This Week in Neuroblastoma – 4/29/13

Congratulations to Oscar Knox are in order this week; he has kicked cancer’s butt! We’re also learning about some big changes and advancements in NB treatment.

Here’s this week’s links…

Kids – Why We Fight

Ryan Wright

18-month-old Ryan Wright is fighting for his life. Suffering from a neuroblatoma relapse, doctors have given Ryan only weeks to live, and his family is desperate to raise the £500,000 needed to get him to New York for surgery to remove a brain tumor. To help raise money, 21-year-old Ev Boothby has put together an urgent concert. The show, which took place last night, had 12 acts including magic, music, comedy sketches, dancing, and a guest appearance from Norfolk comedian Pat Nearney. Ev is hoping that enough money will be raised to make a dent in what is needed for Ryan to get treatment. We’re praying for you and your family, Ryan.

Oscar Knox

Great news; Wee Oscar Knox has been given the ALL CLEAR! Oscar’s family tweeted on April 22nd: “Today we got the most unbelievable news, NO cancer can be found in Oscar’s body. HE DID IT!!!!” Four-year-old Oscar captured the hearts of thousands, both in his hometown of Mallusk, Ireland and beyond, while battling neuroblastoma. We’re so glad to hear that he is doing well.

Non-Profits / Events / News

Dad Completes Marathon in Memory of Son

Chris Noble and his wife, Sarah, should be getting their son Alex ready to start school this year. Instead, Chris is preparing himself to complete Maggie’s Monster Bike and Hike in Alex’s honor. Alex Noble passed away after battling neurbolastoma in 2010. The Noble’s are making the most of their grief by raising money for Maggie’s Centres, which proved support for people affected by cancer and have provided much needed support for Chris and his family. Maggie’s Monster Bike and Hike includes a 31 mile cycle and 41 mile hike between Fort William and Inverness in 24 hours. Remembering his son, Chris says, “He lived to the full and his life has inspired me to take part in a series of challenges, the last of which will finish the day before his fifth birthday.”

Toxicity Study

Changes in treatment for high-risk neuroblastoma patients are on the horizon. According to a recent study, the United States stem cell transplant regimen is more toxic than the equally effective regimen being used in Europe and Egypt. This study was presented at the 26th annual meeting of the American Society of Pediatric Hematology Oncology in Miami April 24-27th. The two regimens are being evaluated and the COG is considering switching approaches, which could lead to less liver and kidney toxicity and lower changes of bloodstream infections.

First National Clinical Trial for Incurable Children’s Cancer

The first national clinical trial ever approved to study all incurable children’s cancers is underway at Van Andel Institute in Michigan – and we fund a part of it! 25 percent of the 10 thousand pediatric cancer diagnoses each year are considered incurable. This new study will analyze the molecular makeup and genetic mutations of each individual tumor and aid in developing a personal treatment plan for each patient. The study is not using experimental drugs, but instead using the analysis of the tumors to determine which off the 200 drugs already available would be most effective. Three-year-old Abigail Goss, a neuroblastoma patient, was the first child to enroll in the new trial. Her mother has high hopes for the study saying, “If you can test the individual tumor and base a treatment plan on the individual tumor, you are not just throwing darts in the darkness, you at least have a flashlight.” Read more about the ins and outs of the trial here.

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