Thirteen-year-old TJ is not especially anxious about the Corona virus pandemic. Unfortunately, isolation, fear and uncertainty aren’t new to him. Since his diagnosis of leukemia four years ago, TJ spent a lot of time quarantined from the outside world in the hospital or at home, and his mom says he learned to be ok with the ups and downs, the good days and the bad.
TJ found out he had leukemia at the age of nine, on June 16, 2016, a day his mom Shannon calls “literally the worst day of my life.” Just six months earlier TJ learned he had type one juvenile diabetes. “Boy, was that one of my worst years,” he says.
The years that followed were definitely no easier. TJ says his doctors called him “a kid whose body literally hated chemo drugs,” as he got any and all side effect, some of them excruciatingly painful. Sometimes he was put on a morphine drip for weeks at a time to make the pain bearable. For four years, Trevor and his mom spent every birthday, holiday and summer in the hospital. Shannon was told she has PTSD from watching her son suffer and fight for his life so many times. “I watched my son go through things I wouldn’t wish on my own worst enemy.”
ECF began helping TJ and his family right after he was diagnosed. “As my mom says, that is the day our guardian angel Erin entered our lives.” ECF caseworker Erin offered more than just counseling for TJ and his mom. She became their emotional support system, a shoulder to cry on, a source of comfort and compassion during times Shannon said “she couldn’t even talk without crying.” Shannon is the main provider in her family and was not able to work over the past four years because of all the time spent caring for TJ. During that time, ECF helped pay their household bills, delivered monthly groceries, and brought them Thanksgiving and Christmas dinners. TJ went to ECF family events such as the holiday party, which his moms says gave him “a safe place to be around other kids just like him and a place to just be him.” She is grateful to ECF for “embracing us and including us in such a beautiful family.”
TJ unfortunately continues to deal with many chemo drug side effects, such as headaches and painful neuropathy in his legs. Nonetheless, “he continues to hold his head up high, even when he doesn’t want to,” says his mom. “And he continues to fight.” Though 13 year old Trevor was born in the 2000’s, his mom calls him “my 80’s kid.” He loves 80’s music and movies, as well as superheroes, comics and video games from any era. “If you know anything about his likes,” says his mom, “he can talk to you for hours.”
In February, TJ and his mom attended ECF’s Crystal Gala. His mom said they had “one of the most AWESOME nights EVER.” TJ confidently read a funny and moving speech to the crowd of 200 guests, including Erin their caseworker, who gave TJ a standing ovation along with the rest of the room. “I can sit here all night and continue to say all the ways ECF has helped me and my family, but then we wouldn’t get much dancing done tonight,” said TJ in his speech. “So in conclusion, I would like to thank ECF most of all for just allowing me to be a kid.”
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Central Regional Center
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Clark, NJ 07066
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Sr. Central Regional Director