Sarah's Story
written by mom Michelle
Sarah Elizabeth was born on Tuesday, July
22, 1997. She was delivered via c-section because of complications I had
during child birth.
She was always a happy baby. She slept most every night. She never had the
day and night thing mixed up. We all fell in love with our “Sassy Girl”. She
was the light of my life. I chose her name from biblical names of strength
and beauty. Sarah meaning “princess of the multitude” and Elizabeth meaning
“the oath, or fullness, of God.” Neither of these names had ever been used
in our family. I began telling people that her name was given to me from the
Bible. I would tell them how Sara was Abraham’s wife and how Elisabeth was
John the Baptist’s mom. They all thought I was a bit odd in doing this. They
told me her name was a classic. It soon became a familiar name to be heard
everywhere.
Sarah had a happy childhood it was just as normal as anyone else’s. She
started preschool at 3 and soon made lots of friends. It was to our
amazement that she was such a quick learner. She loved books. She would sit
and look at them for hours. She liked going outside and exploring nature.
She soon developed an interest in rolly pollys and frogs. I tell you it was
a true test for me to keep them out of her diaper or pockets.
She completed her 2 years of preschool and soon went into a private
Christian school and met her new school family. She still has so many close
friends at her school and she misses them dearly.
Let me back up a step and talk about when she got sick.... Sarah started
having headaches around the beginning of May 2006. She would call me each
day around lunch time saying her head hurt. I would let them give her
Tylenol and she was fine. She never really complained much at all. This
headache thing began to get worse. It was a daily thing. On Monday, May 16,
2006, Sarah called me and I went to get her from school. She said she felt
really bad. She complained of her head hurting and her mouth. I immediately
thought about her having a cavity. We went to the dentist. He confirmed she
had a cavity and had too many teeth in her mouth. They said to treat it with
Advil and the pain should go away. I felt good at this point.
Ok, so we would pull some teeth in a week or so and things would be good
again. To my disbelief I would be awakened at 5 am with Sarah in tears
asking to go to the ER. I asked her if she felt she could wait to go see Dr.
Bradford at Laurel Pediatric Clinic. She said ok. She relaxed as much as she
could and we waited until our appointment at 9 AM. We were immediately seen.
They ran a CBC. I had no clue why. We were sent to the hospital for a chest
X-Ray and were told to go back to his office. We arrived and they did
another CBC suggesting their machine was acting up.
The doctor soon came in and asked Sarah to go out of the room with his
nurse. I didn’t know what to think. He began telling me about how his test
showed Sarah’s white blood count was 98,000. This was way too high in his
mind. He told me he called a doctor in Jackson at Blair E Batson Children’s
hospital and would be referring Sarah to them there. I was in shock and soon
called my family to hear this terrible news. It was like taking a dose of
very bad medicine. We arrived in Jackson around 5 pm May 18. We met the kind
doctors and nurses of BEB and soon Sarah had more blood tests. This time her
white blood count was 118,000. This was a big difference considering the few
hour difference. She was admitted.
Little did we know about her diagnosis! We were told she had Acute
Myelogenous Leukemia. They said they could treat here there and that we
should start immediately. By May 21, Sarah had started her rough 6-7 months
of ARA-C, VP-16 and Daunorubicin. She has had numerous bone marrow
aspirations and lumbar punctures. She is a pin cushion. We was in the
hospital each month at least some time during the month. We were told on
October 21, 2006 that Sarah was in remission and that chemo could be
stopped. We would come in the next couple of months once a month to get her
counts checked.
Sarah did great during November. Not a problem one did she face. She went
back to school and was a normal 9 year old. To our disbelief and non
understanding, Sarah’s headaches began again. We called Jackson and they
said to watch her. Soon after Thanksgiving, Sarah’s left side became a bit
different. Her hand was cold. She did not complain at all. Her headaches
were getting a bit stronger. My husband and I went shopping on December to
get early Christmas presents and shopping done. We got a call from my mother
in law. She said Sarah had a really bad headache and she gave her some
medicine. When I arrived home, Sarah could not walk and when she was able to
get up she stumbled around. I soon called Jackson. They said she needed a CT
scan.
We went to the local hospital and they found some sort of lesions. They did
not know what they found. We were sent to the hospital in Jackson. They too
did a CT scan and found the lesions too. We let them do a 5 day strong round
of chemo before we did anything else. After this they did another CT scan
and nothing had changed. They then planned on a procedure called an
Intervention. This Intervention was a sort of brain surgery to see what
these lesions were. They had it narrowed down to 2 things. It would either
be a bad fungal infection that AML kids can get or a tumor. We had hoped for
the fungal infection. We prayed so hard. We were told around 7 that night
that it was a Chloroma. This was a sort of tumor that was caused by the AML.
Ok... There it was, a tumor this time.
She spent one night in PICU. She soon began radiation and chemo at the same
time. Once the tumor seemed to be going down they could do a LP and put meds
in her spine. We were told at that point that she had fully relapsed. Her
bone marrow was back to 85% blasts and her blood was at 60%. I believe at
that point my world stopped. Sarah spent the entire month of December and
January 07, in the hospital. She has had numerous LP’s and at least 3
different rounds of chemo to get back into remission.
We were told they were once again successful. Sarah is in remission again.
They said her only hope of making it was to have a bone marrow transplant.
We are lucky. We have 2 other children. Andrew Thomas and Emma Danielle were
checked. Andrew Thomas is a good match.
February 26th, 2007, we started these next phases to get the children ready
for the transplant. Andrew is our Super Man. His special medicine in his
body will save his sister’s life. I am so blessed.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes, but has left side weakness.
Read: Yes.
Use hands: Some. Her left hand is weak. She is in physical therapy
and it is getting better.
Siblings:
brother Andrew, age 6
sister Emma, age 3
Child's Interests:
Sarah likes computer games. She has her own computer, Xbox 360 and Wii
systems. She loves animals and has a pet snake. Sarah takes care of her
brother and sister and she also likes to read and enjoys art.
Sibling's Interests:
Andrew likes to play games with Sarah. He loves to play outside. He too
likes animals. Andrew likes his GameBoy DS and his V Smile.
Emma likes Barbie and playing with her sister. She also likes Dora and
swimming.
Click
HERE
for recent updates on Sarah
(use the "Search" box on the sidebar of that page
to find updates on this particular child)