This Week in Neuroblastoma – 05-01-14

As we come home rejuvenated and optimistic from the NMTRC Symposium about all the new Neuroblastoma research occurring, we still are faced with children dying, relapsing, or being diagnosed everyday with this horrible monster. We fully believe that a cure is in the future, but until then we will continue to raise awareness and funding for every child and family battling this disease.

Here’s this week’s links…

Kids – Why We Fight

Nineteen year old with Scott County ties succumbs to neuroblastoma

Jordyn Conner, 19, has died from neuroblastoma. Jordyn will always be remembered for making Easter brighter for patients at the Kentucky Children’s Hospital. “Jordyn has earned her wings and has gone home to be with the Lord. Thank you all for your prayers and support,” according to the Facebook page, Team Jordyn. Our hearts break to hear about another innocent child losing their battle to neuroblastoma. Our prayers go out to the Conner

Brave Merryn continues her illness battle

In August 2013, five year old Merryn Lacy was diagnosed with Stage IV Neuroblastoma. Three weeks ago, Merryn had a tumor removed from her right kidney in a three-hour operation after receiving 8 months of chemotherapy. According to Merryn’s father Michael, Merryn was up and dancing just 48 hours after her operation! Michael describes Merryn as very social and said the worst thing about her stays in hospital is that she can’t get to go out to play with her friends. “She loves One Direction and has started dance classes,” he said. “She also loves arts and crafts, painting and coloring, and is very creative. Our aims is to keep life as normal as possible for her while she continues her battle against her illness.” For more information on Merryn’s brave battle and to make a donation to her fund, visit .

Charlie Grantham’s cancer op delayed

An extremely vital operation for 2 year old Charlie Grantham has been delayed indefinitely after his sister came down with the chicken pox. Charlie was diagnosed with neuroblastoma in November 2013 and was suppose to be having a large tumor removed from his abdomen. Charlie’s mom Chrissy said, “I have no idea when it will be rearranged, but I can’t see it being that long because they want to get it done and get him on a high dose of chemotherapy.” We hope you are cleared for surgery quickly, Charlie!

Brave Oscar Knox has shown us we can be so much more

“I don’t want to be a boy anymore. I don’t want to be me” were the words of 5 year old neuroblastoma fighter Oscar Knox. Oscar was recently placed on hospice care after doctors revealed that his cancer has become unresponsive to treatment and continues to spread rapidly. Many have been inspired by this young child’s courageous battle and have changed their perspective on life because of him. Please keep Oscar in your thoughts and prayers.

Non-Profits / Events / News

Long Eaton concert is music to the ears of toddler with rare cancer

The family of a 3 year old Long Eaton little girl who has been battling cancer are planning to hold a concert to pay for her cancer treatment abroad. Sienna Riley was diagnosed with Stage IV neuroblastoma when she was just 20 months old. The Sienna Showcase on May 17th will feature songs and routines from films and musicals as well as comedy sketches and a charity raffle. To donate to the Sienna Riley appeal, visit

Marathon run in memory of Lexy

40,000 runners laced up their kicks and hit the pavement for 26.1 miles in memory of Alexander “Lexy” Strong who died from neuroblastoma in January 2013 at the age of 7. The event raised £2000 and will go to the Neuroblastoma Society. What a wonderful tribute to Lexy!

Inspirations: Help Chloe Ferris sing again

Like every other 5 year old girl, Chloe Ferris loves to sing, dance, and ride on her scooter; she wants to be a ballerina when she grows up. However, unlike other 5 year old girls, Chloe is facing a grueling battle against neuroblastoma which has made her extremely ill and has robbed her of her ability to walk. With six older brothers, three older sisters and loving parents Rebecca and Wayne, Chloe has an abundance of support and her family has just one wish right now,that Chloe will be able to sing again. Family friends have already been fundraising for a dream cottage for Chloe to play in when she can’t be around other children. Chloe, we are all praying that you will sing once again!

Va. students remember cancer-stricken classmate with Coins for Cody

“His smile — the smile that could light up the classroom. No matter what kind of day he was having, he would come into the classroom and he was happy to be there,” said Cody Johnson’s former Kindergarten teacher Barbara Colley. Cody Johnson was only 6 years old when he died in 2009 from neuroblastoma. Since his passing, classmates have kept Cody’s memory alive by establishing Coins for Cody. Every dime of it will be donated to neuroblastoma research. Coins for Cody is just one part of the Cody’s Crew Foundation. To learn more about the Cody’s Crew Foundation, visit:

Support floods in for brave five-year-old cancer sufferer

We shared the upsetting news last week that 5 year old Summer Allen has relapsed neuroblastoma. Since her family’s announcement, friends, family, and complete strangers have poured out their support to Summer. Her family has been told that NHS limitations mean she may have to travel abroad for life-saving medical support – at a cost of around £500,000 – meaning relatives are stepping up fundraising efforts for the Summer Allen Appeal, which is backed by the Families Against Neuroblastoma charity. Summer’s family is completely humbled by this flood of support for their daughter. “We are just so grateful for all the people who are in our lives, to every single person who wishes her well,” says Summer’s mother Sarah. To learn more about Summer and to donate to her appeal, please visit her Facebook page at

Video, e-mag and stories from our Pride of Hartlepool awards

The Pride of Hartlepool awards honoured the town’s most courageous and most inspiring people – and leading the way were four children of courage: Bradley Lowery (2), Saphere-Jae Espley (3), Callum Smith (2), and Lucy Wood (10). One of the four children who were honored is currently battling neuroblastoma. Bradley Lowery’s family established the Bradley Lowery’s Neuroblastoma Fight Group to raise funding in the case that Bradley should relapse. Bradley’s foundation has also raised thousands of pounds for another Children of Courage winner. Congratulations to all the winners!

Boy mostly alone in hospital room during unique cancer treatment

A 6 year old boy lays secluded in a hospital room away from his family, friends, favorite blanket and stuffed animals. Last week, Sammy Nahorny became the first patient at Comer Children’s Hospital to undergo high-dose radiation therapy for neuroblastoma called MIBG. Erin and Chris Nahorny interacted with their son primarily through a closed-circuit TV monitoring system and walkie-talkies and will have to continue to do so until Sammy’s radioactivity levels to drop closer to normal. The Nahornys created a foundation called Sammy’s Superheroes to increase awareness and funding for pediatric cancers. To learn more, please visit:

You can sign up to receive these weekly articles in your email. Sign up below…

Mind if we hang out
in your inbox?

We only email once or twice a month, always relevant to how we're working to beat neuroblastoma and other childhood cancers.

Thank you for subscribing!

Something went wrong.