This Week in Neuroblastoma – 11/7/13

A new place with lead-lined walls, a beerfest raising money for charity, some very cool teenagers and a couple of tough little fighters to introduce you to – yep, a busy week.

Here’s this week’s links…

Kids – Why We Fight

Clodagh Daly

Clodagh turned one on Halloween this year. Eleven months out of the twelve that she’s been alive, she’s been battling stage 4 neuroblastoma. Clodagh was diagnosed at just five weeks old. She has undergone chemo, radiotherapy, surgery and is now undergoing immunotherapy. Her parents know that relapse is likely with neuroblastoma, and are doing what they can now to prepare for the possible trip to the US for treatment.

Lily Vidler

After six months of misdiagnoses, Lily, who is almost two, was diagnosed with neuroblastoma. She has a tumor that is embedded in her stomach and attached to her spine, but because the symptoms of NB mask themselves as symptoms of common childhood illnesses, doctors kept missing it. Treatment has now been started in hopes that they can soon operate to remove the tumor.

Non-Profits / Events / News

House of Fears

It may sound scary, but the House of Fears actually did something pretty cool this Halloween. They hosted a trick-or-treat trail and haunted house to raise money for 7-year-old Bailey Bennett, who is suffering from neuroblastoma.

Caravanners big fans of FAN

Every year, Caravan Park of Snettisham chooses a charity to raise money for. This year, they chose FAN, Families Against Neuroblastoma. Over £6,500 was donated to the organization, and the entire community helped raise it!

Texas Tech Explores Immunotherapy

There are a lot of technical terms in this article, but we’ll sum it up for you in a few pretty sentences. Through recent research, the Texas Tech School of Medicine has made some important discoveries regarding the combination 4-HPR and passive immunotherapy with ch14.18/CHO. This will serve as a starting point for future clinical trials for patients with high-risk NB.

Hartlepool Beer Festival raises £10,000

Hartlepool Round Table raised around £10,000 this year with their Beer Fest. They have chosen two charities to split the proceeds, one of them which is an appeal to raise £500,000 for overseas treatment for two-year-old Bradley Lowery. Brandon is having a rough couple of weeks with treatment, and he and his family could use some prayers!

Sam Shaw Comes to the US

Sam Shaw has finally headed to the US to begin immunotherapy, and he did it in style! He got to sit in the cockpit of the plane when he arrived in Philadelphia. Sam and his parents are gearing up for a lengthy stay here in America, but are hoping that Sam is able to adjust to his new surroundings. His biggest complaint right now? “People talk funny here.”

Students Recognized for Being Awesome

Superintendent Maria Rianna and the Glen Cove Board of Education recently recognized some really cool kids for their philanthropy. Present and past members of the Finley Middle School National Junior Honor Society were commended for a car wash they held in honor of Nicholas Pedone, who lost his battle with neuroblastoma just before his 8th birthday.

New Facility Offers Targeted Treatment

The little superheroes fighting neuroblastoma now have their own lead-lined lair at The Hospital for Sick Children. The facility will allow high dose radiation to be given to patients with relapsed neuroblastoma.

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