As you may have noticed I have not been very public this year. That is because my world was turned upside down when my daughter Nicole was diagnosed with a very rare bone eating tumor in her jaw. At first we couldn’t find help due to the rarity of it which was very upsetting. But thanks to great people, and good doctors we found help through USC. She underwent a very intense, extensive, and life altering surgery.
Three weeks later when we thought the worst was over, we were told that this apparent benign tumor was in fact a Myoepitheal Carcinoma of the Salivary Gland. My daughter had cancer, and the shock of that news cut like a knife. She was forced to make some serious decisions and it was heart wrenching to watch.
Without ample time to heal from the surgery, my beautiful Nicole had to undergo intense radiation treatments every day for six long weeks. The side effects were something I would never wish on anyone. Radiation to the mouth and neck is brutal and intensely painful. She never missed a day of treatment and never complained. She went there every day with her head held high, a smile for the radiation team and a hope that these treatments would destroy this horrible disease that was inflicted upon her.
The effects of the radiation are not gone yet and between that and the surgery, it has caused great difficulty for my daughter to perform simple daily tasks like brushing her teeth, eating, talking and even drinking. She has to wear an oral obturator because the surgery (a maxillectomy) removed part of her palate, some teeth, the muscle that opens and closes her mouth, some nerves were removed and a skin graft was performed. She also lost her hearing in the right ear.
Obturators are very expensive. My daughter will have one forever. She has to keep getting new ones due to swelling and changes in the mouth. Hearing aids and speech therapy are expensive. She has to use a special device to aid in opening her mouth to eat which insurance does not cover. She has had to use specific medications and rinses to aid in the sensitivity of her mouth. Although my daughter has health insurance, it does not cover everything plus she was out of work for over 5 months. I wish I could giver her everything she needs but I cannot, thus the reason for this post.
When you’re in your twenties, this is not what you should be doing with your life. I have to tell you that my daughter has shown the world some amazing strength and bravery beyond comprehension. A lot of you never met my daughter. She is one extraordinary human being and I am so proud to be her mom.
It’s important that you all know that she would not approve of me doing this campaign. She does not look for pity or want anyone feeling sorry for her. What she would like is awareness for this disease in hopes of helping others. With that said, I as her mom and cheerleader think she deserves the help after all she’s been through and what she has to endure for a lifetime. And hopefully she will get over being mad at me after this.
Thank you to everyone that reads this. I appreciate it and if you are in a position where you cannot help, all I ask is for your prayers. Prayers for Nicole to have continued strength and a long and happy life.
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