Olivia Marie Boccuzzi was born on October 17th, 2009. She was the younger sister to our son James, who was nearly two at that time. Olivia was just perfect. Frank, James and I could not have been happier. Olivia amazed us with how independent and smart she was at such a young age. She met all her milestones early. She walked at 10 months, spoke in sentences by 12 months, ran by 13 months, sang songs and climbed stairs at 14 months and so on. Olivia had a great passion for life. She was determined to squeeze as much laughter and adventure into each day. She loved to dance, paint, do puzzles, read books, make a mess, explore and run free. She loved her stuffed animals and her baby dolls, which she referred to as "friends". She loved her big brother James and they played and laughed and loved. She loved her dada and adored her mama. Olivia completed our family. We spent her first 23 months of life in total happiness. Each and every day was filled with fun and no real worries. Olivia was a very healthy child. We had no reason to suspect that anything was wrong. She never had a cold, never fell and passed her well visits with the pediatrician with flying colors. We were so thankful for this beautiful girl who constantly made us laugh and love. What an amazing kid! Every single day with Olivia was a blessing.
On September 21, 2011 life as we knew it ended. That morning, Frank and I noticed that Olivia was falling a bit at home and was somewhat clumsy. This was completely out of character for her since she really never fell. She walked so early and was very steady on her feet. We assumed that the falling must be associated with her age. She was only 23 months and kids fall right? Maybe it was an inner ear infection? That causes disturbances in balance right? Who thinks the absolute worst in this situation? Within a few hours, we noticed the right side of Olivia’s face was droopy and her right arm and leg seemed weaker. Suddenly I noticed that her left eye turned in. It turned in and went back to midline. I ran to the pediatric ER at Maimonides Medical Center beside myself with worry that something awful was happening to my baby. They took blood, ran tests, and took scans. At this point, I assumed it was virus attacking her central nervous system and causing these symptoms. We need to figure out what it is and give her the right antibiotics I thought. But what happened shortly thereafter was something no parent could ever prepare for. News that crushes you and takes your ability to stand upright and breathe. A CT scan of her head revealed a mass. We were told that our beautiful, amazing, smart little girl had a brain tumor. What? What are you saying? She is so healthy. Are you sure? There must be a mistake, we thought.
We transferred Olivia to NYU Medical Center that same day. An MRI was done which confirmed that she had a tumor in the pons of her brainstem. The brainstem is where the brain and the spinal cord merge together and all vital structures for survival are there. We were told that these tumors are highly aggressive and the prognosis was grim. We were advised that Olivia needed to start radiation therapy immediately. This was really happening. Saying that we were beside ourselves is an under statement. James just started Pre-k and Olivia and I just started a moms and tots program for 2 year olds. Lives, as we knew it, would forever change. We cried, and cried and cried some more. Literally overnight, our world was destroyed. In an instant, my sweet little girls’ life was going to drastically change.
Despite surgery, after surgery, and trying different combinations of chemotherapy, the tumor was relentless. On August 17th we were told the tumor was progressing and we had no other real options in regards to treatment. We started yet another experimental chemotherapy with the hopes that the tumor would respond and stop growing. But Olivia was getting weaker and the chemo was not working. We knew our baby was really sick but we never stopped praying for a miracle. Despite every effort to save our daughter’s life, Olivia earned her angel wings on August 20th, just 11 months after this horrific diagnosis. Our hearts will always carry the pain of losing our precious, beautiful baby girl. Our souls long for the day when we will be reunited with her in heaven. Until then, Olivia will forever live in our hearts and minds as the most beautiful little girl to ever touch this earth. As our family has learned, Childhood Cancer does not discriminate. It is the number one disease killer of children in the world. Olivia fought this horrible, viscous and cruel disease with everything she had and lived her entire life full of courage, laughter and much love. As her mama, I made her many promises. I told her I would make the boo-boo go away. I told her to keep fighting and mama was going to make it all better. Unfortunately, despite my hardest attempts, I did not succeed. But I will not stop fighting for her until survival rates improve, better treatment options are available and one day, a cure is found. We, as a family, are determined to carry on in her name and press on for other children facing this gruesome disease and help find a cure for brain tumors.
We thank you for your love and support.