My Name is Vanessa and I’m helping my daughter Block Out Cancer

Keira Armstrong was diagnosed with Wilms Tumor at age 2.When our then 4-year-old daughter Keira complained of a stomachache, we thought she was probably constipated. We gave her laxatives and took her to the pediatrician who also agreed it was most likely constipation. He told us to bring her back in two weeks if she wasn’t improving.

Her stomach continued to hurt and her abdomen became very swollen. We took her back to the doctor who ordered some blood work and X-rays. He told us that if she wasn’t better in the morning to take her to the Emergency Room. Keira tried to convince us that she felt better, but we knew she was still in pain. We took her to the C.S. Mott Children’s Hospital ER.

My husband drove Keira up to Ann Arbor from our home in Tecumseh and I stayed home with our son, Cooper, who was 2 years old at the time. After several hours, my husband called and told me they’d found a mass on Keira’s left kidney and thought it was cancer. I quickly found someone to care for our son and rushed to Mott.

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My Name is Dustan and I’m helping kids be strong while they’re fighting to Block Out Cancer

Dustan ColyerI was diagnosed with stage 5 Wilms Tumor, a kidney cancer, when I was 6 years old. I’ve had recurrences when I was 10, 13, 16, and 17-18 years old. I’ve had tumors in my spinal cord, lungs, kidney, liver and diaphragm. I’m now 19 years old. Through it all, C.S. Mott Children’s Hospital has been there helping me fight.

During my treatment, I was part of a genetic sequencing study at Mott where researchers broke apart my DNA to help personalize my treatment plan specifically to me and my cancer. Chemotherapy and radiation do not work on my tumors, but the Mott team was able to put me in a clinical trial based on what they learned from the gene sequencing, and I’m now living comfortably on the new personalized medication. It’s given me a new chance to live and make a difference.

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Raegan’s Story: Wilms Tumor Treatment at Mott Children’s Hospital

mott blog - raegan kromer block out cancerChristina Kromer looks back on it as a real whirlwind.

“It all happened so quickly,” said Christina of her daughter Raegan’s journey at University of Michigan C.S. Mott Children’s Hospital.

Her 16-month-old daughter Raegan seemed to be doing fine. She was a happy baby — very social and playful. She wasn’t showing any symptoms of distress.

So Christina, of Howell, was terrified when she went to change her daughter’s diaper before a nap one afternoon to find blood — lots of it.

Her local pediatrician told the Kromers to come to her office in Howell right away. There, after an ultrasound, Raegan was directed to C.S. Mott Children’s Hospital.

“They were expecting us,” Christina and her husband Benjamin said about their initial experience at Mott. “They had a fellow from the surgery department ready to see us.”

Raegan underwent a CT scan and doctors confirmed the problem. Raegan’s right kidney had a form of kidney cancer known as a Wilms tumor, or nephroblastoma.

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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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