The odds are against Lola Muñoz.
The 12 year old was diagnosed with diffuse intrinsic pontine glioma [7] on Aug. 26, 2016. The average prognosis for a person diagnosed with what is known as DIPG is only 9-12 months. The survival rate is zero.
Lola lives with her family on Fort Drum Army base in Watertown. Her dad serves in the military and before moving to New York two years ago, the family lived in Germany and Kentucky.
Parents Agustin and Melissa Muñoz could not settle on their daughter's treatment plan, weighing her quality of life against extending her days. So they gave Lola all the information from the doctors and let her decide for herself.
Knowing there is no cure, or no guaranteed ways to erase her tumor, Lola chose to ultimately help future DIPG patients.
DIPG results in the of about 300 children a year. Childhood cancer receives 4 percent of U.S. federal funding for cancer research and only 1 percent of this is directed to DIPG, according to the Michael Mosier Foundation [8].
There has been no progress towards new treatments or cures in several years. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago.
Lola is now the first patient to qualify for a clinical trial at St. Jude Children's Research Hospital [9] in Memphis, Tenn., that involves combining two oral chemotherapy medications to see if the child can withstand the side effects on the highest possible dose after receiving radiation. These two drugs are FDA approved but have never been used together for the regrowth of a brain stem tumor.
Lola's humor and ability to find positivity in the darkest of times is most admirable by her friends and family -- demonstrating time and time again the importance of hope and resilience.
Lola fights through the pain of "getting poked" in preparation for MRI. (Photo: Moriah Ratner)
