John (Johnny) Rinnier has always been moving- from playing hockey, coast guard reserve weekends, running Tough Mudders, playing with his daughter Kaylee, and even recently returning from a year long deployment in Cuba. Nobody would have ever thought that the guy jumping over walls covered in mud and fixing the very radiation machines that are now saving his life, would be doing all these things while an aggressive malignant brain tumor was taking over.
On Wednesday, November 7th Johnny finally agreed to go to the hospital for the headaches, dizziness and nausea that he had been working through for 72 hours. It was then that a stunned ER doctor informed Johnny, at 36 years old, that the CT scan showed a 4cm by 4cm brain tumor. Tumor was causing his brain to be shifted to one side and beginning to crush critical portions causing his symptoms. Within 48 hours the tumor, thankfully, was successfully surgically removed. In true Johnny spirit he was up walking around and watching the football game in 24 hours after surgery, earning himself the name "SuperMan" by the nurses who cared for him. We were hopeful that this was a benign growth and now gone for good. Hopefully he was one of the lucky ones.
Three weeks later on November 30th we received the earth shattering news that it was not benign but in fact a very aggressive and very malignant tumor. Over the course of days we had a full diagnosis of Medulloblastoma. An extremely rare cancerous (200 adult cases a year) brain tumor...which means we need to get aggressive treatment.
Johnny was able to be seen by the world renowned team at Memorial Sloan Kettering(MSK) in New York City and the planning started. 30 days of proton therapy with a 30 day "rest period" before starting 6 months of chemotherapy. While the tumor is gone, it is so aggressive this extreme therapy is needed to reduce the risk of reoccurrence. The months ahead will include many days and nights away from home, side effects including hair loss, weight loss, vomiting and fatigue. Johnny has traveled an hour each way for his proton therapy for over a month - Monday through Friday. Now he will travel to NYC starting in March to be admitted to MSK to have a port placed for his chemotherapy to be infused through, he will keep this for at least two years. He will then be readmitted for at least 3 days every month for treatment, with complications including blood transfusions and infections to be expected prolonging some of these stays.
Johnny has been out of work since November and will not be able to return until after his chemotherapy is complete in August. As I mentioned before Johnny works on the radiation machines used to treat many types of cancers in several hospital in Southern/Central New Jersey. In addition, Johnny is a proud Coastie! He loved his weekends of training and with pride endured a year long deployment to Cuba. Unfortunately, he struggles not only emotionally but financially due to the inability to participate in his reserve weekends. With the lost of his income and the cost of deductibles, co-pays, gas money and hotel rooms to stay in NYC for his chemotherapy have been tremendous stressors.
Johnny continues to face challenges ahead but we are so grateful for the support of Memorial Sloan Kettering and the ability to receive care at one of the few centers in the world that knows how to treat this tumor. We ask for any help you can provide to allow Johnny to focus on getting healthy and fighting.
Debbie Gagliardi (Mom) and Shylah Haldeman (Big Sister)