life is odd. yesterday my in laws and i got to chatting about leukemia and the public face that it has. it's an oddity, that i don't know exactly how to deal with sometimes.
the reality is that 90% of the people diagnosed every year with leukemia (all types) are adults.
there are LOTS of kinds of leukemia.
ALL: Acute lymphoblastic leukemia (the word acute here refers to how fast moving the leukemia is--acute is fast moving leukemia, chronic is slower). this is the most common childhood leukemia. but it also affects adults. 85% of children survive it, only 50% of adults do.
AML: Acute myelogenous leukemia. This is primarily an adult disease. only 40% of people survive it.
CML: Chronic myelogenous leukemia (My disease). almost exclusively an adult disease. currently it's pretty survivable--90% survival rates. children who get chronic forms of leukemia are far harder hit as i understand it.
CLL: Chronic lymphocytic leukemia. almost no children get this. 2/3rds of the people that get this are men. 75% survival rates (by the way all the survival rates are at 5 years, which in the case of chronic forms doesn't mean as much since the chronic leukemia types don't have a cure usually)
Hairy Cell Leukemia: extremely survivable (about 95-100% at 10 years) no known childhood cases. ever.
T-PLL: T-cell prolymphocytic leukemia, very rare and aggressive leukemia affecting adults. It's really hard to treat and the median survival isn't in years, it's in months.
there are more, but they are progressively more rare. so i'll stop there.
the point? the face of leukemia is a cute little kid, typically with no hair, and they are portrayed as dying. now, don't get me wrong, kids do die of leukemia. but the treatment for children is getting better and better, and by and large, it's survivable, if horrible when kids get it. adults on the other hand, not so much. look at AML up there. 40% survival rate at 5 years. until 10 years ago that was CML as well.
the issue that i have, is hard to explain. i totally get that cute kids make better plays for money. and i get that kids dying is horrible and hard and a waste. the problem i have is that so are adults dyeing. it's a horrible death. hard. it's a waste. and a huge portion of the population is shocked when i tell them i have leukemia. "do adults get that?" is the typical response. when i explain that actually leukemia is a disease that mostly affects men, over 55, they are further shocked.
i am not suggesting for a minute that we should stop trying to fix childhood leukemia. hell, childhood cancer. what need to be said tho, is this, cancer sucks. all of it. the children and the adults that have it need your help. and the reality unfortunately is that adults are dying more of leukemia than kids by a long shot. and i don't want to hear how i got to live out my life. i have kids that need me, a husband, a family, all that. adults are no different than kids. we have plans. we have wants and needs. and we have faces. how do we change the face of leukemia? do we need an ad campaign with my face, and my friends? how do we acknowledge that leukemia is mostly an adult disease without being told that we're insensitive to the kids? it's not that i want to erase their faces from my disease. it's that i want my face there too. a 45 year old woman with 3 kids and leukemia. and i'm struggling to survive it too.
Rita this was very helpful. You are a fighter and so amazingly inspirational, stiff upper lip!
ReplyDeleteI am not sure, maybe contact the leukemia association and ask them how they are addressing this issue. They are the commercial people and are responsible to making sure those donations go where they are needed. Maybe they are using those children to get the money for all who have it? This blog is a good way to make people aware. Any social media works too. It is not as many as those commercials but it is a start.
ReplyDeleteHugs & Prayers!!!!
Hi,
ReplyDeleteI have a quick question about your blog, would you mind emailing me when you get a chance?
Thanks,
Cameron
cameronvsj(at)gmail.com
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