hi. my name is latu and i'm an obsesser. i obsess about basically everything, but at any given time, i have a huge obsession that occupies most of my time. depending on the time, it's been different things. this summer, i obsessed about my school schedule for the fall. i ended up making over 2,000 changes to my schedule. and i only knew that because the system locked me out as i was trying to make even more. i had to go into school and talk to the director of something (and by talking to her, have to deal with her biotch of a secretary, who was wearing a waaaay too short skirt...) and find out that i broke the system by making over 2,000 changes in a single semester... i was the second person to ever do it. i felt awesome :)
my current obsession is brain cancer. i constantly troll through blogs and websites, looking for brain cancer stories. i have subscribed to a brain cancer mailing list and get updates on various people and their brain tumors. one thing that has amazed me since joining is the sheer amount of people who have been absolutely crippled by brain cancer. i read heartbreaking stories (and even more heartbreaking obituaries) about people who had their first brain tumors years and years ago or people newly diagnosed. the most harrowing was a girl my own age, who had medulloblastoma-- the same type of cancer as masey--when she was 3. back then, she was an absolute miracle because she made it out of surgery and was studied by doctors around the country because she made it past the 5 year mark from diagnosis.
as a result of her treatments, this girl was severely mentally retarded, paralyzed from the waist down and suffered many health problems including heart failure, seizures, the loss of both kidneys and a subsequent transplant, and a liver transplant, to name a few. you see, back when she received the ground-breaking treatment that saved her life, doctors did not really understand the late-effects of large amounts of radiation to the brain of a toddler. they did not understand that in order to avoid damage to organs like the kidneys and liver, chemotherapies could not be given alone. they need adjuvants to off-set some of the effects. in some cases they just did not know that besides curing cancer, radiation and chemotherapy causes cancer.
this girl was a miracle. she survived the draconian cancer practices back then, but she most definitely paid a price for that survival. she died peacefully in her sleep last month after being diagnosed with acute myelogenous leukemia (AML) a secondary cancer that came as the result of treatment of her original brain cancer. the world of childhood cancer treatments have made leaps and bounds since this girl underwent her first treatment, but it still has leaps and bounds to go.
since masey started his cancer journey, i have been humbled and so grateful for the faceless masses who went before. for the children who found out the hard way that radiation to the brain can cause mental retardation. for the children who have lost kidneys because cysplatin was the only option to kill their brain tumors. for the children who have gotten aml from cytoxan. for the children who suffered the agony of a brain tumors before we knew that steroids would reduce the swelling and pain. for all the children who have gone before. these children have been a constant thought in my mind. without knowing, without consenting, their experiences have silently effected masey's experience.
i am constantly grateful for those children. after hearing the girl my age's experience, the silent horde of children has a face. has a story. is so much more real.
today, mason is not free from the side effects of cancer. he'll never get the hearing back he lost. he has the potential to lose more. the years to come may bring with them learning disabilities. he may never move beyond a 4 year old's mental development. we will always cringe when mri time comes around or when he throws up or gets a headache. the fear will be a constant companion. masey will never get back the childhood he's missing while he spends his days quarantined in the safety of our house or in a hospital bed. he will wear emotional scars for his whole life. a part of his personality will be forever changed. there is still the potential for heart, kidney, liver problems or secondary cancers.
but he is here. my little bestie is here. anything else that comes along for him is absolutely do-able. and i'm sure he'll do it with his same smile and carefree attitude. it's nothing compared to what he's already done.
cancer happened. cancer sucks. but our lives will go on.
