Sean Ries turned 5 years old on Valentine's Day 2012. Sean has a sparkling personality, gives great hugs, and is quite an aspiring athlete. He loves sports, video games, dinosaurs, Spider Man, and his big brother Brian, age 8.
On February 6, 2012, Sean was diagnosed with a large tumor (bigger than a golf ball!) in the left side of his brain, and he underwent his first surgery the next day to do a biopsy. His tumor, a dysembryoplastic neuroepithelial tumor (DNET) is classified as a Grade 1 (i.e., low-grade, slow growing) glioma. There are only 1,000 cases of pediatric low-grade gliomas each year in the United States, and DNET represents just 1.2% of all brain tumors in patients under the age of 20. The first sign that anything was wrong with Sean was a mild seizure that occurred on February 2, 2012.
Early indications were that further surgery was not an option given the complexity, size and location of the tumor, which is in or near his speech and motor centers. The only treatment option initially offered to the family was a long course (15 - 18 months) of weekly chemotherapy. Despite being on multiple anti-seizure medicines, Sean's seizures continued to increase in frequency and severity, and before starting down the chemotherapy path, this opinion was revised. Action had to be taken, and sooner rather than later.
Parents Brenda and Richard sought out treatment options from some of the best hospitals in the northeast and across the country. They traveled to New York, Philadelphia and Boston for opinions, and consulted with doctors in New Jersey, Texas, Tennessee, Maryland, and North Carolina. Brenda took a leave of absence from work to focus all of her energy on Sean as the family sought out opinions for appropriate next steps in his treatment.
After weeks of consult and more tests to isolate Sean's speech and motor functions in relation to the tumor, Brenda and Richard ultimately decided on pursuing surgery with Dr. Jeffrey Greenfield and the treatment team at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City. Sean underwent a two-stage extensive brain surgery on May 16th and 22nd, where approximately 80% of the tumor was successfully removed. However, Sean still has a long battle ahead of him. He continues to take anti-seizure medications, and is facing some cognitive and neurological challenges as a result of all that he has been through. Also, the portion of the tumor that remains is very problematic as it is intertwined with healthy tissue in parts of the brain which control speech, motor activity, and vision, and the experts don't feel they can safely remove it. At this time, his future treatment includes “active surveillance” which means regular monitoring (every 3 months) via MRI to watch for tumor changes/growth, Speech and Occupational therapy to address the cognitive and neurological issues he is dealing with, and possibly more aggressive treatment when Sean gets older. In the event further surgery is required, the likelihood is that it would result in a severe neurological deficit requiring substantial rehabilitation for Sean.
Unfortunately, survivors of childhood brain tumors frequently develop problems in the areas of intellectual ability, academic achievement, memory, and attention. Although many different factors are probably responsible for these changes, including tumor location and surgery, age (younger than 7 years) at diagnosis is one of the major risk factors for neurocognitive impairments. Learning disabilities are particularly common among brain tumor survivors, and many children (including Sean) will require special education services at school. It is extremely important to assess cognitive functioning, and Sean is currently undergoing a battery of neuropsychological tests with a pediatric neuropsychologist to evaluate where his deficits are.
In September 2012, Sean was excited to be able to start Kindergarten right along with his friends. Just the week before the first day of school, he underwent his first follow-up MRI at MSKCC. Sean's oncologist was happy to report that the results showed his tumor had remained stable since his post-surgery scan in May. This meant no evidence of new or progressive growth! The next scan will be sometime in late November. Until then, Sean and his family are making the most of everyday, and fighting...praying for a cure.
Sean’s most recent MRI in January 2014 showed that his tumor remains stable! He is still on anit-seizure medication, but he has not had any breakthrough seizures since his surgeries in May 2012. Sean is in 1st grade this year and doing well, but does require special education support as he struggles to overcome some of the deficits he has as a result of all that he has endured. Sean also has a great therapy team supporting him at Children’s Specialized Hospital where he continues to go for rehab two days a week. This summer, he has been invited by his beloved Dr. Greenfield to attend a week at the Hole in the Wall Gang Camp for children with cancer. He can’t wait!
What is TEAMSean?
TEAMSean is dedicated to supporting the Ries family and is comprised of many family, friends, colleagues, and supporters. We are also committed to raising awareness for this deadly disease, and funding research at the Children’s Brain Tumor Project that will hopefully one day lead to a cure.
TEAM stands for Together Everyone Achieves Miracles
Together Everyone Achieves Miracles and can make a difference in the life of this child!
Sean was recently honored as an Ambassador of Hope for the Children's Brain Tumor Project at the Weill Cornell Pediatric Brian and Spine Center. His story is featured on their website at http://weillcornellbrainandspine.org/patient-story/parents-perspective-brenda-ries.
To find out more about Sean's story, go to www.CarePages.com and look for SeanRies (one word).