This Week in Neuroblastoma – 05-27-14

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This is a very tough week. Two children have died from neuroblastoma this week alone and another child, who is very close to our hearts had scan results come back showing a few isolated neuroblastoma cells in his marrow. This is absolutely gut-wrenching, and shows we need to fight hard still for these children. Our thoughts and prayers are with all these families facing the unthinkable.

Here’s this week’s links…

Kids – Why We Fight

Penelope’s Neuroblastoma Fight

With an extremely heavy heart we must share that another neuroblastoma fighter has died. Penelope Davis was diagnosed with stage IV neuroblastoma on January 22, 2014, when she was just 11 months old. On May 22, 2014, Penelope suffered kidney failure just two days after she had surgery on her tumor and on May 26, 2014, Penelope passed away. Please keep the Davis family in your

Reece Puddington dies of cancer aged 11

Our thoughts and prayers are with the Puddington family after hearing that their 11 year old son, Reece died after a 6 year battle with neuroblastoma. All throughout Reece’s battle he helped raise awareness of his condition and funds to help other terminally ill children enjoy time with their

Caden Shrauger

Caden Shrauger is very near and dear to our hearts and it completely grieves us to hear that Caden’s CT and MIBG scans are clear, however, doctors found a few isolated neuroblastoma cells in Caden’s marrow. What’s even worse is that there is no protocol in the situation Caden is currently facing and his parents are forced to make a decision as to what to do next for treatment. Currently, his family is asking for prayers for guidance and wisdom as to what the best choice would be for Caden. To follow Caden’s progress, please visit his CaringBridge page at:

‘She’s our warrior princess’: Girl, 3, who has spent half her life battling aggressive form of cancer is finally given the all-clear

Anya Bentham, 3, was diagnosed with neuroblastoma when she was 10 months old. After a long and frightful battle, Anya’s doctors declared her NED! “Doctors and nurses told us later that they didn’t expect her to survive more than a few weeks after her initial diagnosis” said Anya’s mom Naomi Stanley. This is such great news!

Non-Profits / Events / News

Black Diamond Police name Howie Koch as Chief for a Day

Black Diamond Police Department has reached out to a chronically ill child within the City of Black Diamond in order to not only give the child a day that focuses on their dreams, not their illness, but also to heap blessings on the child and family through a program called Chief for a Day. This year 3 year old Howard “Howie” Koch was chosen. Howie was diagnosed with Stage 4 Neuroblastoma in December 2013, at the age of just 2 years old. Along with making Howie Chief for a day, the Black Diamond Police Department also is actively requesting donations in the form of gas cards, toys for both Howie and brother Mason, gift certificates, and/or any monetary donations. You can follow Howie’s progress on Facebook at:

Cash will be raised in Sam Shaw’s name to aid others

5 year old Sam Shaw will continue to raise cash in his name to help other youngsters suffering from neuroblastoma even though doctor’s revealed that after 16 months of treatment Sam is NED! The money received goes to the Neuroblastoma Children’s Cancer Alliance and will be held in the case that Sam should need further treatment; if not, the money will go to families in need. To donate, visit www.just

FUNd Run set for June 5 at Veterans Park School in Ludlow in honor of Avery McAvoy

Veterans Park School will hold a FUNd Run in honor of Avery McAvoy June 5 at the school. Avery is a one-year-old girl recently diagnosed with Neuroblastoma. Groups of students and staff will be running/walking in honor of Avery. We hope there is a huge turnout for this event!

Three day music festival at Golborne pub in aid of Braiden Lee Prescott appeal

A Goldborne pub is staging a three day music festival in aid of Braiden Lee Prescott who is fighting neuroblastoma. Admission is free with money being raised through a raffle for prizes donated by local businesses.

A Big Place That Saves the Lives of Little People

Ariana Paxton is a five year old little girl from Idaho who has been diagnosed with stage 4 high-risk Neuroblastoma. Because Ariana’s immune system is so weak she must be held in isolation. Ariana can’t leave her room to do activities, art teacher Susan Micholson goes to her as does her music therapy teacher. Ariana’s latest scans say she is cancer free and next month the Make-A-Wish Foundation is sending her to the happiest place on earth! Disney World where she is excited to meet Aurora from Sleeping Beauty and

BLOOD DRIVE: Honoring Princess Camryn

”Princess” Camryn Storbeck died earlier this month after a courageous 3 ½ year battle with neuroblastoma. In honor and memory of this real-life princess, former staff, teachers and friends of Camryn will be holding a blood drive Tuesday, May 27th at Crestview Elementary School from 1 to 6 p.m. If you live near Clive, Iowa, you can schedule your appointment at

INBRACED awards $400,000 grant to launch an international neuroblastoma clinical trial

Solving Kids’ Cancer, the Neuroblastoma Children’s Cancer Alliance (NCCA UK), and Joining Against Cancer in Kids (J-A-C-K) awarded its first grant through their INBRACED (International Neuroblastoma Research and Collaboration for Effective Delivery) initiative, which aims to improve access of promising clinical trials for children with high-risk neuroblastoma in North America, the UK and in Europe. The grant amount of $400,000 will create a new immunotherapy treatment option in the U.S., UK, and in Spain, for children with relapsed or refractory disease. The initial phases of these trails have already shown some promising results in kids battling neuroblastoma in the US. This is great news!

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