RALLY FOR RYAN

On July 6, 2022, Bridget and I were enjoying our first day of our annual scalloping trip to Steinhatchee, FL with our friends Justin and Nicole Barnett and it was amazing. The scalloping that day was great, followed by a steak dinner and plans to go offshore fishing the following morning. This all changed at about 1 AM on July 7th when I found myself staring at my wife, my friends, and multiple EMS personnel that were all trying to explain to me that I had a Grand Mal seizure in my sleep and that I needed to go to the hospital as soon as possible. My first instinct was to try to convince everyone that they were all confused, I had not had a seizure, and everyone should go back to bed. The look of fear on my wife’s and friends’ faces didn’t take long to convince me that maybe I was the one that was mistaken. I agreed to be taken by ambulance to a satellite ER hospital in Gainesville, FL where they recommended a CT scan, as is typical protocol after any seizure. About 30 minutes after we got there, I got news that would change my life as I knew it.

A doctor walked to my bed, sat down, and told me and Bridget that he was sorry to have to tell us that I had a large mass in my brain and that I needed to go to a larger facility to get an MRI immediately. My first instinct was to grab my wife, hug her, and apologize for the news we had just received. I realize this wasn’t a rational reaction to getting this news, but in the moment, I felt like I had just let down everyone that loved me and cared about me. Bridget and I held onto each other until I was loaded into another ambulance to go to HCA North Florida Hospital. Upon arrival and intake, I was taken back to receive an MRI, and we waited a couple of hours for a radiology report. A neurosurgeon came to my bed with the report and said that there was indeed a large mass on my left frontal lobe right in the communication center of my brain. He told us a surgery was going to be needed to biopsy the mass to see what type of tumor it was, but that I was going to need to be awake for the entire brain surgery due to the location of the tumor. The hospital I was in did not have the resources to perform the surgery, so the neurosurgeon called on one of his mentors from the Mayo Clinic in Jacksonville, FL and convinced him to take me on as a new patient. If this doctor didn’t call in this personal favor for me that day to the Mayo Clinic, there is a very good chance I would already not be able to walk or talk for the rest of my life.

After several days in the hospital just waiting and waiting, I finally was able to get into the Mayo Clinic for a consultation for surgery. The surgeon agreed with what I was initially told, and I underwent an Awake Craniotomy operation on July 26th, 2022. I’ll spare the gory details of the surgery and just say that having brain surgery, not only while awake, but also while undergoing cognitive tests during electrostimulation was one of the most physically painful and psychologically taxing experiences of my life. We were hoping after the surgery we would hear that at least 90% or more of the tumor was removed but that’s not what happened. About 2 hours into the expected 5-hour surgery the neuropsychologist and neurosurgeon paused the surgery to tell me that the tumor was too intimately involved in the portion of my brain that deals with communication and motor function to try to go any further. They told me if we continued the surgery that the rest of my life would be spent in a vegetative state due to loss of brain function. Their recommendation was that we stop with the surgery and then asked what my personal wishes were. It was an easy question to answer. I had made a personal decision before the surgery that a life without being able to tell the people I love that I loved them, or even be able look them in the eye, was not a life worth living at all. I told the doctors to wrap up the surgery. They were able to only get about 3% of the tumor.

After a couple days in recovery, I was able to talk somewhat normally, and another day after that I was able to walk again. I’ve since regained all my communication and motor abilities back to my baseline before the surgery. This speaks volumes to how skilled the neurosurgery team was that operated on me. If the surgeon decided to take any more of the tumor out during the surgery, I might not have ever been the same person as I was before. In my opinion, he gave me what some people never get: a second chance at life, however long that might be.

This all brings us to today—I am officially diagnosed with oligodendroglioma. Since the tumor resection surgery didn’t work for debulking the tumor, my options for treatment going forward are to attempt to shrink the tumor temporarily using two other means: Proton Beam Radiation and chemotherapy. The Proton Beam Radiation is the treatment type that has been recommended by several people that are familiar with my case, but unfortunately the Mayo Clinic in Florida does not yet offer this treatment. Since we can’t get the preferred technology or quality of treatment I will need locally, our goal is to travel to Houston, TX to the MD Anderson Proton Therapy Center for a 6-week intensive radiation treatment regimen. During the 5-day per week radiation treatment l will also be undergoing chemotherapy as well. These next few months will be extremely difficult from a physical standpoint with a multitude of expected negative side effects to navigate during the therapies. The most concerning aspect of the treatment, from a personal standpoint, is that I’ve been told that I should expect some cognitive decline since the Proton Beam Radiation is going to be targeting my brain. Some people regain almost all of their function within several months after the treatment but there is a risk that I will have permanent brain damage from the radiation. This is certainly a concerning risk to me, but it beats it dying in half the time!

Throughout the ups and downs of the last five weeks I always keep coming back to the same realization: I can’t change my diagnosis to a more positive one, but I can change my attitude to a more positive one, and therefore make a positive change in the world. I can’t help but feel that I’m the luckiest brain tumor patient in the world. I’ve been absolutely blown away at the support that my family and I have been receiving from our friends, the community, and people that I don’t even know. The entire experience of being handed a terminal diagnosis has been one of the most clarifying things that has ever happened to me and has made me appreciate every single second of life I’ve had since the moment I heard the news. I fully intend to make the rest of my life a life that is filled with positivity, a life that gives other people hope when they feel hopeless, and a life that inspires.

Please consider supporting my family and I as we enter this next phase of our life. Bridget and I will both be out of work during my treatment for the next several months. We humbly ask for monetary donations to help cover the tremendous expenses that includes medical bills, housing, food, travel, cost of living, and much more. Any amount will be greatly appreciated.

We also understand that times are financially challenging at the moment. If you cannot donate to this fundraiser, please help us spread the word and tell as many people as possible. Prayers and positive vibes are also greatly appreciated.

We appreciate all the love and support we have received so far and will continue to post here on updates as we get more.

Thank you to you all. We love you all so much!

Let's RALLY FOR RYAN!

Much love,

Ryan (and Bridget and all our animals).