“I want to be 7!” (The Story of Taylor Mouzakes)

By John Accardo

My wife and I first met little Taylor Mouzakes and his Mom & Dad; Melanie and Bob, in the late spring of 2005. We were at the pediatric oncology clinic at Stony Brook for a routine between-chemo check of our daughter Jennifer. Taylor’s clinic nurse Lori was also Jen’s nurse and introduced us. Though only five at the time Taylor had already been through more hell than any child should ever face. At age 2-1/2 Taylor was diagnosed with a Brain-stem Glioma; a pediatric cancer with no cure. Needless to say the prognosis was not good and mom and dad faced a very difficult decision; to opt for conventional treatments that offered little hope or to seek an alternative protocol in the hope of giving their son a chance at life.

Because Taylor’s diagnosis was incurable with traditional cancer treatment protocols, he was eligible, by the FDA, for experimental treatment. The Burzynski clinic in Houston, TX offered an alternative and hope that was not forthcoming from the traditional medical community. With much soul searching Melanie and Bob made the decision to take Taylor to Houston. Though crushingly expensive, the treatments had a positive effect, Taylor was alive and well and most importantly the cancer was in remission. Taylor spent 3 years on the Burzynski protocol and while the tumor itself did not shrink, there was no evidence of cancer. Because of this the FDA would no longer allow the treatment to continue. 

Taylor like any child of his age loved many things; especially monkeys, YuGiOh cards, and playing Uno. He was also very talented at puzzles. For his 6^th birthday one of his presents was a mechanical robot with a particularly complicated remote control. The instructions stated “for ages 7 and up” to which Taylor said “I want to be 7”, something he repeated often.

By then though, 6 months after the FDA had stopped Taylor’s treatment, the cancer returned, and as it so often does, it was no longer responsive to the original treatment. Now the only recourse was traditional medical protocols of chemo or radiation. Facilities that would treat Taylor’s condition were limited. He entered treatment at Stony Brook which led to our encounter at the clinic and became an enduring friendship. We were often “neighbors” in the oncology unit; Jennifer made Taylor YuGiOh buttons, and Bob donated platelets when Jen was in need. Taylor received radiation treatments which had some effect on shrinking his tumor but cancer of children is ruthless and unyielding, especially in relapse. On May 18 2006 Taylor became an angel, 3 months shy of “Being 7”

On November 27, 2012 The St Baldrick’s foundation announced an extended scholar award of $195,463 to Oren Becher, M.D. of Duke University Medical Center. Dr. Becher’s AmWINS Scholar project is focused on brainstem glioma, “a rare subtype of brain tumor found mostly in children, which cannot be cured with today’s treatments”. Yes, St Baldrick’s is funding research into the very disease that took Taylors life at the tender age of six. Childhood cancers come in many variations, some of them are treatable but many are not. All of today’s treatments are debilitating and leave long term after effects for those who are lucky enough to survive. Your support of St Baldrick’s will help fund this much needed research to find cures and improve treatments so that “Being 7” isn’t an option but a reality.