This hits close to home. I came within a hair's breadth of losing my infant daughter to cancer just over a year ago, and a few things come up in my thoughts:
- Not all medical systems are the disaster described here. We elected to move back from the US to our native Canada to undergo treatment, and our experience in ward (pre and post-op as well as on the oncology floor) was a dream (at least given the circumstances). We experienced nothing but exemplary inter-disciplinary cooperation, compassion for the patient (and family) experience, and a professionalism driven by clinical need rather than liti-mitigation. These qualities were exhibited even more strongly during the initial phases of treatment post-discovery, which unfolded along a timeline similar to the one discussed here.
- Academic hospitals are exhausting. My spouse ended up being the real hero in this story (she was still breastfeeding at the time, and only one parent was allowed to overnight in the room). My job was to make sure she and our daughter had recovered enough each day to make it through a night of vitals, endless beeping, and the occasional overnight chemo administration (don't even get me started about that).
- The need for patients and their families to drive the narrative of their hospital experience and be their own champion is critical. I had worked in healthcare for many years before this nightmare began (my old office was at the hospital across the street from her room) and knew the system very, very well. We divided up responsibilities so 'I looked outward, and [my spouse] looked inward', meaning that I spent my time making sure that the relevant referrals happened, that medications were administered on time and on dose, and so on. My wife looked inwards towards our daughter, making sure she was fed, entertained, and comfortable. This setup worked very well for us, and was a likely contributor to our level of care.
- The power of parents to be strong in the face of terrible (often inevitable) odds is truly inspiring. We were lucky enough to know with reasonable certainty fairly early on that we would one day be leaving the hospital and resuming a normal life. Many, many families we met were not so lucky. To see a parent express joy and love in the face of such long and terrible odds is a truly unique experience. I myself am a measurably better parent for having witnessed it.
Great thoughts. Very happy for your family that you came through this successfully. Lots to be thankful for there.
So, I've seen a couple of your comments on HN in the past, and just wanted to mention it would be helpful if you had some contact information (e.g. Twitter, URL, etc.) in your HN profile so people can follow-up one-on-one when it makes sense to do so. Unless, of course, you're trying to avoid people. :-)
Heh, I never actually noticed there wasn't anything there (I don't think I've been back to my profile page since I filled it out 866 days ago). Updated; feel free to follow-up as desired :)
- Not all medical systems are the disaster described here. We elected to move back from the US to our native Canada to undergo treatment, and our experience in ward (pre and post-op as well as on the oncology floor) was a dream (at least given the circumstances). We experienced nothing but exemplary inter-disciplinary cooperation, compassion for the patient (and family) experience, and a professionalism driven by clinical need rather than liti-mitigation. These qualities were exhibited even more strongly during the initial phases of treatment post-discovery, which unfolded along a timeline similar to the one discussed here.
- Academic hospitals are exhausting. My spouse ended up being the real hero in this story (she was still breastfeeding at the time, and only one parent was allowed to overnight in the room). My job was to make sure she and our daughter had recovered enough each day to make it through a night of vitals, endless beeping, and the occasional overnight chemo administration (don't even get me started about that).
- The need for patients and their families to drive the narrative of their hospital experience and be their own champion is critical. I had worked in healthcare for many years before this nightmare began (my old office was at the hospital across the street from her room) and knew the system very, very well. We divided up responsibilities so 'I looked outward, and [my spouse] looked inward', meaning that I spent my time making sure that the relevant referrals happened, that medications were administered on time and on dose, and so on. My wife looked inwards towards our daughter, making sure she was fed, entertained, and comfortable. This setup worked very well for us, and was a likely contributor to our level of care.
- The power of parents to be strong in the face of terrible (often inevitable) odds is truly inspiring. We were lucky enough to know with reasonable certainty fairly early on that we would one day be leaving the hospital and resuming a normal life. Many, many families we met were not so lucky. To see a parent express joy and love in the face of such long and terrible odds is a truly unique experience. I myself am a measurably better parent for having witnessed it.