Aidan Fraser is 18 years old and lives with NF1. He has a large plexiform neurofibroma on his neck that extends into his brainstem, down his back to his lungs and down his left arm. He’s had nearly two dozen surgeries. His most recent surgery took place in November 2018. Before, during, and after his hospital stay, Aidan kept a journal and a video diary detailing what was supposed to happen, what really happened, and how he was feeling. We’re honored to share Aidan’s journal entries in three parts.
PART II
Sunday, November 4, 2018 – The Surgery (Part 1)
Well, the good news is that my surgery seems to have gone quite well, and I am now able to sit up and write.
Everything is still a little hazy but I will do my best to remember what happened.
The day of surgery
I woke up at five in the morning and arrived at the hospital at around 6:30. I actually slept well, which was good because I was very nervous and usually I don’t sleep well the night before surgery. I waited in the lobby of the third floor of Montefiore with my family for about 30 minutes until I was called into the pre-op area. Usually, I wait for hours before being called, but because I was the first surgery of the day, it was all very quick. In pre-op, I was given an IV, which I always hate. In fact, for me, this is the worst part of having surgery. I don’t like needles and they put the needle right into my hand where I always feel it and also see it. The doctors also always insist on putting the IV into my right hand which means I can’t then do anything which is really frustrating. My mom tells me that is a good thing as I have to talk to her!
Once the IV is in the doctors give me some medicine to help me relax before going into surgery, as I have anxiety that can get really bad in the minutes before going in.
The surgery
The surgery was supposed to be two hours but ended up being six and a half hours long. It went rather well but ended up being way bigger than I expected or any of the doctors anticipated. The surgeon, Dr. Abbott, told me he had to remove a good amount of tumor to get to one of the nodules in my tumor, and he decided to remove a whole chunk of my tumor as a result since he was already in the area. He also told me that I was now in an experimental trial to see if this would work because historically my tumor has grown even more aggressively when exposed to oxygen. He was hoping that because of my age or because of the medicines I am on from the NIH clinical trial that the tumor might not grow back. Fingers crossed, so far so good!
After the surgery
I woke up in the recovery room. The next few days were filled with a lot of pain medication and are quite hazy. Not only am I on traditional pain medicine for the surgery, because NF is a nervous system disease, I am also put on Methadone and Lyrica for nerve pain.
The recovery
Because the surgery took longer than expected, the recovery was much tougher and longer, and is still going on. I ended up staying in the hospital for nearly a week and I might have to miss a month of school, whereas I thought I’d be home in two days and back at school in a week. However, the good news was that the surgeon was able to remove both nodules and about 20% of my tumor. If it doesn’t grow back the next time I have to have surgery he will try to remove two-thirds of it. That would be incredible!
In one of my last surgeries where I had some nodules removed, I developed a massive blood clot in my tumor and it swelled terribly. Due to this, I now have drains put into the back of my tumor to let the blood & fluid drain out and avoid blood clots, so they also put in one big drain during surgery.
I was on a ton of medicine so it was quite hazy, however, I clearly remember having my drain squeezed one day. A doctor squeezed the area around my neck to force fluid out more quickly. He said it was just like milking a cow! Since the drain was in my back I could not see it beyond the pictures others took, and from what I saw it was very gross. I only had it once but it must be awful to be a cow!
My visitors
My grandparents have always been super supportive of my mom and me during surgeries, and they were already waiting for us in the hospital when I arrived for my surgery. They waited with my mom for the whole of the first day until I was out of the recovery room. My Grandma always makes me feel good and my Grandpa cracks bad jokes which make me cringe!
My uncles are also very supportive; I have a lot of them and it is always very rowdy when they come to visit, as they insist on bringing all my cousins as well.
I am also really lucky that my aunt Margaret, my dad’s sister, always comes and spends every other night in the hospital with me, alternating with my mom. She is always so kind and calm and I love seeing her.
The interview
While I was in the hospital recovering this week I was able to video interview Dr. Adam Levy, who has been my NF doctor for 16 years. My dad was killed on 9/11 my mom took me to almost every specialist in NYC, Boston and Philadelphia, she was referred to Dr. Levy when I was 2 1/2 years old. When she walked into his office she had no idea that he had gone to high school with my dad, they played on the soccer team together and were friendly. He has been looking after me for 16 years and has changed our whole lives. My mom says it was a miraculous twist of fate.
Going home
After six days I was allowed to go home yesterday. I was so desperate to leave I didn’t even get dressed. Here is a photo of me leaving the hospital still in my hospital gown!
Sunday, November 11, 2018 – The Surgery (Part 2)
OK, this bit was unplanned!
I said that sometimes things with my surgeries don’t go as planned, and this surgery has been one of them!
While the world was celebrating Veterans Day and the 100th anniversary of the end of the First World War, I was back in Montefiore Children’s hospital in the Bronx, New York, getting the drain fished out of my tumor! Every morning, my mom would change my bandage and check my wound, and make sure the drain was OK. I still had a lot of fluid and the drain was doing its job. One morning, my mother changed my bandage and there was no drain! She looked everywhere and it was nowhere to be seen! It was impossible it could have slipped into my tumor as that has never happened to anyone before at Montefiore. But I’m not anyone! I am Aidan Fraser! And I have world firsts!
So, my mom calls the hospital and says the drain is missing and they say I should come in for an X-ray immediately because if the drain really was in the tumor it didn’t belong there and should come out! It took us hours to get to the hospital as it was rush hour, and when we got there my surgeon was anxiously waiting for me. We had the X-ray and yes, there was the drain, floating happily inside my tumor. “Well, that’s a first!” his assistant Kerry said.
Dr. Abbott, my surgeon, was great and immediately re-assembled his team and booked the OR as they had to go back in and fish out the drain. The operation was only about an hour and I was semi-conscious throughout. Dr. Abbott said he talked to me the whole time and I was chatting away but thankfully I don’t remember anything.
I was sent back to the recovery room where I spend a few hours and luckily I was then allowed to go home. Although they had to make a bigger hole in my tumor to get the drain out, they decided not to put another one back in as I wasn’t draining that much anymore. And they didn’t trust me to keep it in place!
There is a short video of me in the recovery room which I do not remember at all!
Information presented in this post reflects the thoughts and experiences of Aidan. For more general information about neurofibromatosis, visit www.ctf.org.
