Brad's Journey

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 Brad's journey is an extraordinary one. 

In October 2022 he started having headaches. There had been multiple forest fires causing smokey and dry conditions, so his wife Tia, suggested he go to the doctor for what she thought may be a sinus infection. He was prescribed 5 days of steroids to treat inflammation and 2 weeks of antibiotics to treat any infection he might have had. Initially, due to the steroids, he felt much better. However, nearing the end of the 2 weeks his headaches had returned accompanied by confusion. Still working full time as a Contracted Site Superintendant for Custom Home Builders, Brad's headaches were so severe he decided to leave work early one day & return to the doctor. After parking his truck in a parking lot, walking around trying to find the doctor's office, he called Tia explaining he couldn’t find the doctor's office or find his way back to his truck. She immediately drove to find Brad disoriented and confused, searching for his truck for hours. Once he got to see the doctor again later that day, they took him down to the ER for evaluation &  imaging, initially saying the headaches were simply migraines. After Tia insisted they do further testing, a CT scan found a mass; a possible Glioblastoma tumor the size of a peach. That was Friday, November 4th, 2022.

24 hours later Brad was undergoing brain surgery to biopsy the massive tumor in his head. Unfortunately, the biopsy resulted in an earth-shattering diagnosis. Brad had Glioblaostma Wild Type Unmethilated and the tumor was in an inoperable spot on top of his corpus callosum, the bridge between the two sides of the brain.  

On Thanksgiving day Brad had his first seizure. Five days later he had his initial visit with the Neuro Oncologist (NO), Thursday, November 29th, 2022, almost one month after diagnosis he was finally seen. His NO increased his dose of dexamethasone to 26mg and Brad was then scheduled to start standard of care (SOC), consisting of 6 weeks of radiation and temozolomide, a Chemotherapy pill, in mid-December. Shortly after being increased to an extremely high level of steroids, he got a steroid rash. The NO wasn’t too concerned. However, due to the stress on his immune system, the rash began spreading, covering both of his legs. He received a prescribed steroid cream and we hoped it would subside. Meanwhile, Brad didn’t make it to his first radiation appointment, or his second. He was too tired and in too much pain to get out of bed. Knowing something was wrong and with help from family, Tia rushed him to the ER where after another MRI, they were told even with treatment, the swelling in his brain was too great and he may have a month or less to live. Although Brad couldn’t fully comprehend what was said, he still wanted to live. Tia pushed for something she had read about that can help drain edema called Avastin and the NO agreed to put the order in. That was Wednesday, December 14th, 2022. The next day Brad's pain was unmanageable and Tia was told to call hospice. Hospice came to their home the following day and did their best to get his pain under control. Gradually Hospice care increased Brad to 80mg of Oxycodone a day just to control his pain. He was unsteady on his feet, could be grumpy, defiant, and had 2 more seizures while on hospice care. Then, as Tia was told to begin finding a funeral home, making final arrangements & gathering family, and as the fear of him not making it to Christmas was becoming a very real possibility, the call came that he could be approved for an Avastin infusion. Within a few days, again with help, Brad was wheeled into the infusion center. He slept through all of it. It was a final hail Mary, to do anything, try something. That was Wednesday, December 21st, 2022. 4 days later, on Christmas morning, Brad got out of bed, got dressed, was mostly coherent, and opened presents with his family. It was shocking and the best Christmas present any of us could have asked for. Avastin worked for him, in a big way. Later that day he had another seizure, which he was able to sleep off. 

Tia had felt there was a lack of urgency with Brad's care and demanded a second opinion, at which point they switched Neuro Oncologists in Jan. The new NO pushed to expedite his SOC, getting him scheduled for radiation & chemotherapy within two and a half weeks after switching care. Yet again, he didn’t make it to radiation. Over those 2 and a half weeks his rash had gotten much worse and he was in excruciating pain. He talked a lot about the pressure behind his eyes. His mood started to become more volatile. His hearing was impaired. His headaches were bad. He started doing things that he normally wouldn't such as becoming obsessive about little things, taking walks, and stopping to sit in a neighbor's yard. That was the first week of January 2023.  He was still strong and wanted to do one of his favorite things, so with friends for support, went skiing with Tia and their son. They all needed to feel a little normal again, and while Brad did take it easy, he didn’t skip a beat on the slopes. Some days were good, others wild and unpredictable. Tia and the NO agreed Avastin needed to happen every 2 weeks. They were hoping the majority of the changes were due to edema while knowing it could be a tumor tentacle or something else. He started radiation at the end of January. Brad handled treatment well in the beginning with no real side effects. A week and a half into treatment, things turned yet again. He wasn’t sleeping much and seemed to almost have manic episodes. He was having trouble using his phone. His rash was causing him more unbearable pain. It had only worsened since its onset, and he was finally able to be seen by a dermatologist at the beginning of February. After nearly 2 months of a painful worsening rash, Brad was diagnosed with shingles, a severe case due to it covering his torso & both of his legs. He was put on 2 types of antibiotics for the shingles. Tia was constantly writing notes & calling his NO and team. She was told by the NO to only use both forms of contact if it was “a real emergent situation." Brad's moods started to become more and more unstable; ranging from anger and fear to extreme paranoia. He mentioned not feeling well and after a test, he was covid positive. Tia was increasingly concerned, and decided to take action. Brad was taken by ambulance, in restraints, to the ER. He had become entirely delusional, combative, and confused. Once admitted to the ER and after much testing, he was admitted to an inpatient oncology unit. The admitting doctors suspected he could be suffering from meningitis. His body was in absolute duress. Brad was given medications to calm his mood, started IV treatment for his numerous infections and he was hooked up to an EEG monitor. During the next few days, he was mostly incoherent. His paranoia remained, he was impossible to reason with and at times didn’t even recognize his wife, Tia. He spoke of colors, shapes, and space. After some time spent with him, Tia could see a correlation with rational things; for instance yellow for pee or sun for his son. After days of being monitored, it was discovered he was having massive amounts of focal seizures. Over a 12-hour period, he had up to 24. Some lasting 30 seconds, while others could last for 20 minutes. He was given several different IV seizure medications. Slowly his behavior calmed and the seizures were at bay. Brad and Tia could never get a definitive answer on why his behavior changed so drastically. There were too many variables to pinpoint one thing and not even the seizures couldn’t fully be blamed. He spent 12 days in inpatient. Brad doesn't have a clear recollection of all that happened just before and during his impatient stay but does recall bits and pieces. Upon discharge from the hospital, the NO wanted Brad to be admitted to inpatient hospice after his stay, due to how severely his mood & behaviors had changed, but Tia said no. She knew Brad would want to be home, and knew even after all they had been through, he wasn’t done fighting. It was with great resolve that Tia was now, more determined than ever to support him coming home with her and continuing with his care plan. After a few days home to ensure everything stayed stable, Brad finished his SOC plan with yet again, very few side effects, beyond being a little extra tired. After that Brad had a good 5 months just living life. A family trip to Mexico was just what was in order. A year after diagnosis, another MRI showed a new tumor. Proton was recommended for 15 days and he breezed through it. About 3 months after that he started to slow down. His NO at the time wasn't willing to do anything more so again, he switched providers. There were some changes Tia noticed. tiredness, paranoia, less emotion, and a weakness that seemed to slowly be getting worse. Scans showed GBM was spreading to his ventricles. The new NO recommended Gamma Knife to slow the spread. Unfortunately, his path was already set before. Gamma hit him hard, and he didn't bounce back. On April 15th he turned 50, in bed. and within the next 2 weeks he was on home hospice. His family wanted him home, but due to worsening pain, agitation and paranoia he was admitted to inpatient hospice. He is now in his final days. Brad has fought to be here valiantly, but he is tired. Tia will continue to fight for all GBM patients and their families. Brad deserves to be an inspiration and a legacy.

We hope this story can inspire the fight in you too; Patient; Caregiver; Family and Friend alike.