Miles’ Story: Neuroblastoma Treatment at Mott Children’s Hospital

miles gundrum - neuroblastoma careSave for the general excitement of expecting a child, Angela Gundrum’s pregnancy with her son Miles was quiet and uneventful. Which is why she was blown away when she discovered days after his birth in February that things were far from normal.

“Miles was having trouble urinating” while still a patient following his birth at their hometown hospital, said his mother Angela Gundrum. Doctors found swelling in his adrenal glands and on the top of his kidneys but were otherwise stumped. They sent her and Miles to Saint Joseph Mercy Health System in Ypsilanti for an ultrasound. Doctors there discovered a mass and gave Gundrum further options for where to receive more advanced care. “We opted for U-M without a second thought,” she said about her and her husband Matthew’s decision to have Miles be seen at Mott Children’s Hospital.

The following day, Gundrum was on the phone with U-M pediatric urologist Dr. Vessna Ivancic, who she calls Dr. Bubbles. Dr. Ivancic had already studied the ultrasound from St. Joseph and ordered an MRI for Miles that weekend. The MRI revealed the worst. Miles had a tumor the size of an orange pressing on his kidney.

The good news was that Miles could get treatment quickly and doctors could save his kidney.

Two days later, Gundrum and her husband sat in a Mott Children’s Hospital room surrounded by a team of doctors, nurses and staff learning how Miles would be cared for over the next couple of days and further into treatment.  U-M’s unique Solid Tumor Oncology Program brings together a multidisciplinary team of specialists that evaluates each patient in a single visit, reducing the need for multiple visits and reducing wasted time lost between appointments at various individual clinics.

In Miles’ case, their first consultation at Mott Children’s Hospital culminated in a meeting with their full treatment team, including pediatric surgeon Dr. Erika Newman, pediatric oncologists Dr. Steven Pipe, and Dr. Carl Koschmann, pediatric radiologist Dr. Ethan Smith, and the team’s nurse practitioner Erica Southworth.

The Gundrums learned from the team that Miles’ mass was a neuroblastoma. Though rare, it is the most common type of tumor in infants. It develops from immature nerve cells found in the body. When discovered in infancy, the prognosis is good. Miles would immediately need to undergo surgery for a biopsy and to further determine treatment.

Dr. Koschmann and Erica Southworth provided the Gundrums a detailed schedule of what to expect the next couple of days. The surgical team was able to obtain a sample from the tumor and a bone marrow biopsy to confirm the diagnosis, and to determine whether the cancer had spread.

In the end, doctors did not need to remove the tumor. Miles would need chemotherapy to further shrink the tumor and destroy any cancerous cells.

The Solid Tumor Oncology Program team was able to coordinate Miles’ care so that his chemotherapy treatment began just 10 days after surgery.

After two cycles of chemotherapy, Miles was declared to be in remission. Miles visits Mott Children’s Hospital for regular monitoring. He is growing and progressing normally, like any child his age.

Gundrum says her experience was made better by the many conveniences at Mott and the fact that doctors included her in communications, they taught her how to care for her son and they allowed her to stay near him during his whole course of treatment. While he recovered after surgery, nurses taught her how to change his diapers and administer medication – all activities she would need to perform at home after his discharge from the hospital.

“At first it was shocking and a little overwhelming but as I got to know the doctors, I realized they are really good people who are really great with kids,” she said.

Seemingly small things were a huge help, she added. Having a washer and dryer on site and not having to drive home for fresh clothes proved to be indispensable. Meeting other parents and having a cafeteria nearby for food were all amenities that enabled her to concentrate on being there with her son.

“We had the ability to stay with him and help care for him. I was really worried about having to leave him. It was a huge relief to be able to stay right there with him, in his room and participate in everything.”

Now at 9 months, he is a doing great. “He gets into everything,” she said. “His first tooth came in the other day. He loves dogs, horses and our cat. He’s always moving. He doesn’t like to be confined and he loves food. It doesn’t matter what it is.” “And he is really happy. I don’t think he even remembers anything that’s happened because he was so young when this all happened.”

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mott blog - BOC thumbBlock Out Cancer is a rallying cry for people from all walks of life to come together to support the fight against children’s cancers. Everyone has a role to play. Learn more about how you can help Block Out Cancer.

 

best children's hospital

University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” in 2014, and among the 10 best children’s hospitals in the nation by Parents Magazine.

Understanding Childhood Cancers and How Genetics Could be Involved

Due to advances in research and collaborative studies, the National Cancer Institute reports that the long-term survival for children with cancer has increased from less than 10% to almost 80% in the past 50 years.

In general, cancer in children and adolescents is rare, with particular cancers occurring more often:

  • leukemia
  • lymphoma
  • brain and central nervous system tumor
  • tumors of developing tissues such as neuroblastoma, bone and soft tissue sarcomas
  • other cancers

While most cancers in children occur by chance, a small portion can be linked to an inherited genetic syndrome. One study of 1,100 pediatric cancer patients evaluated by genetic specialists confirmed an inherited cancer susceptibility syndrome in 3.9% and a suspected syndrome in another 3.3%*.

Though your child may already be seeing a number of specialists, referral to a geneticist or a genetic counselor can be another important piece which may provide a better understanding of why your child developed cancer and what this diagnosis means for siblings and other family members.

If other family members have been diagnosed with cancers, this could indicate an inherited syndrome that increases risks for cancer. Some of the pediatric cancers that may suggest an inherited predisposition to cancer and warrant a referral to a genetics clinic include:

  • medullary thyroid cancer
  • adrenal cortical carcinoma
  • retinoblastoma
  • sarcoma

Physicians and genetic counselors in the Cancer Genetics Clinic at the University of Michigan meet with patients and families to review your family history and determine if genetic testing may help clarify risks for additional cancers in the family. Targeted screenings and other risk reduction efforts can be taken in an effort to prevent cancer in the future.  The Cancer Genetics Clinic welcomes patients of all ages who may have questions about the risk of a genetic predisposition in their family.

Continue learning about cancer and genetic risk

*(Merks et al, Am J Med Genet. 2005 Apr 15; 134A(2):132-43)

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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