ewing sarcoma

What is Ewing sarcoma?

Ewing sarcoma is a type of childhood cancer that is most frequently found in children and adolescents between the ages of 10 and 20 years old.

Ewing sarcoma — the second most common bone cancer after osteosarcoma — often originates in the long, large bones of the body, including the hip, thigh, shin, chest, and arm bones.

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Ambassador Alyssa celebrates two birthdays every year — one for herself, and one for her leg. Today, the anniversary of Alyssa’s first big surgery for childhood cancer, her mom remembers that day and shares how far Alyssa has come.

A joyful Alyssa is cradled by (left to right) her mom Michella, sister Kalie, dad Harold, and brother Jacob.

Someone recently asked me why December 16 is hugely significant to us as a family.

It’s the day my 11-year-old daughter Alyssa had a major surgery that changed her life forever.

It’s the day my sweet girl got a new leg.

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Dr. Ralph Ermoian is a radiation oncologist and St. Baldrick’s infrastructure grant recipient at the University of Washington. He explains what proton therapy is, how it works, and how this treatment is helping kids and adults with cancer.

What is proton therapy?

Proton therapy is a type of radiation used commonly for children with cancer. Like traditional x-ray radiation, it is used to treat cancers, but proton therapy affects less of the healthy tissue surrounding the tumor.

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One morning in the summer of 2013, Alyssa awoke to discover she couldn’t walk. The pain was intense and persistent. What her family thought was growing pains continued beyond that morning and into the next and the next.

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September is Childhood Cancer Awareness Month. Do something to help kids with cancer.

Lilly was born with Ewing sarcoma, a type of childhood cancer.

When Lilly was 6 days old I had noticed a little bump on her upper chest wall. After an x-ray and an ultrasound, the doctors told me it was a birthmark and it was normal for it to get bigger as she grew.

In three months it had grown to the size of a golf ball and was starting to affect her breathing while she slept. I knew then that it wasn’t just a birthmark.

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Shave your head for kids with cancer. Be a shavee℠.

Photos courtesy of Matt Janson Photography. See more of his work at mattjanson.com.

Here at St. Baldrick’s, we have the privilege of seeing a lot of beautiful bald heads. Whether it’s a #baldselfie on Facebook or a collection of inspiring event photos, we know that each naked noggin represents something wonderful: more funds raised for lifesaving childhood cancer research.

At the same time, a head shaved for St. Baldrick’s is a bold symbol that our shavees stand behind kids with cancer, who so often lose their hair during cancer treatment. Shavees let these kids know that they are not alone, that they have a friend in the fight against childhood cancers.

Photographer Matt Janson captured the shavee spirit when he set up a portrait studio at the Grand Junction, Colorado, head-shaving event in June. His second year at the event, Matt said it was the shavees themselves that drew him to St. Baldrick’s for another year.

“I’ve never been a part of any group that’s been able to take something so painful and turn it into a day of love, support, and remembrance,” Matt said. “I can’t even begin to describe how infectiously positive everyone is at the event.”

Here’s a look at a few of Matt’s portraits along with a few words from the shavees about what it means to be a shavee and why they believe childhood cancer research is a cause worth losing hair over.

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After trying everything to cure her cancer, Emily was given three months to live. Then something amazing happened — her cancer went away. Read Emily’s survival story and learn why she shaves her head to raise money for childhood cancer research. (You can be a shavee℠, too!)

Emily with two of her nurses in 2008.

At the age of 11, I was diagnosed with late-stage osteosarcoma of the spine and ribs. As is typical with bone cancers, I had been having pain for a couple of months. But it wasn’t until I injured my knee rollerskating and went completely paralyzed from the waist down that doctors found a grapefruit-sized tumor that had grown into four ribs, around my spine, and into my lungs.

They found it with a simple x-ray.

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Members of the Boston Cannons lacrosse team will be shaving their heads for children’s cancer research on August 9 and competing to see who can raise the most money. Donate to their efforts or sign up to shave your head with them!

Members of the Boston Cannons lacrosse team are holding a St. Baldrick’s Foundation head-shaving event on August 9.

From June 21 through August 9, the Boston Cannons are taking the fight to childhood cancer with a fundraiser for the St. Baldrick’s Foundation.

Team members Jack Reid, Matt Smalley, Jordan Burke, Brodie Merrill, Eric Hagarty, and head coach John Tucker will be shaving their heads in front of their fans at the August 9 home game. Until then, these six members are competing to see who can raise the most money, with the team as a whole looking to raise $5,000 for children’s cancer research.

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Your donation to St. Baldrick’s supports pediatric cancer research. Donate now.

Pediatric cancers are caused by genetic mutations. “However, since these mutations are unique to pediatric cancer, unique drugs need to be developed to treat these cancers,” explains Patrick Grohar, M.D., Ph.D., assistant professor of pediatric hematology-oncology at Vanderbilt University and a St. Baldrick’s research grant recipient.

Dr. Grohar is working to develop new drugs that target one particular mutation found in Ewing sarcoma tumors, ultimately yielding more effective and less toxic treatments for this form of childhood cancer.

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Rolando was diagnosed with Ewing sarcoma when he was 13. On doctors’ recommendations, Rolando and his family moved from Cuba to the United States to seek treatment.

Ask a parent of a child with cancer and they’ll tell you the same thing. Often, parents of children with cancer face these difficult questions daily, and the answers are never simple: How can I do more for my child? How can I be sure they are getting the best treatments available to them? How do I balance their needs with the needs of the rest of my family?

Tamara Peñaranda is one parent who can tell you firsthand about the sacrifices her family has made for her son, Rolando — sacrifices that, in the end, were a small price to pay for her son’s health and happiness.

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