In Spring of 2011, when I was 6 years old, my parents noticed my neck was swollen. My pediatrician thought it might be a swollen lymph node, so I took antibiotics to see if it would improve. When it did not, I had a surgical biopsy and the results came back as reactive lymph tissue. A few months later, the swollen area of my neck was even larger and this time, it was recommended that the suspected lymph node be removed completely. This time, the results were not so benign. Instead of finding a lymph node, the pathology report showed it was a plexiform tumor. I went to see a geneticist and learned that I had NF1.
People look at me and don’t think there’s anything else wrong, but I know I face two great concerns: the 10-15% chance that my tumor may turn malignant (cancerous) and two, that it could grow to obstruct my airway or impact vital nerves and blood vessels in my neck. I could potentially lose the ability to swallow because it involves the nerves in the back of my throat. Nerves associated with part of my shoulder movement could be affected. My facial nerve, vocal chords, all are at stake due to the tumor in my neck.
Early attempts to stop the tumor’s growth using oral chemotherapy did not work. At first the growth seemed to slow down but then it really started to grow again. At the age of 10, I enrolled in the AZD6244 (selumetinib) MEK trial through the National Institutes of Health (NIH). The first six months of treatment were hard as I dealt with many tough side effects. I also had to adjust my routine to comply with the requirements of taking the medication on an empty stomach and keeping doses 12 hours a part each day. After about six months, it became easier to cope, especially when the first MRI showed not only that my tumor has stopped growing, but it had shrunk. This drug has been the answer to many prayers. At the one-year mark since enrolling, my tumor was 36% smaller. At almost five years on treatment, it is now over 60% smaller.
People don’t ask me what is wrong with my neck anymore. The drug does make me fatigued which is tough since most kids my age are active in sports or physical activities that are challenging for me. But I’ve found activities that I enjoy, and friends that enjoy being a part of my life. I enjoy reading, gaming, boy scouts, coding, and more. I’m getting ready to start high school and I’m thankful for all the donors that funded the doctors and researchers who made selumetinib possible. Now that it is FDA approved, I am thankful that others may experience what I have experienced.
My advice to other people who may be facing challenges living with NF is to persevere. Find your strength in activities and friends and family that build you up.
-As told by Philip Moss, Jr. age 14
Click here to read more about the Children’s Tumor Foundation announcement about the FDA’s appoval of the first-ever treatment for neurofibromatosis.
Click here to access the Children’s Tumor Foundation MEK Resource Center with more information on selumetinib, interviews with patients and researchers involved in this journey, as well as information for NF patients.
This video was released in 2017
