My Story & the Creation of the Rare Brain Tumor Fund

Hi! Grab yourself a cup of coffee and cuddle up if you’re planning to stick with me for this entire story, because it’s going to be long! But I promise it will include at least one dad joke, a reference to furry animals, and lighthearted banter for your entertainment.

<grabs cup of coffee, cozy blanket, a couple of pups, emotional support hair tie, emotional support water bottle, and two pillows>

Okay, are you ready to get started? Let’s gooooo!

In late 2019, I was doing all the things in preparation for the Grand Opening of Wister’s in January 2020. During this time I was also experiencing some vision changes that I was casually ignoring until one day my husband, Michael, said “What’s wrong with your eye?!” So of course, that made it hard to ignore for much longer. I did my best to put off doctor’s appointments to get this checked out (please note: do not advise doing this), but caved after about a month. Without going into the ridiculous story of the doctor I went to see being obnoxious and trying to get me to schedule surgery for some other eye issue she thought I had, I’ll jump straight to her being obnoxious when she actually told me about the brain tumors. Here’s a transcript of our conversation*:

Me playing with flowers in my happy little world when the phone rings (and by “rings” I mean, doesn’t ring at all, but the name shows up on the silenced phone).

Me: Hello?
Doctor: Yes, I’d like to speak with <checks notes> Amanda Rose, please.
M: Speaking.
D: Yes, hello <checks notes>, Amanda. I have your MRI results and you have a lot of brain tumors. I don’t even know how to help you. You need to go somewhere else.
M: …..

*By transcript I mean the transcript of my memory.

Fast forward 2 minutes and I’ve wrangled up my mom, who was 4 seconds away, and got Michael on speaker phone so that we were talking speaker to speaker. We ultimately agreed that Michael would drive to Lynchburg to get the MRI scans and drive them directly to the Tisch Brain Tumor Center at Duke where he refused to leave until they called me to schedule an appointment.

The next day, I received a call directly from Dr. Henry Friedman (not to be confused with Dr. Allan Friedman, who you’ll learn about below in Chapter 384) who discussed some options with me, got the scheduler in the loop to get me on the calendar for an appointment, and called me back .0283 seconds after we hung up because he heard me crying when I hung up and he refused to hang up again until I was no longer crying. Quite a difference from the experience I had with the other doctor who’s name I don’t even remember!

In the coming days, we met with the surgeon, Dr. Allan Friedman (not to be confused with Dr. Henry Friedman above) and decided, that day, to schedule surgery a couple of weeks later.

On February 28, 2020 I received my first craniotomy to remove, or at the very least de-bulk, the main tumor causing me problems. Ultimately, only about 20% of this tumor was able to be removed because of it’s location in the brain. I was on lots of meds at this point so I didn’t comprehend what that meant for my future, I really just wanted a nap.

The next few months consisted of follow-up appointments, genetic testing, and 6 weeks of daily radiation treatment overseen by Duke’s amazing and funniest oncologist, Dr. Kirkpatrick. The genetic testing resulted in <drum roll, please> Mosaic NF2. Now down to the educational part…

NF2 is a genetic disorder that begins in the womb. I’m not going to try to begin to describe how it starts scientifically, but in layman’s terms I tell people that basically my cells were having a party in the womb and missed curfew. Now let’s get into the mosaic part of this. “Mosaic” NF2 means that my parents did NOT hand this down to me genetically (whew for them!). It means that my cells just decided it would be a fun addition to my body. (See missed curfew above). Here’s the kicker with that: we don’t actually know when my cells decided to through NF2 into the ring, so we don’t know where and how to track their growth. When handed down genetically, we know that this could potentially affect all your nerve endings and we know how to watch for growth and symptoms. When developed mosaically (probably not a word, but it is now), we don’t know where to track them or how they will grow. It’s basically like hide and seek for your internal organs or nerves or whatever).

This is where the Rare Brain Tumor Fund comes in. NF2 only affects 1 in approximately 40,000 people worldwide. Even rarer, only 50% of those cases are the result of spontaneous mutation aka Mosaic NF2. Since my diagnosis in 2020, I’ve been on a mission and nothing is going to get in my way until a cure is found for rare brain tumors like those that are developed with NF2. In 2022, I became the Event Coordinator for Angels Among Us, Duke’s Brain Tumor Center fundraiser that raises money and awareness for all brain tumors across the board. 100% of the funds raised each year for this event go directly to research and clinical trials for brain tumor patients. In my position as the Event Coordinator at Duke, I have a firsthand look at how the funds are used, and can proudly tell you that Duke is truly on the cutting edge. Their staff of researchers and doctors are putting their entire lives into finding a cure, and I have never met a better Brain Tumor Center staff (and I’ve been to Johns Hopkins and Mass. General, too!). The money raised often goes to the more common brain tumors and brain cancers, like glioblastoma; however, separate funds may be created for the money to go directly to a specific tumor type.

With your help, I am on a mission to create a Rare Brain Tumors Fund for a group of Duke’s researchers to specifically focus on rare tumors like NF2.

This fund has the potential to discover non-invasive treatment options, medications, and clinical trials that may help minimize symptoms and could lead to a cure. Here’s the catch…to begin a fund of this caliber, we must start with $20,000. We cannot begin a fund that focuses on these specific tumors until we have reached the $20,000 in funding. I believe we can successfully raise these funds, but if, for some reason, we have not reached this $20,000 goal by April 26, 2025 (the date of our next Angels Among Us event, which I’d love to see you at!), I will designate the funds to overall research at the Tisch Brain Tumor Center at Duke.

Just to give you an idea of what this could help with, here is a non-exhaustive list of my daily symptoms:

• Extreme fatigue

• Numbness in 50% of my face (trigeminal neuralgia)

• Numbness along the right side of my torso

• Weakness in my right leg (as a past half-marathon runner, I can no longer run any distances without my leg giving out)

• Double vision

• Extreme dry eyes

• Nosebleeds and the feeling of being “stuffy” when I’m not

• Hearing on my right side sounds like it is underwater

• Brain “zaps” aka 5-10 second headaches that re excruciatingly painful (masked by medication)

• Extreme pain in back, neck, and shoulders (masked by medication)

• Anxiety

• Occasional dizziness

And to give you a further idea of how this affects my day-to-day life, I take 4 medications in the morning and 2 in the evening indefinitely, with other medications added as needed on occasion. I also get full body MRI scans at least once every 6 months, and have received 2 brain surgeries, 6 weeks of daily radiation, 1 spinal surgery, and 5 months of infusion treatments so far. Not to mention, my doctor constantly has to fight with insurance providers to prove that these treatments, medications, and tests are necessary for me to just live a semi-normal life.

Now that you’ve spent your entire day and evening and week reading this, can I kindly ask you to support this Rare Brain Tumor Fund? Not for me, but for the generations to come in hopes that they never have to experience the symptoms and lifestyle changes I have to experience.

Also, if you’re still reading this, I love everything about you and I’m so grateful for your interest in supporting treatment options for brain tumor patients all over the world.

P.S. I will do a weekly update each Sunday of amount of funds raised that you can come back and check right here!