I'm happy to report that I was able to encourage the folks at Penn to take Chris back for T cell collection and consent much sooner than the 3-4 weeks they offered yesterday. Glad that worked.
I am starting to wonder what else I can expedite.
Part of me feels like a Mighty Mouse making the world more right through the force of my will. The other part wonders if my hubris could push a vital piece out of place and make a mess or, possibly worse, just make Chris's caregivers think I am a jerk, thereby impeding his care.
Our vulnerability is stark and sobering. We are at the mercy of other humans who have bad days, peccadilloes, and fetishes like all of humanity.
Like many folks in a similar position, I want to feel that the people at Penn have a vested interest in Chris: that he is individually important, not just one more subject in their study. I work within a similar medical machine and know that what we most want is high functioning, intelligent patients (or caregivers) who take orders, are on time, remember instructions, and basically allow the processes of care that we dictate to run smoothly. So, I am trying to make us look perfectly lovely while pushing their timetables.
Time is feeling increasingly precious.
http://www.nytimes.com/health/guides/disease/acute-lymphocytic-leukemia-all/treatment-after-relapse.html
Thank you for updates. That 3-4 week wait didn't feel right. And I want to know what happened to the cells they already collected.
ReplyDeleteI bet you are doing this all perfectly given your experience on the other side. You are making a difference. Hang in there!