Tomo Riley | CaringBridge

Tomo Riley

First post: 3/24/2016 Latest post: 7/13/2016
I just had my 50th trip around the Sun, on April 18th. I have 4 Daughters & 6 Grandkids!! I served in the US Navy, during Desert Shield / Desert Storm. I suffer from "Gulf War Illness, a multi symptom disease which is caused by exposure to nerve agents (Saran & Soman Gas) and Pyridostigmine Bromide (P.B.) pills, meant to counteract nerve agents.
I was working for DirectSat USA, for Directv, as an installation & service technician. After 5 years with them, I was forced to take Medical Leave. I am also a bass player, I have been playing since I was 12. I am looking forward to getting with a group of musicians after I beat this cancer! I was diagnosed with an extremely rare malignant melanoma behind my right eye in February. I was scheduled for my first surgery on April 22nd, to remove my right eye socket, eye, tumor, bone that has been affected & muscles. However Dr Musibay, my Oncologist called at 9pm the night before and told me NOT to have the surgery! Dr Musibay wants to try a new treatment called T-Cell Therapy. I start on May 2ND & will receice infusions of "OPDEVO" every 2 weeks for 2 months, 4 treatments of 347mg each. The OPDEVO will attach to my own T-Cells and tell them to seek out & destroy a certain protein the cancer gives off! Once they are activated they will begin to multiply on their own. This is Very New & Cutting edge Therapy, but Dr's are having some Fantastic results. This cancer is very aggressive & has entwined itself into the optic nerve & muscles around the temple and eye. It is also pressing on the Dura matter (covering) of the brain, as of my PET scan it looks like it hasn't penetrated the brain yet. The Neurologist said, if you have to lose a piece of your brain, that's the place to have it! It has metastasized to the lymph nodes & salivary gland as well. They have "Mapped" the Genome of the cancer and have chemotherapy drugs ready to kill what's left of the cancer.
This is going to be the fight of my life, but this is a war which I plan to win!! I have lots of family and friends who support us. I am making new friends every day. I have begun journaling, to document my fight and hopefully help others to get through their cancer as well. Giving back & helping others is what it's all about!!
I am unable to work now and am on medical leave from work. I was declined disability insurance, so we are relying on my VA Disability benefits and Patti's SSDI to live on. We are asking for any financial help as we are going through treatments while I am unable to work! We appreciate ALL support, thoughts, prayers, money, food, gas and everything. All of the money donated will go towards living expenses, (rent, utilities, food, medical bills) while I am not able to work. I am hoping that everything goes smoothly! We ask not only for your prayers, which Are Working!! We also need financial assistance to help keep a roof over our heads while we battle the Cancer. Please Share this post with friends and family, co- workers, Prayer Chains & Churches. You can also donate at; gofundme.com/eryphtxs.
Thanks everyone, for your help & support! We really appreciate it! Tomo

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