There were signs that something was wrong with Neil. I had been noticing changes in his behavior for several months. He began having unusual mood swings and would become frustrated easily. Sometimes he would say the most callous things to me, and I was beside myself trying to understand what I had done. He was also increasingly forgetful. Then I noticed the physical changes. He developed a limp on his left side, often dragging his foot when he walked. He literally had to lift his leg into the car when he sat down in the driver’s seat. It got worse, but Neil insisted it was nothing, even when he needed to use a cane to get up and down stairs. Neither of us saw any connection between these two odd symptoms, and he was convinced they would pass on their own.
On March 25, 2022 on our way out to dinner, Neil narrowly missed hitting a car as he was merging into traffic. He lost peripheral vision in his left eye and never saw it coming. That evening we drove to the emergency room thinking he was having a stroke. But it was something far worse.
Bridging the Gap
For those who are new here, you’re going to miss all that was written in the gap between my post on November 15, 2021 and January 1, 2022. This is where CaringBridge picked up the rest of the story. I’ll do my best to summarize here though. A CT scan of Neil’s brain revealed two masses on his right frontal lobe. This explained the weakness on the left side of his body. It also explained the emotional outbursts and mood swings controlled by that area of the brain. An MRI confirmed it was one of two types of cancer — Glioblastoma or Lymphoma. The neurosurgeon bluntly told us he was hoping for the latter.
A biopsy a few days later confirmed Diffuse Large B-Cell Non-Hodgkin Central Nervous System Lymphoma. It is a very rare and aggressive cancer, affecting only about 1500 people in the U.S. each year. But unlike Glioblastoma, it typically responds well to chemotherapy. We needed act quickly to find a neuro-oncologist who knew how to attack this cancer. Without treatment, Neil would not survive more than a few months.
Answered Prayers
I’ve never witnessed so many prayers answered so quickly.
Within days of Neil’s biopsy, I found a Facebook group specifically for CNS Lymphoma. Every member of the group was either a patient, caregiver or survivor. We found many resources there and also located two of the finest Neuro-Oncologists on the east coast. Initially, Neil’s cancer journey took us to Memorial Sloan Kettering in New York City. We traveled back and forth every 10 days for his first 5 rounds of high-dose Methotrexate chemotherapy. I was able to stay with his sister’s family in the Bronx during each admission. Later we transferred to Johns Hopkins in Baltimore, MD where Neil completed his final 3 rounds of chemotherapy. After his 7th round, an MRI showed “CR” or Complete Response. He was in remission! But just to be sure, he completed one final round of chemo, followed three months later by a stem cell transplant. This is the preferred consolidation for CNS Lymphoma, and is hoped to bring long-term remission.
Long Road Home
From the night of Neil’s diagnosis to this post today, we have been prayed over from morning to night by more people than I can count. Many were longtime friends, but others were complete strangers who added us to their daily prayer lists. I have boxes of cards that were sent to Neil at home and while at the hospital. They are full of scripture verses, hymns and heartfelt petitions to the Lord. We received anonymous care packages, gifts of food, warm blankets and even jigsaw puzzles to help us pass the time away from home.
The many prayers brought us relief from physical pain, loneliness and despair. They calmed my fears during our darkest nights, and opened doors for financial concerns, transportation hurdles and housing needs. And now that we are home, these faithful prayer warriors continue to cover him during his long recovery. Our CaringBridge page became not only a means to stay in touch with our friends and family, but also a way to share our prayer needs in the moment. (Note: for those who wish to follow Neil on CaringBridge, this page is a private, not public. You will need to request permission to join.)
We are humbled and overwhelmed with gratitude. Thank you for walking with us on our journey!
Please continue to follow Dawn’s New Day and watch for frequent updates about our our family, and our little hobby farm at Hickory Grove.
Learn more about Central Nervous System Lymphoma at the Leukemia and Lymphoma Society.
Learn more about PALS – Patient Airlift Services, which provided transportation at no cost for Neil’s treatment in NYC.