Maya describes the day she was diagnosed with Wilms tumor as “the worst day ever.”
It was July 6, 2016, one month before her seventh birthday. Doctors immediately scheduled surgery to remove her left kidney, where the tumor was located. Two weeks later, Maya began her treatment plan, which included radiation and chemotherapy. But shortly after treatment started, more aggressive cancer cells were found in her tumor and Maya was placed on a more intensive chemotherapy plan.
With an irresistible laugh and the face of a cherub, 5-year-old Kellan wins the hearts of everyone he meets. No one even notices his wheelchair.
McKenna Claire was 7 years old when she was diagnosed with a rare brain tumor called DIPG. The McKenna Claire Foundation was established in her memory and in 2013, St. Baldrick’s partnered with the McKenna Claire Foundation to fund DIPG research, like the work done by Dr. Rameen Beroukhim at the Dana Farber Cancer Institute.
Honored Kid McKenna Claire was bright, spirited, and loved soccer and gymnastics. McKenna was full of grace, joy and grit through it all, even as her childhood cancer progressed and she could no longer run across a soccer field, jump on a trampoline, talk or swallow. She died just six months after her diagnosis with a rare, fatal type of brain tumor called DIPG – weeks before her birthday. She would have been 8 years old.
Stories like this are why St. Baldrick’s researcher Dr. Rameen Beroukhim studies DIPG, otherwise known as diffuse intrinsic pontine glioma. In fact, McKenna’s photograph hangs in his lab.
You helped save a child’s life. Meet Honored Kid Ori. He is in remission, because of a research breakthrough supported by St. Baldrick’s – and generous donors like you. Read on to learn more about this amazing kid and why he and his family are thankful for YOU.
Ori amazed his parents with his strength and positive attitude, even after years of treatment.
When Ori’s parents were packing to go to the hospital for the first visit – the first of many – they told the 2-year-old boy that they were going on an adventure.
And that’s how both he and his family have viewed his cancer journey ever since.
First comes Black Friday. Then Cyber Monday. Then, on November 28, it’s #GivingTuesday, the day when people around the world give back. This year, our face of Giving Tuesday is Honored Kid Grace – AKA the Ninja Princess. Why is she jazzed about raising critical funds for research? Maybe because researchers are cancer-fighting ninjas just like her!
7-year-old Honored Kid Grace loves everything pink, frilly and powerful. She’s been learning karate since this summer and recently earned her orange belt, even after relapsing with cancer.
When she relapsed in August, Grace’s first question to her mom, Melissa, was a question no parent ever wants to hear.
The 7-year-old asked, “Will I die?”
“‘No,’ we told her, because we were going to fight the cancer,” Melissa recalled. “‘Good,’ she said, ‘because I want to grow up and get married and be a mom.’”
Rightly known as the ‘Ninja Princess,’ Grace Ellen has fought for most of her life. Her parents affectionately call her their ‘alpha female,’ because, as her mom said, “she’s always known who she is, what she likes, and she doesn’t let anything get in her way. Not even cancer.”
Over a series of four blogs — read the first blog here — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Austin. This 9-year-old pioneer was one of the first patients to receive this revolutionary type of CAR T cell therapy, which was made possible because of the hard work of the St. Baldrick’s – Stand Up To Cancer Dream Team.
Continuing from Part One, Austin’s bone marrow transplant has failed and we find his parents at a dead end in terms of treatment options — until a ray of light appears.
During his treatment, Austin always just wanted to be a kid. After finishing a chemotherapy and radiation treatment, he’d often joyfully run out to his backyard to play on the swings.
The options were few and the stakes were huge, but the choice was clear for Austin’s parents. With their 4-year-old son months away from death, they had to choose hope – hope in the form of a clinical trial testing a promising gene therapy called Kymriah.
Kymriah. For kids with high-risk leukemia, those seven letters spell hope. But what is this lifesaving ‘living drug’? And how did this exciting new therapy come to be? Buckle your seat belts, because today we are starting an epic journey – a journey made possible by St. Baldrick’s supporters like you. Over four blogs, we’ll follow the path of this immunotherapy breakthrough – from the Phase 1 clinical trial to its recent FDA approval — and see the process through the eyes of the kids, families and St. Baldrick’s researchers who made this revolutionary research happen.
In Part One of our blog series, meet St. Baldrick’s Honored Kid Austin, a now 9-year-old cancer survivor whose last chance at life was the first human trial for Kymriah.
Honored Kid Austin was diagnosed with a high-risk form of acute lymphoblastic leukemia when he was 2 years old.
Kim Schuetz can’t forget the moment she saw the symptoms of her son’s childhood cancer. It was May 2011 and Austin was nearing his third birthday. Austin and his grandpa were playing together when the man noticed something odd. He called Kim over and together they crouched by the living room couch to look at large bumps on the sides of Austin’s neck.
Alyssa takes a selfie before shaving her head for childhood cancer research.
When Honored Kid Alyssa Greenwell says she’s a medical mystery, she’s not kidding.
“I really am a medical mystery,” she said. “My legs are in a medical journal.”
1. Over 80% of children diagnosed with cancer will be cured, joining the growing population of long-term childhood cancer survivors.
Thanks to advances in chemotherapy, radiation and surgical techniques, more children and adolescents are being cured of cancer every year. There were ~380,000 survivors of childhood and adolescent cancer in the United States as of 2010, and that number is expected to exceed 500,000 by the year 2020.
Honored Kid Amanda was just a year old when she was diagnosed with neuroblastoma and only a toddler when she died. This is why her dad, Ron Rozman, advocates for kids’ cancer research — so other parents and kids don’t ever have to endure the cruelties of childhood cancer. Read on for more about his exuberant girl, her tough fight and his advice on how you can become an advocate, no matter where you live.
Ron and Michelle Rozman cuddle and laugh with their daughter Amanda during a day at the park.
She loved to dance. Three-year-old Amanda twirling around and exclaiming, “Whee! Whee!” in sheer delight is a precious memory for Ron and Michelle Rozman.
It’s one of many favorite remembrances of their then-only child who was diagnosed with stage 4 high-risk neuroblastoma when she was 16 months old.
It is these memories that now fuel Ron’s dedicated efforts as an advocate for pediatric cancer research funding.
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