My son was two years old before I returned to the workforce as an Extension Agent with the University of Kentucky. While I was working, he stayed with his grandparents. Just a couple of months after we began the daily trip to Mommaw's house, he began to get car sick once a week or so. We attributed it to the early morning drive and paid little attention to it. Soon the vomiting became a daily occurance, sometimes multiple times per day. Shortly before Thanksgiving 2005, we visited his pediatrician who diagnosed acid reflux and prescribed a drug for that disorder, as had a family doctor. This helped temporarily. By Christmas, we'd returned to the pediatrician because the vomiting was back. During this time, his right eye had also turned inward making him appear cross-eyed. The pediatrician attributed the vomiting to sinus drainage and the eye to a condition called strabismus. We left with a prescription for a decongestant and an appointment with a pediatric ophtamologist the following January. Christmas rolled around but he could barely enjoy it. We actually spent Christmas eve with various parts of the family, him vomiting most of the time. He took a nap, about three hours long, at his aunt's house, and woke up feeling much better. By this time, he was losing some of his coordination. I assumed it was because of his eye condition, reading that it could cause double vision and thereby coordination problems. I tried to have his opthamologist appointment moved up but could not. I remember very clearly him walking across the floor of his great grandfather's living room to give him a Christmas present. He was able to carry it and was a bit unsteady but still relatively normal. That changed significantly the following week. By New Year's Eve he could not walk ten feet without help and his eye had turned so far inward that I could only see half of his pupil. We went out for the evening. He wanted to but clearly didn't feel well so we cut the night short. On the way home he threw up again and we decided enough was enough. We took him to the emergency room. I told the emergency room doctor that he'd been vomiting, his eye had turned inward, and he'd lost his coordination though I didn't think the three things were related. He immdiately called for a CT scan. Even after that scan I didn't believe anything serious was wrong, assuring my husband that they would return and tell us the scan was clean. He was more pessimistic. We sat inside our curtain, holding our obviously ill child when the doctor returned. I heard him outside of the curtain with a patient representative who had been talking to us during our wait. She asked if she should come in too. I knew at that moment that we were not about to get good news. The doctor told us that there was a mass in Brandon's cerebellum and that they would send us immediately to Columbus Children's hospital, some three hours away from our home. I asked what the mass was. A tumor he said. Is it cancer? Probably, the doctor responded, telling us that the doctor in Columbus could tell us more. Prior to this, he'd been the picture of health, not even so much as an earache.
Of course we had an MRI. It was a tumor about 4 cm in diameter. They couldn't tell if it was attached to his brain stem before surgery. It was cancerous. It blocked the flow of CSF from his brain and he had three times as much fluid in his brain as normal. Our surgery was performed on January 3, 2006. It took 5 hours. It took an hour for the neurosurgeon to come speak to us afterward. That was the longest hour of our lives. The tumor was not attached to the brain stem and all of it was resected, but it had metastasized to the rest of the brain. He found three small lesions on the brain during surgery but they were two small to try to resect. After he recovered from the surgery sufficiently, they performed a spinal tap. There were no cancer cells in his CSF.
Brandon had a double lumen broviac catheter inserted in his chest in mid-January. All of the fluid drained sufficiently on its own and we did not have to discuss the insertion of a shunt. We began chemotherapy mid-January. He would have five cycles of treatment approximately three weeks apart. The first, third, and fifth cycles were the same. He received Zophran for nausea before beginning then, over the course of four days, received vincristine, mesna, cistplatin, methotrexate (followed by a leucovorin rescue) and cytoxan. The second and fourth treatment cycles consisted of etoposide and temodar given orally at home followed by in-patient cytoxan. We also returned to the hospital every week for a dose of vincristine. Prior to our second treatment, we went in for a stem cell harvest. Brandon's stem cells were harvested to be transplanted later. He was sick during the treatments but, for the most part, we handled his nausea pretty well with zophran and phenergan. After each treatment we returned to the hopital with an infection of somekind and wound up spending an average of three weeks per treatment at Columbus Children's Hospital. In March, prior to his third treatment, we had another MRI done. It showed that any residual material in the tumor cavity was disappearing. Great news.
After his last chemo, we went in for our stem cell transplant. We'd had a barrage of test done to get ready for this process. The day we were to be admitted for transplant, we had another MRI. It showed spots, all smaller than a grain of salt, had appeared on his brain and spine. The oncologist could not tell us definitely that the spots were cancerous but we would not be able to do the stem cell transplant. We thought we were nearly finished. We waited for a second opinion but were fairly certain we would have to do raidation. We had thirty one radiation treatments at Ohio State University James Cancer Center (31 brain, 17 spine). During this time, Brandon and I lived in Columbus while dad remained in Ky. Brandon had to be anesthetized for each treatment, just like for every MRI. We had trouble controlling his nausea in the beginning but a dose of zophran prior to treatment and one at night before bed seemed to do the trick. Halfway through he had to be given small doses of decadron to relieve the pressure on his brain but otherwise he went through the radiation much like the chemo, like a very brave and very strong little boy. We are a month out of radiation and waiting for follow up MRIs. We'll likely go through chemo again. We've had difficulty with potassium and sodium levels and in between each treatment I had to give him daily neupogen shots in his thigh. His hair is completely gone and his head is covered with some dark scaley patches that are slowly disappearing, but he's otherwise a normal three year old.