TIFFANY + MITCH | Parents of Blair, Dx Age 15 | Parotid Gland
Blair was diagnosed in the spring of 1999 at the age of 15 with adenoid cystic carcinoma in the left parotid gland with nerve invasion.
Her journey started with a small, painful lump on her neck below the ear. We took her to our local hospital was told that she had a infection and prescribed a round of antibiotics. Still having the same problem, he prescribed another round. After having no improvement, he performed a needle biopsy. The results came back that tumor was present, but benign. He suggested a MRI. That test revealed the tumor was wrapped around her facial nerve and the decision was made to operate and remove as much tumor as possible to alleviate pain. It was during that surgery, a nurse, clergy and the surgeon entered the room where we were waiting and informed us that she has adenoid cystic carcinoma, stage 4, a incurable cancer and not much hope of survival beyond a year. He said he was not able to handle the treatment, sewed her up and told us we needed to seek treatment elsewhere. One word, shocked !
Blair at Age 15
We went to Loyola University Medical Center and met with Dr. Leonetti, he ordered a new round of tests and agreed that she was in fact stage 4 as well as the confirmation of adenoid cystic carcinoma. He welcomed more opinions and thus the journey to St Jude. After a week at St Jude, their head and neck Oncology department decided, they would not treat her due to very little research on this cancer and virtually none on a child having it. One doctor on that team suggested we return to Loyola, handed us the new scans and said, “This is her best chance of survival.”
Once again we were back at Loyola. Dr. Leonetti said, “you’re not going to like what I have to say, but if she is even going to have a chance at living, this is what we have to do”.
Blair, today, age 34
She had a surgical resection that included removing her facial nerve, removing tumor growth on part of the optic nerve and removal of the mastoid bone. She had extensive reconstructive surgery that required a rib bone to be removed to replace her mastoid bone, muscle and nerve transplants from multiple areas of her body to replace what was lost to the tumor and 30 rounds of proton radiation. Her left side of her face is partially paralyzed and her left foot is completely numb from nerves being removed to replace the ones that control the opening and closing of the eye. She endured physical therapy to learn to walk, talk and adapt to her new reality. She has had multiple recurrences, to the temple, lungs, liver and spleen most of which were able to be treated with stereotactic radiation. Currently, she is being treated for lung mets with Afinitor that are not treatable with radiation.
Blair is a thrill seeker who enjoys, snowboarding, skateboarding, boxing and running. She is a mother of two and works full time. She doesn’t feel sorry for herself and certainly makes the most of life. She has come a long way from that grim diagnosis in 1999.
ACCKT is working hard at raising funds for pediatric ACC research and a difference is being made. Through the online support group, we are able to make connections with other parents that are experiencing similar journeys. Together we are able to offer hope and a outlet to one another.
Tiffany, Mom of a ACC Warrior