Our whole family was treated for cancer

When our baby was diagnosed with cancer, the medical team took care of all of us.

dominic jamisonOn the Friday our son Dominic turned 9 weeks old, he started throwing up immediately after eating. This continued on and off through out the weekend, so we took him to the pediatrician first-thing Monday. During that appointment, the doctor noticed that his head circumference seemed to be not following the normal growth curve. He sent us to a nearby hospital right away.

There they did an ultrasound and MRI, which revealed that Dominic had a brain tumor. On July 23, 2014, he underwent a seven hour tumor resection. The tumor was quite large, about 40 percent of his brain space. One week later, we learned the tumor was a rare, cancerous tumor, called a Choroid Plexus Carcinoma. We knew the road ahead of us would be a long one. Unfortunately, we just didn’t feel like the hospital we were at was a good fit for us, so we transferred Dominic’s care to C.S. Mott Children’s Hospital.

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My name is Carl, and I study genes that cause brain tumors in my fight to help Block Out Cancer.

Carl Koschmann, MDEarlier this year, I became a Pediatric Neuro-Oncology Fellow at the University of Michigan C.S. Mott Children’s Hospital.

What does this mean exactly? Aside from this bringing yet another year of training (this will be 27th grade for me!), I will spend a year learning how to take care of children diagnosed with brain tumors, working with incredible pediatric neuro-oncology clinicians, Dr. Patricia Robertson and Marcia Leonard, APRN.

In addition to my clinical work, I will also continue working in the Castro/Lowenstein Lab that focuses on learning more about malignant brain tumors. Drs. Lowenstein and Castro have established tremendous success in developing gene therapies to treat brain tumors, one of which is now the basis of a Phase I trial in adult patients here at the University of Michigan. Continue reading

My name is Kristan, and I help reduce anxiety for kids fighting to Block Out Cancer.

Kristan Freitag, Child Life SpecialistI always knew I wanted to work with children, I just wasn’t sure what avenue that would take. During one of my school breaks my sophomore year at Central Michigan University, I did what is called an alternative break. I joined a group volunteering at St. Jude Children’s Hospital. I fell in love with the Child Life profession while I was there.

I love my job. I first interned at Mott about five years ago and then joined the team as a Child Life Specialist. Today, I work with pediatric patients in our radiation oncology unit. Before I started here, there was not a Child Life Specialist on this unit and about 40 percent of the patients had to be sedated for their radiation treatment. Because most of the kids receive radiation multiple days in a row, sedating them so frequently was a concern. We’ve been able to reduce that to about 2 percent.

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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.

Sweet inspiration behind Gracie’s Fund for leukemia research

Gracie's battle with cancer inspired The Original Murdick’s Fudge of Mackinac Island to support Gracie's Fund for leukemia research at Mott Children's Hospital.

At age four, Gracie Irish was diagnosed with Acute Lymphoblastic Leukemia.

“My husband and I were in complete shock,” says Gracie’s mom, Amy Irish. “We were numb.”

After sharing news of Gracie’s diagnosis, friends of the Irish family recommended they visit C.S. Mott Children’s Hospital for treatment.  Acting on the recommendation, Gracie was airlifted from their hometown hospital to Mott by U-M’s Survival Flight crew.

Amy remembers this first interaction with U-M staff vividly.

“I was sobbing at this moment and a member of the flight crew immediately came over to reassure me,” she says. “He said, ‘don’t worry, she’s going to a great place – my own son was treated at Mott and is now a successful college student.’  It gave me a sense of hope from the very start.”

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