would observe him for another 24 hours. Then home, and daily shots of GM-CSF and IL-2. (thank God our insurance covered it 100%- I remember that the bill for the IL-2 that was delivered to our house was $12,000 each month). Anyway, after the first 6 months, the inpatient “blasts” were every other month.
The best thing was that, after biochemo and 12 weeks of feeling awful every day, with neuropathy that was so bad that he had double vision and could barely feel his feet, during this follow-up treatment he felt great! We took our four kids on a 28 day trip to visit family and all of the Civil War historical sites that Steve had always wanted to see. (we were in Manhattan on 9-1-01) We carried a special cooler for Steve’s “inectables”. We made wonderful memories.
May God bless those of you on the front lines….We think of you often and pray for you. This experience changed both of us, and our kids- and while I would not wish it on anyone, neither would I wish to be the person I was before 2001. Love with abandon, keep short accounts.
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