I Cancer-Vive This! OralCancer

My name is Amber. I am a wife and mother of two wonderful children. My daughter (age 9) is fun loving, active, and ready to embrace summer. My son (18 months) is busy exploring, climbing, and being ALL BOY! These two are my world.

Our life drastically changed with one simple trip to the dentist in February.

When viewing my new patient X-Rays, a dark mass was located in my jaw line. I was referred to a local oral surgeon and we proceeded to biopsy that mass. It was located in an unusual spot, but we were able to get the samples needed. They were sent to lab for pathology (about 3 1/2 hours from home) the results were inconclusive and we were referred to that research hospital for further treatment. (MUSC)

Upon meeting the doctor's there....we were informed that removing the mass in whole was the best way to proceed. So off we went to get the tumor removed in April. It was then sent to pathology for further testing. A few weeks later we were given our results.

I have been diagnosed with Clear Cell Odontogenic Carcinoma. Only 74 other people in the world have had this type of cancer since its discovery. Because of its rareness, there is little to no information available. This is a highly aggressive cancer and has a very high reoccurrence rate (90%, and multiple times).

The next course of action for this cancer is to "Re-Section" my jaw. Basically, I have to have the right side of my jaw completely cut out and replaced with a titanium plate  along with bone and tissue transplant from my scapula (back). This will be a 14 to16 hour surgery. ( 6 weeks with assisted care, 6-9 months for swelling to subside in my back, arm , & face)  Once pathology returns on the jaw after it is removed, I will know if I will undergo radiation, chemo, or more surgery.

I am asking for assistance to help cover the following:

1. The maximum out of pocket for our insurance

2. Lodging cost for my family while I am in the hospital (7 to 10 day stay)

3. Child Care Expenses while I recover

I have exhausted all the known resources for assistance. Most of the programs available (NORD, PSI, Patient Access, Health Well, etc.) are for rare diseases that affect several people or assistance with medication, which I will not have, since I my treatment requires this drastic surgery. I do not qualify for Disability or Medicaid.

My husband works very hard and has a decent job, but we were not prepared for this. Honestly, I don't know anyone that would be. I am the main care giver to our children, the cleaner of our home, the cooker of our meals, and the cog that keeps this place running.

I have been told to have child care prepared for 6 weeks after my release from the hospital. As well as someone to help drive me places, cook, and clean. I do not want to put any more stress on my husband or my family while I am going through recovery.

I can not settle for the 90% reoccurance rate. I will fight this fight as many times as I have to in my life. And since I am the only person with this rare form of Cancer- I owe it to my children and to future patients to exhaust all options, be a case study, go through the bone transplants, feeding tubes, tracheotomies, and months of recovery.

My surgery is scheduled for the latter part of June 2015. Thank you for your consideration and reading my story. I hope that my struggle and my treatment can bring awareness to this rare cancer and hopefully pave the way for a cure or better treatment options.