My name is Maligi Jordan Tokelau (MJ), i was diagnosed with Rhabdoid Sarcoma Cancer on June 10, 2009 at the age of 4 yrs old. Since June 10, 2009, my life has changed tremendously. the very next day, June 11, 2009 i had my first surgery. a week later i started Chemo Therapy for the next 10 months which i had to be admitted at Primary Childrens Hospital every 3 weeks for therapy. Immediately after chemo therapy i was hospitalized just a few days after due to complications from chemo therapy.
After 10 months of Chemo Thearpy, i had only 2 days of freedom then i started Radiation Therapy @ Huntsman Cancer Institute for 3 months. During my Chemo Therapy treatments, i went in twice a week to get blood and platelett transfusions and with the help of home health nurses, i recieved anti biotics and needed medication in the comfort of my own home.
I have had 6 surgeries, more than a dozen scans, over 20 transfusions, over 30 hospital admits, and the list goes on.
Currently i have scans every 3 months to monitor my tumor. My last scan i had July 19th, 2010 my Oncologist said that im stable now and i can rest easy until my next scans in October. So ill continue my 3 month scans for the next 5 years before the doc's can say that im CANCER FREE.
During the 4th month of chemo therapy, i was denied from Medicaid and from my fathers health insurance so i had no insurance during the rest of my chemo therapy and during my radiation therapy. My parents had to pay all my medical bills, medication, home health, labs, transfusions, etc... all on there own and with some financial help thru the hospital.
It's very expensive and if it wasn't for the help of our close family and friends and programs like HOPE KIDS.....i wouldn't get the help that i need.
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