Welcome Friends!
Katelyn S.
Birthdate - July 19, 1999

Main Diagnosis -  Acute Lymphoblastic Leukemia, high risk

Quilt Deadline: September 1, 2011

THEME: Pigs







Biography

Katelyn was born on July 19th, 1999. She was a perfect healthy 9
pound 7 ounce baby, she had the biggest brown eyes you ever saw and she was so
loving and good natured, Katelyn remained healthy up until right before her 9th
birthday. The first signs we noticed were colds here and there, more than a
normal child would get, then they turned into pneumonia, her joints started to
swell up, first her ankles and then her elbows. The pain was so bad for her that
she was not able to walk or move very well, we had to dress her and carry her to
the bathroom, she began to lose her appetite and was very sleepy all the time,
she was anemic. It took a while to get a diagnosis, doctors had thought she had
pulled muscles,or was faking the pain to get attention, she had numerous x-rays
to check her joints and even had fluid extracted from her knee for testing, all
coming back clear, they could not find out what was wrong with her, finally
something began to show up on her blood tes
ts but their red flag were not there for cancer yet, they thought she had a
rheumatic disease like JRA, a bone marrow biopsy was ordered. I remember the
biopsy day because it was the worst day of my life, I never imagined in a
million years that the thing that was making my little girl so sick was cancer,
They took us back in the conference room to tell us the horrible news, I just
looked at my sweet girl sitting on the table, so young, so innocent, long dark
hair in pony tails, not knowing what the future held for us then.

The first weeks after diagnosis were very clouded, I say this because although I
remember everything that happened, it still feels like a dream to me. Katelyn
was scheduled for surgery the next day, chemo was started right away and then
came the question of what kind of leukemia she had, that was a tough question
because they could not tell, she had both ALL and AML markers meaning bi
lineage. After the first few weeks of treatment a bone marrow biopsy was ordered
to see if she was in remission yet, we got the news that she was not yet in
remission like they had hoped she would be so that put her into the high risk
category, meaning more chemo treatments were added on and with stronger
medicines.

For the past 2 1/2 years my little girl had endured:
30 spinal taps
numerous bone marrow biopsies and aspirations
too many blood and platelet transfusions to count
Grand Maul seizures from her medications
painful ulcers that ravished her mouth, throat and digestive tract causing her
to bleed from her mouth continuously
she had lost so much weight and was dependant on TPN for nutrition
lost all of her beautiful hair twice
Suffered sever neuropathy that caused her ankles and joints to swell to the
point of not being able to walk
she was wheelchair dependant at one point
She has had too many very painful asparaginese shots to her leg muscles
chemotherapy injected into her spinal cavity 30 times
I had to give her chemo through her port here at home
she missed her 4th and 5th grade years at school and had to be home bound taught
Battled staph infections from low immune system
Hospitalized with pneumonia four times
the chemotherapy to her brain has caused some mild cognitive impairment
she now has a raging skin infection as a result of no immune system and the
treatments for that are extremely painful
she has thrown up daily from her medications
gets bad post spinal headaches
now had kidney stones from a build up of uric acid resulted from her medications
endured very long MRI's, had CT scans,echo cardiograms,x-rays,ultrasounds
Has labs drawn frequently here at home
too many hospital stays to count
She has watched her friends who have battled cancer with her pass away from this
disease, she has had to learn about death in a very hard but personal way.


All in all my girl is the bravest most loving girl I know, we have all learned
through this journey that nothing is taken for granted and to cherish each and
every day because it is not guaranteed to us. Life is a gift to be used to the
fullest no matter what obstacles are thrown our way.
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