Cancer. Never has a word been so hated by our family. It is a cruel disease that robs children of their innocence. In far too many cases, children lose their lives it.
Here is a link to a video we made of Sophia if you want to see her sweet self in action:
http://www.youtube.com/watch?v=t8M5FWjDDY8
Our sweet daughter, Sophia, was two-years-old when she began to get morning headaches. The morning headaches, vomiting, and loss of balance turned out to be the side effects of a very aggressive brain cancer: anaplastic medulloblastoma. It grew fast. We still have nightmares of her screaming in pain when the pressure in her head suddenly grew before her first brain surgery.
Due to the aggressiveness of her type of cancer, they started her on the toughest protocol she could handle. After recovering from her first brain surgery, she went through high dose chemotherapy, an additional exploratory brain surgery, and a triple tandem stem cell transplant. We practically lived in the hospital for six months. It hurt to see her suffering from the side effects of the treatments. She cried when her hair fell out. She felt terrified when she first got her vascular catheter implanted in her chest. The vomiting upset her. She ended up with a g tube in her stomach because she quit eating. She gave up drinking anything but water because she began to aspirate liquids. Despite the many difficult days and the occasional bout of sadness, her bright spirit never disappeared. She was known for telling the nurses to “please be careful” and “thank you.” We giggled on the days in the hospital when she would get up and dance. Sophia loved going to the playroom to pretend to cook and to do art projects. We lived for those happy moments when she would sing and laugh.
After she finished the first protocol, we enjoyed three happy treatment-free months. We lived our lives to the fullest, hoping that the chemotherapy had permanently destroyed the cancer. Then one day, Sophia suddenly started stumbling again. We were devastated to learn that the cancer had returned. Sophia went through two more brain surgeries, radiation therapy, and outpatient chemotherapy. Unfortunately, her cancer refused to be tamed by these treatments.
In October of 2008, the difficult decision was made to place Sophia into home hospice care. There were really no more effective treatments to try, not even experimental. She was tired and scared of the needle pokes and hospital visits. She felt safe at home. We did our best to keep her out of pain as we filled up her days with as many wonderful activities as possible. She never gave up on life, even after she lost her hearing. As the cancer grew, her face became paralyzed and she could no longer smile or open her eyes. She refused to give up, using her finger to open her eyelid so she could watch her videos and color. You could not help but to be inspired by her passion for life until the very end. After a 20-month fight with cancer, she passed away on February 3, 2009, in the arms of her mommy and daddy. She was only four-years-old.
Not a day goes by that our hearts do not ache for our baby. CURE Childhood Cancer is an organization that is helping to find a cure so that no more children will die from this terrible disease. We have personally seen this organization at work and we can say that the money you donate will make it to pediatric cancer research. In addition, we can also attest to the fact that pediatric cancer families are also helped directly by this organization in the form of hot meals at the hospital, holiday parties for the kids, grocery cards, and bereavement weekends. Please help us raise money so that they can continue their important fight.