Cunningham-Ramos AML & Stroke after TBI Journey

Azacitidine and Venetoclax in Previously Untreated Acute Myeloid Leukemia; The New England Journal of Medicine; August 13, 2020

When I found the juried paper above about overall survival (OS) in months for Kim given that he on Azacitidine and Vetoclax treatment, I realized even more what we were up against: a life expectancy of 15 months from diagnosis, with no one of the 286 people who started the trial surviving after 33 months.

My professional background as a market researche as well as my academic background ( applied statistics, economics) propelled my curiosity to investigate the whats, how, when, of this disease. I’ve spent a lot of time researching this so that I can be better informed and able to both manage Kim’s care and ask good questions of Kim’s health providers.

This has served us very well in managing and navigatin Kim’s care after the two traumatic brain injuries (TBIs) he sustained in 2011 & 2013.  This is also is serving us very well now that he has cancer.

We are also very fortunate that Kim’s doctors at John Hopkins treat me as ‘part of their team’ and are very open to discussing potential issues I raise. They readily answer, in detail and using technical terms, any question I raise.

They are very transparent and even ask for my opinion in making decisions about treatments, length of time, etc. The reality is that Kim’s health history is so extensive that only I, who have been managing his health so closely, know all the tests, meds, outcomes, and every detail about his health & treatments he’s undergone. There have been numerous times when a medical decision about Kim’s health has been influenced because of some health issue I have brought up, or after I mention a test or treatment that was given to Kim in the past.

I think that ‘Health Manager’, outside of the hospital, should be a paid profession as I know, first hand, the responsibility, work, and effort involved.