Oct 24, 2014 Latest post:
May 30, 2019
Welcome to Sarah's CaringBridge site. We've created it to keep friends and family updated and to organize efforts to help out. Please note that the "Tribute Donations" mentioned on this site are donations to the CaringBridge organization, not to our family. CaringBridge makes this site available for free, which is a great service and worthy of support, but we want to be clear about where those donations go. We appreciate your support and your jokes and all that you have done for us along the way.
Sarah was diagnosed with a brain tumor on October 17, 2014. It is a diffuse intrinsic pontine glioma (DIPG), and the survival rate beyond two years is very, very low. It is only seen in children, most commonly between the ages of 5 and 10 years of age. Because of its location in the base of the brain at the brainstem, it affects basic life functions such as breathing, heart rate and balance. It also inhibits the flow of nerve impulses and cerebral spinal fluid out of the brain. Radiation can cause the tumor to shrink and stop growing for a time, but it will begin to grow again at some time in the future. Steroids are given to fight the inflammation that occurs with the tumor and clinical trials are under way to try to find ways to make the tumor more susceptible to the radiation. Genetic therapies could hold promise for the future as well. For Sarah we must do the best we can with the time we have with her.
Sarah died on April 3, 2016. The search for effective treatment continues. We will do our best to keep her memory alive and learn to dance with a limp.