Gene for most common childhood cancer identified

stained ALL leukemia bone marrow cells

An aberrant gene has been found to cause the most common childhood cancer in the world, pre-B cell acute lymphoblastic leukemia or ALL.

The gene, PAX5, has long been known to be involved in ALL. The new study indicates a mutation in the gene alone is sufficient to eventually cause the disease. ALL affects nearly 3,000 children and teenagers in the United States each year.

The discovery should make it possible to screen for the gene in families with a history of the disease and suggests new strategies for treating the disease, said Dr. Marshall Horwitz, professor of pathology and of medicine at the University of Washington. He is a co-author of the new study.

He was joined in the study by researchers at St. Jude Children’s Research Hospital in Memphis, Tennessee led by Dr. Charles Mullighan; Memorial Sloan-Kettering Cancer Center in New York City led by Dr. Kenneth Offit, and others at the UW. The results were published Sept. 8 in the journal Nature Genetics.

Read more

Momcology: No One Fights Alone

This guest blog post by Melanie Bimson is a co-founder of Momcology, Ultimate Hiker 2012, and mom to Piper and Pierce. Pierce has been a survivor since 2008.

Momcology

When you have a child, you prepare for a lot of different things. Preparing for a childhood cancer diagnosis isn’t typically one of them. When we were thrust into that world, our son was just 18-months-old, we were lost.

There are a lot of different routes that you can go when you hear your child has cancer. Some people choose to read anything and everything they can get their hands on, others worry constantly, some become angry. I chose to live our lives as we had, but be vigilant, and to enjoy life as much as we could. Also, I didn’t read anything about cancer. Statistics don’t matter when you are watching your child fight for their life.

Our family, like so many, went through huge changes – we went from cereal and goldfish to chemo and steroids. We had appointment after appointment, and endured scares where we almost lost our son. Through it all, I stopped spending time with friends. As kind and as concerned as they were, it became awkward. No one wanted to complain about their child having a rough night of sleep when they had just watched my bald toddler vomit in the corner.

Eventually, I shut down. It wasn’t until I met Kim Buff, a fellow cancer mom, that I realized I had a whole world of new friends that understood my feelings. Kim was the first friend who never said, “I can’t imagine” – because she could.

Over the first year of our friendship, Kim and I took a Facebook group she had started and turned it into Momcology, a grassroots movement that connects cancer mothers and primary caregivers. Our one little group has grown to more than 35 groups. We have diagnosis groups, regional groups, and specialty groups – even a group for dads. All of our members are immediately connected through a shared experience, and we are collaborating as a community of caretakers to change the way the childhood cancer journey feels. Whether in the hospital, or in a remote location in the middle of the night, there is always someone logged on to guide mothers through the huge celebrations and the impossible moments that are part of being a mother of a child with cancer. We communicate about everything – chemo, protocols, advocacy, awareness, schools, and we supply many virtual hugs from hearts that bear the same scars left by childhood cancer. Our goal is simple: No one fights alone…ever! This is how I (and the Momcology Community) GO MOM on cancer.

In the world of pediatric oncology, it is often the mothers who find themselves deep in the trenches of awareness, fundraising, and fighting for a cure. We usually do this as we are simultaneously caring for our child. We believe it will be the mothers who will ultimately push a final cure through the finish line, because quite simply; the stakes aren’t higher for anyone else.

To learn more about Momcology, please visit www.momcology.org.

Bronies for Good

Bronies for Good started when a group of Bronies, fans of the show My Little Pony: Friendship is Magic, decided that they wanted to help people in their community. They created an organization that was committed to fostering the growth of a global community of caring, socially conscious individuals through the organization of service events worldwide. Their first project was a month-long, community wide blood drive in 2010 called “Nurse Redheart’s Roundup.” After the success of this event, the group put together many successful events like toy drives and charity albums in the years that followed. What started as a small way to engage their community, turned into an international operation partnered with organizations concerned with gender equitable education and international development, such as Room to Read and Your Siblings.

This year, the Bronies for Good were looking for a way to give back to children with cancer and found that CureSearch for Children’s Cancer’s approach to funding innovative research and helping in the community matched their vision. When BronyCon 2013, a convention held for fans of the cartoon My Little Pony: Friendship is Magic, came to Baltimore, Bronies for Good decided to pair a charity auction with the event. The auction had more than 90 items from autographed Pony paraphernalia, custom crafts, art, and more. The audience of more than 2,000 fans helped raise $23,000 for CureSearch to support research in children’s cancer.

Because of organizations like Bronies for Good, CureSearch is able to continue to fund innovative and critical research, so that one day every child will be guaranteed a cure. To learn more about other organizations who are joining the fight against children’s cancer, click here.

“If I could do one thing, I would cure cancer.”

This Mom Goes MOM on Cancer

Christy Jones 2

When Christy’s son Gavin was 9-years-old, he was diagnosed with a germinoma brain tumor that was the size of an orange. After his diagnosis, he underwent surgery to remove the tumor, followed by chemotherapy and radiation. When Gavin was diagnosed, Christy’s heart broke; she couldn’t believe that they had found a tumor in her son. “Gavin was amazing he took everything so well, telling me, ‘it’s good Mom. They found what is wrong with me and I will be fixed and you don’t have to worry anymore,’” says Christy.  She took that spirit with her throughout treatment, trying to remember that if her son could handle it, so could she. No matter what, they were going to Go MOM on Cancer.

Treatment was terrible for the family; Gavin had trouble remembering simple tasks, and would be in immense amounts of pain, with no way to communicate it. “Watching your son get sick over and over and over again having no way to make him feel better at all,” says Christy. “That is my job – being a mother and taking care of him, and making him feel better. I couldn’t help him, I hated it.” She became an advocate for her son, looking for ways to comfort him during treatment, and ways to help him thrive now that he is cancer free.

Now three years cancer free, Christy and her family began looking for a way to help Gavin and others like him. They came across the Kansas City CureSearch Walk, and immediately signed up. They loved the sense of community that the Walk had, and can’t wait to return next year. “Walking for a purpose was great. It was amazing to see all the people come together to walk for a cure,” explains Christy.

Christy fought hard for her son throughout treatment and now she continues to Go MOM on Cancer, so that other moms don’t have to watch their children suffer.

“If I could do one thing in the world, I would cure cancer,” she says.

Go MOM on Cancer Launches September 1

MOM. It’s Not Just a Name. It’s a Verb.

Go MOM on Cancer

Who’s your favorite mom? Think about that for a minute.

Think about how she is, or was, with her kids. She is their teacher, playmate, disciplinarian, safety blanket, and best advocate. And, you know the difference between when she is MOMMY and MOM, right? When she’s in “MOM mode” and advocating for her children, you don’t really want to mess with her. After all, she is relentless, fighting hard, and sacrificing anything to help her children.

Well, this September during Childhood Cancer Awareness Month, at CureSearch we’re taking that “MOM mode” and making it into a verb. Because whether you’re a mom, a dad, a grandparent, sibling, doctor, friend, or anyone else who loves, or has loved, a child with cancer, you know that it’s that MOM energy that is required in the pursuit of cures.

So join us, and Go MOM on Cancer. Follow this link to learn more.

Meet the Children: Bree Lena Town

Bree Town for blog

What started as a suspected strep throat ended up being much more than that for Bree Town and her family. After her mother mentioned bruises, her doctor ordered blood tests. The results were not what the family expected. Bree was diagnosed with Acute Myeloid Leukemia (AML) when she was just 8-years-old, and was ordered to check into the hospital immediately.

Treatment was not easy for Bree. She suffered from numerous infections which caused her to be in isolation for 8 months. She was in constant pain, some days it was so bad, her family wasn’t sure she would make it. Luckily, Bree proved stronger than the cancer and successfully completed treatment in November.

Bree was able to return to school in February and is thriving. Though she has to get testing done to monitor any side effects of the treatment, she is glad to be getting back to normal. This summer, she and her family have been spending their time swimming, doing arts and crafts, and enjoying time outside.

To meet more amazing children who are battling cancer, use this link.

Child Life Specialist Webinar Offered

Are you a Child Life Specialist Looking for Additional Resources?

CureSearch for Children’s Cancer is pleased to provide a series of webinars for Child Life Specialists, made possible by a grant from Ronald McDonald House Charities. The last webinar in the series will take place on October 23 and will include information on pain management and palliative care.

Effectively using Pain Management and Palliative Care in Children’s Cancer Treatment
October 23, 2013
Techniques to address treatment anxiety, introduce pain management, and incorporate alternative methods of pain management

Pain management and palliative care are an essential part of the treatment process for most children’s cancer patients. In this webinar, experts will discuss distraction techniques for managing pain, the physiological responses in the body that cause pain, how to approach procedure anxiety, talking with parents about pain management and palliative care, and how alternative methods of pain management can be incorporated into a treatment plan. A guideline for care will also be presented that will ensure that the entire medical team is involved in a patient’s pain management and palliative care plan.

Use this link to register.

To view recordings of webinars from the rest of the series, visit curesearch.org/Child-Life-Specialist-Webinars/