With the shock of diagnosis still overwhelming, we set out to find the
treatment plan that would give Evan the best chance. We quickly
learned that opinions varied widely on this subject, particularly among
the experts. With no definitive cure, we were left to make the hard
choices. We were constantly searching for the magic bullet that would
put an end to our nightmare. Of course, there were no magic bullets,
particularly after Evan relapsed less than a year into treatment.
Phase I and Phase II clinical trials became our standard of care as we
tried to beat back Evan’s cancer while maintaining some quality of
life. “Home” became one of three places: Children’s National Medical
Center in Washington, D.C., Memorial Sloan-Kettering Cancer Center
in New York and Children’s Hospital of Philadelphia. All totaled, Evan
relapsed seven times, five of which were in the brain. Each time, he
amazed us and his doctors with his resolve to keep going.
No child should ever have to endure what our son endured: seven
surgeries, over 150 toxic chemotherapy treatments, 25 excruciatingly
painful courses of immunotherapy, months of intense radiation
therapy and an endless stream of CTs, MRIs, bone scans, blood
draws, shots and other grueling procedures, all resulting in over 100
nights in the hospital. Pain, nausea and discomfort were constant
companions. Toughness and resolve were Evan’s response.
One treatment in particular stands out: 3F8, an immunotherapy that
he received at Memorial Sloan-Kettering Cancer Center. “Controlled
torture” is one way to describe this antibody treatment that left Evan
screaming in pain for 30 minutes, until his “rescue” narcotics kicked-in and he passed out. The rest of the day was a mixture of lingering
pain and lethargy until we returned the next morning to do it all again.
Evan’s story is important because it reminds us of the urgency that is
needed in the fight against pediatric cancer. While five-year survival
rates for children with cancer (age 0 to 14 years) approach 80%,
there are certain pediatric cancers, such as neuroblastoma, where the
survival rates are very poor. Therefore, we call on Congress to provide
the resources necessary to the National Cancer Institute to remove
cancer as the leading cause of death from disease among children.
Although we lost Evan to neuroblastoma in October of 2010,
neuroblastoma did not define him. Neuroblastoma never stood a
chance with Evan. He survives in the hearts of everyone he met. It is
in Evan’s memory that we have dedicated ourselves to finding better
treatments and a cure for this devastating disease. To learn more,
please visit Evan’s Victory Against Neuroblastoma Foundation, at