This is Marisa's Journey, and I am her mother. Marisa is 15 years old and has a twin sister, Kira. About 6 months ago, Marisa developed what we thought were allergy symptoms, nasal stuffiness and runny nose. We started her on OTC allergy medications, but her symptoms persisted and eventually got worse. We brought her to see an ENT, where they actually scoped her nose and sinuses. The diagnosis was inflammation. After two ENT visits, two nasal scopings, two courses of steroids and nasal sprays, her symptoms continued to get worse. She could not breathe through her nose, just mouth. Then hurricane Irma hit. We wanted to get Marisa allergy tested, since we thought maybe some sort of allergy was causing her symptoms. Our ENT office was closed for some time, and they lost their allergist due to storm damage. We sought out an allergist to initiate allergy testing. In the meantime, my husband, Marisa's father, was diagnosed with a rare form of skin cancer that had metastasized to his right parotid gland in his neck. Two major neck surgeries all within a month revealed Metastatic Merkel Cell Cancer. He started radiation to his neck 6 days after Thanksgiving and thankfully finished 2 days ago. During all this, Marisa's father brought her to the allergist for allergy testing. Her tests revealed multiple allergies including pets, foods and environmental. We agreed to start weekly allergy sessions. The allergist also sent Marisa for a CT Scan of her sinuses to make sure there was nothing else causing her symptoms. We still, to this day, have not gotten a call from her allergist . (I called two days after, but was told it make take up to 2 weeks. I knew that was not true.) Marisa received two weeks of allergy injections. My husband asked each time about results. I called the radiology center who told me they were faxed results, with a confirmation, 24 hrs after the exam. By that time, Marisa had excessive tearing from her right eye. I got the CT report and Marisa went to her pediatrician, who put her on antibiotics and sent her back to the ENT immediately. The CT report showed a mass in her right nasal passage along with swelling of sinuses, with a question of a malignancy. The ENT saw her immediately, did a nasal scoping and biopsy, and referred her to a head and neck surgeon in his practice. On December 1, 2017, Marisa's first major surgery, the surgeon came out after a frozen section of the mass was done, and I was told that she had a rare form of cancer, but further test with specialized staining would need to be done. Five days later, after final biopsy results were released, we learned that Marisa had an extremely rare form of cancer called a 'High grade, poorly differentiated Neuroendocrine Carcinoma of the nasal passage. Primary neuroendocrine carcinomas of nasal and paranasal cavities are extremely rae and less than 100 cases have been in medical literature. They have a tendency toward recurrence and distant metastasis. A devastating diagnosis. As an Oncology nurse for over 25 years, I could not comprehend what was happening to our family. Marisa lost over a liter of blood during surgery, leaving her extremly tired. She went back to school after 5 days of bed rest. I then confided with some of the doctors I work with, who gave us reccomendations on who to see. We consulted with two well known doctors from different institutions in Florida and decided to go to the University of Miami. There she was evaluated by a Pediatric Oncology,Head and Neck Surgeon and Radiation Oncologist. Marisa then embarked on her second surgery to make sure she did not have any residual disease. She endured a 4hr surgery with numerous biopsies. Fortunately, after waiting 12 days for results , the pathologist rendered that there was not any residual disease. Marisa's second surgery took a bigger toll on her. She has been in a significant amount for pain and fatigue. She finally went back to school 10 days after sugery. She continues to have pain around her right eye, jaw and teeth. She also has some numbness of the right cheek and roof of mouth. Amazingly, she has kept up with all her assignments at school. Her teachers are wonderful, and she continues to be an "A" sudent! Marisa's case was just recently reviewed by the Tumor Board and the reccomendations are for Proton Therapy ( Proton Beam Therapy) to the tumor bed. Proton therapy is a specialized type of radiation therapy that delivers a precise dose of radiation to tumors while sparring the surrounding normal tissue, critical organs and highly sensitive areas such as the spinal cord, retina, optic nerves, heart and brain. As she did not have metastatic disease, chemotherapy was not reccomended. We have two more weeks until we follow up with her surgeon and the radiation oncologist. At that time , she and I will plan and continue on Marisa's journey. As there are approximately only 14 centers in the United States that offer Proton Beam Therapy, two in Florida, we are planning to travel to Jacksonville to have Marisa treated. She will be away from home anywhere from 4-8weeks. As Marisa has a twin sister, Kira , her friends at school, grandmother"GG", and a her biggest fan, her father. This has already taking a big toll on her heart and emotions. She has seen her father go through radiation therapy, and finally finish, but not without big side effects. Our heart's are broken, as well as the rest of our family that is scattered throughout the states, and my friends and collegues at work. I thank all of you have already touch our hearts helping with Marisa's Journey.
So, in a few weeks, Marisa and I will be traveling up to Jacksonville Florida, about 6 hours from our home. We will be leaving her grandmother, father , twin sister, friends and school behind. As a teenager, you would think she would not care about missing school, but not Marisa. That is the only thing she talks about. She does not want to get behind in school work! Her teachers and counselors are on board. Marisa eventually wants to be a Vetinarian, and she is passionate about it! I will be with Marisa on her journey, as she is our rock.
How everyone can help: To all of my freinds, friends of friends, collegues, and aquaintances. I have been on FMLA from work for the past 2 months. Unfortunately, as soon as my PTO(paid time off) is depleted, I do not get paid. I have about 5 days left as of today, 1/28/18. I am the so called "bread winner" in our home, so we soley depend on my pay check to pay our bills and a big portion of our mortagage. As Marisa and I will be 6 hours from home, we will not be able to go back and forth to home every week. We will need to pay for a place to stay, food and anything else that comes our way. Radiation is 5 days a week for however may weeks they decide. The stress it will cause her, including her sister, father, grandmother, other family members and friends, will be tremendous.
Funds will help us pay medical & home bills. Food, gas , accomadations and traveling fees. Being 6 hours from home, we would like to be able to spend time with family every other weekend, which will require a 6 hour drive or expensive plane flights. Her twin sister was already missing her when she was in Miami for two days after surgery.
Thank you, in advance , for contributing to Marisa's Journey. Our family's heart and prayers go out to you and your families.