Last March, the medical team at MEE – and my sweet husband -- saved my life.
I promised my surgeon that if they restored my ability to breathe and talk normally, I would run the 2020 Boston Marathon and fundraise for Massachusetts Eye and Ear (MEE). It will be my fourth Boston Marathon. This fall I have run three marathons for the Children’s Tumor Foundation (22 lifetime total) and am working toward fulfilling that promise in Boston in April.
When I was 7 years old in Atlanta, I was diagnosed with Neurofibromatosis Type 2 (NF2), which causes tumors on nerve tissue throughout the body. NF2 made me deaf as a high school senior, but now I am blessed to function pretty well with an Auditory Brainstem Implant. NF2 also caused tumors requiring numerous surgeries in my brain, spine, ears, leg, cataracts in both eyes, and most recently a tumor in my throat.
Surgery at Mass Eye and Ear:
On March 8, 2019, I was admitted for scheduled surgery to debulk an NF tumor in my throat. it had been there for a long time, but only in the past year had begun to cause noticeable symptoms in my voice and breathing. Surgery was planned to remove about half of the very slow growing tumor but not leave a huge cavity in my throat by taking it all out at once. That operation proceeded well as planned and I was discharged the next day. I was coughing some, but that appeared consistent with normal healing.
A couple of nights later, I awoke at 4 AM, choking and unable to breathe. My husband, who had training as a lifeguard and EMT in student days, did rescue breathing and called 911. Back to Boston for a lengthy hospitalization, an emergency tracheotomy in the middle of the night, and a delicate final surgery to remove the remaining portion of the throat tumor.
The head otorhinolaryngology surgeon at Harvard Medical School (truly the top of the medical food chain) had never seen a throat tumor completely rotate around to block an airway as mine did. He proceeded carefully and used a delicate surgical instrument normally used for brain surgery that MEE had ordered after the first surgery, and that miraculiosly arrived just in time for this operation.
During the 2 weeks, I walked a marathon distance of 26.2 miles, in the hospital floor halls, while wearing non-slip hospital socks! I finger-counted floor laps and tally-marked miles on paper, with a line per a day. I couldn't use GPS to track that because my sweet husband, Steve, broke the Garmin's plastic watchband, when looking for my pulse! Time of day in the hospital is based on when vitals are checked, when procedures happen, and when food comes! (The watchband was easy to replace, after I got home!)
March 18, the day before the final throat surgery, while I was breathing through a trach and writing on a notepad to communicate, I told my surgeon that if this came out well, I would run the 2020 Boston Marathon with Team Eye and Ear. He chuckled, smiled, and said "Okay, we'll see about that." (I was scared but determined! There were a few tear drops in my notepad.)
Less than two months after leaving the hospital, I could run eight miles. Since then, I have run three marathons [in one month], in Chicago, Vermont and New Hampshire. I will run Boston Marathon 2020 with Team Eye and Ear.
My “Medical Dream Team”:
Having Neurofibromatosis Type 2 (NF2) has been the fight of my life. I am blessed to be not only a survivor of a condition that takes too many too early, but much healthier than most.
I thank God and my doctors who are all on the faculty of Harvard Medical School. My neurofibromatosis specialist and medical quarterback is Scott Plotkin, MD, PhD, the 2019 Von Recklinghausen awardee, Executive Director - Pappas Center for Neuro-Oncology, Professor of Neurology - Harvard Medical School, Director - MGH/DFCI/BWH Neuro-Oncology Fellowship Program, and one of the most preeminent neurofibromatosis researchers in the world. I am happy to be one of his lab rats. My throat surgeon was Philip Song, MD, Director of the Division of Laryngology at MEE and a professor of otolaryngology at Harvard Medical School. My auditory brainstem implant was done at House Ear Institute in Los Angeles but regular follow up now is at MEE in Boston.
While that crisis has passed, I still must deal with NF2 throughout my life, at least until a cure is found. I still have numerous NF2 tumors lurking along nerves throughout my body. I am thankful to be one of the very few NF2 patients in the world who are able to run marathons.
About Mass Eye & Ear (MEE):
I have run over 20 marathons, including three Boston Marathons, (with time qualification in AWD program), while also fundraising for the Children’s Tumor Foundation in support of medical research on Neurofibromatosis. This time, I am pleased to run (again with qualification) while fundraising for Team MEE.
One of the teaching hospitals for Harvard Medical School, MEE adjoins and shares some facilities with Massachusetts General Hospital. MEE has earned an international reputation for its successful treatment of the most difficult diseases and conditions of the eye, ear, nose, throat, head, and neck. It has been ranked #2 in nation for Otolaryngology-Head and Neck Surgery and #4 in nation for Ophthalmology. Mass Eye and Ear clinicians and scientists are driven by a mission to find cures for blindness, deafness and diseases of the head and neck. Each year, 300,000 people—adults and children—from 80 countries seek care at Mass. Eye and Ear and 20,000 of them undergo life-changing surgery.
Since neurofibromatosis patients have many complications related to eyes, ears and throat, doctors at MEE work closely with Dr. Plotkin and the Harvard NF Clinic.
Neurofibromatosis, also known as NF, is a genetic disorder that affects 1 in every 3,000 people. There are three types of NF: NF1, NF2, and schwannomatosis.
Neurofibromatosis type 1 (NF1) is one of the most common inherited neurological disorders, affecting about 1 in 3,000 people throughout the world.
Neurofibromatosis type 2 (NF2), my condition, affects 1 in 25,000 people worldwide. NF2 is characterized by development of benign tumors, called vestibular schwannomas on the nerves that carry sound and balance information from the inner ear to the brain in both ears, often leading to partial or complete hearing loss, as it did for me by my senior year of high school. NF2 also involves other types of benign brain or spinal tumors, cataracts, and other nerve tumors throughout the body, all of which I have had. I have had several friends with NF2 who were far less fortunate than I, and who are no longer with us.
Schwannomatosis affects less than 1 in 40,000 people. It causes the development of benign tumors — called schwannomas — usually on spinal and peripheral nerves. My friend Drew Leathers in Atlanta, who was born the same day as me at Northside Hospital in Atlanta, struggled for years with the effects of schwannomatosis. He eventually became a quadriplegic and died in 2015. His brothers started “Cupid’s Undie Run” as an annual nationwide fundraiser for NF research.
Every dollar counts.
$1 per a mile is $26.20
$5 per a mile is $131
$10 per a mile is $262
Please give what you can.
Check donations payable to "Foundation of Mass. Eye and Ear, Inc." may be sent to:
Team Eye and Ear | Development Office,
243 Charles Street | Boston, MA 02114 (CHECK MEMO: "Anne Noble 2020")
* I started fundraising in the summer, before I could make this page. That amount counts to the same goal, but is not visible in this page. I knew this in advance. You can see it here, but please use this page (or check) for donations.*