When Life Stood Still
During a routine two-week checkup; for a seemingly perfect, healthy baby boy, the pediatrician identified that Jackson's belly was oddly distended. After a further examination, and a second opinion by an additional pediatrician, it was recommended that Jackson be taken to the ER to investigate the cause. We made our way to Valley Hospital as quickly as possible. As a mother, I could not shake the feeling of impending doom. The worry seemed as if it would completely consume me. We spent hours pacing the cubicle sized room we were placed in, and completed test after test. The unknown made time feel as if it was standing still. After an X-ray, Ultrasound, and an MRI, our family received the words no parent should ever have to hear. The Dr. entered the room, shut the door and uttered the words that will forever pain me to the core. "I'm sorry to tell you this, but your son Jackson has Neuroblastoma, which is a form of cancer. Neuroblastoma is a rare pediatric cancer. The fact that the word rare is often used in conjunction with Neuroblastoma, is one of the most misleading things about it. This is a reality that we would soon learn throughout our journey.
Jackson was immediately transferred to Hackensack Hospital for further testing, and our family would spend the next 16 days living in the Pediatric Oncology Unit at HUMC. I don't think I slept more than twenty minutes the first night. I felt as if life was over; I was most certainly petrified that Jackson's was. My husband and I thought the day we heard about Jackson's condition was the worst day of our lives, but in actuality, it was day two that will forever be known as the worst day we ever lived. Jackson had to undergo additional MRIs, while under sedation. Jackson's breathing was impacted by the swelling that was present within his stomach, so he was also intubated for his day filled of procedures. He had a liver biopsy so it could be sent out to pathology, for further testing and confirmation of diagnosis. Last, but not least, a Broviac (central line) was placed in our 15-day old baby's chest, for the immediate administration of chemotherapy. All we could do was wait around for results, pray, and put our faith in our medical team. We had to hand our baby over to the medical staff, and it would be more than 6 hours before we were able to see Jackson again. We waited for hours to hear some news. Our family stayed with us around the clock. Not a single person knew what to say. We were all equally frightened for Jackson's life. Finally, one of the Oncologists came to speak with our family. The preliminary results, coupled with no certainties is why this day would go down in history as our family's darkest hours. The results of the MRIs indicated that there was a large tumor; believed to be the primary tumor, located along the spine. The mass was pushing on the spinal cord, and was within millimeters of compressing it completely. In addition, not one, but two adrenal glands were infiltrated with disease, and the cancer had metastasized to the liver, which is what caused the distention in Jackson's stomach, and led to our diagnosis. Fully understanding how infested our son was with disease was crippling. All we wanted to hear was that Jackson was going to be okay, and no medical professional was willing to tell us that with our current situation. There are no guarantees. This battle would have to be fought one day at a time, which is easier said than done. Following this discussion with our medical team, we were finally able to see Jackson. He was moved to the Pediatric Intensive Care Unit. He was 15 days old, had an incision from surgery, a surgically implanted tube hanging out of his chest, an IV still placed in his foot, and intubation tube, and endless wires hooked up to him. He was so unbelievably swollen from all of the fluids he was being given intravenously, and he was heavily sedated. The sight was almost too much to bare, and it would take me months to get that image out of my mind. The nurses explained that it was going to be up to Jackson when they removed his breathing tube. When he displayed signs of trying to breathe on his own, they would remove it. Well that night, Jackson showed us all who he truly was, and what he was going to be....we just didn't know it yet. As soon as Jackson heard my voice he started flicking his eyelids, and fighting to breathe by himself. He certainly showed the Doctors and nurses what he wanted.
News of our son's diagnosis spread through family to our friends, friends to co-workers and so on. Before we knew it our story had spread like wild fire, and the outpouring of support was like nothing I had ever seen. There was a Go Fund Me page, meal trains, cards, gift packages, and endless amounts of prayers. Our family had to start a Facebook page so that all of our supporters could locate updates on Jackson. The amount of love and support we were shown was something we would never forget, and that is when we decided Jackson's journey would not be in vain, and we would be sure to pay it forward. That is how the JacksonStrong Foundation was formed, and our mission is to offer financial and emotional support to families impacted by pediatric cancer, while continuing to raise awareness.
Our tiny superhero Jackson would go on to complete four rounds of chemotherapy over the course of three months. He did it with a smile, and demonstrated strength I didn't know was possible. He continued to thrive, put on weight, remain free of infections, and meet developmental milestones according to typical guidelines. After countless blood draws, three sedated MRIs, two MIBG Scans, multiple transfusions, a CT Scan, a liver biopsy, a Broviac placement and removal, and endless check-ups, on January 22, 2016, I received the call I had dreamt of every single day since diagnosis. Jackson showed no evidence of disease.........his scans were clear! Jackson is currently in remission and doing beautifully.
Our story may have a happy ending, but we are on a mission to see more happy endings. We are on a mission to see happy endings among communities of children affected by a disease that is NOT RARE. Please join our crusade, and help make a difference in the life of a sick child!