An NF Hero’s Surgery Journal: Part III

Jan 11, 2019, Posted in Video, Awareness, Community, NF1, NF Hero

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 III

Sunday, November 25, 2018 - Post Surgery

Two weeks have passed since I wrote my last entry, and all I can say is that the recovery at home has been tough.

My back and neck kept hurting for over a week and I spent most of my time in bed sleeping. After the first week, my pain slowly started to improve but I was still incredibly tired. My mom changed my bandages every day and I saw Dr. Abbott once a week. After two weeks he took out the stitches and said he was very pleased with how things looked, except of course for the hole where my drain was supposed to be, which was still an open wound. Dr. Abbott finally cleared me the week of Thanksgiving so I could return to school after the holidays.

I felt much stronger by the time Thanksgiving rolled around and was able to spend the day with my family & my cousins so it was really fun. I was so grateful to finally feel better after the surgery and very grateful it was all over. My mom made me promise not to hide anything else in my tumor and stay out of hospital for the next year. I told her no promises!

On my last check up, I was able to video interview Dr. Rick Abbott, who has been my neurosurgeon for the last 12 years.

I also made a short video this evening, four weeks to the day since my surgery.

Sunday, December 2, 2018 - Complications!

This Thursday I began to feel a lot of discomfort in my tumor, but not where I had the surgery. Instead, my whole tumor was aching. I tried to ignore it for a day or so but it kept getting worse. At the same time I started to feel lumps on my tumor which seemed to be changing daily. By this morning the lumps were getting much bigger and the whole tumor felt hard.

I have been freaking out all weekend and my mom has been emailing and calling my doctors to ask what is going. They all say it is nothing to worry about but I’m not so sure and my tumor really hurts. Anyway, the good news is we are going to see Dr Abbott tomorrow morning to find out what is going on.

I am really nervous.

Monday, December 3, 2018 - Big Complications!

I got up at 5.45am and my mom drove me to Montefiore in the Bronx which is where I was meeting Dr. Abbott. There wasn’t much traffic so we got there very early. There was no one in the office so my mom and I sat outside and tried to sleep. Dr. Abbott woke us up and saw us immediately.

He looked at my tumor and said the hard lumps could be tumor pushing up or just fluid. However, he said we should have an MRI that day so he could see exactly what was going on. Luckily for me, he managed to arrange it for 1pm.

When we came out of Dr. Abbott’s office my grandmother was there. She always shows up for everything!

Rather than sit and wait nervously in the hospital, my mom decided to distract me by driving us all to Bronxville where she used to live and where I was born. She was so excited to be showing me around and it was great to see where she and my dad used to live.

The MRI only took about 30 minutes and Dr. Abbott saw us right afterwards. He said it definitely wasn’t fluid and he was going to overnight the MRI scan to the NIH in Washington DC.

So, I’m sitting here nervously waiting for the NIH to tell me what is going on with my tumor.

Wednesday, December 5, 2018 - More Complications!

I slept terribly as my tumor was really throbbing, so I was delighted when my mom said she had arranged an appointment with Dr. Carullo, my pain management doctor. I haven’t mentioned her before but she has also been working with me for over seven years and has helped me through all my surgeries.

When I have pain after surgery it’s not typically regular pain, which things like morphine can reduce, rather it is nerve pain because of my NF, which needs special management. So I am usually put on methadone which works for me. Dr. Carullo really is the best and she always does a wonderful job in helping manage my pain.

We saw Dr. Carullo at Montefiore at 1pm and she went over my pain management plan. I am going to be on Methadone until the tumor calms down and Oxycodone as needed for the next week because it takes a week or so for the methadone to start working. I am now officially a part of the opioid epidemic!    

While we were with Dr. Carullo, my mom got an email from Dr. Widemann, who heads up my NIH trial in Washington DC. There was good news and bad news.

The good news! My tumor isn’t growing.

The bad news! My tumor is changing dramatically. What does that mean? No one has any idea!

Once again, it seems that I’m an NF pioneer in uncertain territory!

However, Dr. Widemann and her team at the NIH really are outstanding and have known me for over 15 years and so I have every confidence in them. Apparently my file at the NIH is so big it has its own filing cabinet. This is one of the photos of my tumor that I sent to Dr Widemann.  I am still sending her pictures every day.

Dr. Widemann told my mom that they want to get me back onto the MEK-inhibitor as soon as possible as they think that might help. I have been on phase 1 of the MEK-Inhibitor trial for the last 4 years and my tumor has shrunk 39% in that time, which is incredible. It would have shrunk even more if I didn’t have to stop taking it every time I had surgery. However, remember my drain that disappeared inside my tumor? Well, the hole they created to get the drain out still hasn’t healed, so I can’t go back on the MEK which is super annoying. And makes me nervous.

So yes, more complications.

I made another short video this evening to summarize how I feel. As of this time I’m hoping to start MEK again as soon as possible since we are hoping that will help with the pain, but for now all I can do is wait.

Read Part I here and Part II here.

Information presented in this post reflects the thoughts and experiences of Aidan. For more general information about neurofibromatosis, visit www.ctf.org