On 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.
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.
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:
brain and central nervous system tumor
tumors of developing tissues such as neuroblastoma, bone and soft tissue sarcomas
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
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.
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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