Mary has a DIPG brain tumor. Because of its location in the brain stem, it is considered terminal. No cure has ever been developed for the 300 to 400 children diagnosed every year in the United States. The average life span for this tumor is 11 months. For over a year, Mary has been enrolled in a clinical trial that is being conducted at Stanford in California. It is the most promising therapy we have seen yet. In fact, in March 2021, when Mary arrived from Colorado for her first treatment, she was unable to walk unassisted without falling. Since then, Mary walks, dances, and plays on her own. This is not only promising, it’s very exciting!
The Stanford medical and research teams, using an Ommaya Catheter, are infusing CAR T-cells (Chimeric Antigen Receptor T Cells) directly into her brain stem tumor. The T-cells target the GD protein that is found in the DIPG tumors and kill the tumor cells. Mary, diagnosed two years ago, is the first to achieve 13 infusions in the Stanford CAR T-cell Clinical Trial. With each infusion, she has had improved functions. Overall, her tumor volume has decreased but has stalled in the last few months and a minimal spot of new growth was found in her cerebellum. A decision has been made to increase future infusions after she has been re-radiated to give the Car-t cells the best environment to continue to fight. Radiation is complete and going forward, the number of CAR T-cells will be increased from 30 million to 50 million. As the T-cells attack the tumor, the process causes varying degrees of inflammation that has to be controlled, therefore Mary is monitored for several days after each treatment inpatient before being released to outpatient treatment for about a week before finally being able to travel back home to Colorado. By increasing the CAR T-cells as planned to sufficiently reduce her tumor, Mary will require more on site observation than normal to monitor the inflammatory response and any other side effects that could occur during the monthly infusions.
While the treatments are paid for by a combination of NCI program grants, the family’s insurance, plus the support of several charitable organizations, insurance will not cover travel and lodging expenses. Travel and lodging expenses from Colorado to Stanford and back home occur with each and every treatment. It has been difficult to cover these expenses in the past due to the distance from home and the duration of the stays. An extra burden is coming soon with the increase in observation time meaning lodging and other expenses could almost double.
DIPG will not wait and neither can Mary. Please consider helping with transportation and lodging for Mary while she is in California fighting DIPG. Your tax deductible donation towards travel expenses for Mary will be handled by Arms Wide Open Childhood Cancer Foundation (a 501(c)(3) non-profit organization).
Thank you for your consideration,