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Ali Didier

Ali Didier

I was diagnosed with NF2 when I was 10 years old, 6 months thereafter I had my first brain surgery, when I was 11. The surgery was at Loyola University in Maywood and at the time the tumor I had removed was called an acoustic neuroma (now called a vestibular schwannoma). This surgery made me completely Deaf in my right ear and was the start of my balance problems.Soon after that surgery I had to have a tumor debulked from behind my right eye and had to have the orbit of my eye restructured. The incision from the surgery was across the top of my head from ear to ear. It was scary for a 12 year old. I honestly do not remember anything from this surgery but I know it was the one where I lost my sense of smell (I could make a Friends episode out of my story). Before the surgery I was granted my wish to go to Disney World and also swim with the dolphins through Make a Wish. It will always be an amazing memory to me and I loved every second of it. Soon after I was diagnosed, I entered a 5 year clinical trial for NF2 patients (NF was not as well known as it is now) at NIH in DC. Every 6 months I would travel out to the medical campus and have a long week of medical tests and doctors appointments and as much fun as we could squeeze in! My spring travel week always coincided with the Cherry Blossom Festival in the DC area and it will forever and always be my favorite part of spring. DC can also be credited as one of the places that sparked my love of travel. Before the clinical trial ended I decided to go on an experimental chemo drug called Avastin, in 2011. I had a few symptoms at first like bloody noses and kidney problems. It almost lead to premature ovarian failure but not quite. I was on it for a year and a half then because I needed a surgery I had to stop taking it. By now I was a sophomore and began to have unbearable pain in my left inner elbow. Nothing was helping the pain at the time and so I decided to have my NF doctor from NIH (who moved to UVA around this time) attempt to remove the small tumor that was causing my pain. But he did not know what the outcome would be and in the end he could not remove the tumor. Fun Fact: When I get the money I will be turning my large scar on my arm into a watercolor tattoo of cherry blossoms. In 2013 I went back out to my favorite doctor at UVA to have a large tumor removed from my thorasic spine. I honestly don't remember much from that surgery but I do know I made my parents drive me to a mountain top apple orchard the second I was released from the hospital. I couldn't really walk but nothing will ever come between me and a gorgeous sunset. In 2016 I started up chemo again but in shorter time frames and at higher doses. It surprisingly gave me no major side affects besides high blood pressure. Eventually I stopped because my doctor did not think it was doing much to help me. 2016 was also the year I had to have emergency-ish gallbladder removal surgery while on vacation in Arizona. I flew home early to have the surgery but no complaints here because 2 months later the cubbies won the World Series!! Then I got to live out my dream studying at the Italian Culinary Institute in Calabria, Italy in early 2017 for 3 months. I hope to go back soon because I still have more to learn and more pasta to eat! By December 2017 I wound up back at UVA with Dr. A for surgery on my Cervical spine to remove a tumor which included a spinal fusion from C-4 to T-2. Oh boy that was not a fun recovery. Not being able to move my neck for 3 months and wearing a neck brace that entire time was a real struggle. I could not walk for about 2-3 weeks and then had to go through a ton of physical therapy (the usual) but I made it to the other side. That surgery has left me with a limited range of motion in my neck and really has just made me feel more fragile in general (no more roller coasters for me). I got through that recovery and then was told I needed to be ready to have my other vestibular schwannoma in my "good ear" taken out. I knew this though, because I was made aware from the beginning of my diagnosis that most people with NF2 eventually go completely Deaf. If you are having a vestibular schwannoma removed from your hearing nerve, then their is pretty much a 100% chance you will not have any more hearing in that ear after surgery. In the end (November 2nd, 2018) I was sad but not as much as you would expect (obviously due to my surgery being in California). I listened to my favorite songs as the nurses and Doctors filled my pre-op room waiting to take me to surgery but I made them wait until I had listened to my favorite songs one more time. Closer by KoL, Wagon Wheel by old crow medicine show, Radiation by Gavin Degraw, and Way Way Back by Luke Bryan if you were wondering...This last surgery took the rest of my hearing, gave me a gnarly hematoma under the fat graph on my stomach, worsened my balance, and has made me keep slurring my speech more and more. But I had an ABI placed during surgery and after my recovery was over I had it turned on back where I had the surgery in San Diego. You would think that since I used to be completely hearing that I would know when I was "hearing" something again but it took me a while to process it. I am still learning as I go and will probably be re-learning to hear the rest of my life. But of course I have to put that on the back-burner because the surgery I have needed for longer than I can remember is right around the corner. The meningioma I had debunked in 2009 has only gotten bigger and continues to make my eye look worse and worse. My vision is still ok it is just my field of vision that keeps growing smaller due to the tumor pushing my eyelid down (making me have double vision). All of my other past surgeries became more important as time went on and now I get to have the all-important eye surgery at the end of this summer (right as I turn 23). Of course I am going back to my favorite doc at UVA who will assist the Eye surgeon. There is no game plan for surgery yet but I predict my life with NF2 is about to come full circle. My first 2 surgeries were very close together: the first one made me Deaf in one ear and during the second surgery, my head was sliced open from ear to ear to operate on the orbit of my eye. In November I had the same surgery as my first one just in my other ear and now I am about to have the same surgery as my second one. Life's funny like that :)

There is no cure for NF and that is why we walk and raise money to help find a cure. Come spend a fun morning walking with me, my team, and the NF community here in Naperville on June 1st! If not for me, come support our cause for the other 2 million people in the world who have NF.
-Ali

Comments

$4,225
raised of $4,000 goal
 

Recent Donations

$50.00
1. Marge and Chuck Cahill
Go Ali!
$25.00
2. Ali Didier
$25.00
3. Ali Didier
$50.00
4. Scott Drucker
Proud of you Ali! Drucker family is happy to support you.
$50.00
5. Sue Howell
6. Laura Didier
To emulate your strength and determination in achieving all you want out of life, your Mom is pushing you to the finish line (your fundraising goal)! Love you so much, Ali! Here's to finding the cure SOON!
Captain

Team Ali Didier

$5,000
$100