Alicia's Story
written by mom Marcia
Alicia was born January 14, 2004, weighing
6lbs 13oz. Alicia led a normal life growing and progressing what we thought
was normally. Unfortunately we had a general practice doctor that only saw
her four times her first year and would not see her again until school
started.
The first signs we started noticing, was that when she walked she had a
tendency to run into walls and fall down a lot. We would change her shoes
and she would get better for a while. Alicia would run a slight fever all
the time especially at night but wouldn’t be teething. We started noticing
that she would hold her head to the side when she walked, ate, watched TV,
etc...
At this same time she would play with her ear a lot more than usual and
would run a slight temp so we thought it was an ear infection. The doctor
could not find an ear infection but thought that she might be in the early
stages and would treat with an antibiotic. Alicia got better. This went on
for approximately 6 months. My husband and I decided it was time to swap to
a pediatrician, especially for the unexplained fevers.
The first time Alicia was seen by the pediatrician she was currently being
treated for an ear infection by the previous doctor. Same symptoms
presented, fever, head tilt, disoriented walk, and vomiting. The second time
Alicia was seen by the pediatrician was a month later on December 2, 2005,
the day after her little brother was born and the same day he was diagnosed
with a heart condition.
The pediatrician saw her for all the same symptoms but this time did not
treat for an ear infection. Instead she saw that Alicia's eyes were not
tracking and sent her to the local children’s hospital. It was there that
Alicia received her first CT scan to show that she had a rare brain tumor,
later known as a Pilomyxoid Astrocytoma. The emergency room doctors found
that Alicia had severe Hydrocephalus blocking her fourth ventricle and
preventing the spinal fluid from reaching her lower back. This was the
reason for her head tilting.
She has currently had two tumor surgeries, three shunt surgeries (for the
hydrocephalus), a port-a-cath, and a mickey button. Alicia spent
approximately 3 months in the hospital with complications from shunt, fever,
and weight issues. Alicia is now at 50 percent of her growth chart weight
and doing well. She is currently on a chemo regimen of
Carboplatin/Vincristine. She has been on chemo since January 2006. We have
suspended the Vincristine due to complications of neuropathy to the extent
that Alicia could not walk and all of her motor skills were at a diminished
capacity.
Alicia attends chemo every Thursday for four weeks and then she has a two
week break. She also receives physical therapy once a week and occupational
therapy once a month. We are working on getting Alicia speech therapy and
help for the transitioning into preschool.
I, Alicia’s mother, have not been back to work to stay home with both of my
ill children due to the fact that no one knows just how much time any of us
have and our time is so much more precious now than before.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Not yet.
Use hands: Yes.
Siblings:
brother Ray, age 2
Child's Interests:
Alicia loves bubbles and she is starting to get into that pretend phase.
Alicia's favorite hobby is watching movies especially when not feeling well.
She watches just about any cartoon movie. Her favorites are Mickey Mouse,
Winnie The Pooh, and Elmo as well as any Disney type movies that come out.
Sibling's Interests:
Ray is interested in anything he can chew on and anything that is
interactive (makes noise).
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