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6/17/2016 Latest post:
Thank you, everyone, for helping my family and I on this crazy journey that is set out before us. Although it has been hard and rocky, I know that without all of your guys' support, love and fellowship my family and I would not be able to embark on this crazy adventure and emerge stronger than ever.
For those of you who do not know me as well as some others, my name is Sarah Girgis and I am a 20 year old student at California Lutheran University who has just completed her second year. I am studying Marketing Communications and am also on the Cross Country and Track and Field team as a Regal (woooohooo we placed 3rd in SCIAC!) At the start of 2016,my final semester of my sophomore year, I began having pain in my right upper face, which in May 2016 was diagnosed as pseudomyogenic hemangioendothelioma, a very rare and tricky form of the soft-tissue and osteo-sarcoma cancer.
Although I now have the "big C" I am still the same ol' soul that all my friends and family know me to be. 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 (Ryan); however, it is also full of another type of love song that is sung by my family, friends and God. It is that song that is what causes me to be the smiley, laughter-filled person I still am, regardless of this new difficult path I am walking. When I am not in class or running, 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 sit outside and make some dinner, playing with my three year-old brother Liam who drives us all bananas, pinning on Pinterest 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 within it who dwell in my heart that have shaped me into the person I am.
With you all, I know that this will be some blessing we all look back on and think, "remember that one time you had cancer?"
This website will be a way to keep you all informed on this detail oriented and ever-changing journey! A lot has happened since that has gotten us to this point on our journey, so to catch some of you up to speed, below is a timeline from when it all began and the steps we have taken to treatment and surgery. There will be daily/weekly updates to keep everyone's prayers up-to-date and they will all be made through this website.
Again, we cannot thank you all enough for your support and love. To see people rally around us and provide such comfort for not only myself, but for my sweet family has been a blessing to be able to experience and see.
Los Angeles FEB 23, 2016: Had been having odd, headache like pain that was tender to the touch on right side of my upper head, near hairline along with fatigue that had been affecting my running abilities and stamina. I went into Health Services at CalLutheran and was tested for mono and did blood work, but was determined just a headache as a side affect of some medication I had taken a month prior due to stomach pain. FEB 24: Came back into Health Services because I was still concerned with pain and wanted a more definitive answer about what was going on and it was classified as a possible sinus infection; prescribed antibiotics for "sinus infection." MAR 7: After 10 days of antibiotics, my pain was still persistent and growing stronger as time went on. My pain was then classified as TMJ which is when you grind and lock your teeth so hard it causes the muscles on your face to tighten and send sharp pain down to your jaw. I bought a mouth guard to sleep in and was to come back after spring break if the pain was still persisting. MAR 27: Easter Sunday; was home for over a week with family and friends. APRIL 11: Follow up appointment regarding mouthguard; My pain had not only persisted, but had also spread to my right eye and orbital area. Due to my lab work coming back with a high count of antibodies, the nurse practitioner asked for me to see the doctor that is on-call to get his opinion. APRIL 12: Doctor prescribed me three medications: ant-viral for shingles, steroid for swelling, and neuron medication to calm all neurotransmitters. - Called my dad in tears because these were all "fixer" medications and did not solve the problem. He said I needed to get a second opinion. APRIL 13: First appointment with Dr. Tata at Los Robles Hospital in Thousand Oaks by my campus - Doctor ordered my first (ever in my 20 years of life) MRI of my head. APRIL 14: MRI of my head; - Radiologist orders a follow-up CT due to abnormal tissue on right side and wanted to see bone matter. APRIL 15: CT of my head; large lesion (erosion of the bone) was found under the abnormal tissue. APRIL 19: Follow-up with Dr. Tata where my mom, Arlene, and my boyfriend, Ryan, attended. - Dr. Tata suggested that it was an auto-immune disease called Eosinophilic Granuloma. - The only way to determine what it actually is would be to do a biopsy, so he referred us to a neurosurgeon, Dr. Carter, at UCSD.
San Diego - UCSD Moore's Cancer Center APRIL 25: Met with Dr. Carter and team who agreed with possible diagnosis and scheduled surgery for after the semester's end to ensure that it would not conflict with my finals or graduation. - Due to pain in right pelvis, he requested a scan for my entire chest, abdomen and pelvic area. MAY 2: CT scan of my check, abdomen and pelvic area. MAY 9: Pre-operation appointment with anesthesiologist MAY 16: Head surgery where the large lesion and tumor was resected. - I was hospitalized for a day and a half. - Dr. Carter said the surgery went well, however, the tissue mass was unlike what we had expected in texture and had grown tremendously since my last CT. - After promising that we would have a pathology report with my diagnosis, he said it will take the doctors around one week to determine what the mass actually was. MAY 23: Follow-up CT of my head and brain to see incision site. MAY 24: Follow-up with Dr. Carter Post-Opperation. - Removed staples from incision site. - Although the official report had not be completed, he was told that the lesion and tissue is similar to a soft-tissue sarcoma, but the pathologists are unable to fully confirm anything, even after 9 days with my slides. - They have sent my slides and tissue to Boston University for another opinion. - Went over CT of my head and noticed some "translucency" on my eyebrow bone that is similar to the erosion on my scull, which causes some worry. - Due to the pain in my eye area that had continued beyond the surgery and the growth on my eyelid, we also determined that the "stye" on my eye can de determined part of whatever is growing on the right side of my face. - Recommended that we see a radiologist, ophthalmologist and oncologist to build that connection in their office so that when my official report comes back of what my with my diagnosis, we can hit the ground running with treatment. MAY 25: Met with the radiologist, Dr. Hattangadi, who discussed the ins and the outs of radiotherapy and her course of treatment for sarcomas, but nothing too specific towards me. MAY 26: Pathologists at Boston U. sent my slides and tissue to Harvard Medical School for review by the leading sarcoma pathologist, Dr. Fletcher. MAY 27: Because of our ophthalmologist appointment, I did an MRI of my Orbital area. MAY 31: Met with ophthalmologist, Dr. Kikkawa, who confirmed that the growth is not a stye and is most-likely related to my cancer on the right side of my face. He advised we take a biopsy first, but not remove it all. - My mom and I did not feel very comfortable in this office just because he did not plan on removing it and because of the little information he knew regarding my disease. JUNE 2: PET scan on my entire body to locate all of the cancer and see if it had metastasized. - There were three "hot spots" where the cancer was located: my eyelid, residuals from the surgery, and my eyebrow bone. JUNE 3: The pathology report came back from Harvard Medical School where Dr. Fletcher diagnosed me with pseudomyogenic hemangioendothelioma. JUNE 6: Met with, Dr. Boles, the oncologist we were referred to. My family and I were looking forward to the information we thought she would have, like what my disease is exactly, what stage I am in, and the treatment to cure me; however, she new very little about my disease because of how rare it is and was kind of nervous to start anything except surgery and disregarded all other types of treatment like chemo and radiation. My parents, sister, boyfriend and I all left pretty defeated and still confused about how to concur this. ** With the help of Dr. Yoho, my roommate and best friend Hannah's father, he helped connect us with different physicians to see who has treated my disease because of the lack of knowledge on my disease and our need for a specialist in this matter. JUNE 8: After emailing with Dr. Yoho and an opthalmalogist/ocular plastics surgeon, Dr. Bita Esmaeli at MD Anderson, we made the decision to move from UCSD to MD Anderson to see a specialist in eyelid reconstruction and eyelid cancer resection. - Dr. Esmaeli let us know that she connected with the head of the sarcoma center, Dr. Benjamin, and called in a personal favor for him to see us the day after her consultation. JUNE 12: The day of my mom's and my flight, we did the Sacrament Of The Sick and had my beautiful community pray over me and did the laying of the hands. - It was one of the most beautiful things I have experienced in my entire life -- so many people who's hearts are so crazy filled with God's love and ready to share that light.
Houston, Texas - MD Anderson Cancer Center TUES, JUNE 14: First day at MD Anderson and first consult with Ophthalmologist; it was filled with six appointments such as blood work, scans, orientation, paperwork, and my consult with Dr. Esmaeli. - She made it clear that it could be resected and that we need to act fast if removal surgery is the first step of treatment, however there was a high likelihood that I would loose some eye movement such as blinking and permanent damage could occur if they have to resect more than half of my eyelid due to the margin of surgery growing (margin of surgery is basically them taking more than there is to prevent reoccurrence - cancer returning in the same area - to ensure it doesn't come back after such an invasive surgery.) - She is one of the best ocular-plastic ophthalmologists in the world so we knew we were in good hands, however, the surgery was very invasive. - We scheduled surgery for Friday, but on Thursday she wanted me to meet with an oncologist, Dr. Benjamin, to see if the tumor on my eye could be shrunk with chemotherapy.