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I'm 26 and have been married to my husband for 3 years. I have an 8 year old step daughter that I love like she is my own. We have been trying to add to our family but my body just does not want to cooperate. I also have a physical disability and a medical history that could probably cover the length of a football field. This is the story of my struggles in the past, present, and hopes for the future.

Thursday, March 29, 2012

My History: "Gifts of Time"

**Please read this before "The Aftermath" for some reason this posted second.

It all began when I was 3, almost 4 years old.  I would scream and cry in the middle of the night to my mom and dad because my back hurt.  I have vivid memories of my mom trying to rock me to sleep in our old wooden rocking chair.  It became a nightly event. My parents knew there was something seriously wrong.  And so began my fear of needles.  I was poked and prodded over and over and over.  Each time the results came back normal.  What was causing this severe pain?  After numerous tests, the doctor's stopped testing one test too short.  Their diagnosis, night terrors and wanting attention.  My parents knew that this was not the case.   Now that I am an adult and a stepmom, I can't imagine being my parents and know that your child has been misdiagnosed. 

One night, I remember laying on the bottom bunk of the bunk beds that I shared with my sister.  I was in my pj's (which was a long, oversized t-shirt) with no socks on, waiting for my mom and dad to come tuck us in for the night.  It's a blurred memory but I do remember bits and pieces.  My mom looked at my right foot with a horrible look on her face and said, "Brian, look at her right foot.  It's curving."  Even though I was little, I knew just by the panicked look on their faces that something was terribly wrong.  The next few weeks I was at the doctor again, a different one, being poked and prodded all over again.  This time it was different.  They would schedule an MRI and find what changed my life forever.

The second opion was the way to go.  The MRI showed a spinal cord tumor that was inside my spinal cord.  According to the doctors, this was a rare tumor.  Their words, "she had a better odds of winning the New York lottery than having this type of tumor."  By this time I was about 5 years old.  I remember sitting with my parents as they cried when they heard the news.  I wasn't quite sure what was going on and didn't know what it meant but knew that I was in for more needles.  I was referred so a neurosurgeon here in St. Louis and would be scheduled for surgery to remove it immediately.  At this point, they have no idea whether or not if it was cancerous.  Only the surgery would tell.

Everything was a blur from that point on until after at a meeting with the doctor who operated.  He had to stop mid surgery for fear of paralyzing me.  One positive was the tumor was bengin.  I would later find out that this also would hinder my chances of getting rid of it so easily.  After the surgery I came out in a wheel chair and ended up having a small leg brace for the curvature of my foot.  I began walking on the side of my foot due to the tumor pressing on the cord and nerves.  I also began losing feeling in my foot and started having bowel and bladder problems.  At this point, he said he was too afraid to operate anymore.  He wasn't experienced enough.  In fact, no one in St. Louis was. 

That's when I met doctor Fred Epstein.  My second surgery on the tumor was done by him, one of the greatest tumor doctors in the world.  He was a pioneer in spinal cord tumor removal and the best.  I was flown to New York to meet with him and to be operated on.  It was like meeting a celebrity, but better.  He unfortunately could not get the entire tumor but got a good chunk of it.  I ended up in a wheel chair again with more loss of feeling in my right leg and again had to learn how to walk all over again.  "Serial" MRIs, as they called it, were done every 3 to 6 months to check on the tumor growth. And of course, it would grow.  At one point it reached the size of a golf ball.  He said that unfortunately since these types of tumors have a mind of their own, the benign ones tend to be a pain and grow back each time.  It was a fight I was forced to endure.

It was then determined that the growth was too much and it would need to be operated on again.  So began my second trip to New York.  I remember right before surgery I had brought the book my doctor had written.   "Gifts of Time" He signed it for me, "Thanks for making us both look good, Fred Epstein."  This would be my final operation on my tumor and my last time seeing Dr. Epstein.  He successfully removed the entire tumor and all that was left was residue.  Again, I was left in a wheel chair, now have no feeling in my right leg from my thigh down, the bowel and bladder became significantly worse, and I needed to learn to walk again.  By now I was about 8 years old.

Due to the fact that the tumor continued to grow, they decided that I would need radiation.  I began receiving 28 doses of radiation treatment, my lifetime max.  I would have to leave school in the middle of the day to be picked up by a random church friend of my moms.  She had missed enough work over the years and it was easier for someone to bring me to her work for her to take me than to miss an extra hour back tracking to get me.  When we got to the hospital we would wait in the waiting room.  I was always the youngest person there.  They would take me back and position me on the table face down and make sure the laser was lined up perfectly.  I was then locked in a room entirely by myself behind a massive vault door, similar to the kind you would see at a bank.  I suffered from hot flashes, naseausa, diarrhea, you name it.  Sometimes I would use this to my advantage ;).  Because, ya know, you can't question a child who is going through radiation treatment.

The radiation treatment worked and my tumor journey was over.  I was left with the aftermath of the damage that tumor and radiation left on my body.  Little did I realize this would be a harder fight than the tumor itself.
Surgery #1

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