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Michael Kelly

  • Neuroblastoma

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Michael is a loving, funny boy who loves super heroes, Disney and video games. He enjoys playing soccer and basketball with his friends and spending time at the beach in Ocean City, NJ. 

At 22-months-old, Michael began having eye spasms and muscle tremors. As Michael's gross motor skills were slightly delayed, he had just learned to walk unassisted, but within a few weeks began to lose his balance. His pediatrician diagnosed Michael with an ear infection and was sent to an eye doctor. However, over the course of the next two weeks, Michael completely lost his ability to walk and could barely support himself in a sitting position. His family arrived at Children’s Hospital of Philadelphia (CHOP) on a Friday afternoon in September 2006 and by Friday night received the diagnosis: opsoclonus myoclonus syndrome–a rare neurological condition likely caused by a neuroblastoma tumor. Dr. John Maris, a consultant on Michael’s case, believed that Michael's developmental delays were, in fact, caused by the presence of a neuroblastoma tumor. In Michael's case, his body's immune system found a way to attack the tumor, but in doing so, also attacked the fluid around his brain, which is what caused the eye (myoclonus) and body (opsoclonus) tremors and overall physical and mental delays.  

Michael underwent immediate treatment with IVig and ACTH, a steroid that helped stop the eye spasms and body tremors. From October 2006 to January 2007, Michael participated in a clinical trial in Springfield, IL. He underwent several spinal taps and for one month, underwent weekly treatments of ACTH injections and chemotherapy. By 2007, Michael began receiving his IVig and chemotherapy treatments at the Alex Scott Day Hospital at CHOP. He continued those treatments until 2009 and is still followed by Dr. Angela Waanders, a CHOP oncologist who specializes in OMS. 

Michael has made tremendous progress since his diagnosis. His family hopes for Michael to continue to grow, learn and become self-sufficient. Mostly, they just want him to be happy and healthy! Michael is a hero because he works so hard and never complains. He is the most lovable, caring, compassionate little boy his mother Nicole knows. He's been through so much and has just blossomed into this beautiful pre-teen who continues to amaze his family every day. 

Nicole wants others, who may have recently received a cancer diagnosis, to know that there is always, always hope. In Michael's case, he was fortunate that his body found a way to eradicate the neuroblastoma tumor. But that's not to say it didn't leave its damage behind. When Michael was first diagnosed with OMS, his family was told his case was severe and that he would probably not be able to read past a certain level and he may never walk properly. Today, Michael can read, write, work on a computer, run, walk on a balance beam, dribble and make a basket! “Always stay positive. Never give up. The best treatment they can receive is the love we give them,” says Nicole. 

Nicole feels fortunate that after Michael's clinical trial in Illinois, he was able to receive his treatments at CHOP. “Our first few visits for chemotherapy were--to be honest–depressing,” says Nicole. “Then, the Alex Scott Day Hospital opened and the kids were treated like rock stars! They had their own private cubicle, a television, a fully-stocked snack room, an arts and crafts room. The transformation was amazing and it made such a difference. The nursing staff remained the same, but the room was somehow cheerier and made the day a little more bearable.”

Information provided by Nicole Kelly, Michael’s mother
Updated April 2017

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