When I met David, the love of my life, he said something very startling to me. He told me he didn’t think he would live past age 40. His words turned out to be prophetic.
David came into my life like a wonderful Christmas present my senior year in college. As a theater arts major, I was directing and producing a Christmas pageant I had written, and David and his fraternity had volunteered to build the manger. Being the “take charge” kind of person I’ve always been, I was in my element giving detailed directions on everything, including the building of the manger. David told me they were there to help and knew what they were doing. He was kind, but firm. I’ve never been attracted to wimpy guys, so I fell hard for him right then and there.
We married in 1984 and our lives took off. David had completed an MBA and was working in investment banking. I had started my own company, Dingles & Co., and was successfully building a business authoring children’s books and turning them into multi-media properties. We were young, happy and had a wonderful future ahead.
The rug was pulled out from under us one day when David had a grand mal seizure and was diagnosed with a brain tumor. He was 39 years old. Looking back, the signs had been there, but we didn’t realize it. David had been tired; he was experiencing headaches and his arm was numb. Since he traveled extensively for his work, we thought his symptoms were related to the travel. We never dreamed he could have anything as serious as a brain tumor. We set out to find the best doctor we could to consult with and to perform the surgery on a tumor that was, technically, inoperable.
We started out with a surgeon in New York, but because of the complexity of his case, ended up with a world-renowned doctor at the University of Arkansas. In all, we made four trips to Arkansas. David came out of the first surgery without a deficit and for a short time, we were elated. Then the tumor came back with a vengeance and we began a long and grueling course of more surgery, chemotherapy, radiation and clinical trials. We traveled to Arkansas, New York and Washington D.C. It was exhausting and lonely – I don’t know how we did it. When it became impossible for David to travel, Dr. Sumul Raval – who had relocated from Memorial Sloan Kettering to the Jersey Shore area- gave him excellent care near our home. My beloved husband passed away at the age of 45 . . .five years later than his prediction.
While David was ill, I committed myself to him, trying to be the best caregiver that I could be. My husband was my priority, even to the detriment of my professional career and our finances. Several weeks after David passed away, Dr. Raval told me he had the opportunity to create a brain tumor center at Monmouth Medical Center, and if I was able to raise $500,000, we could name it in honor of David.
Although I had no idea how I would raise the money, I said yes, with one requirement; I insisted that the center include a family support space. Until you are in the position yourself, people don’t realize the physical and emotional toll it takes when a loved one is diagnosed with a serious illness. You still go to work, take on the responsibilities of your ill partner, and then you do everything you can to keep that person alive. Thankfully, I’m strong emotionally, and that helped me to keep moving forward.
For me, I felt compelled to help other families going through what we went through. We were fortunate to be able to travel for my husband’s care and I had my own company, so I had the freedom to do what I needed to do. Many people have jobs with only a few vacation weeks, children at home or limited income. I was driven to provide my community with a place that had cutting edge care close to home. A place where they could find peace of mind.
Nine months after David’s death, we had our first fundraising golf outing. Eleven months later, another golf outing, private and corporate donations and in-kind construction donations, we raised the $500,000 and opened the center. The David S. Zocchi Brain Tumor Center in the Leon Hess Cancer Center made Monmouth Medical Center the first hospital in central New Jersey dedicated to providing comprehensive services to treat benign and malignant brain tumors.
The administration was very supportive of my involvement with the design of the family space and development of the family support initiative. The family space includes a family room, library, doctor’s office, and a social worker. We launched programs for patients, caregivers and families of patients who are undergoing treatment. People from the tri-state area have attended seminars on various topics presented by the Brain Tumor Center’s team of Doctors as well as experts from Duke University, the National Institutes of Health and other respected institutions.
After the loss of my beloved husband, I found that the difficulty continues for a long time. There is the initial year of “firsts,” such as holidays and birthdays, profound grief, physical recovery from the caretaking regime, and an effort to reinvent life. I was an adult, and it was hard for me. I could not imagine how hard it would be for a child whose life was affected by the same set of circumstances. Most children look to a parent for all their needs. What happens when a parent can no longer drive, walk, or talk? What happens when they are gone?
It was then I had the idea to start a camp. Camp Jinka is a free, summer day camp that provides support for children and teens in these circumstances. They are nurtured in a loving environment where they create art, explore the outdoors and play games with other children who are in the same situation. They are with children who “get it” even if they never speak of it. They can escape the home situation and be a kid again!
For ten years, Camp Jinka has focused on children whose parents were diagnosed with or passed away from a brain tumor. In honor of our 10th year, we have expanded to include children who have a chronically ill parent, or deceased parent from other cancers, diseases, sudden death, drug overdose, suicide, mental illness, active military duty or violent crime.
My connection to Camp Jinka runs very deep. The first children’s book I wrote for my company was Jinka Jinka Jellybean. It’s a book meant to be used by parents to open a discussion about death, with their children. I wrote the book after my 23-year-old cousin Jeanmarie died. She was like a sister to me and Jinka was her nickname. Writing the book was how I dealt with my grief.
My creative energy continues to flow and I’m looking forward to the next phase for my endeavors. I’m refocused on the projects that were put aside while David was ill. In the past, many of the projects I’ve worked on have been with a market in mind, a commission, or building a company; I made choices according to that fit. Now I’m creating work with just my voice. I have a lot of stories to tell, I’ll be telling those stories.
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