Episode 0 – Ted’s Story

Welcome to this special episode. I had originally planned to tell my story much later in the process. I was hesitant to make it all because I do not want to make the channel about me; instead, the purpose is to make the channel about what I have learned and present it in a way that saves Ime for others diagnosed with Glioblastoma in finding the research I have followed and to present alternaIves for consideraIon.

However, due to my personal circumstances, all that has occurred to date, and the path I have followed I was encouraged by my family and friends to include this informaIon from the outset.

Upon reflecIon, I believe you should know my whole story, know where I have been, what I have done, and the direcIon I am following. I think this will give you the complete picture and some context with my situaIon. This disease is horrid and I know firsthand how it feels to be given the news. There is very liQle in the way of encouragement out there and perhaps some of this informaIon will be helpful and bring some hope or potenIal opIons.

Because I was diagnosed with GBM out of the blue – probably just like you – my goal is to offer some insight to people who have been diagnosed with this horrible disease and feel completely isolated and bewildered. Perhaps this will provide some shortcuts for you or at least some concise informaIon based on my first-hand experience.

I found that there was very liQle informaIon readily available and I have been extremely fortunate to have met some very special and helpful people, doctors, professionals, researchers, authors, and countless others who have all contributed to geWng me where I am today. I know I am extremely blessed and My Story is meant to provide some of that background.

If you are anything like me you are probably confused and frightened by this diagnosis. If you have specific quesIons for which you are seeking immediate informaIon I would encourage you to go directly to the list of Episodes I have created and posted on my site and YouTube Channel. They may deal more directly and at length to your specific quesIons or topics and you may wish to watch the remainder of this Episode a[er a few Episodes. If on the other hand, you want some overall background that will give you my background and more gradually point you to some specific areas while providing some context then please listen to the rest of My Story.

Whichever you choose I want you to know that I feel your sense of being alarmed and totally helpless and that I had these same feelings upon hearing my diagnosis.
I hope this informaIon helps and I wish you the very best as you move from step to step in this process. Blessings to you.

As with many of you, my family has faced considerable adversity. I will not go into the details; just know I am a single father with sole custody of my three terrific children and I am fully invested in their lives. A[er a busy school year in 2018, I was able to take the kids on a vacaIon to California. We had some fun at theme parks and some relaxing in the sunshine. I began geWng some mild headaches which were very abnormal for me a[er some of the rides. I chalked it up as geWng older at the Ime. I also had some occasional pain in my upper teeth. I found this only a slight irritant. When we returned home I had a regular denIst appointment booked and there were no issues. I also had a rouIne eye exam in August which

did not detect the Glioblastoma as can someImes occur. I didn’t have any other issues and the teeth discomfort and headaches seemed to have subsided.

In September 2018 I was a chaperone on a field trip with the school and we went to a Science Center that was busy and noisy. We had some physical acIvity during the day and this jostling again caused me to start geWng another headache. By the end of the a[ernoon, the headache was very unpleasant. By the next morning, it had subsided and I was feeling okay. Later in September, I fell on my backside at an ice rink. A[er that, I started geWng very bad headaches that were lasIng longer, would not go away with headache medicaIon, and were geWng more intense. At no Ime while this was going on did I put any of these pieces together to think they were one common issue. These were just isolated cases of headaches and discomfort that we all deal with from Ime to Ime. As the days went on I started wondering if I had hit my head on the ice because the headaches were progressively geWng worse and I was experiencing nausea. I started not being able to keep food down at all so we went to the Hospital Emergency. They looked me over and said the headaches should subside and sent me home.

The headaches did not go away and conInued day and night. I was very nauseous now and keeping solids or liquids down was a problem. Another two weeks had passed and the intense headaches, nausea, and inability to eat and drink were very concerning. We went to the hospital again with the same result. Another week went by and the headache intensity had increased to another level. It felt like my eyeballs were going to pop out of my head and I was not keeping any food or drink down. We went to my doctors’ office and he asked me to try another possible remedy that did not work. Throughout this ordeal I had tried massage therapy and chiropracIc care mulIple Imes, however; the pain conInued and became unbearable. We went back to the Hospital Emergency the next day. They did some bloodwork and then they were going to send me home again; but, this Ime we insisted on a scan. The hospital did not have an MRI so they gave me a CT Scan. A[er a couple of hours, the doctor came back to my bed and said he was very sorry, but I had a large brain tumor.

This was shocking! How could this be … what did this mean? He said he did not know but it was large. He asked if I had experienced any seizures, blurry vision, or other symptoms. I said no, just the ones we had reported several Imes – extreme headaches, nausea, no ability to take in food or water. By now I had lost 20 pounds. They were going to send me home for the night but we insisted we stay the night. They started me on Dexamethasone which is a steroid to reduce the swelling in my brain. Over Ime this reduced my headache to where it was bearable, and I was able to eat and drink again. They made arrangements that night, due to the seriousness of the situaIon that I would be going to see a Neurologist the next morning.

The neurologist said the tumor was large and he would need to do surgery as soon as possible. My tumor was in my right, front, temporal lobe and was about the size of a large egg. This tumor had squished and pushed my brain in several areas, including across the midline. The doctor would know more about the tumor type and its spread a[er the surgery. It was such a severe situaIon that they scheduled the surgery just 6 days later – this happened to be Halloween 2018 which made it even more strange. A[er meeIng the neurologist I was brought back to the original Hospital and spent the next five days there. While there we had a lawyer draw up my updated Last Will and Testament as well as a Power of AQorney and a RepresentaIon Agreement for the care of my kids as we did not know if I would survive the surgery or what shape I would be in following the surgery.

My family and friends came to visit me a lot which was great to see them. My Dad virtually never le[ my side and was instrumental in ensuring I was receiving the care I needed when I needed it. My brother stayed by my side every night and we talked a great deal about growing up and all the memories we had together and took comfort in these moments. My family and friends that came by to visit all did their best to stay posiIve but, we all knew the reality of what was happening. It was absolutely crushing on my kids who had already been through so much in their lives and now had their only parent in the hospital and about to undergo brain

surgery. Unfortunately, it was my eldest daughter’s first semester of University as well, so this made things extra difficult for her. I talked with each of my kids and there were lots of hugs, kisses, and tears.

They transferred me by ambulance to the hospital that specialized in neurology where I underwent a pre-surgery MRI and then returned to the original hospital. The MRI indicated that the tumor was very likely a Glioblastoma MulIforme Grade 4 Tumor. We had no idea at the Ime what this meant but it was sobering news to hear the median survival with surgery, radiaIon, and chemotherapy was about a year if everything went well. He said we would know more a[er the surgery. This was brutal news and it hit hard on everyone; but, we were determined to do all we could to baQle the disease. The first step would be gaining some strength back for the surgery and then making it through the surgery.

I was able to eat and drink during the lead-up to the surgery and to do some research on Glioblastoma. Everywhere we looked the informaIon pointed that Glioblastoma was always fatal and that you should get your affairs in order. There were a few cases where some procedures had very rare cases of success with a single paIent here or there but nothing definiIve or reproducible. There were some clinical trials that did not look too hopeful but may push research forward so others may benefit in the future.

My Mom was with my kids the day of the surgery