Cecilia was diagnosed with anaplastic medulloblastoma in January 2012 at the age of 14.  She had been experiencing morning headaches and vomiting on and off since about September 2011 but the pain would go away quickly and she had not missed any school or other activities. But on January 10, 2012, her headache was so bad that she stayed home and we went to our pediatrician who sent us for an MRI the same day. The next day we took her to the pediatric emergency room where she was admitted to Johns Hopkins Children’s Center. Two days later, she had surgery to remove the brain tumor and the cancer diagnosis came the following week. After diagnosis, the oncologists wanted a second surgery to make sure that there was no tumor left from the first surgery. During the second surgery, she also had a lumbar puncture to check for cancer cells in the spine and the IV port placement to draw blood for labs and receive her chemo and blood transfusions. The good news, she had no sign of cancer in the spinal fluid, the bad news, she was facing about a year of treatment, multiple hospitalizations, many likely side effects followed by another year to recover from the treatment.  In February through March, she had daily radiation with some chemo and in May started the monthly in patient chemo treatments. She experienced side effects immediately and spent almost all of 2012 in the hospital. In addition to the scheduled monthly in patient chemo, she also needed to be hospitalized in between for fevers, various infections, a lot of pain and severe weight loss. She struggled daily with pain, intestinal problems, depression, fatigue, nausea, double vision, dizziness, balance problems and inability to eat solid foods or take enough fluids by mouth.

Cecilia is now 17 years old and her recovery since the end of treatment in November 2012 has been very slow but she pushes herself daily and continues to make progress. She currently attends school full time as a high school junior and participates in 2 after school clubs. She will graduate on time in 2015 and plans to go on to college. She receives physical and occupational therapy weekly to help with her strength, endurance and balance.  While most of the side effects from treatment have resolved, she continues to struggle with daily vomiting and regular fatigue. Also, she hasn’t completely regained her sense of taste and smell and takes nightly liquid nutrition through her gastrointestinal tube. But she eats small meals during the day and keeps trying new foods to increase her diet. She uses a walker or a cane because she is still working on regaining her balance.

Written by Carrie Colison, Cecilia’s Mom
April 2014