Saturday, March 02, 2013

This 'Iron Man' inspires with his strength and his sweetness.

Jeffrey Hughes

I came across this headline today, "Young superhero has a team behind him: This 'Iron Man' inspires with his strength and his sweetness", and knew it was going to be a touching story. With all the bad news in the world it's always nice to come across one that inspires and encourages others while teaching others the value of life and that they are not alone in their struggles. Keep Jeffrey and his family in your prayers. Enjoy...

Excerpt LA Times:
Sounds strange, I know. But I hope you never have reason to meet Dr. Noah Federman, who makes his living saving children's lives.

It's a Monday; by Thursday they are talking about putting him in the hospital.
"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.
Jeffrey Receives Hello From Robert Downey, Jr aka Tony Stark/Iron Man
"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 two 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
"When I had my daughter, Jeffrey would snuggle with her, commenting how cute she was while simultaneously being sick to his stomach," says Lauren Walsh, who home-schooled Jeffrey. "No child should have to endure what he's been through. But somehow he's the one who is teaching me the lessons now."
Jeffrey has scars running all over his abdomen, but it doesn't stop him from playing with his Skylander Giants.
"When he's building Star Wars Legos, that's when we know he's feeling better," Annie says.
"He almost never cries, but the other day I noticed tears. He said, 'I wish could just be a kid who goes to school every day.'"
There's no hesitation from Annie, bouncing off the couch to climb into her son's hospital bed while telling the story.
"My job is cheerleader," she says. "Hey, I learned the Gangnam dance and he laughed. I'll do back flips if I have to.
"We have our moments too, but never in front of Jeffrey," she says. "We both started crying when we got a packet in the mail from the Make-A-Wish Foundation. No parent wants to get that packet."
Jeffrey's father quickly points out that Make-A-Wish is for kids with life-threatening diseases. "It doesn't mean they are lost causes," he says.
The toughest kid you really should meet has decided on a Make-A-Wish Disney cruise, but doesn't want to go until he can eat.
He hasn't really eaten since April, a popsicle here and there while being fed through a port in his chest.
"Let me tell you, I need hugs," says Jeffrey's father without embarrassment. "My son is injured, and so am I. We know we're destroying our child, but we have no choice. We have to keep killing the head of the snake or it will come back."
Annie listens to her husband, but says, "I don't need hugs. You're just a mom, and you just do it. Maybe it's not a normal life, but we have our son. And that's what is important."

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