Last year as my daughter, Kailyn, was starting eighth grade, she decided she wanted to play volleyball. She needed a physical to try out, so I took her to a local urgent care center for a basic sport physical. Because she had been diagnosed with a heart murmur when she was much younger, the doctor at the urgent care center would not give her permission to play and referred us to our pediatrician.
Luckily, her pediatrician was able to see her on a Saturday so she could get that sport physical done in time for tryouts. The appointment turned serious when the doctor started pushing on Kailyn’s stomach. She felt something hard and thought it might be her bowels. He told me to give her Metamucil and follow up on Monday for an ultrasound. On Monday, Kailyn called me from school to say that her stomach hurt. I took her straight to the ER.
I just started my senior year at Marlette High School, but my teen years have been a pretty different experience than most other girls my age. When I was in eighth grade, I had pain in my hip for a few months. I went to a chiropractor who thought it was arthritis. When the pain did not go away, I had X-rays that showed a grapefruit-sized mass attached to my hip. I was diagnosed with Ewing’s Sarcoma, a cancerous tumor that is most often found in bones or nearby tissue.
I was referred to C.S. Mott Children’s Hospital for care. Because the tumor was in my hip, my first experiences at Mott were with the oncology clinic and Dr. Biermann, an orthopedic surgeon who specializes in orthopedic oncology. With Dr. Biermann, I underwent surgery to remove the tumor and my ilium (the large bone in your pelvis) on November 30th. I also had 13 rounds of chemo stretching from August through April. The chemo was not fun! I lost my hair and felt sick. I missed volleyball season that year.
I 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.
Save 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.
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.”
Block 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.
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.
Nurse Practitioner Erica Southworth works with children and families during one of the most difficult times of their lives: throughout the diagnosis and treatment of children’s complex solid tumors.
While she realizes that most parents are willing to do anything for their child, even if it means running from U-M clinic to clinic, or making repeated trips to Ann Arbor to meet with the various doctors, Southworth believes these families deserve better.
U-M’s doctors, nurses, and care team members have a culture of wanting to do a better job of caring for our families. In the case of children with solid tumors, caregivers wanted to not only improve the overall care of the patient, but also make it more convenient and less WORK for families.
Read more on the multidisciplinary Solid Tumor Oncology Program created to coordinate a child’s care, and Southworth’s role in empowering families with knowledge about treating their child’s solid tumor.
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