Honored Kid

Thomas I.

Age 14
Thomas I. Kid Photo

Location

West Nyack , NY, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

March 2013

Status

In maintenance

Treated At

Morgan Stanley Children’s Hospital, New York-Presbyterian

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My Story

In late 2012, Thomas was taken to a pediatric neurologist, due to an unstable walk and slurred speech. The initial diagnosis was that Thomas had "cerebellar ataxia," but an MRI was ordered to follow-up on his symptoms and possible cause. Thomas went in for an MRI in early 2013 and it showed that he had a tumor in the brainstem, and a biopsy would need to be performed to identify the type and grade. The biopsy was generally successful, but the disruption in the brain and brain tissue caused Thomas to lose balance and stability. As a result, Thomas could no longer walk on his own, and furthermore, his speech and fine motor skills were disrupted. In a single day, Thomas went from talking & walking (although a bit unsteady), to handicapped and unable to walk at all. The biopsy confirmed that Thomas had a pilocytic astrocytoma brainstem tumor. The tumor was about the size of a golfball, and appeared to be slow growing. Surgery was not a feasible option, due to the center-location of the tumor, and radiation was not recommended, as doing so could cause more harm than good, on a still young & developing brain of a 3-year-old. So the course of treatment was chemotherapy, and the slow-growing nature of the tumor would allow treatment to be less aggressive. Treatment would be once a week for 60-weeks, beginning April 1, 2013, with the final treatment was on July 4, 2014. Thomas responded very well to the treatment. During that period, and with the exception of just the first day, he never got sick, and didn’t really lose any hair. His appetite was equally strong during this time. More importantly, Thomas was never upset or unhappy. Throughout this trying time, he was always determined and focused on not giving up. He probably didn’t understand the full scope of his illness, but he did know that he was going to the hospital every week to get medicine that would make him better. He understood that his friends could walk and run, but that he could not. But none-the-less, every day and every opportunity he had, he would get up and try to walk. It didn't matter if Mom, Dad, or big brother Matt wanted to relax! He is motivated and NEVER gives up. Throughout his treatment, Thomas also began receiving therapy for his “handicaps”. He initially began with home therapy for physical, occupational and speech. And, later, he also started therapy at Blythedale Children’s Hospital. He had a FULL weekly schedule… 9-12 sessions weekly of therapy, combining home & Blythedale. Progress was very slow, and as we neared conclusion of his chemo, that’s when Thomas started showing some signs of improvement in his walking and talking. Now, with chemotherapy concluded, the tumor showed about a 10% decrease in size… certainly a lot less than expected, but without doubt better results than anyone can hope for. Thomas still can’t walk on his own, and still has slurred speech… to the point that he gets very upset when he talks and we can’t understand him. He still has a lot of challenges ahead of him in life. Therapy will likely continue for years to come. Thomas began aquatherapy this summer. There is also a hope for hippotherapy and robotic therapy, each with its own strengths & weaknesses. Kindergarten is set to begin in September 2014 at Jesse Kaplan school. The aquatherapy shows a lot of promise, and Jesse Kaplan will hopefully allow him to mingle and play on a regular basis with other kids his age. As is obvious, the damage done is not small, and repair will take a long time. BUT… his determination is there, his strength is there, and the support of all his family & friends is there. Combined with love and prayer, he will one day walk again, and be healthy again. The Ippolito Family is thankful and blessed with the support, love and prayers for Thomas, Strong & Determined!

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