Riley Saba did live the "Life of Riley". She was a courageous, healthy, happy and beautiful seven-year-old girl. However, Riley was diagnosed with a brain tumor in June 2001. After she was diagnosed, Riley told her parents that she wanted other children with brain tumors to be able to live their lives with the hope of finding a cure one day. She also wanted these children to look forward to gifts during treatment, as reminders of hope and happiness. Riley died just six months after her diagnosis. Her generous spirit, and the courage and compassion she showed, inspired the creation of the Foundation.

Her story below was written by her mother for the "Faces of Brain Tumors" booklet. It was compiled for Brain Tumor Action Week 2002 in Washington D.C. For more stories on others with this terrible disease please visit www.nabraintumor.org/faces

For more history on Riley's story, please visit www.caringbridge.com/page/rileysaba. Reading these stories will help you understand the mission statement of the Foundation.

"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 inside.

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 inexplicable.

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 ksaba@comcast.net