The First Year - Post Stroke Milestones
Roger created this video for his first post stroke anniversary. Creating this video was such an important process for him in his recovery. It helped him unpack his journey from the early days when he was unconscious, unable to speak, and unable to move on his own to when he reached each milestone in recovery that he set for himself. It still brings tears to our eyes.
March 29th, 2024 - The Night A Stroke Changed Our Lives
Roger had just finished cooking a wonderful meal for my visiting family when he urgently called to me. He was slurring his words, trying to tell me that he felt “weird”. As soon as I saw his right arm go limp, I KNEW.
I yelled for my sister to call 911 to tell them that my husband was having stroke. As we waited for the ambulance, I watched Roger deteriorate before my eyes and lose consciousness. Aside from checking his pulse and talking to him, there was very little I could do in terms of first aid. The damage was happening inside his brain. I was in utter disbelief that my fit, competent, and healthy husband could be having a stroke at 56 years old.
When the paramedics arrived, things shifted into fast forward. He was transferred to the ambulance within minutes and whisked off without me. There is nothing worse than watching someone you love being driven away and not knowing if they will be alive when you see them next.
My neighbor drove me to the hospital, comforting me as I was overwhelmed by panic, fear, and disbelief. When I got to the ER, Roger was already in the CT scan. I remember standing there alone waiting for him to return in a complete state of numbness. My thoughts and emotions were suspended because thinking or feeling would open a floodgate of fear that I did not have the capacity to unpack.
When he returned, the ER physician confirmed my worst fears. Roger was having a massive hemorrhagic stroke deep in his basal ganglia. This was a not a place neurosurgeons wanted to go because surgery in that location was too risky. So the plan was for Roger to go immediately to the Intensive Care Unit (ICU) where they could monitor his increasing intracranial pressure and provide life saving care as needed.
Before he was wheeled away, he had a few moments of wakefulness. He looked me in the eyes and told me he loved me. He then looked at the doctor and told them to take care of me. And then, he was gone. I had to wait alone again for 30 minutes until I was allowed to join him in the ICU. To be honest, I have no memory of the wait or the walk upstairs. I had clearly shut down emotionally. I would have to maintain that steely reserve for the hours and days ahead.
Fighting for Recovery - One Milestone at a Time
Week 1
Week 2
Next 4 weeks
Week 7
Roger spent a week in the Intensive Care Unit. For the first few days, he was unconscious and having seizures. He was also paralyzed on his right side. He was in critical condition as we waited for the bleed to subside. It was tough and go for the first 2 days.
Roger was moved to the Neurological Unit once he was medically stable. This was where the work really started in terms of re-learning to talk, eat, take care of himself, and re-gain mobility with significant right side hemiparesis (weakness). He learned to navigate the hallways in his wheelchair.
Roger then moved to the Inpatient Rehab Unit at St. Charles for 4 weeks of intensive physical, occupational, and speech therapy with the amazing staff. Unfortunately, he developed a blood clot in his leg that traveled to his lungs, resulting in a terrifying setback that ultimately required me to initiate CPR. He returned to a higher level of care for a few days before continuing rehab.
We got to go home and begin the journey of re-claiming our lives and finding ways to adventure with Roger's disabilities. He continued speech, occupational, and physical therapy in the outpatient setting since he still had a long way to go to regain his mobility and ability to communicate.
And then came the cancer diagnosis...
When Roger arrived in the ICU immediately after his stroke, the doctors were surprised that such a healthy and fit person would end up with such a massive brain bleed. Why did Roger have a stroke? One theory was that it was caused by his borderline high blood pressure and stress.
The other possibility was that it could be brain cancer. The floor fell out from under me when the word "cancer" was mentioned. Unfortunately, it was too early to diagnose cancer because there was so much bleeding in his brain. The doctors continued to reassure me that cancer was very unlikely, so we clung to the possibility that high blood pressure was the cause and tried to remain hopeful.
During the months following his stroke, the neurologist ordered routine brain MRIs to monitor his recovery as the bleeding receded. As the months passed, we became more hopeful that cancer was not going to be in our future. But that hope began to change in September 2024 (5 months after the stroke)…
September 2024
May 2025
June 2025
September 2025
The neurologist identified a very small nodule on Roger's basal ganglia deep in his brain. It measured 2x3 mm - way too small to biopsy. So we had to wait and see what it did over the coming months.
Over the intervening months, the nodule grew slowly. By December 2024, it was 5x5 mm and by May 2025 it was 24x20x30 mm. Up until May, the neurosurgeon had been reluctant to do a biopsy because of the nodule's location deep in Roger's brain. The risk of bleeding and brain damage was too high. However the rapid growth of the nodule now warranted a biopsy because it was looking more like a tumor than anything else and Roger was developing cognitive symptoms.
Roger came through the biopsy on June 5th with flying colors and no signs of brain damage from the surgery. He was diagnosed with Stage 4 Diffuse Midline Glioma H3K27 (a terminal and aggressive cancer that is very rare in adults). He started routine treatment as soon as possible which consisted of 6 weeks of daily radiation and oral chemotherapy.
Roger finished standard treatment in August 2025. We spent the summer reaching out to top neuro-oncologists across the country as well as reading as much as we could about this rare cancer. At the time, there were no other available treatments and this cancer had a life expectancy of 18 months from diagnosis. Desperately, we looked into clinical trials that would provide some hope. We were beyond lucky to learn that ONC 201, a promising drug in clinical trials was being fast tracked towards FDA approval. Roger was fortunate to be among the first patients to begin treatment as soon as it was approved.