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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Nectarine and blueberry crisp

nectarine and blueberry crispIt’s blueberry season!  That means you can find plenty of these delicious fruits for a good price at your local farmer’s market or grocery store.

Blueberries are a great, healthy snack that kids love.  You’ll also find that fresh, plump blueberries can be a great addition to all sorts of baked goodies – and this summer we highly recommend trying this delicious nectarine and blueberry crisp from Rebecca Wauldron, Executive Chef at Busch’s Fresh Food Markets. 

Not only is it a delicious treat (everyone at our photo shoot gobbled it up, including the two kids!), but it’s also an MHealthy approved recipe!

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5 things I want kids (and parents) to know about living with a disability

Kelsey Kleimola, Ms. Wheelchair Michigan, and her family.From the minute a child is born, that child’s parents develop dreams for their child. While rocking them to sleep at night, and looking into that perfect little face, a parent dreams of who that child will become, and what he or she might accomplish. An author, a photographer, a doctor.

I’m sure my parents dreamed of these same things, even after I was diagnosed with cerebral palsy. Since then, I’ve come a long way. I’ve accomplished so many amazing things, despite my disability. I’ve overcome numerous hurdles, and faced countless challenges. And through it all, I’ve learned some things during this journey.

  • It’s OK to ask questions. It happens more often than you’d think. I’m in a public place, a restaurant or store. A child is with his or her parent, and the inevitable question is asked. “Why is that lady in a wheelchair?” And, more often than not, the parent steers the child away from me, quietly whispering that asking that question isn’t polite, and didn’t I teach you better than that? Personally, I’d rather that child have asked me. How else do we learn? How else do we push past our own assumptions and choose to grow? We seek knowledge. So, ask the question. Learn.

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Providing surgical expertise in Peru

Dr. Ron Hirschl and Dr. Megan Arnold operating in Yantalo, Peru.So often, we hear Michigan families comment on how fortunate they feel to have C.S. Mott Children’s Hospital in their backyard.  As a parent myself, I have always felt grateful to know the level of care that U-M provides is available so close to home for Michigan families.  For me and several of my colleagues, however, the gift of proximity to advanced care becomes even more striking once or twice a year when we step off the plane and begin our work to help children in Yantaló, Peru.

The small Peruvian town of Yantaló sits in the Amazon jungle. Getting to Yantaló is a one-hour flight from Lima, Peru, followed by a two and a half hour car ride. Because of its geographic isolation and lack of resources, getting specialty and surgical care to the residents of Yantaló and the surrounding area is a challenge. Enter C. Luiz Vasquez and the Yantaló Peru Foundation.

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U-M nurse anesthetist leads medical relief trip in Kenya with U-M and Henry Ford health systems

As a nurse anesthetist at the University of Michigan’s C.S. Mott Children’s and Von Voigtlander Women’s Hospital, as well as Henry Ford Health System, Elizabeth Studley closely monitors patients each day to make sure they are safe, comfortable and relaxed. But Studley’s commitment to helping others extends beyond hospital walls.

Kenya Relief medical team from U-M Health System Henry Ford Health System

The U-M Health System and Henry Ford Health System will send a total of 23 medical staff to Kenya this week to offer much-needed medical relief to local residents.

For the last five years, she has led a team of surgeons and other health care providers from both HFHS and the UMHS to provide care to people in Kenya.

This week, she will again travel to the East African country with 23 surgeons, anesthesia providers, nurses, surgical technicians and pharmacists who will offer lifesaving medical relief in a region with scarce access to health care. The volunteers will provide care to people in local communities, many who travel for miles to see a physician for the first time in their lives. The team expects to see 450-600 patients and perform 50-80 surgeries—ranging from general surgery and dentistry to pediatrics and ear, nose and throat procedures—in just three days. Studley’s team is the largest of 21 groups who volunteer with KenyaRelief.Org.

As she prepares for the trip on Thursday, Studley answered some questions about why she’s so dedicated to this work. Continue reading

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.