TJ’s Story


“I’m thankful for all the nice people I’ve met since I got sick.”
Those were the words spoken by our son, TJ Reilly, at his last Thanksgiving in 2015. Despite his diagnosis of gliomatosis cerebri, he never stopped loving people & believing in the goodness of others. And he let that shine through in that last round of “I’m thankful for….”

TJ was 10 years old when we were handed this devastating diagnosis. Our local optometrist told us his optic disc was bulging and we needed to have it looked at. Three days later he was in the ER with an unrelenting headache. It was that day, August 17th, 2014, that we first heard the words “gliomatosis cerebri.” We were told there was nothing that could be done, that treatment was not effective for anything more than a 5% chance of having a couple extra months of life. But at what cost? We made the difficult decision to seek alternative therapies but with no doctors willing to accept a child into their care we were left going it alone.

During his last 16 ½ months on this Earth TJ continued to live life to the fullest. He persisted in his school work, went to dance & horse riding classes, and continued to draw every night in his sketchbook. But the best part was snuggling. Even at 10, 11, and 12 years old TJ was still an affectionate kid! His love had no end and he had no problem letting anyone see it.

During this time, we had so much help from our friends, family, and even strangers (and strangers who are now friends!) We couldn’t have done so much for TJ and made so many special memories without their support. From the big things like Make-A-Wish to the day trips to NYC, from the riding lessons to the Phillies tickets, to the meals and help with his Celebration of Life, we were surrounded by love and help on so many levels.
The tumor eventually invaded TJ’s brainstem & was pressing on his brain so aggressively that he spent his final days from December 26th, 2015 to January 9th, 2016 in two different ICU beds, on a vent, and ultimately on a morphine drip with family and friends singing him into heaven.

Our family believes that while TJ’s end was devastating and unbearably painful we cannot NOT pay it forward. We started a foundation in TJ’s memory and honor to help families battling childhood cancer. We struggled with what to call our small group. Should we have “TJ” in the name? Should it be “catchy”? We couldn’t decide. Finally, we came up with “Over the Moon”. Our family- for generations- has said “love you to the moon” even long before it was on every plaque in every store. It’s “our thing.” TJ always said, “I love you to the moon,” at bed time and I would say, “I love you to the moon and back.” Then he would say, “I love you to the Milky Way,” and so we would one up each other for several minutes. We know TJ is in heaven & is “over the moon” so we adopted that- Over the Moon- as our name. While we are small, our only mission is to make a big difference in as many kids’ lives as possible who are battling cancer.

We miss TJ but know he’s smiling as we strive to honor him and learn and lead by his example of love.

By Krissy Reily (TJ’s Mom)

ENROLL IN THE REGISTRY

The GC Registry aggregates data and tissue samples from patients around the world. Intensive study of these samples and data will help unlock the mysteries of this terrible tumor.

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COMMUNITY

Join the advocacy and become part of the community that was established to support groundbreaking research in finding a cure for Gliomatosis Cerebri. Partners are either family touched by Gliomatosis Cerebri or foundations supporting the same cause. Click below to learn how to join the community.

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