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Allan’s NF2 Journey

By October 6, 2022February 16th, 2024NF2-SWN, Story of NF

My name is Allan Xiao. I was born with a genetic disease called NF2 which my parents and I didn’t discover until I was 8 and started having paralyzed hands and nose bleeds. A lot of doctors didn’t know the cause but finally a surgeon at Children’s Hospital of Philadelphia did an MRI and saw that there were some tumors on the spine… Though they weren’t the only ones. There were a few near the brain as well, along with a few on the skin, which until then we didn’t know what caused them. But after seeing all these, he diagnosed it as NF2, and we scheduled the first surgery to remove the ones on the spine causing the issues. I spent Christmas in a children’s rehab center and then went home and continued physical therapy for a few months. After which I was well enough to go back to school.

But that also marked the start of a lifelong journey of many doctor visits, MRIs, and other treatments (surgical and non-surgical) to prevent or reverse the side effects of tumor growth… while trying to get on with having a normal life. At this point, I would call it a slow cancer.

I made it through college until my next problem arose. I needed a brain surgery to remove a life-threatening tumor which by that time basically had me bedridden at home and blacking out a lot. At this time, I had started working as a programmer at a bank. Even though I went to business school, I was also a life-long self-taught programmer, coding since I was a kid. And that’s what easily landed me a job, and a fairly enjoyable career because that surgery made me deaf. Writing code is much easier than giving presentations and speaking with clients.

And given my background, I wrote really good code and could solve a lot of problems the teams faced.

So now, I was enjoying life and even got my own bachelor’s pad in Jersey City when I was 26, which also cut the commute down to 30 minutes. 15 minutes walking to and from the subway stations and 15 minutes on the train. It also made weekends in New York City a lot easier too.

But COVID and what happened would cut that short. The first bought me back to my parent’s place in the suburbs, and also stopped all the events going on in the city.

The second, now 2021, was that a tumor on the head was noticeably growing so needed another surgery. That was fairly easy but somehow due to a problem with how the breathing tube was inserted or taken out… it damaged my vocal cords so lost my voice and made eating harder and choking more likely…

But the kicker was that the tumor quickly started growing back because apparently it was cancerous. My parents contacted a previous surgeon at House Ear that removed a previous tumor I had to get his thoughts. He said the there was a tumor inside that had to be removed as well… I was a bit reluctant but finally agreed with my parents and flew from our home in New Jersey to LA, just before Christmas. But this recovery took longer than expected and ended up spending a month in the hospital until I was stable enough to fly back. And by that time the tumor was regrowing again.

So, we got back and the next idea was to stop the growth because at this time another surgery was impossible and I had had enough too. This was done using photon therapy, which stopped it for a bit but it started regrowing again soon after.

Final idea was immunotherapy… which after a few months and more negative side effects, I concluded was not working and not worth it… And by this time, I reached my limit… So here we are today. No more options to try and too tired to try anything else… Other than hoping no one else has to go through this ordeal.

Allan passed away on October 1, 2022.