Katie Rose's Story
written by mom Keri
Katie Rose is the 5th child of 10 children born
to Ritchey and Keri.
Katie Rose was born May 5th, 1996, At birth I saw a beautiful baby girl but
I knew right away something was wrong; her feet were and still are different
sizes. She had a crooked butt crack. I insisted something was wrong and by 6
weeks old we had the diagnosis.
Katie Rose was born with a split spinal cord (Diplomyelia). She had to spend
her first year of life wearing a camp brace as she had no hip sockets. She
had her first spinal surgery at 5 months old and they did a biopsy on the
tumors and they were benign. She wore many casts to help stretch her tendons
in her feet. At 23 months she started to walk. She had tendon lengthening at
age 2 and 3 years old. She was fitted with leg braces and wore them on both
legs. At 5 years they broke her right leg and put plates and screws in. At
six years they removed them. And at 6½ she had a screw put in to stop growth
on her right leg. At 7 she had a tethered cord and had surgery to release
the cord. At 7½ she had the screw removed from her ankle.
When Katie Rose was 8 years old she got very sick with Pneumonia for almost
2 months before we got the diagnosis of Acute Lymphocytic Leukemia Pre B on
February 19th, 2005. We were shocked with a cancer diagnoses. Katie Rose is
a fighter and is still continuing in her fight with leukemia. She has spent
77 days in the hospital since diagnoses and was in critical condition for
the first 12 days. We have numerous clinic visits. She takes daily oral
chemo. Because Katie Rose's spine is fused, they could not give her spinal
taps or spinal chemo so they had to put an Ommaya reservoir in her head
(shunt) for spinal taps and chemo treatments. She has had complications and
ended up getting very sick, we ended having surgery again to have the
reservoir removed as it had kinked and chemo had leaked in to her scalp and
ate away the flesh. They put in a new reservoir on the other side of her
head and it is working properly but the surgery to place it in, resulted in
a small bleed and she had a mild stroke. She since has recovered. We can no
longer give her chemo through her Ommaya reservoir for she has had some
changes in her brain. We still use the Ommaya for spinal taps. She also has
a central line port (in her chest) for chemo IV’s and blood work. The first
one also had to be replaced but the second port in her chest works perfect
and makes it easier for blood draws and chemo. We attend occupational and
Physical therapy twice a week.
Katie Rose is a sweet girl who always thinks of others. When the cedar
wildfires hit our communities in San Diego, Katie Rose had just won a
contest and won money. She spent every penny on crayons, coloring books and
paper and pens for the kids in Crest. She was able to give 25 boxes of
crayons and books. This past year we have been very active in the art
therapy program at the San Diego Zoo. It has been very therapeutic and Katie
Rose enjoys seeing her friends and drawling animals. She made bracelets to
sell for a fund raiser so the kids could continue in this Art program and
raised $60.00 on her own.
Katie Rose wrote a book when she was 8 years old. She wrote the book about
her surgery and hospital stay, that she wants to get published. She wrote it
so other children would not be afraid of having surgery. She wants children
facing surgery to be able to get a copy of this book for free.
Katie Rose is now having us document her Leukemia experience so she can
share with others so they won’t be afraid and so people can understand what
these kids go through. She is a smiling girl and is a fighter and she will
win this battle with cancer! Her motto “Never Give Up” It is something we
all need to remember in life.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes, but wears leg braces and needs wheelchair for distances.
Read: Yes.
Use hands: Yes.
Siblings:
sister Ashley, age 21
brother David, age 18
brother Brandon, age 16
brother Johnathan, age 14
sister Sarah, age 9
sister Madison, age 8 (twin)
sister Makayla, age 8 (twin)
sister Rebecca, age 7
brother Thomas, age 5
Child's Interests:
Katie Rose loves Disney Princess and when we are in the hospital we put up
posters to make it more fun. She enjoys coloring and writing stories. Katie
Rose loves to play with her 4 younger sisters, they play school, Barbies and
games. She also likes to take pictures, make believe play, Girl Scouts and
school.
Sibling's Interests:
The girls like coloring, singing, Barbies and Disney.
The boys like sports, teen CDs and drawing.
Thomas likes coloring, cars, trucks and animals.
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