Joshua Casten, Diffuse Intrinsic Pontine Glioma (DIPG)

15 Years Old at Diagnosis

Joshua CastenWhile in California visiting his great grandparents, Joshua began experiencing double vision, was lethargic, and had trouble staying steady on his feet. When his grandmother picked him up after the visit, he was feeling better and things went back to normal. A few weeks later, while visiting his mother, Joshua’s eyes began hurting a lot. His mother rushed him to the ER, where a CT scan and MRI were ordered. The results of the MRI were not good; doctors informed Joshua that he had Diffuse Intrinsic Pontine Glioma (DIPG) and that it was terminal.

DIPG is a brain tumor that is located in the middle of the brain stem, where the cerebrum connects with the spinal cord. DIPG tumors develop amidst the nerves of the brain stem, making surgical removal impossible. DIPG tumors often interfere with eye function, face and throat muscle control, and breathing.

Joshua was an active 15 year old when he was diagnosed with DIPG on August 9, 2012 and he started treatment right away. He was transferred to the nearby children’s hospital where Joshua began the battle of his life. Instead of accepting the terminal diagnosis, Joshua was determined to do something. He started 6 weeks of radiation and daily chemotherapy to try to control the tumor. He decided that he was Never Giving Up on new treatment options and a day when DIPG would not be a terminal diagnosis. He and his family reached out to doctors across the country in search of different treatment options.

Joshua now has Magnetic Resonance spectroscopy’s (MRS), a diagnostic test that measures changes in his tumor, every two months. Luckily it is currently unchanged. He has been experiencing some side-effects of chemotherapy, but even though he understands that his cancer is terminal, he is determined to enjoy living by doing the things that he loves, like spending time with family and fishing.

Joshua’s family remarks that he is wise beyond his years, often saying that he hopes that doctors can learn from his cancer to one-day create new treatment options for others like him. Joshua is never giving up on new treatments and a day when DIPG patients can look forward to a cure.

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