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Austin, Sam, Alyssa and Paula Weekley

In early July 2005, twenty-month-old Alyssa Weekley developed a fever and began vomiting during a family camping trip in the southern West Virginia mountains. “She had what we thought was a sinus infection,” recalls Paula, Alyssa's mother. She and her husband Sam immediately returned home to take Alyssa to the family pediatrician. Medication alleviated the fever and nausea initially, but the symptoms eventually returned, and were further complicated by dehydration. Additional tests suggested that she might have mono or a viral infection. An ultrasound, however, revealed a mass in her abdomen the size of an orange.

Within a month after their camping trip, doctors at Ruby Memorial Hospital in Morgantown, West Virginia made the determination that Alyssa had neuroblastoma, a rare and often deadly form of cancer that affects infants and young children.

According to the American Cancer Society, the term neuro indicates “nerves,” while blastoma refers to a cancer that affects immature or developing cells. This means that neuroblastoma is a cancer of an infant's “sympathetic” nervous system-the nerve network that regulates involuntary body functions such as breathing, heart rate and digestion. Its cause is unknown, though most physicians believe that it is an accidental cell growth that occurs during normal development of the adrenal gland. It is a cancer that metastasizes, or spreads, very quickly to other parts of the body.

Most neuroblastomas start in the abdomen, and the average age at the time of diagnosis is 17 months. In that regard, Alyssa's was a typical case. But in another aspect, hers was quite different. “Alyssa's case is very odd in that her tumor was engulfed in her major blood vessels,” Paula Weekley said. “Her aorta was growing right up through the tumor. At first, we didn't think any surgeon would attempt to get it out because she could bleed to death.”

The Weekley's found their specialist at Sloan-Kettering Memorial Cancer Center in New York City. In December of last year, 85% of the tumor was removed at Children's Hospital in Pittsburgh. But because of a number of high-risk factors, removing the remaining 15% would require the best treatment available. Alyssa's doctor at Sloan-Kettering, would provide that treatment.

“The biggest risk she faced,” said Weekley, “was losing her remaining kidney.” This is because the tumor was sitting right on all of the ducts and vessels that supply the kidney. “Any time you work around that area,” Weekley said, “there is a chance that the kidney can fail.”

The next biggest risk, according to Alyssa's oncologist, lies in the fact that the tumor is encased in the aorta and against the vena cava (the largest blood vessels in the body). To remove the tumor, it is generally pulled away from organs and vessels, but after having radiation, chemo, and MIBG treatment, it can make the tumor very sticky and hard to remove. Alyssa's surgeon told the Weekleys that the aorta could just crumble. He may be able to do grafts, he said, but it could just fall apart, causing her to bleed to death. “And there is always the threat of infection with this type of surgery,” Paula added.

But despite all of the risks, Alyssa's Doctor told the Weekley's that he “has never lost a child in surgery.” That provided some measure of comfort, given that he performs two of these types of surgeries a week. When asked what degree of difficulty he felt Alyssa's case was, her doctor guessed “eight out of ten.” But he also said that while it is his job to get the tumor out, he would not compromise her life in doing so. If at any point he didn't feel it was safe to proceed, he would stop.

The surgery was performed on January 26, and went very well. After being in the operating room for more than ten hours, Alyssa emerged with all visible signs of tumor gone from her body.

Five days later, bone marrow samples and a liver biopsy came back cancer free. The remaining time in New York was dedicated to keeping Alyssa's disease from recurring. Their options were limited because she has only one functioning kidney. They decided to proceed with 3F8 Monoclonal Antibody Therapy, an innovative cancer treatment. According to Sloan-Kettering's Pediatric Cancer Care Information, this therapy works by creating antibodies in a laboratory. The antibodies are administered intravenously, where they attach to a neuroblastoma cell. Then the patient's own immune system will attack and kill that neuroblastoma cell.

Following the antibody therapy, the Weekleys arrived home on March 9, after spending two months in New York. “It is so great to be back in Doddridge County!” said Paula. “Alyssa is already feeling better in her home environment and being able to play with [her brother] Austin!”

On the way from first being diagnosed with neuroblastoma in 2005 to their recent joyous homecoming, Alyssa has endured three surgeries, 14 rounds of chemotherapy, and 18 rounds of radiation. One of her kidneys has been removed. She's had to cope with persistent fevers. Complications have arisen from some of the surgeries she's had, including fluid leaking into her abdomen from multiple holes that were pulled through her tissue. She is currently undergoing antibody treatments at Sloan-Kettering, which can be very painful.

But despite all of her discomfort and setbacks, Alyssa's spirits remain amazing, Paula said. “She's always full of life and if you didn't know she was sick, you wouldn't have a clue.” In fact, Paula says that Alyssa “doesn't realize she is sick. To her, it is all just a way of life.”

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