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Aidan’s 1st day at Preschool (Happy Heart) – 1 month before his diagnosis

In late summer of 2013, Aidan was a happy and healthy 3-year old little boy. He was getting ready to start pre-school and playing on his first soccer team for the local recreational league. He loved pre-school, couldn’t wait to go each day (although leaving mom was tough at times) and he looked forward to his soccer practices and games. 

That all changed in October 2013
. One month prior to Aidan turning 4 years old, he was diagnosed with an incurable and inoperable brain stem tumor, Diffuse Intrinsic Pontine Glioma (DIPG). We learned that chemotherapy was ineffective with this tumor & without radiation therapy, Aidan would only have a few weeks to live. He courageously completed 30 days of radiation at CHOP (and because of his age, this also required Aidan to go under anesthia all 30 days); as a result there tumor reduction, but doctors made it clear this was NOT a cure & the tumor would return aggressively.  CHOP doctors told us to enjoy “the honeymoon period” with Aidan after radiation because once it starts to grow again, it will be fast.  We were not ready to give up so easily.  In January 2014, we explored our options…With very few clinical trials, we enrolled Aidan in a clinical study that began two years prior in Pittsburgh, PA.

In May 2014, as we suspected, Aidan’s tumor began to grow again.  He required emergency brain surgery to place a shunt in order to extend his life.  Due to the steroids and tumor progression, Aidan was no longer Aidan Lighthouseeligible for the Pittsburgh clinical study. Unfortunately, this left us with NO options – trial drugs wouldn’t be safe to administer to Aidan based on his current state and the Doctors told us there was no more they could do to help him. We knew what was most important to us and that was to bring Aidan home, his most favorite place, where we could surround him with Love, Laughter, & Joy.  

Aidan was a joyful, loving, and very healthy 4 year old little boy up until diagnosis. There are no known causes or cure for this devastating tumor.   

In August 2014, a very short 10 months after diagnosis, Aidan gained his wings peacefully at home surrounded by his loving family. He will be forever missed.


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