Pregnancy should be a time of joy and anticipation, but for Erika and Stephen Jones it is a time that is also laden with heartbreak. At just eighteen weeks into her pregnancy, the Joneses learned that little Abigail had Down’s syndrome. This would be difficult enough for any parent, but at her week 30 ultrasound it was revealed that Abigail also had an inoperable brain tumor that made it likely that the little girl would not see her first birthday. Going forward with the pregnancy, the Jones family welcomed Abigail into the world on August 6th, and then followed the advice of their neurosurgeon to take her home and cover her in love.
Cancer is the second leading cause of death in children aged one to fourteen, with forms of leukemia and brain cancer comprising 56 percent of all childhood cancers. It is estimated that over ten thousand children will be diagnosed with cancer this year alone. Survivability is over 80 percent after five years (for 2004-2010, the most recent sampling available), but that depends on the type of cancer, stage of cancer at diagnosis, and other factors. While survival rates, treatment, and even diagnostics have improved, the facts of cancer in children remain harsh:
- One in eight children diagnosed with cancer will not survive five years after diagnosis.
- 43 children will receive a diagnosis of cancer every day.
- There are 40,000 children in treatment for childhood cancers every year.
- There are only three drugs that have been approved for treatment of cancer in children – asparaginase Erwinia chrysanthemi, clofarabine and dinutuximab.
September is Childhood Cancer Awareness Month, and there are so many ways for you to help raise awareness of childhood cancers, and advocate for better and more effective treatments specifically for children. Children need not only access to medical care, such as they can receive under the Affordable Care Act or Medicare, but to treatments especially for them instead of off-label adult treatments or clinical trials in an effort to obtain state of the art care for the most difficult cancers. Children are not miniature adults, but have their own special needs in terms of diagnosis, treatment, and support.
Little Abigail is defying the odds every day. Unable to begin chemotherapy due to her age, her parents took her home and established pediatric hospice care. As they ready for Abigail’s journey, they and their older daughter are spending as much time as they can with her. Nobody knows why Abigail developed this life-threatening, untreatable cancer before she was even born. The idea that this beautiful life will pass before even properly starting is one that should give everyone pause to reflect. Maybe we need to learn to defy the odds, and take up the cause of these little patients against a pharmaceutical industry and regulatory atmosphere that expends attention and resources on the vastly more profitable adult cancer treatments. These children and their families need better options, so let’s fight for them.