My name is Jason, and DNA sequencing is helping my family Block Out Cancer

Jason and Amelie StrzalkowskiWhen our youngest daughter, Amelie, was 22 months in the fall of 2012, we noticed that she started to have balance problems. She went from zooming around the house to being less steady, and then one Sunday, she stood up and simply fell over. That set off warning bells for me and my wife, Shelley.

We scheduled an appointment with our pediatrician for that Wednesday. From there, our pediatrician sent us to the ER at C.S. Mott Children’s Hospital. Thursday morning she had an MRI where they discovered a brain tumor. Amelie was diagnosed with medulloblastoma, a kind of fast-growing tumor. On Friday, she had a 13-hour surgery to have as much of the tumor removed as possible. The team at Mott took tissue samples from the tumor to study them further.

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Improving the Patient Experience: How can we do this better?

By Erica Southworth, NP

As a nurse practitioner for the past seven years, I have had the privilege of being able to help many families through one of the most difficult times of their lives.

My area of specialization and interest is working with children and families faced with the diagnosis of a solid tumor, such as neuroblastoma or Wilms tumor.

Solid tumors are complex conditions that require a full team of specialists to treat.  Families are referred to us from all over Michigan and sometimes beyond. Often, prior to being sent to us, they may have experienced a long, frustrating and seemingly endless journey towards a diagnosis. As a professional and as a mother, I have always found it frustrating to see families who, having bounced around from appointment to appointment, are exhausted and scared when finally arriving at U-M. Even after their numerous appointments, they still possess little formal information about their child’s condition or disease.

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