“i’m Derek. life is worth living. no matter how bad things may seem there is always love
and some purpose for you. if you just love peace will follow. the world is too messed up to be
negative. being positive will change your life drastically. you will realize that your life is
nowhere near as bad as you thought.
live life, love much, laugh often.
Derek was a healthy thirteen year old boy that loved doing all the things that a teenage boy could love. In September 2006, Derek was diagnosed with Rhabdomyosarcoma, a very rare cancer that affects connective tissue. Derek’s world was instantly changed. He underwent multiple surgeries and a years’ worth of weekly trips to Children Hospital of Philadelphia (CHOP) for chemotherapy treatments.
He never complained or asked why him. He did what he had to do to get through those 12 months. Finally in September 2007, the doctors gave him a clean bill of health. His only requirement was to get periodic CT scans over the next few years. That fall, Derek returned to school, sports and his other favorite activities.
As the months went on, Derek became a more active teenager that loved spending time with family and friends. Whether it was fishing, skateboarding, playing soccer, or just hanging out with a guitar and his buds, there was a smile on his face. He had experienced one of the scariest things he could ever face, and now he saw the world with a new view. His new view: take nothing for granted.
Then in August of 2009, while playing goalie during a soccer game, Derek made a great save and in the process pulled a muscle in his thigh. The pain and ache he felt would not go away. So two weeks later the doctors ordered X-rays and an MRI as a precaution. Soon after, he was given the news that the ache he felt was not from a pulled muscle. The cancer had returned.
Derek and his family were shocked. His most recent scan (from July) had been clear. In one month the cancer returned and spread to his lungs, abdomen, back and neck. Derek began a chemotherapy treatment plan almost immediately. The only difference – the treatment option that was used the first time was less likely to work.
Options for Derek this time around were extremely limited. The only treatment options for rhabdomyosarcoma when it relapsed were from the 1970’s.
However, there was one more option that CHOP could provide Derek, a clinical trial drug beginning to be studied in pediatric patients. If he didn’t get accepted into the trial at that time, he would miss out entirely. The trial was only accepting a limited number of patients in the US.
The drug showed promise in the beginning with a 40% reduction in tumor size in the first 6 months of treatment. Derek was feeling pretty positive about his progress. The progress began to slow and the treatment was deemed completely in-effective. Derek was removed from the trial.
His only option was to start the existing treatment (from the 1970s) and hope the results would be positive.
By July 2010 Derek’s pain was so bad that he was readmitted into CHOP. Shortly after Derek became a hospice care patient. On August 4th 2010 at 10:54 p.m., surrounded by family and friends, Derek became an angel.
A few days after Derek passed his friends told his parents to look at Derek’s profile (written 5 months prior to his passing) on his Facebook page. Not being members, his parents joined and found the following:
Research is the answer to finding the cause and developing proper treatments for sarcoma. Sarcoma differs from common cancers, such as breast and lung cancer, because it is not usually related to a genetic or environmental cause.
Because it is so rare and the causes are unknown, there is no government funding available for sarcoma research. Many of the larger cancer research foundations also do not support sarcoma research.