Leah has just returned from her 5th visit to the National Institutes of Health (NIH) located in Bethesda, MD where she is a very active participant in their research about Neurofibromatosis, particulalry, NF2. They are conducting a "Natural History Study" which is an ongoing study where a team of doctors and research scientists are tracking the progression of Leah's symptoms in hopes of better understanding the "predictors" of NF2 tumor growth. By tracking their findings, they will be able to better inform newly diagnosed patients with a more accurate prognosis and also point future research studies in the direction of slowing or preventing tumor growth.
In a Natural History Study, drugs or medicines are not administered, instead, very indepth testing and evaluations take place to observe any new tumors, track growth of existing tumors and their impact on various neurological functions; including sight, hearing, balance, walking (or gait), muscle reaction time etc.
These evaluations take place over 5 consecutive days which can be very long and sometimes exhausting for Leah (and her parents). Leah participates in multiple MRI screenings as well as various vestibular (balance), audiology (hearing), opthalmology (eye) examinations, and then has follow up consultations with many specialists and researchers.
The pupil and eye movement portion of opthalmology-Leah puts on her super duper 3D glasses. There are cameras that watch her eye movement as they move a red dot all over the place.
Above, researches are monitoring Leah's vestibular nerve function
The Moving Chair Test-
Balance Testing- The room & floor are moved around and Leah's reactions are monitored~ a bit like the Fun House at the amusement park! Leaves you feelin' a bit dizzy!
After all the results are in, Leah, John & Linda meet with the team of doctors, specialists and researchers and receive the Summary Report. In short, Leah's hearing tumors (vestibular schwannomas) have grown, the left more than the right, but her hearing is normal in the left and almost normal in the right ear (after all that has been through in the last few months!) Since her hearing is unaffected, we will watch them for now and no new hearing or inner ear surgery is needed at this time.
The other small tumors in Leah's brain are stable and causing no problems. Her vision and balance are essentially normal and we consulted with an oncologist about possible future drug studies Leah may be eligible for when she gets a little older. (Don't be frightened by "oncologist", as they specialize in study and treatment of tumor growth, not just cancer, as well as drug trials which aim to shrink or prevent tumor growth.) Oncologists are very interested in NF2 tumors and finding alternative treatments, beyond surgery.
Leah does have a new cervical (neck area) spinal tumor which has grown since her last MRI, but is essentially not causing any trouble for now. The consensus is to wait 3 more months for the next MRI and see if any additional growth is observed. Bottom line- NO SURGERY THIS SUMMER!! This is terrific news as it gives Leah a chance to enjoy her summer and her upcoming trip to NF Camp and family vacation.
Thanks for your continued support and Blog comments! We'll update in next week or so with some camp photos and stories!
Happy Summer-
The Manth Family