Joey Chamness has grown up from being St. Baldrick’s very first Ambassador to become a longtime shavee and the VEO of his college event — helping fundraise for childhood cancer research to the tune of thousands of dollars. Why does he do it? Because this survivor knows firsthand how important it is to find better, safer treatments and cures for kids with cancer.
(Left) Joey rests and watches movies during his treatment for osteosarcoma. (Right) Now a survivor, Joey speaks during a St. Baldrick’s head-shaving event.
21-year-old Joey Chamness considers himself lucky.
When it comes to fighting childhood cancer, Honored Kid Tyler is a triple threat – he’s a survivor of kids’ cancer, a shavee and a nursing student! Why is he passionate about conquering childhood cancers? Because this three-time cancer fighter doesn’t want more kids to go through what he did.
Tyler smiles after his shave with 9-year-old Honored Kid Ally.
While Tyler was in the hospital, he became very good at pretending that he was asleep. He overheard all sorts of things – things that doctors liked to sugarcoat when he was awake. Like the fact that they thought he was going to die.
For Eric Haddad, head shaving isn’t just a one-time deal, because as the dad of a kid who fought brain cancer, he knows firsthand that the effects can last a lifetime. Next month, at the Rocky River event in Ohio, Eric will be shaving his head for the eighth time, while raising funds for research that he hopes will lead to better, safer treatments for kids with cancer.
During a past event, Eric shaves for his son, Shane.
When Shane Haddad was 4 years old, he started fighting childhood cancer. Eight years later, he hasn’t stopped fighting.
My kids are alive. My husband is alive. We are here and we are together. That is what I tell myself when the anger and bitterness take hold. My husband served the United States Army for over 22 years. During that time, two of our children, Collin and Patrick, were diagnosed with cancer.
Patrick and Collin are brothers and were both diagnosed with childhood cancer. Patrick, now 13 years old, was diagnosed with stage II intermediate risk hepatoblastoma, a rare cancer of the liver, in 2010. Collin, now 11 years old, was diagnosed with acute lymphoblastic leukemia (ALL) when he was 2 years old.
While my husband fought on foreign soil, I served our nation as a military spouse and tackled childhood cancer with our kids in North Carolina. As a family, we sacrificed so much for this nation and yet we ask so little in return – just a chance for a brighter future. The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act can get us there.
February 4 is World Cancer Day AND the 6th birthday of St. Baldrick’s Ambassador Kellan! Born with cancer, this kid started life beating the odds and defying limits, and that’s been his MO ever since. In honor of World Cancer Day and Kellan’s birthday, help us take childhood back from cancer.
Ambassador Kellan received his first wheelchair when he was 17 months old. He now has dreams of competing in the Paralympic Winter Games, a massive sporting event similar to the Olympic Winter Games, where athletes with a range of physical disabilities compete in everything from alpine skiing to ice hockey to snowboarding.
Elizabeth was driving her son Kellan back from his first skiing lesson when the boy lowered his voice to an excited whisper. ‘Mom,’ he said, ‘I have to tell you something.’
A childhood cancer survivor, Brittany Ross smiles during her long-awaited wedding day to her fiance, Patrick.
When Honored Kid Brittany Ross was told that she’d be lucky to live another three weeks, she didn’t react with sadness. She didn’t bury her head under her hospital bed blankets and cry or ask, ‘Why me?’
She was mad. She was fired up. She was determined to beat childhood cancer.
“They made it seem like I had no chance,” Brittany said of her diagnosis in December 2000. “At this time, I was like, ‘Look, I’m 15 years old. I haven’t really started living my life yet.’”
And she had a come-back that any teenager would be proud of.
Honored Kid Jack is selfless, brave, passionate, and funny. The seventh grader works hard, even when the odds are against him and if he could be friends with everyone in the world, he would be. In a word, Jack is special. Even cancer couldn’t take that away from him. And that’s what makes him a legendary hero to us — and this year’s League Champion of the St. Baldrick’s League of Legendary Heroes. You can be a legendary hero too! Get started today.
Jack was named 2018 League Champion for the League of Legendary Heroes because of his dedication to fundraising for kids’ cancer research. Photo by Courtney Van Alice Photography
Driving home from a visit with her sister, Vickie decided to run an errand. She pulled into the parking lot at Office Depot and stopped the car, expecting her son, Jack, to get out with her. But he didn’t.
“He’s like, ‘I can’t get out of the car, Mom. I can’t move,’ And I was like, ‘What? You were just wrestling with your cousin.’”
Over a series of four blogs — catch up with parts one and two about the Phase 1 trial — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Ori.
After relapsing for the second time and with his cancer spreading to his nervous system, Ori’s best chance at life was a Phase 2 trial of this experimental CAR T cell therapy. With a sunny attitude and staggering strength of spirit, Ori gave this new treatment a shot – with astonishing results.
Ori was in cancer treatment for much of his young life and throughout the journey, his strength and positive attitude have been remarkable. “He has been through so much, but has done it all with a great attitude and a smile on his face,” said his mom, Kaye.
When a child with cancer relapses the first time, their treatment options shrink. But when a child with cancer relapses again, their options and chances at survival don’t just shrink – they’re nearly extinguished. That is what happened to Ori.
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.
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