Meet Evan, an 8 year old DIPG warrior.

When Evan started demonstrating balance and speech difficulties accompanied by headaches and lethargy, his parents took notice. They took him to the pediatrician who advised them to take him to the emergency room. An on call doctor told the family that night that Evan had a brain tumor, but couldn’t give any other information. The next day, Evan was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. “We were told he had about nine months to live.” 

Treatment started immediately and to date, Evan has undergone three separate rounds of brain stem radiation, participated in two clinical trials and had a brain biopsy. 

Evan loves legos and baseball, reading and spending time with friends and family. “”We are extremely grateful that Evan has responded so well to radiation. He is almost three years post diagnosis, which is not common. Evan was able to go back to school and play sports for over two years. This past fall, he started having increasing symptoms and is now on hospice care.” 

Currently, Evan is stable but on hospice care. He is no longer able to walk, communicate well or eat solid foods. 

UPDATE: On June 10, 2022, Evan passed away. 

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Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month and May 17 is DIPG Awareness Day.