Benny and his family were on vacation in Orlando when a severe headache and vomiting landed him in the ER. A simple CT scan revealed he had a tumor in the back of his brain.
St. Baldrick’s Scholars Dr. Alex Huang and Dr. Agne Petrosiute are studying how switching off a protein could lead to new treatments and cures for kids with brain tumors. Read on for more about their unexpected discovery, its implications for immunotherapy, and why Dr. Huang compares himself to those fuzzy little bears in Star Wars.
Dr. Agne Petrosiute (left) and Dr. Alex Huang study how the immune system can be harnessed to fight pediatric brain cancer.
Dr. Alex Huang likens himself and his colleague, Dr. Agne Petrosiute, to Ewoks battling the Death Star.
“We are the Ewoks that found the controller on this planet, and all of a sudden the Death Star cannot put up the shield anymore,” he said. “And so now, Luke Skywalker can go in there and blow it up.”
It may seem like a curious explanation, but it fits.
Ambassador Isaac finished treatment for medulloblastoma almost four years ago. But today, on the five-year anniversary of his diagnosis, the effects of childhood cancer are still evident in his everyday life. Read what his mom, April, has to say about what survivorship looks like for Isaac.
People often say to me, “Move on. Let it go. He’s cancer free. We’re sick of hearing about it.”
Yes, it has been some time since Isaac finished treatment for medulloblastoma on August 24, 2012. He has made tremendous strides, and let’s face it — he’s still here and cancer free.
So why don’t I forget it? Why do I seem forever trapped in this cancer nightmare?
Mateo and Mason spent their early years of brotherhood playing together and acting goofy. When Mason was diagnosed with a brain tumor, the two brothers stayed strong, bonded by their love for soccer and for each other. This weekend, Mateo, now 16, will be shaving his head in honor of his little brother. Mateo tells his story below.
Mason (right) hugging his big brother Mateo.
I was 6 years old that day in July 2006 when my parents told me we had to go home to the United States because my brother was sick and needed surgery.
We were medically evacuated from Ecuador because my almost-4-year-old brother, Mason, was diagnosed with a brain tumor. It changed all our lives in an instant.
A long time ago, in a galaxy far, far away — well, all right, recently in South Dakota — there lived an Honored Kid named Ian. He was a Star Wars fan and a fighter, with a heart of gold and the soul of a Jedi master. In honor of Star Wars Day, we’re bringing you his incredible story. As Ian would love to say in celebration of today, May the Fourth be with you always.
Dressed in Jedi robes and armed with his lightsaber, Ian gets ready to save the galaxy.
Honored Kid Ian had the heart of a Jedi.
The young Star Wars fan fought valiantly against an evil foe while always thinking of others ahead of himself. He even had a lightsaber, Jedi robes and some really cool moves.
“He’s my role model,” said his dad, Rob. “I still try and strive, but the things he knew and the things he did — it was pretty amazing.”
2015 Ambassador Daisy relapsed with medulloblastoma in September 2015. Since then, she’s been through surgery, radiation and chemo. Then she went in for scans to see if the treatment was working. Daisy’s mom, Natalie, shares the results.
Daisy smiles as her mom, Natalie, gives her a kiss.
It had been 92 days since we heard the devastating news of Daisy’s relapse of medulloblastoma. Her brain and spine MRI was only a few days away, and emotions were high.
Her doctor at the children’s hospital told us that if the scan showed any progression of disease, treatment would stop. Our beautiful 9-year-old daughter would be put on palliative care.
How could words like that sink in?
During treatment for a type of brain cancer called medulloblastoma, Isaac was known as the kid with the smile. The little boy endured countless pokes, nine rounds of chemotherapy, 30 rounds of radiation and an extensive brain surgery. He had to learn to walk again and lost his hair four times. A determined kid, he always insisted on going back to his first grade class after each session of brain and spinal radiation.
Just mentioning herpes might make some people a little nervous, but in this story, herpes is the good guy. Read on for more about St. Baldrick’s Scholar Dr. Gregory Friedman’s work on a genetically altered version of the virus that could be the next targeted therapy for kids with brain tumors.
Dr. Friedman smiles with a young patient in an exam room at Children’s of Alabama.
St. Baldrick’s Scholar Dr. Gregory Friedman discovered that the herpes simplex virus, with a few modifications, will kill pediatric brain cancer cells — without causing cold sores.
Just days after learning her cancer had returned, Ambassador Daisy went in for surgery to remove the tumors on her spine. Her mom, Natalie, shares this update, along with a sweet video message from Daisy to you.
Last Thursday, Ambassador Daisy went to the hospital for a routine MRI. The next day, her parents received the worst possible news. “The second time is worse,” her mom, Natalie, writes. “So much worse than the first time because this time we are aware of the brutal realities … the cruelness that is childhood cancer.”
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