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| My daughter, Sarah Renee Daniel, was born in 1997, and presented at birth with inherited Bilateral Retinoblastoma, which I also had as an infant. At one week old, a radioactive plaque was placed on a large tumor (9 millimeters in diameter and three millimeters in thickness), in her left eye. At this time, we also decided to give Sarah one dose of Carboplatin, in order to help stabilize the rapidly growing tumor. We decided against a full cycle of chemotherapy, due to the fact that Sarah was only one week old. When Sarah was two months old, we received the test results from the DNA study, which concluded that she carried the exact genetic copy of the Retinoblastoma gene as myself. These results relieved our family and Sarah's doctor, Dr. James Haunda. These results gave us a false sense of confidence, in that we believed it was highly unlikely that she would develop any secondary cancer, related to the Rb because I never developed any secondary tumors as a child or an adult. Over, the first year, Sarah was followed very closely by her ocular oncologist, and he successfully treated a number of new tumors in both eyes with laser and cryotherapy treatments. By 11 months old, Sarah's tumors appeared to be under control, and there was no new activity for the next three years. Sarah continued to receive regular E.U.As to monitor the Retinoblastoma. Over the next three years, Sarah simply enjoyed life as an active and curious toddler. She loved to pick flowers and go for walks. She enjoyed playing hide and seek and fighting with her brother, Sean. On her second birthday, she thoroughly enjoyed opening her first play kitchen and play foods. When Sarah turned three, our family relocated from Sacramento to Palm Springs, California. She enjoyed choosing her new bedroom, picking out her new big girl bed, and sleeping under her lavender quilt with hearts all over it. During this year, Sarah learned that she would soon be a big sister, in April 2001. In the fall of 2001, Sarah started preschool, which she had been looking forward to all summer. She was in her element, having her fourth birthday party at school with balloons, ice-cream cups, and a Blues Clues cake. Two weeks after her fourth birthday, I noticed some headaches which Sarah started having over the weekend of October 6. I'll never forget our trip to the local mall, where she picked out her favorite Halloween costume, a pink dress, glitter fairy wings, crown, and tiara. On Monday October 7, Sarah was sent home from preschool because she vomited at school. She told me she still had a headache, which wasn't alleviated by Tylenol at this point. The following day, her sister was having her first E.U.A with Dr. O'Brien at UCSF, where I mentioned Sarah's headaches and vomiting. She immediately ordered a CT, which later that day revealed a golf ball sized tumor on the Pineal gland of her brain, called a Pineoblastoma. From that day forward, Sarah life and ours changed forever. Sarah was admitted to UCSF on October 8, where she underwent a ventriculostomy to relieve the pressure from the spinal fluid build up in her head, which relieved the headaches. She was also put on steroids to reduce brain swelling and pressure from the tumor. Over the next four months, Sarah received four rounds of intensive chemotherapy, which consisted of Cytoxin, Cisplatin, VP-16, and Vincristine. In January 2002, we learned the tumor had shrunk by 80 percent. In February, Sarah underwent a gamma knife treatment to destroy the rest of the tumor cells. She also started a tandem minni stem cell transplant, which she was unable to successfully complete, due to her fragile blood counts' inability to recover. So, in March of 2002 we tried to resume our lives normally, meanwhile waiting for the next M.R.I. In April, we let our breath out when we heard the news: "Everything looks good." However, there were a few tiny spots which weren't too concerning, but to be on the safe side, Sarah's neuro oncologist scheduled the next M.R.I for the first week in June. On June fourth, we got the devastating news we were so afraid to hear. Sarah's cancer had returned with vengeance this time. It had spread throughout the lining of her Cerebellum and her entire spinal cord. For four weeks we opted to use full brain and spine radiation as a means of pain relief, as well as to shrink the large mass at the base of her neck. In July, Sarah started to regain strength and was able to go home completely off pain medication and steroids. In August, we took a trip to Disney granted to Sarah by Wish Upon A Star. It was a trip that has a lifetime of memories. Sarah danced on stage in her Cinderella costume, swam in the pool, and rode many rides. Her most favorite was The Tower of Terror, which she insisted on riding twice. Sarah was able to start kindergarten, which she had talked about all year. After four weeks, her symptoms began to change again. I noticed loss of appetite, weight loss, fatigue, and irritability. The M.R.I in September 2002 revealed yet another new tumor in her frontal lobe, which explained all the new symptoms. We tried one more treatment, a phase one clinical trial of intrathecal Busulfan. However, in spite of all the treatments we tried for Sarah, nothing was working anymore. In October, her neuro oncologist Dr. Anu Banerjee, told us the newest treatment had no effect on any of the tumors, which continued to grow rapidly. We felt it was time to take Sarah home to Palm Springs and make her as comfortable as possible with pain management and Hospice. She enjoyed life the best she could, swimming twice in our heated pool, eating her favorite foods, watching Disney movies, and helping me wrap presents for her brother's birthday party. Sarah died on October 20th 2002, aged 5, surrounded by her family. I have told Sarah's story in order to fully inform parents of children who have bilateral Retinoblastoma. Even though it is very small risk (less than 5%), there is a small chance that these children will develop secondary brain tumors related to the bilateral Retinoblastoma. It is extremely important to have children routinely screened with M.R.Is every six months. Sarah was a gift, and it is my mission in life to carry her gift on, and educate others about this terrible disease, and what might possibly happen to a small percentage of children. Always be aware of sudden onset of these symptoms, morning headaches, persistent headaches not alleviated by Tylenol, vomiting, irritability, loss of appetite, weight loss, and anything that just doesn't seem right. |
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| SARAH RENEE A Memorial. Sarah's story is written by her mum, Jenny. |
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| Sarah Renee Daniel 24 September 1997- 20 October 2002 Loved and remembered always. |
| SARAH RENEE DANIEL A GIFT OF LIFE As a lasting tribute, Sarah's family has established a foundation to raise funds for Child Life programs which aim to brighten the lives of hospitalised children. Click to learn more about Sarah's Gift Of Life. |
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| The song playing is "Precious Child", written and performed by Karen Taylor-Good, in loving memory of her nephew, Paul Rodgers. Click here for more info, or here if you don't hear the music. Requires Real Audio. |
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| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| ORPHANS OF THE CANCER STORM |