Our son Chris was diagnosed mid-July 2014 with stage IV high-risk neuroblastoma after what was believed to be an orbital fracture causing his eye to bulge from its socket turned out instead to be a large metastasized tumor growing behind his eye.
We had absolutely no indication he was sick. The first hospital we were at told us that no clinical trials were available and we immediately, at the urging of a family friend, transferred to The University of Chicago Comer Children's Hospital; once there we never looked back.
When we arrived Chris was at risk of losing both his eyesight and his eye. The doctors scrambled for a plan of action because they weren't willing to sacrifice his eyesight yet they didn't want to take any immediate steps that would jeopardize his eligibility for enrollment in a newly opened study being conducted by Dr. Susan Cohn, a renowned oncologist/hematologist in the field of neuroblastoma.
Nuroblastoma is a difficult cancer to treat/cure and children who relapse have roughly only a 10% chance of survival. MIBG therapy, a liquid radiation that seeks out, attaches to, and destroys neuroblastoma cells is traditionally used in relapsed patients and is the only treatment known to work. The thought behind the study is that if MIBG is effective in killing mutated, stronger cancer cells in relapse patients why wait for a child to relapse but rather use it up front to increase their chances of being cancer free?
We eagerly enrolled Chris because we felt we had nothing and everything to lose. We signed the papers that night and the next morning they began chemotherapy. His eye completely went back to normal and because of their quick thinking his sight wasn't compromised at all. He completed the clinical trial phase of his treatment plan in December and his scans afterwards showed that he is currently “no evidence of disease.”
The last leg of his protocol called "immunotherapy" was once a clinical trial and because of those parents who enrolled their children our Chris has a greater chance of being declared “cancer free.”
It is through research like these trials that the survival rate for neuroblastoma has steadily increased since the 1970s from 10% to 50%, but there is still much to be done.
We are grateful that we just happen to live in the Chicagoland area and have access to these incredibly talented doctors who are constantly searching for a better way to treat and cure neuroblastoma. If our son's enrollment in the MIBG trial positively impacts the life of another neuroblastoma child down the road then it was well worth it.
To every clinical researcher developing new drugs and therapies around the world, you are truly one in a million. Thank you for saving our son and for everything that you do.
The Ellis Family
Danielle, Ted, Maria, Chris
Interested in learning more about clinical trial participation and ‘Medical Heroes’?
Please visit the Center for Information & Study on Clinical Research Participation at www.ciscrp.org.