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Remarks by Anna O'Connor - Main Speaker 2006 Walkathon
Hi. My name is Anna O'Connor. I just turned 21 and am finishing my Junior
year in College. I have been in continuous treatment for cancer for almost
four years.
First, I want to thank all of you for coming out [on a day like
today] to raise money for cancer research. Your dedication to finding a cure
is just amazing. I also want to thank the organizers of this event for
working so hard to make this day happen. Let me also thank you for inviting
me to share some of my story with you.
The average age of someone
diagnosed with neuroblastoma is around two years old; there are only a
handful of people my age with this disease. I'm "one in a gazillion." I
wanted to come to this event in order to give voice to all the beautiful
infants and little children suffering from this disease. I'll represent all
the children still fighting against this monster by, first, giving you a
glimpse of what it is like to be in constant treatment, and convey to you
why your efforts today are so important.
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When I was 17, during the summer
between my junior and senior years of High School, I was diagnosed with
Stage IV, High Risk Neuroblastoma.
I had just gotten back from a missions
trip to the Dominican Republic when I noticed an odd bulge just below my rib
cage. One day I asked my grandfather, who is a doctor, what he thought. He
discovered a large mass in my abdomen and quickly sent me for scans and
surgery.
Four days later, on July 4, I found out that I had cancer. For
most kids, by the time they are diagnosed with Neuroblastoma, it has already
spread throughout their bodies. In my case, in addition to a tumor the size
of a cantaloupe, they found cancer in my lymph nodes and bones.
I
immediately began treatment at Children's Memorial Hospital in Chicago,
about an hours drive from my house. For the next six months I had seven
rounds of chemotherapy and spent most of that time in the hospital either to
get chemo or to recover from infections and complications from chemo. Right
after Christmas of my senior year, I had surgery to remove the main tumor.
In spite of all the strong chemo I'd taken, my tumor had not gotten any
smaller. Hundreds and hundreds of people were praying for us and after over
12 hours she was able to take out 85% of the tumor. After that, I had 42
rounds of radiation to my abdomen. Still, my body was still full of
cancer.
Life before cancer was completely different than now. I had been
active in music, sports, drama and advanced classes. I had made lots of
friends and was poised to have a great year. Needless to say, my senior year
of high school was not the time of my life. I was still able to go to class
now and then - for a grand total of ten days the entire year, but had to
finish three classes at home with a tutor in order to graduate. Those
classes were Government, Consumer Ed, and, my personal favorite, Health.
Even when I was not in the hospital, I felt pretty awful all the time. The
chemo and radiation made me very sick; I lost about 40 pounds and all my
hair. It was very difficult to look in the mirror and see someone so
completely different than who I had been. Not only was my hair gone, but my
body had taken such a beating that I hardly recognized it. The tube sticking
out of my chest was a constant reminder that I had this really awful
disease.
Since the standard treatment that I received that year didn't get
rid of the cancer, I've forced to turn to experimental treatments. The first
clinical trial I tried was high-dose MIBG radiation treatment at Children's
Hospital of Philadelphia. For this treatment, radiation was injected
directly into my body. This made me so radioactive I couldn't have visitors
for a week; even the nurses wouldn't come into my room. The walls, floors,
and everything else in the room were completely covered in plastic to
protect them from the radiation emitted from my body.
I'll never forget
the radiologist coming into the room wearing a full-body protective suit
complete with boots, gloves, and a breathing mask, pushing a cart with a
thick lead container that held the syringe. The radiologist was being so
careful coming into the room; everything was plastered with radiation
warning labels. I thought, "All these precautions and warnings about the
dangers of a little spill, and you're planning to inject that into me?"
The next experimental treatment we tried was here at Sloan Kettering. This
time, the doctors injected me with Neuroblastoma anti-bodies taken from
infected mice. The treatment took two weeks to complete and caused some of
the worst pain I have ever experienced. This time I improved slightly, but I
developed a reaction to the mouse antibodies so I couldn't continue this
trial.
It was during this treatment that I met Carl. Carl was about the
cutest three year-old I'd ever met. He came to be one of my best friends.
Each morning before treatment began he would eat his McDonald's breakfast
and then crawl into my bed and we would goof around and play with his trucks
and toys. With so many tubes and lines sticking out of us, it would take the
nurses a while to get us untangled to give us the medicine. Carl loved life;
he wouldn't let his disease slow him down. He died from neuroblastoma about
a year and a half ago.
After anti-body treatment, I was able to get on an
experimental chemo from Abbott labs called ABT-751. This was a newly
developed pill I could take and still attend classes. While on ABT, the
disease remained stable for a year-and-a-half. In January of this year, the
disease spread to my arms so I started yet another clinical trial, but then
in March it progressed again. On Monday, I'll be starting my fifth clinical
trial, hoping once again to stop the spread of the cancer.
I wanted to tell you about all these experimental treatments because the money you raise
today provides crucial support for the research behind them. The hope of
these wonderful doctors is a cure; they are dedicated to a future where no
child has to undergo such brutal treatments. That's what we are all praying
and hoping for. In the meantime, as my oncologist recently wrote: "The
standard of care of a patient, like Anna... is a Phase I clinical trial."
This means that the money you raise is not only hope for the future, but for
so many of us it means life today.
So thank you so much again for working
so hard to raise this money and taking time to come out for the walk today.
Even on treatment, I've been able to enjoy so much these past couple of
years; thanks for helping make this all possible for me.
God bless and have
a fun day.
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