ATRT Is No Match for Ben
Honored Kid Ben was an astonishing 15 days old when he was diagnosed with a rare brain tumor. The tiny baby was a fighter and now, seven years later, Ben is cancer free. “He can hit his head and fall down and whatever. He just gets back up with a smile and keeps going like there’s nothing that stops him,” said his mom, Erin.
Ben was diagnosed with a rare brain tumor as an infant and has battled through every obstacle thrown his way.
Erin Worsham’s pregnancy was flawless.
The ultrasounds looked great. Everything went smoothly.
A week after he arrived, even the pediatrician remarked that Ben was perfect.
There was no indication of what was to come.
If Childhood Cancer Hadn’t Gotten a Hold of Her
Even though Ambassador Daisy’s scans show no evidence of disease, the evidence of her brain tumor treatment is something she lives with every day. “I think the hardest thing for me to grasp is that it took her smile,” her mom, Natalie, says.
Daisy finished treatment for medulloblastoma, a pediatric brain tumor, last year. Her facial muscles are partially paralyzed from the surgery to remove her tumor.
And Mom, I’ll Love You Always
We talk a lot about the parents of children with cancer, but they’re not the only ones whose roles take on new meaning when their child is diagnosed. Ambassador Chase’s mom, Ellie, gives thanks to her mom, Chase’s “Grammie,” for the way she’s loved and supported their whole family through childhood cancer and all of life’s ups and downs.
As a mother, from the first moment you hold your child — no, from the first moments you know they’re expected — you seek to protect them. You carry them and love them and do everything you can from first breath to stand between them and the hurt and pain in the world.
Ambassador Daisy Kicks Childhood Cancer Into the Past
Last Thursday marked two years since Daisy was diagnosed with medulloblastoma, a type of pediatric brain tumor. Now with no evidence of disease, Daisy is gaining new strength and confidence every day. Her mom, Natalie, reflects on how far Daisy’s come since that day in April 2013.
Daisy during and after treatment for medulloblastoma, a type of pediatric brain tumor.
‘I Had Cancer Too’: Joseph and His Family Go Bald to Help Kids With Cancer
Honored Kid Joseph Burken is two years post-treatment for a brain tumor, and he’s shaving his head with his family this weekend. Read on to learn about his childhood cancer journey and why funding research is so important to the Burkens.
Joseph, second from left, riding bikes with his siblings.
If you were to watch Joseph in motion, you’d see a normal 8-year-old boy running, laughing, riding his bike, and building Legos with his siblings. You’d probably never guess there was a tumor lying dormant inside his head.
In fact, until he was diagnosed with an inoperable brain tumor nearly four years ago, his parents never would have guessed it either.
What is Atypical Teratoid Rhabdoid Tumor (AT/RT)?
Dr. Lulla is a St. Baldrick’s researcher studying brain tumors in children. He explains AT/RT symptoms, treatment options, and how research is helping kids with AT/RT.
AT/RT is formally called atypical teratoid rhabdoid tumor. It’s an extremely rare type of brain tumor that mainly affects children under age 3. Occasionally, older children can be diagnosed with AT/RT.
Meet Chase
Chase loves baseball. So when he was diagnosed with an atypical teratoid rhabdoid tumor at just 2 years old, his parents used terms from his favorite sport to explain something no child should need to know — cancer.
A Tremendous Inspiration: Maddy’s Story
At 9 years old, Madelyn Bougard was diagnosed with a rare and deadly type of childhood cancer. A fashionista with a big spirit and an equally big heart, Maddy was an inspiration to those around her. Her father, Jim, shaved for St. Baldrick’s in her memory at the Mickey Byrnes Irish Pub event in Hollywood, Florida. Honor Maddy by contributing to her dad’s shavee page.
Madelyn with her parents. The 9-year-old was diagnosed with an aggressive type of childhood cancer called diffuse intrinsic pontine glioma, or DIPG, in 2010.
One day before church, Jim discovered that his daughter Madelyn had outgrown most of her wardrobe. But instead of dreading the trip to the department store as some guys might, he welcomed it.
The shopping trip meant his daughter was still growing — she was still alive.
Integrating Brain Tumor Survivors Back Into the Classroom: A Pilot Study
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Dr. Noll conducted a school-based study to help brain tumor survivors be more included by their peers. Photo by Sherrie Smith.
Brain tumor survivors are often left with physical and mental scars from their tumor or its treatment — things like slurred speech, jerky movements, memory problems, and learning difficulties, according to Robert Noll, Ph.D., a pediatric psychologist and St. Baldrick’s Supportive Care Research Grant recipient at the University of Pittsburgh.
These same kids are viewed by their peers as “different” and often have difficulty forming and maintaining friendships, Dr. Noll explained. “We know from doing work in classrooms previously that they are isolated, victimized, don’t have friends and aren’t well-liked, as a group,” he continued, adding that this puts them at increased risk for getting picked on and bullied. “I felt like I had an obligation based on the data to try to think of doing something that would make a difference.”
Forever an Inspiration: Emily’s Story
Emily was diagnosed with a brain tumor when she was 5 years old. An avid cheerleader and dancer with a vibrant spirit, she rallied everyone around her throughout her childhood cancer journey. Help kids like Emily. Get involved.
Emily was a cheerful girl who loved cheerleading and dancing, even during treatment for a glioblastoma tumor.
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