Despite the excruciatingly painful treatments that Toby Pannone’s is receiving for the neroblastoma, a relatively rare and fierce cancer that has taken over his body, Toby is still able to enjoy the few days when he is not in the hospital. Recently he enjoyed time in Prospect Park and at the Brookyn Children’s Museum.

He and his parents, Mooki and Stephen are managing to stay strong and hopeful despite the living hell that they inhabit. Mooki’s writes, "Living with neuroblastoma is so singular, isolating and overwhelming,
that I feel like my words don’t even come close to describing what is
really going on in Toby’s life."

Recently Toby started a painful—but potentially helpful—treatment called 3F8, which is described here by Toby’s mom, Mooki on the family’s blog.

3F8 is mouse derived monoclonal antibody that is injected into the
bloodstream where it finds neuroblastoma cells, attaches to them and
then signals the patient’s own white blood cells to kill the
neuroblastoma. The white cells are boosted into “killer” cells through
daily injections of GM-CSF. With time, as Toby’s own immune system
recovers from chemo and becomes stronger, the 3F8 treatments may help
his body learn to fight tumors on its own. The aim is to give repeated
3F8s for up to two years, on a cycle of one week on, two to three weeks
off.

The main side effect of 3F8 is pain because it also attaches to a
marker on nerve cells. And the pain is excruciating. I can barely
describe it. And that’s the real reason why I haven’t been able to
write in two weeks. All I wanted to do by Friday was crawl into a dark,
quiet place, and not relive the experience by putting pain into words