Beyond the Tumor: Fighting DIPG for 3+ Years

Weston Wiens is 5 ½ years old and was diagnosed with the horrible disease that is DIPG (Diffuse Intrinsic Pontine Glioma) on October 3, 2017. The average survival time after diagnosis is 9 months, yet Wes is still fighting 3 years later. Katie, Wes’s mother, says that it felt like her entire world was turned upside down when she received the news of his diagnosis. She now sees everyday as a blessing and she’s coping with DIPG by having a lot of family time. Since being impacted by DIPG, Katie wants others to know that there is no end date for treatment. “We live everyday not knowing what the next will bring,” said Katie. Others can show their support for someone affected by DIPG by just being there to listen when they need to talk.

Wes has tried several treatments so far including radiation, Avastin, Vorinostat and Palbociclib. Katie said that, “For three years Weston’s tumor was stable, while on Avastin, Vorinostat and Palbociclib.” Right now Weston is undergoing radiation again and they are hoping for good results because he responded well to the first round of radiation. February 3 was day 5 of radiation for Wes and he has gained more energy since starting radiation. He even went to school for an hour, which is great progress! What gives Katie hope is that, “One day this diagnosis won’t be a death sentence for our babies.” February 12th was Wes’ last day of radiation and each day he is feeling better. He is continuing to try to walk on his own, however his right side is still very weak. After radiation, he was fitted for AFO (ankle-foot orthosis) braces to support his foot and ankle, and had his second physical therapy session on the treadmill.

Katie, her husband, Weston, and his brother Brylen call Lakeville, Minnesota home. Wes loves to play outside and his favorite color is blue. He is a Disney lover, and especially loves Toy Story, Cars, and Star Wars! CRF will be staying connected with Wes and his family and will keep all of you updated on his journey. Full Steam Ahead, Weston!

By: Rhea Maladkar

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