This Week in Neuroblastoma – 7/15/13

Loss, hope and fellowship. Much like a battle with neuroblastoma, a mix of emotions roll through this week’s stories.

Here’s this week’s links…

Kids – Why We Fight

Sam Shaw

Good news! Sam Shaw has undergone a successful surgery to remove the remaining tumor on his adrenal gland. His doctors say they think they have managed to get the entire tumor. Woohoo! As if that weren’t enough to celebrate, the Sam Shaw appeal has hit the £190,000 mark on their £250,000 appeal to get Sam to the US for immunotherapy. We hope you have a quick recovery, Sam!

Millie Heaton

Two-year-old Millie was diagnosed with stage IV neurbolastoma earlier this year. She has been undergoing TVD chemo to clear the cancer from her bone marrow. Her body seems to be responding well, and if things continue to progress, she is scheduled to have the tumor in her stomach removed in September.

Adam Bird

We are sad to share that nine-year-old Adam Bird has passed away. After he was diagnosed with neuroblastoma in 2009, his parents raised the hundreds of thousands of dollars needed for immunotherapy. Despite undergoing treatments since 2011, Adam’s aggressive cancer could not be overcome. His father says that he was happy to have a few months with Adam at home, but that the time had come to let go. “Letting go, not giving up. Letting go … the easiest thing of all … and the hardest thing of all.”

Non-Profits / Events / News

Grant for NB Research

Dr. Jason Shohet of Baylor College of Medicine and Texas Children’s Cancer Center has received a grant from Braden’s Hope for Childhood Cancer to support his research for new treatments for high-risk neuroblastoma. Dr. Shohet hopes to develop tumor-specific therapies to target neuroblastoma.

Trial Patient is Cancer Free

The first patient in Washington to try a new cancer therapy is CANCER FREE! 23-year-old Lynsie Conradi is battling leukemia for the third time. Her cancer had become resistant to chemo and her survival rate was less that 20%. Researchers urged her to try a new therapy, which entailed a man-made gene being added to Lynsie’s t-cells and returning them to her body. Seven days later, they found no disease in her bone marrow. Amazing!

New Hope In The Fight Against Childhood Cancer

Researchers in the Antibody and Vaccine Group have developed and are exploring three new antibodies that may potentially increase the body’s ability to fight off cancer. These antibodies would essentially “wake the T-cells up from their slumber and thereby restore the anti-cancer activity to attack the tumor”. The treatment would benefit children with forms of cancer that do not respond well to chemo, children like McKenzie-Blu Kemish. McKenzie-Blu was diagnosed with a rare form of NB that could not be treated by chemo. Fortunately, removal of his tumor has found him cancer free. With the chance of a relapse looming over the family, McKeznie-Blu’s mom says that knowing the possibility of a new treatment is available gives her new hope.

Monique Newton Gives Lilly Encouragement

Monique Newton was diagnosed with neuroblastoma at the age of three. Doctors told her parents that she would not live past her fifth birthday. She proved them wrong!! The 21-year-old has been cancer free for 15 years now. On Sunday, Monique ran the British 10k in to raise money for Lilly Macglanshan, who is going through the same battle Monique did as a child. Monique says, “There aren’t many adults around that have been through what I’ve been through.I wanted to do something to show them that this can be beaten, and give them hope, and this is the best way to do that.”

It Takes Two

Jennifer Gifford, a single mom, was devastated when she found out that her 12-year-old son had neuroblastoma. His cancer has spread from a large tumor on his adrenal gland to his shoulders, spine and hips. Jennifer called her close friend Ivy Gueco first, and has received a great amount of support and love from her. She credits her friend for keeping her positive during such a dark time.

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