T.J. SIMERS

Young superhero has a team behind him

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"We sense something is really wrong," says Jeffrey's dad. "We want one more night with our son so we take him home."

That night, Mom, Dad and child sleep together.

Friday, life changes. Jeffrey has a cancer so rare there are only a couple of hundred cases known in the country. It has a 20% survival rate. Some stomachache.

"What does 20% mean to a parent?" says UCLA's Federman. "It means there's a chance."

Jeffrey's father hears the diagnosis, though, and gets mad. He walks out of the hospital, across the street and downs two glasses of vodka before falling to the floor.

Annie, Jeffrey's mom, remains and listens. She has no idea until now what "sarcoma" means, or DSRCT, which is short for desmoplastic small round cell tumors. But she will.

When she hears the name of a doctor in New York who might help she wants to take her son to the airport.

That was 12 rounds of chemotherapy ago, five weeks of radiation, complications, trips to the emergency room and five operations to remove 14 tumors from their son's tummy.

There are also too many nights to count, Mom or Dad sleeping on the couch in the hospital, always one of them here.

During this time Annie loses her father to lung cancer.

"There's so much to do," Annie says. "I cannot stop to think about all this or I'll be curled in a ball in the corner of the room shouting, 'No, no, no.'"

As good news goes, there is "no evaluable disease" detected at this time in Jeffrey's abdomen. But this cancer is so aggressive that Jeffrey will have to receive chemo treatments once a month for the remainder of his life, or until a better treatment is discovered.

"We know not everyone overcomes cancer," Jeffrey's dad says. "Right now there's a mother holding her 4-year-old son in hospice with the same disease, knowing he's about to die.

"But why shouldn't Jeffrey be part of the 20%? He's our Iron Man."

They are broke now, but they will find the money to make the $1,000 monthly insurance payment because as Annie says, "You do what you have to do for your child."

They remain together as a family, the plan to check Jeffrey out of the hospital for a couple of hours to attend the UCLA game with everyone.

Faith is important to them, as is giving their child a good time when possible.

They are seeing a therapist and relying on anyone willing to help as their lives continue to change.

They call it "Jeffrey's Team," which includes a masterful surgeon in New York and Federman & Co. at UCLA. "We couldn't do it without others," Annie says. "When I need help with our other children, I call another mom and there is always one there."

Krista Strauss, another team member, organized a "walk for Jeffrey" and a website to raise funds at jeffreyhughes.shutterfly.com.

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