Alexa's Story
written by mom Denise
Alexa Rachael was born January 26, 1999, on
her paternal grandmother's 71st birthday. It was the best birthday present
anybody could receive.
Being our first child, to say she was spoiled is an understatement. She was
the perfect baby in every way. Our life was very good up until the time of
Alexa's 5th birthday.
It was a Friday night. Alexa was upstairs playing in our bed, while I was
downstairs stuffing the goodie bags for her birthday party the next morning.
We heard a loud thump followed by silence. As Anthony and I were running up
the stairs, we heard the shrilling screams.
Although we saw no head trauma, Alexa was on the floor screaming and holding
her head. We automatically decided to take her to our local emergency room,
where they repeatedly assured us it was "just a concussion." After being
there, what seemed like forever, with a child that appeared to be sleeping
(even though I knew it was more than just sleeping), they finally took her
into the Cat scan machine. I was not allowed in the room with her because I
was nine weeks pregnant with her little brother.
The next three days from that point on were pure torture that no parent
should ever have to endure.
They saw a mass on the cat scan. She was immediately intubated because they
then realized, as I knew, that she was in a coma and not just sleeping. We
were then airlifted to Children's Hospital Los Angeles. Once we arrived, the
neurosurgeon told us words we still hear echoing in our head, "she might not
make it through the night."
They had no idea what was wrong with her except for the fact that she had
massive bleeding in her brain. After a series of tests that all came back
negative, they thought it must be a tumor and operated. This was 1/27/04,
her fist brain surgery.
What was thought to be a massive hemorrhage was actually a tumor. A blood
vessel within the tumor burst, thus causing the symptoms. Pathology came
back as Anaplastic Astrocytoma, a grade III cancer, which mainly occurs in
adults.
We then were put on a course of chemotherapy which made Alexa very ill. She
had to have a feeding tube put in because she got down to 30 pounds from
vomiting so much. After four rounds of chemo, Alexa then had a stem cell
transplant. We were in isolation for five weeks as Alexa received a year's
worth of chemo in six days. Her bone marrow would not be able to recover,
but for the infusion of her stem cells.
This treatment seemed to keep the aggressive cancer at bay for ten months.
In May of 2005, we found out the cancer had returned. Alexa then had her
second brain surgery and went through a course of seven weeks of radiation,
in which Alexa was put under anesthesia every single day for seven weeks
while they administered the radiation.
This, again, kept the cancer at bay for ten more months. In June of 2006, we
found out that the cancer had, again, returned. They believed it to be low
grade and not the high grade cancer that she had had in the past; so we were
able to travel during the summer.
Alexa then had her third eight-hour brain resection on 8/3/06. It was not
the low grade as anticipated, but the same grade III Anaplastic Astrocytoma.
She is now undergoing experimental chemotherapy and biological therapy since
more conventional methods have not worked.
Through all her surgeries and treatments, Alexa remains brave and strong.
She just wants to be a kid and play, and so she does. She truly is an
inspiration to all that meet her.
Abilities:
See: Yes.
Hear: Yes, but has bilateral high frequency hearing loss due to
chemotherapy.
Talk: Yes.
Walk: Yes.
Read: Yes, still learning!
Use hands: Yes.
Siblings:
brother Carson, age 3
Child's Interests:
Alexa likes Barbie's, Polly Pockets, American Girl Itty Bitty Babies,
puppies, especially her 1-year-old Bernese Mountain Dog, Koda, and her
9-year-old Golden Retriever, Jack. She also likes to watch
movies, go to Disneyland, everything Princess especially Ariel, anything
girly and going to
plays (musicals).
Sibling's Interests:
Carson likes trucks, cars, airplanes and boats.
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