neuroblastoma

In 2011, Holly and Nick’s world turned upside down. Their 3-year-old daughter, Roxie, was diagnosed with neuroblastoma. Four years later, Roxie shows no evidence of disease, and the family is devoted to raising money for childhood cancer research and boosting the public’s awareness of a little-known disease.

Roxie was diagnosed with neuroblastoma at just 3 years old.

Roxie wanted to help. So, the little girl stood up on her hospital bed, grabbed the blood pressure cuff from its place on the wall and slipped it over her tiny arm. Remembering the sequence of buttons the nurses pressed, she let her little fingers do the walking and presto — the machine began to whir.

Just as the nurses arrived, 3-year-old Roxie had already started taking her own vitals.

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St. Baldrick’s 2010 Ambassador Khalid was just 2 years old when he was diagnosed with childhood cancer. Now, seven years have passed and he’s not just surviving — he’s thriving.

Four-year-old Ambassador Khalid flies a toy space shuttle in this photo from 2010, when he was chosen to be an Ambassador.

It’s been five years since Khalid was picked as an Ambassador for St. Baldrick’s and a lot has changed.

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Two decades after his passing, Anne remembers her son, Gary, who was diagnosed with childhood cancer in 1989. She misses him, but she knows her son wouldn’t want her to be angry or sad. Instead, she tries to live joyfully, just like he did. “I believe that we need to enjoy each day to the fullest and not muddle in the things we don’t like about life,” she said. “I choose to enjoy life.”

Gary was diagnosed with neuroblastoma at 21 months old. He had a tumor in his belly and behind his right eye.

When Anne looks at her twin grandkids, they remind her of Gary. They remind her to keep going. They bring her so much joy, just like he did.

They’re just a little older than Gary was when he went into the hospital for the final time.

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Anyone can get cancer — even babies. Dr. Erin Breese, a St. Baldrick’s Fellow studying infant leukemia, explains the signs, symptoms and treatment of babies with cancer, and how research is helping pinpoint better therapies so babies with cancer can grow up to live long, healthy lives.

Can babies get cancer?

Unfortunately, cancer can occur at any age including during infancy. According to recent statistics, roughly 23 of every 100,000 babies are diagnosed with cancer each year.

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It’s been three years since we first reported on a new treatment for neuroblastoma called MIBG therapy. Since then, a lot has changed and even more exciting developments are on the horizon. Here’s an update.

In MIBG therapy, a child is given an infusion of a radioactive iodine coupled with MIBG, a molecule which is absorbed by neuroblastoma cells. The MIBG molecule is taken up by the tumor cells and the radioactive iodine goes to work, killing the cancer.

Just a few short years ago, this therapy was hard to come by for kids with neuroblastoma. The trickiness of dealing with the radiation meant that just a few institutions offered it. For some families, hours of travel were needed to get their child access to the treatment.

That’s changed in a big way.

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St. Baldrick’s Scholar Dr. Muller Fabbri, of the Saban Research Institute at Children’s Hospital Los Angeles, just published exciting new research — he and his team learned that one of the keys to cancer’s survival lies in communication. Read on for how his discovery could unlock new gene therapies for kids with drug-resistant neuroblastoma.

Dr. Fabbri explains his research to a visiting group of St. Baldrick’s staffers.

Years ago, over a salad and a carton of yogurt at a campus deli, Dr. Muller Fabbri had an idea.

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Today, 2014 Ambassador Lauren is among more than 300 childhood cancer advocates in Washington, D.C., fighting to make childhood cancer a national priority. Here’s what she wants Congress to know.

As I prepare to speak on Capitol Hill for Childhood Cancer Action Days, I can’t help but look back on my grueling journey with pediatric cancer.

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Every year in honor of her son David’s birthday, Susan rides the 40-mile New York City Five Boro Bike Tour. This year, with their feet on the pedals, the wind at their backs (and sometimes their fronts), and 32,000 people riding alongside them, Susan and her friends raised over $4,000 for the David’s Warriors Hero Fund. Susan explains what the ride means to her.

Susan and her cycling friends in front of the Robert F. Kennedy Bridge.

In 2009 as our son, David, was battling neuroblastoma, one of his incredible Cub Scout leaders rode the New York City Five Boro Bike Tour in David’s honor. It’s a 40-mile ride touching each borough in the city, complete with amazing street music, skyline views that take your breath away, and an opportunity to feel the beat of the city in a way that is just spectacular.

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We’ve got some spectacular news. Really, really big news.

In the last 20 years, only two new drugs have been approved that were specifically developed to treat children with cancer.

Yesterday, that changed. Now there are three.

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Two lucky St. Baldrick’s staffers got to spend a day with St. Baldrick’s Honored Kid Micah, who’s currently taking part in a St. Baldrick’s-funded clinical trial at Children’s Hospital of Los Angeles (CHLA) for neuroblastoma, a type of childhood cancer. Here’s a glimpse into a day in the life of Micah, as seen through Alison and Kristen’s eyes.

Photos by Kristen Lynette Photography.

Asking a 4-year-old to sit still for 10 to 20 minutes can seem like an impossible request. Telling that same 4-year-old to sit in a bed for 10 to 20 hours is just crazy talk.

This crazy talk is something Honored Kid Micah had to do four days this week. Why? Because of childhood cancer.

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