My Name is Nini
“I came into this world on September 27, 2011. My parents’ first born and their princess. They were overjoyed to have their happy and healthy little girl. The first month of my life was very uneventful: eat, sleep and poop. Mamae and Papai loved to show me off to all of their friends and Mamae was already attempting to teach me Portuguese. At five weeks old, Mamae was changing my diaper and found blood in my urine. After speaking to my pediatrician, we rushed to the hospital assuming it was a urine infection. That night, after much blood shed, catheters and an ultra sound, it was confirmed that I had a tumor in my right kidney. I was transferred to the top Pediatric Oncologist at Memorial Sloan Kettering Cancer Center in New York City. The doctor said that the chances of it being malignant were slim and if it was cancer, it was absolutely curable and treatable. Those were the odds. Looking around the Pediatric Oncology floor, we felt lucky. Most of these children looked like they were dying. I could not believe they all had cancer. No hair, as pale as ghosts, scars all over their frail bodies. We swore that was not us nor would it ever be. We stayed positive and counted our blessings.
I was six-weeks-old when I had surgery the morning of November 1, 2011. We were immediately told it was cancer and that the oncologists did not know what kind. That was never a good sign. For days, we waited in the hospital depressed, hopeful and praying that it was something that was curable. We plead with God for it to be anything other than Rhabdoid, one of the most rare and aggressive of all pediatric malignancies. Four grueling days later, my surgeon came in to deliver the news. I was diagnosed with a Malignant Rhabdoid Kidney Tumor. There was that word again. Cancer. Rhabdoid. We were in trouble. There are typically 5-10 cases diagnosed per year in the United States and doctors know little about how to cure it. They gave me a 20% chance of survival. My parents were devastated. They fell to the floor; their cries were now loud yelps of pain and their hearts shattered. How could this be what their happy and healthy little girl had? How could a newborn have cancer? They were advised that I should begin a very aggressive chemotherapy regimen the next day. Instead, they decided to take me home and spend the weekend thinking about what they should do. Chemotherapy, more surgery and a long list of medications seemed like a horrific solution for a newborn. However, giving up and never trying for a cure did not seem like a good option either. They would have to bring me to the edge of death to attempt to cure the cancer. Do chemotherapy or enjoy our last few months together? Over the weekend, Father Donnelly baptized me, our friends and family gave us tremendous support and my parents continued to sob into each other’s arms at night.
On Monday morning, November 7, 2011, everyone on board, we returned to the hospital ready to fight and with the decision made to BELIEVE! I was different! That day, I became one of the cancer patients on the ninth floor. I was seven-weeks-old and the youngest by far. Altogether, I endured 10 rounds of some of the most aggressive chemotherapy at MSKCC with very little side effects. I was so happy and strong that my nurses nicknamed me the “Rock Star”! The doctors were shocked at my progress and strength. Mamae and Papai changed their diets, their way of thinking, the way they lived and we enjoyed every day together! We all had to be positive and every morning we somehow found the energy and battled once again. There was always an issue: a new port being surgically inserted, counts too low for treatment, hospital admittances due to fever, blood and platelets so low that I had constant bruising or bleeding, in addition to the other barbaric things that were occurring with my body because of treatment. After 9 months, numerous transfusions and more surgeries, the doctors believed that I had succeeded. Unfortunately, they were wrong and a new tumor was growing in my brain. Now, with a terminal prognosis, my parents were told there was no hope besides unchartered experimental treatments, all of which would include more surgeries, chemotherapy and radiation. No one had ever survived a distant metastasis. We came home once again to regroup and make another tough decision. We spent a week with our families and friends. Everyday was a celebration. We played in the pool, went on the boat, had a BBQ, I played dress up and we took a lot of photos and videos. We did everything because we all knew it could be my last time. We could not just sit and sulk, we had to smile. As I giggled and played, Mamae and Papai laughed and cried. They knew they would have to send me to heaven in a few weeks. It was a thought that made them sick with physical pain. A thought that made them think they could not continue on without me. Again, we tried to BELIEVE!
Western medicine was not the cure so how about Eastern medicine? Crazier things have happened. After much research and numerous phone calls, we all got visas and went to China for a three-week treatment with the top Traditional Chinese Medicine doctor in Beijing. It was the best vacation ever! My parents, grandparents and uncle all came! I went to the Great Wall of China twice, visited the old temples, met the people of Beijing and was the happiest I had ever been. The Chinese people were so welcoming, loving and warm. They all wanted to take photos with me because they had never seen a Caucasian baby in person. For once, I felt normal because no one had any idea that I had terminal cancer. I looked and acted as healthy as any eleven-month-old. My family and I did acupuncture and energy work everyday for 22 days. We took Traditional Chinese Medicine herbs to help repair and cleanse our bodies. Everyone had to heal and reduce stress. We lived in the moment and we were Zen. My doctor cured our souls! We came home hopeful and BELIEVING. The following week, I had an outrageous first birthday party with 250 people. Some of my guests were excited to meet me for the first time and others had been praying for me for months. It was a blast! Unfortunately, the following Saturday I began to vomit and became dehydrated. Mamae and Papai took me to the hospital on Sunday morning. Although I was feeling better that day, we decided to stay overnight. Over the course of the night, my vitals weakened drastically and I began to seizure. The next morning, on Monday, October 8, 2012, I took my last breath and graciously flew to heaven to begin watching over my family. Mamae and Papai lead me through the gates of heaven surrounded by all of my aunts, uncles, grandparents and my priest. I even waited for my grandparents and uncle to fly in from California so I could say a proper goodbye. It was peaceful, beautiful and very quick. The emotional pain in the room was unbearable. They joined together to support one another and to everyone’s surprise, I had just left a little sister in Mamae’s belly. My family would continue on. They would find the strength because I helped them BELIEVE!
My short time in the world did not have the outcome that my family was hoping for, but it was still a success. I left the world a better place and changed people’s lives. Since I went to heaven, Mamae begged me for signs. So I have surrounded my family with ladybugs. They find ladybugs in special places, in different countries and even on important days. It is my sign to them that everything will be fine. The morning of my second birthday, my parents and Avery were on vacation, attempting to escape some of the pain of that day. I reminded them that I would always be with them. A ladybug flew directly onto my sister, Avery, and then fluttered straight to Mamae. When Mamae yelled for Papai telling him about the ladybug, it flew onto him. I touched the three of them that day. I am still here and when you see a ladybug, it is me, reminding you to always BELIEVE…no matter what the circumstances.
Nini AKA “The Nugget”