Help our "Ray" of light, fight this fight

Ray Brown is a 48-year-old veteran and father of four. Ray proudly served our country in the United States Marine Corps for 4 years, doing a tour in Saudi Arabia. Most importantly, he is an AMAZING father to our 15-year-old twin sons, 13-year-old daughter, and 7-year-old son. His children mean everything to him, and his world has revolved around their every need since the day our twins were born. He is kind, compassionate, and a genuinely great man who befriends everyone he meets. His smile and laugh are contagious.

He is a longtime community member of Frankfort, where all four of his young children attend school. He has spent most of his professional career in the car industry, serving as a parts counterperson, supervisor, and, most recently, parts manager for Gerald Toyota in Matteson. He loved his job and, more importantly, the people he worked with. Ray's hobby was working out. He would frequent Reclaim Fitness 5-7 days a week. His diet consisted of protein shakes and high-protein meals. He was the healthiest person we knew. He was certainly what many would refer to as a gym junkie.

Ray’s whole world was turned upside down in September 2023. His family, friends, and co-workers began to notice Ray wasn’t speaking properly. On September 6, 2023, he was brought to the emergency room with stroke-like symptoms. After several tests, a CT scan determined there was a 4cm mass in his brain. The doctors suspected the worst but could not confirm until a biopsy was conducted. He underwent a brain biopsy, and the doctors confirmed that he had a grade 4 glioblastoma. The words no one wants to hear, “You have terminal brain cancer,” echoed through the ears of Ray and his family that day.

A glioblastoma is the most aggressive form of brain cancer, with an average prognosis of 12–18 months. No one has survived this type of cancer, as there is no cure. Surgery can never get it all out, radiation and chemotherapy never kill it all, and the cells are so relentless that they always grow back and grow back fast. Treatment might help slow the regrowth and buy him and his children a few extra months of quality time, which we are all hoping and praying for.

We consulted with surgeons at Elmhurst Hospital, Silver Cross, and Northwestern, none of whom felt confident in attempting to remove the tumor without leaving him with additional cognitive and motor deficits. A family member who happens to be a neuroscience researcher, got us in contact with Dr. Edward Chang on September 16th at the University of California, San Francisco (UCSF). Dr. Chang reviewed the MRI scan through a Zoom call on September 16th and was confident that he, Dr. Berger, and Dr. Hervey-Jumper would be able to successfully remove most of the tumor without leaving Ray with additional deficits. All three of these surgeons are nationally recognized experts in treating brain tumors.

On September 18th, Ray and I got on a plane and flew to California. Ray underwent an awake craniotomy using advanced neurophysiologic brain mapping on September 20th, where they were able to remove approximately 80% of the tumor. He spent several days recovering in the hospital, and on September 25th, we flew back to Chicago. We then met with Dr. Lukas and Dr. Gondi through Northwestern to begin the standard of care for this type of cancer, which is 6 weeks of chemotherapy and 30 consecutive sessions of radiation followed by 6 months of chemo (5 days on 23 days off each month). He also participated in a clinical trial taking the drug Mycophenolate Mofetil, a drug used to keep the body from rejecting or attacking a transplanted organ. The combination of chemotherapy, radiation, and the trial drug took such a toll on his body that he required multiple platelet transfusions.

In addition to the standard of care, Ray has had to start physical, occupational, and speech therapy. He also recently started using a tumor-treating field device called Optune. He wears this on his head at least 18 hours a day for the rest of his life. He is on 22 different medications and supplements. Some to prevent seizures, others to reduce swelling in the brain, and others to combat the side effects of chemotherapy.

Ray’s brain cancer left him unable to work or drive a vehicle, and he lost the logistics business that he had worked so hard to start up from scratch due to severe cognitive deficits and aphasia caused by the tumor. His motor skills are starting to be impacted as well, with numbness in his right hand and foot. He was strong, self-sufficient, and independent one day, and this horrific disease ripped all that from him. As you can imagine, the doctor visits, medications, Optune, transportation to and from doctor visits, and everything else that comes with having terminal cancer have left him in significant financial distress, unable to keep up with his day-to-day bills or provide for his children despite the financial help he is receiving from family. The total amount for his medical expenses is unknown, but it certainly will not come to a halt anytime soon. There will be many more doctor and hospital visits, prescriptions, supplements, therapies, assistive devices, and possibly more surgeries, and the list goes on and on. Furthermore, if he were to need an additional surgery due to the tumor growing back, we would be taking him back to UCSF to have the same surgeons operate.

It takes immense strength and courage to fight this fight, and we are truly inspired by his resilience. If you're a veteran, have school-aged children, or a family of your own, or if this story simply resonates with you, please consider a donation. Any donation, no matter how big or small, is greatly appreciated.