"Your daughter will receive chemo-therapy
for a year, but most do not survive the year" the doctors said. We
thought our world had ended.
Please meet our beautiful daughter
Riley Janet Saba. Riley had just completed her Kindergarten year, when
she told us "Mommy I see two". We visited the ophthalmologist
and he diagnosed 6th nerve palsy. A virus can cause the condition, but
he ordered an MRI to be sure. In the days leading up to the MRI in June
2001, Riley got progressively worse. She had trouble walking, speaking,
using her right hand and could not get out of bed the day of the MRI.
Her daddy had to carry his little 6 year old into All Children's Hospital.
We knew something was seriously wrong
with her because of the rapid onset of symptoms, but never imagined just
how bad it was. We received the news that afternoon -- she had a mass
in her brain.
Later that evening, with Riley in
the ICU, we were told that she had a Brain Stem Glioma and that the Pediatric
Oncologist would come and meet with us the following day. I had to ask
the nurse what kind of doctor that was -- she said it was a cancer doctor.
You can imagine my face. We were told that surgery was not an option because
of the location and the diffused nature of the tumor, but that we would
need to begin radiation right away to try to decrease the size of the
tumor. Of Course, we hoped it would get rid of the thing altogether.
We had several people doing research
to see if there were any other options, but with her type of tumor, there
was, and is no cure, none. No one lives. We got a second opinion regarding
surgery from Dr. Fred Epstein and he agreed with our neurosurgeon that
operating was not advisable. Immediately, they started Riley on 16mg per
day of steroids to reduce the swelling in her brain. Her body normally
produces 2 to 3 gm per day, so this dosage had an incredible effect. Her
personality changed immediately and she was very upset and confused. Over
the next 2 ½ months she gained over half of her body weight and
her face was very big and round. Thank God appearances never mattered
to Riley, she always believed that it was more important to be beautiful
Because we were not able to reason
with her and because her behavior was so out of the ordinary she was not
able to lay still for radiation, she had to be put to sleep every morning
for 6 weeks so they could give her the radiation treatment. We drove 2
hours round trip every morning for 32 days (weekends off) at 6am. She
was not happy during these 6 weeks and it was very hard on her, but she
kept going. She went through 3 rounds of chemotherapy at the same time.
As she started to wean off the steroids her incredible personality started
to shine through again and she started to lose the puffiness. She started
to feel a little better and attended school some with Mommy by her side.
The first MRI was great news -- the tumor had shrunk more than the doctors
ever imagined it would. We were very happy and positive.
Riley had a pretty good month and
a half and then had another MRI; this one took us back to reality, "there
is no cure for this tumor". November 5, 2001, Riley's tumor had spread
to 2 other areas in her brain and down her spine. A very low percentage
of brain stem gliomas spread in this way, so it was a big surprise. Her
back began hurting her and she stopped eating. On Monday, November 19,
2001, we visited a Doctor at The Children's Hospital in Washington D.C.
He recommended a biopsy to determine what kind of tumor it was and if
it was a certain kind, we could begin high doses of chemotherapy. We returned
home to think about this option, but neither one of us wanted to put her
through anything else. By Thursday, Riley's health worsened and we never
got to make the decision, it was made for us. We returned to the hospital
for a short visit to hydrate her and hook her up to a morphine pump. We
went home with the help of Hospice and kept our baby girl comfortable.
She passed away on December 10, 2001. Our strong, beautiful, smart and
caring little girl was gone in six months. The pain is unimaginable and
Why with all our technology can we
still lose children and adults to this terrible disease? Brain tumors
are now the leading cause of cancer death in children under the age of
20, surpassing acute lymphoblastic leukemia (ALL). Please help us to change
this statistic. Funding is desperately needed. Riley leaves a family with
many broken hearts including a 4 year old sister who takes money from
her piggy bank to church "to give to Pastor Susan to help with brain
tumors". Oh if it was that easy, but she has the right idea. We have
started a foundation, The Life of Riley Foundation to fund research for,
awareness of, and support to children with brain tumors. Please help us
in our fight. Let's not lose anymore precious children.
Kelly R. Saba 4769 Sonada Court Sarasota, FL 34231 941-926-4769 email@example.com