MACKENZIE | Dx Age 9 | Lacrimal Gland
Mackenzie started having headaches at a very young age. When she was eight she started having pain in her left eye, especially if she cried. After months of troubleshooting, it was her allergist who finally found the problem. He forced the issue and read a CT scan himself because she already had an MRI which we found out later that the tumor had been missed. I later found that it was common to take years to diagnose correctly because it is so rare.
Mackenzie’s pediatrician was on the phone with her allergist very quickly. We were called into the pediatricians office to learn there was something there. We were sent to Jacksonville to have the tumor biopsied. The physicians were confident that it was benign, on February 14, 2012 she was diagnosed with adenoid cystic carcinoma of the lacrimal gland.
The Jacksonville team started her treatment plan and it was the weekend before it was to begin when I started to research the best treatment for her. I quickly found there was very little information. I began corresponding with a fellow parent who turned my attention to Doctor Norbert Liebsch at Massachusetts General Hospital.
I told my husband who was working offshore at the time and he immediately emailed Dr. Liebsch. Very soon after my husband and Dr. Liebsch were on the phone. After the conversation it was obvious we needed to change our plans. We were scared because she was already set to start treatment on Monday and it was Saturday.
Dr. Liebsch had treated a large number of lacrimal gland ACC in children. Jacksonville had not treated a child before. We felt that the more experienced Physician was important. After speaking with Dr Liebsch we felt comforted and we knew we had to stop the wheels from turning in Jacksonville.
We started the process again in Boston, and were fortunate to find a place to stay right next to the hospital. We fell in love with Boston even during the horrible reality we were facing. As went through treatment we met one of the founders of ACCRF Marnie Kaufman. She was able to comfort us like Dr Liebsch did. We were not alone.
We had to navigate care for her eye because her lacrimal gland (tear gland)was removed with the tumor. After her course of Proton therapy she suffered from extreme dry eye. Ultimately we were able to settle on a contact that holds liquid against her eye all day. She still uses gel on occasion as well. We are now almost six years out of treatment and are monitoring every year. Initially, it was every six months until year five.
Mackenzie is now thriving and looking forward to her future. She is interested in becoming an astrophysicist and wants to go to MIT because of her love for Boston and of course MIT.
Serenity, Mom of Mackenzie (2017)