Legacy of hope

    Was it coincidence that two distraught parents received a St. Jude medallion just as they were seeking a hospital to save their son’s life?

    Sometimes a “mere coincidence” can have life-changing consequences. Just ask Patrick and Kristin Trysla. An unexpected gift helped this couple make a decision that saved their baby’s life.

    Their son, Clayton “Clay” Trysla, was born with a muscular disorder that caused his head to tilt slightly to one side and eventually flatten in the back. The Tryslas requested a CT scan, which showed no abnormalities.

    Kristin began to notice signs of extreme fatigue in her normally energetic son. Then she noticed that Clay could no longer use his left arm to grab his feet while having his diaper changed. A pediatrician suggested that his elbow was out of socket, but Kristin’s maternal instincts told her otherwise.

    “I was very uncomfortable with that diagnosis,” she recalls.

    Less than 24 hours later, Clay started throwing up. The Tryslas took him to the emergency room and asked for another scan. That’s when a team of doctors delivered the disturbing news.

    “There’s no easy way to say this; he’s got a large mass in his brain, and it’s going to have to come out as soon as possible,” the doctors said.

    Million-dollar question

    The mass was an aggressive brain tumor known as primitive neuroectodermal tumor or PNET, located in the part of Clay’s brain that controls movement, orientation and recognition. This kind of cancer is extremely rare in children younger than 3 years old.

    At 7 months old, Clay underwent an operation to remove the tumor. 

    “I remember these words exactly. They said, ‘We got everything we could see.’ As a parent, you want to hear, ‘We got it all,’” Kristin recalls.

    Because their local hospital had treated few PNET cases like Clay’s, the Tryslas explored other institutions that specialized in treating infants with rare brain tumors. Clay’s dad, Patrick, tapped into his own siblings’ experience in health care to identify and consult with leading neuro-oncologists and medical research professionals on the best treatment centers for Clay. The couple pared the list down to the top three, contacted the physicians by phone and posed the “million-dollar” question.

    “We asked them, ‘If this were your child, where would you take him?’ The overwhelming response was St. Jude Children’s Research Hospital,” Kristin says.

    Good as gold

    Every moment was critical to Clay’s survival. The Tryslas knew they had to make a decision prudently, but quickly. That night, they prayed for a sign that St. Jude was the right place for Clay’s treatment.

    The next morning, Kristin’s longtime friend, Luann, showed up unannounced on their doorstep. She said she had been compelled to make the three-hour drive from Des Moines, Iowa, to Kansas City, Missouri, to give the Tryslas a precious gift—a gold medallion encircled with pearls. On the front was a profile of St. Jude Thaddeus, the patron saint of hopeless causes. On the back was the inscription “To Janet, Love Rose Marie.”

    Rose Marie, the wife of St. Jude founder Danny Thomas, had originally presented the medallion to their longtime executive secretary, Janet Roth, who died in 2006. Eventually, the object had been given to Luann. 

    For the Tryslas, the medallion served as confirmation that St. Jude was the place for Clay.

    Focus for a cure

    St. Jude has the largest research-based pediatric brain tumor program in the country. Daily collaboration among researchers and clinicians ensures that children benefit from the latest discoveries in brain tumor research. The hospital’s most recent research protocol in treating rare PNET cases combines chemotherapy and highly focused radiation treatment to spare healthy brain tissue in infants like Clay.

    When the Trylas arrived at St. Jude in October 2007, they met with a team of physicians that included radiation oncologists and neurosurgeons. They learned that Clay’s tumor had already returned. Now lemon sized, it was even larger than before.

    Standard treatment after surgery for children older than age 3 is radiation to the whole brain and spinal cord. For children under age 3, this treatment is not practical because of adverse effects to the developing brain and central nervous system, says Thomas Merchant, DO, PhD, Radiation Oncology division chief.

    “Twenty years ago—and even today at some centers around the world—physicians would look at a case like Clay’s and would be reluctant to give radiation to one of the most sensitive areas of the brain,” Merchant says.

    Instead, infants at other institutions often receive chemotherapy only to delay or avoid radiation, resulting in a 50 percent recurrence rate within six months of diagnosis.

    “We now know that by treating some children early, we can reduce the chance of tumor recurrence, and they can get the benefit of focal (highly focused) radiation with minimal side effects,” Merchant explains.

    After undergoing a second operation to completely remove the tumor, Clay received four rounds of intensive chemotherapy and six weeks of focal radiation. By the end of treatment, Clay’s energy level was back to normal.

    Clay will continue to receive maintenance oral chemotherapy for six months in Kansas City and return to St. Jude for regular follow-up visits to closely monitor his progress.

    Making miracles happen

    The reception that welcomed the Tryslas home from St. Jude couldn’t have been better. Trees were festooned with yellow ribbons. Friends and family gathered to show their support. It was the perfect medicine for Clay, as well as for his parents and his sisters, Tatum and Cimone.

    “Through this difficult experience, we have been extremely blessed with how well Clay is doing and the outpouring of love and support from our family and friends,” Kristin says. “When you have a child with cancer, it’s a catastrophic event for the whole family. It is a lifetime of scans and worries, and we’re learning to balance the real world with the world of cancer.”

    Kristin believes it was no coincidence that her family received the medallion and made their way to St. Jude. Thanks to the Thomas family legacy, Clay obtained access to the best possible treatment.

    “The doctors and nurses at St. Jude took such good care of our son and wanted what was best for him,” Kristin says. “I truly believe in my heart that anybody who supports St. Jude is helping make miracles happen.”

    Reprinted from Promise, Summer 2008

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