My name is Stephanie and I am a 20 year old student at California Lutheran University who just completed my second year. I am studying Marketing Communications and am also on the Cross Country and Track & Field teams as a Regal (woooohooo we placed 3rd in SCIAC!) My life is full of song, as I love music and will usually bug you to no end by humming the same tune for two hours; however, it is also full of another type of love song that is sung by my family, friends, and God. I am usually filling my time with a multitude of things, such as hiking, swimming or laying out at the beach, working, kicking your butt in a quick game of Mario Cart, having sleepovers with my sister Katie, attending mass or youth group, meeting up with friends to chat outside or cook dinner, playing with my three year-old brother Liam who drives us all bananas, Pinterest pinning of weird stuff like essential oil diffusers (which I am also obsessed with) or watching the Bachelorette with some guys and gals because I hate sitting still and love company. If you have yet to pick it up, the real fruit of my life are the people in it who dwell in my heart that have shaped me into the person I am today.
At the start of 2016, my final semester of sophomore year, I began having pain in my right upper face. Jump forward a half-a-dozen doctors, and in May 2016 was diagnosed as pseudomyogenic hemangioendothelioma, a very rare and tricky form of the soft-tissue and osteosarcoma cancer.
Because of the rarity of my cancer, we visited with UCSD and spoke with UCLA and stumped their oncology departments; however, it led us to the amazing and forward thinking M.D. Anderson where I am working with an oncologist who has seen my rare cancer, not only once, but twice.
Below is my story and where we are now...
After continuous pain on the right side of my face beginning on February 23, I was in and out of my college's health center trying to figure out what was wrong. For five weeks they shot in the dark, guessing with diagnoses such as sinus infections, TMJ, or viral infections. On April 11, the pain began to spread to my eye and I decided to see an actual neurologist. In my first MRI, they discovered abnormal tissue, which led to a CT-Scan. In that scan, they found that the bone around my tumor had been "eroded" causing a lesion made by the abnormal cells, which was the main source of the pain.
My neurologist, Dr. Tata went over my scans and symptoms and suggested that it was an auto-immune disease called Eosinophilic Granuloma. The only way to determine what it was would be to do a biopsy, so he referred us to UCSD with the neurosurgeon Dr. Carter.
On April 25, we met with Dr. Carter and his team, who agreed with a possible diagnosis, and scheduled surgery for after the semester's end to ensure that it would not conflict with my finals, thus postponing my future graduation.
May: On the 16th, I had skull surgery where the large lesion and tumor was resected and the pathologist began a biopsy of my tumor. Dr. Carter said the surgery went well, however, the tissue mass was unlike what had been expected in texture and had grown tremendously since my last CT-Scan.
After a week and a half, we had my post-operation appointment, where we expected to receive my diagnosis. Although they thought it was a soft-tissue sarcoma, there were strands of my tissue that were different and more complex than a normal sarcoma cancer. Because of its rare makeup and abnormalities, UCSD sent it to Boston University; however, they were also stumped!
Although the surgery went well, there was a mass on my eye that had Dr. Carter concerned; the mass that we thought was a "stye" had doubled in size and was causing me much pain. He believed it was related to the disease that was growing on my skull and wanted us to meet with an ophthalmologist and radiologist as we waited for the pathology report to come back.
Finally, on July 3, after meeting with UCSD's radiology team and an ophthalmologist, we received my pathology report from Harvard Medical's Dr. Fletcher, a world renowned sarcoma pathologist; he diagnosed me with pseudomyogenic hemangioendothelioma, a rare strain of the sarcoma cancer.
Through the month of June, my family and I met with an oncologist at UCSD, Dr. Boles. We were looking forward to the information we thought she would have (what my disease is exactly, what stage I am in, and the treatment to cure me) however, she knew very little about my disease because it is extremely rare. She was nervous to start any procedures except surgery and disregarded all other types of treatment like chemo and radiation because of some academic papers that she had read. My parents, sister, boyfriend and I all left feeling defeated and still confused about our next steps.
We reached out to UCLA's Sarcoma Center to schedule an appointment, but would not be able to get in until late July. Feeling even more defeated, we reached out to our friends in the medical field. With the help of Dr. Yoho, my roommate and best friend Hannah's father, we were able to connect with physicians at M.D. Anderson who were not only forward thinkers, but have actually dealt with this rare disease before!
On June 12, my mother and I flew out to Texas to meet with Dr. Esmaeli, one of the best ocular-plastic ophthalmologists in the country. After our consult with him, we met with Dr. Benjamin, an oncologist with a speciality in sarcomas.
Although we had scheduled eye reconstruction and removal of the mass on my eye, Dr. Benjamin wanted to begin with chemotherapy. He believed this to be the best route, due to the multiple places that my cancer has spread on the right side of my face. Chemo will not only reduce the tumor size on my eye, but also eradicate the smaller spots of disease, and prevent it from spreading.
The immediate need for treatment, the possibility of surgery, and the previous and future lengthy stays at M.D. Anderson has unforeseen costs to my family. Any donations received will be used towards meeting medical deductibles and travel expenses as I fight to beat this disease.
My family and I feel so deeply thankful and grateful for not only the team at M.D. Anderson, but also the wonderful team of support made up of everyone in our community.
With all of you by my side, I am no longer a girl with a rare cancer, I am "SuperStephanie" ready to fight this battle... and win.