From helpless to hopeful

"What is this lump on his neck?" asked our family physician. Just past six and a half months old, our baby, Jasan, had a few nights of intense crying followed by nausea and diarrhea. That prompted a visit to the family doctor, Richard L. Huffer. He was an amazingly thorough doctor and as he was examining Jasan, he kept going back to Jasan's left neck over and over again. He found a lima bean-sized lump on Jasan's left neck. I told him that I had given him a bath just before leaving home and didn't notice anything out of the ordinary. He guided my right index finger over the left neck and sure enough there was a lump. He told me it might be a gland that was infected and that a course of ampicillin would probably do the trick. The next week was somewhat normal for an almost seven-month-old baby; he ate, played, got changed, slept and fought me every inch of the way when it came to taking the ampicillin! The lump didn't really shrink; in fact I thought it was getting bigger, so we were back in the doctor's office before our next appointment. Dr. Huffer had spoken to a surgeon at Loma Linda University Medical Center and knew that it was time to refer us to him. I asked him if it was serious, "like cancer serious?" He handed Jasan to the receptionist and did his very best to calm me. He told me to let the Loma Linda guys check him out; told me to call him as soon as I knew a diagnosis, gave me a hug and sent us home. I packed a couple of small bags for the two of us and then with Jasan on the floor grabbing at the dog's tail, I just sat on our bed and bawled. I just felt so helpless. I made the necessary phone calls to family and friends and then enlisted the help of my sister-in-law, Mary, to make the trip with us the next morning. She was great at tending to her little nephew as we drove and kept my mind off the challenge of the day. My husband, Jim, would join us the next afternoon. After the initial examination by the pediatrician, we waited to see the pediatric surgery team. By this time Jasan had a mass the size of a small egg on his left neck and was extremely agitated. Jim joined us late in the afternoon with the news that he was staying with us for a few days until we knew a little more about what we were facing. Jasan was admitted to the hospital that evening and surgery to excise the lump was scheduled for the next morning. Paperwork had to be signed that evening and we wanted to hear any news from the surgical team when they made rounds. They told us the surgery would be about four hours. It was closer to six. They also told us that when he came out of surgery he would be hooked up to tubes, monitors, lots of bandaging on the neck and most likely would still be groggy from the anesthesia. After surgery, his crib was pushed out of the surgical elevator, he saw his daddy and all we heard was a very loud "dada dada dada" and saw no tubes, no monitors and only a small bandage on his neck. We were elated. A frozen section during the surgery gave us a preliminary diagnosis of neuroblastoma, a sympathetic nerve cell cancer. The formal diagnosis came about a 10 days after surgery when reports were returned from various labs across the country. Neuroblastoma. Tumor. Malignant. Radiation. The fight was just beginning! The following days were filled with more blood tests , 24-hour urine collections, tomograms, esophagogram, radiology studies, bone marrow test (this was the worst so far...no anesthesia ... just blood-curdling screams from Jasan as we waited for him just outside the procedure room). The oncology and medical teams wanted to discuss treatment with Jim and me. We listened to the information they presented. Our decision would ultimately determine our baby's future health. We both felt so helpless. What should we do? After two weeks we were released to go home. We had to return three days later to see the radiation therapy team. At that appointment Jasan was fitted with a clear Plexiglas mask that could be strapped to the table in the radiation chamber so that he couldn't move his head during the treatments. This was worse than hearing those blood-curdling screams during the bone marrow test. Jasan cried and screamed and yelled "mama," "dada," and "no, no, no" through a series of 25 radiation treatments. Subsequently, he fought thyroid cancer at age 15 and at age 21 had a recurrence of thyroid cancer. Three cancers would seem more than enough for one child, yet in between were numerous scares, hospitalizations, more surgeries, illnesses, regular testing; all due to the side effects of radiation. Did we make the best decision? We think that we did. The oncology team told us we could do nothing and take our chances of Jasan living a few more months or we could choose radiation and that would give him at least 18 more months on this earth and possibly side effects through the years. Jasan has surpassed those 18 months by three decades plus and now serves as a cancer advocate helping others meet their own challenges. We know it hasn't been easy for him or for us, but we were always by his side and that will never change. Note: Jasan's neuroblastoma was diagnosed in 1976. We lived in a small town of about 25,000 people. There were no support groups, no major medical centers and we didn't know anyone that had a child with cancer. We traveled an hour and 15 minutes each way from Indio, Calif. to Loma Linda University Medical Center in Loma Linda, Calif. for each appointment, treatment and hospitalization. Jasan's case was the 26th neuroblastoma in the U.S. It was the first tumor recorded on the neck, most are found in the stomach. Thank you, Dr. Huffer and LLUMC for saving Jasan's life! Carolyn Zimmerman is the mom/caregiver of a three-time cancer survivor. Her experience covers caring for a six-month-old baby diagnosed with neuroblastoma, a 15 year old diagnosed with mixed papillary and follicular thyroid cancer, and a 21 year old diagnosed with recurrence of the thyroid cancer. She says the treatments, surgeries, scares, support and dealing with the medical world have been a major part of her son's life and directly affected her role as mom/caregiver.