Neuroblastoma: Sarah's Story

This young woman continues to receive the best follow-up care from CHOP after being treated for neuroblastoma as a toddler.

sarah Sixteen-year-old Sarah is spirited and enthusiastic, and an avid tennis player to boot. Each time she swings to hit the ball, her face lights up with determination and joy as her beaming parents, Kyle and Judy, look on, realizing how special moments like this are for Sarah, a survivor of neuroblastoma.

Neuroblastoma is a tumor of nerve tissue that develops in infants and children and can occur in many areas of the body. It is the most common and one of the most deadly solid cancers found during this critical time.

Sarah was diagnosed with neuroblastoma while still a toddler. The tumor was wrapped around her organs, making removal a dangerous and difficult task. She endured two unsuccessful surgical procedures in an attempt to remove it. Her doctors started her on chemotherapy and after six courses of treatments, the cancer went into remission. However, her miraculous journey was only just beginning.

Young Sarah became one of a rapidly growing population: survivors of childhood cancer. Thanks to advancements in research and treatments, nearly 80 percent of pediatric and adolescent cancer patients can now be cured.  While this is good news for patients and families, many cancer survivors encounter other serious health problems, sometimes several years later, related to their childhood illness.

Not every child has long-term physical effects, but all have experienced some emotional changes as a result of having had cancer, says Dr. Anna Meadows, a pioneer on the subject in the 1970s and the founder of the Cancer Survivorship Program at The Children's Hospital of Philadelphia.

The Cancer Survivorship Program at Children's Hospital, now celebrating its 25th year, was established to improve the health and well-being of childhood cancer survivors by promoting adherence to a schedule of follow-up appointments; providing referrals to specialists; offering psychological counseling; transitioning patients to adult care when they are ready; and educating patients, parents and healthcare professionals about the long-term effects of cancer treatment.

Founded by Dr. Meadows, the Cancer Survivorship Program was the first-ever effort to develop a pediatric survivorship clinic. It now serves as a model for similar programs throughout the world.

We teach survivors to be good historians of their individual cancer treatment and to be aware of potential late effects, says Dr. Meadows. "By doing this, each survivor can act as her own advocate.

For Sarah, follow-up with the Program has meant hearing and kidney tests. Thankfully, she has shown no signs of late effects to date. Still, it is important that she continues to be monitored at the clinic.

It's a real safety net for us to know that Sarah is still being seen at Children's Hospital, says her mother, Judy.

Her husband Kyle agrees. Over time, going back for check-ups and tests for long-term side effects and always getting good news back, the fear and hurt started to be replaced by hope and happiness. Sarah is now enjoying high school, proms and time with friends.

Thanks to the ongoing support of The Children's Hospital of Philadelphia, Sarah, Mom and Dad, and her family and friends are looking forward to all of life's milestones.

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