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When I became a recruiter in the Blood Donor Center at Children's Hospital Boston, I knew that this was my chance to give back to the place that allowed me to live to adulthood. If I had been born somewhere else or at a different time, I would not be here today, able to share my story with others who might feel desperate or hopeless or feel that they will never be normal.
When I was 18 months old, I began having vomiting spells in the middle of the night; they became so violent that I was throwing up blood. My parents took me to a local emergency room, where they were told I had reflux. When the medication I was given didn't work, my mom took me to my pediatrician, who thought it might be a metabolic disorder, but the tests came back negative. So I was tested for muscular dystrophy, Meniere's disease, cystic fibrosis and countless other disorders. All the tests came back negative. My pediatrician sent us to a neurologist for a CT scan, which, yet again, showed nothing. I saw specialist after specialist and had scans, EEGs, sweat tests—even something called sterile bladder aspiration—but got no answers.
Things began to get worse. I'd have spells where I would scream for hours at the slightest noise. Just the sound of acorns falling onto the skylights of our house would cause me to have screaming tantrums. My mother started to wonder if I had a mental disorder. But the physical signs were becoming too great for it to have been strictly a psychological issue: My hands went limp, and when I walked, I would fall down or stumble. It would be another year before I would receive a diagnosis.
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MRIs were still fairly new in 1988, and I was sent to one of the few hospitals that offered them. After the visit, we were referred to Children's to see Michael Scott, MD, who is now head of Neurosurgery. He told us that the scan revealed something serious: I had an astrocytoma, which is a type of brain tumor, located on my brain stem, which controls motor functions and regulates blood pressure and breathing. The tentacle-like structures of the tumor were, in essence, cutting off my lifeline. He told my parents there were no guarantees that surgery would be a cure, but my parents decided to do it: the life I'd live without it was too harrowing.
Before the surgery, a good family friend donated blood for me at Children's, and only now do I understand how important it was that that blood was there in case I needed it. On April 18, 1988, my parents' wedding anniversary, I went into the operating room, and emerged eight hours later. My mother describes me as looking like a boxer who had just lost a fight, but it didn't matter: The tumor wasn't malignant. And while not all of it was removed, it looked like I would recover. I began physical therapy the next day, and began to get stronger. Two months later, I turned 4 years old. At last, I was able to begin my life.
Over the years, I continued to have follow-ups with Dr. Scott and there were no signs of the tumor growing. A few years ago, he gave me the happy news that there was no longer even a trace of the tumor. I like to say that my brain ate it. This year, I turned 24, and in April, I celebrated the 20th anniversary of my surgery. The day I was discharged by Dr. Scott was bittersweet: On the one hand, I was so grateful for my health; on the other, I knew how much I'd miss having him be such a big part of my life.
Today, I have slight nerve damage in the extremities on my left side, but nothing that's unmanageable. I also live with chronic kidney disease, which is unrelated to the brain tumor. But knowing how much I went through at such a young age gives me confidence in my own resiliency. I know that I have this unexplainable but incredible ability to defy the odds.
I love being a part of Children's, not just for the difference it's made in my life, but also for the difference I see it making each and every day in other children's lives. As a part of the Blood Donor Center, I come into contact with many families and children, some of whom are patients of Dr. Scott. For them in particular, I think I represent something very special: hope. Some days, when I walk through the hospital's revolving doors, I'm overwhelmed with what I see. For me, I don't just see patients; I see myself.
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