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The diagnosis and prognosis crushed us. We could
not understand why our little girl had this mean and evil monster
growing in her head. We kept asking ourselves, “How long has it been
there?” and “Why us?” and “What did we do wrong?” We started to
think about the signs which probably existed as far back as
September of 2006. It started out with Sophie waking up three and
four times a night, sometimes crying in her sleep, sometimes
laughing, or talking and recalling past events. She would sometimes
tell us her head felt “wobbly.” We just thought she was overly
tired. Then there was the anxiety. She was great for her first day
of pre-school, not a single tear, but as the school year progressed,
she was more and more anxious. We talked to friends and family, and
our doctor who all convinced us that it was just a “phase.” In
January, we noticed her coordination was a little off. She had a
gymnastics recital and Marc almost cried as she struggled through
it. He remembers thinking that Sophie could do somersaults when she
was 2 years old, but could not do a single one at the recital. We
chalked this up to anxiety or a growth spurt.
In February, we noticed her coordination getting worse and then out
of nowhere she started to vomit every other morning for about 10
days; again, we had a logical reason. This time we thought it was
just sinus drainage because she had no other symptoms. Looking back
we realized that she also started taking naps again in the fall,
which she had not done since early spring. At the time, we figured
this tiredness was due to the new routine of starting school and
participating in more activities. She refused to race Marc up the
stairs to take a tub. Instead of running (she was always running)
she now wanted to be carried. On Saturday, February 17, we had
family pictures taken and noticed that Sophie could not smile. The
right side of her face was basically frozen. In hindsight we
realized these were all symptoms, however, 99% of her days appeared
normal and were filled with the day-to-day activities of a typical
three-year-old. Life was good and happy for the four of us in Avon
Lake, Ohio.
On Tuesday, February 20, Sophie vomited in the morning, but assured
us that she felt well enough to go to preschool. After picking
Sophie up from school and being told by Sophie’s teacher that
“Sophie seemed a little off today,” we knew something was wrong. We
called the doctor, and got an appointment for that afternoon. As
Sophie slept, I searched the internet for a possible reason for her
symptoms. Before the appointment, I was 99% sure that a brain tumor
was the cause, and called Marc to tell him, and request that he come
home from work to go to the appointment. We talked about what this
might mean...how she would lose her hair, have brain surgery, and
maybe lose some parts of her brain function. This scared us to
death, but nothing prepared us for the words, “inoperable” or
“terminal.” We were sent from the pediatrician, who told us he was
“very concerned,” to the emergency room at Cleveland Rainbow Babies
and Children’s Hospital for a CT scan. That evening the scan showed
an “ill- defined” mass and an MRI the next morning confirmed the
diagnosis.
We cried and cried and hugged and hugged. Again, wondering what we
did wrong and asking the question over and over, “How could we be so
unlucky?” and most importantly, “What did Sophie ever do to deserve
this?”
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