Rebecca smiles with her 2-year-old daughter, Sophie.
Childhood cancer had already taken so many things from Rebecca Morrow. During treatment, her hair dropped out twice. She missed her entire seventh-grade year. Her social life evaporated. The treatment devastated her developing body. Sometimes when treatment got really tough, her drive to survive crumbled.
So, when the doctors told a teenage Rebecca that she’d likely never have children of her own, she shrugged it off.
Rebecca had already lost so much to childhood cancer. What was one more thing?
In honor of National Siblings Day, we bring you an amazing story of a brother’s love and dedication to honor his sister and raise money for childhood cancer research in her memory. Meet Geordan, a long-time shavee and the proud big brother of Honored Kid Rayanna.
Rayanna and Geordan share a sweet moment.
When Geordan shaves with St. Baldrick’s, his sister is there. When he drives his race car, she’s with him. When he walks the halls of his high school, rocking his bald head, Rayanna is never far away. The little girl is always with Geordan in his thoughts, hanging around her brother just like she did before childhood cancer took her away.
“Rayanna was my only full sibling and now it’s just me,” the 16-year-old said. “I miss Rayanna and wish there had never been childhood cancer.”
Zach is a cancer warrior. He is courageous, strong and has fought cancer three times.
Diagnosed when he was 6 years old, Zach beat cancer for the first time after nearly four years of treatment. Then, at age 11, he knew it was back. Zach powered through almost three more years of treatment with a positive attitude.
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.
St. Baldrick’s Scholar Dr. David Barrett gives us an inside look at immunotherapy, and we meet the first pediatric patient to ever receive this new cancer treatment.
Emily Whitehead, the first pediatric patient to be treated with immunotherapy, 18 months post-treatment and starting third grade.
For most of us, our immune systems fight off disease every day. A healthy immune system can even fight off life-threatening diseases like cancer. And when we do get sick, a healthy immune system attacks sickness and help us get back to feeling like ourselves again.
It is a different story for kids with cancer. A child with cancer has a suppressed immune system. It’s as if a blindfold has been pulled down, and the body is unable to target invasive cells. You might say the immune system is asleep.
What if doctors could wake up a sleeping immune system?
St. Baldrick’s supporters, this is a day to celebrate! You have helped make history. Today, the FDA approved the first gene therapy available in the United States. Called Kymriah, it’s an entirely new way of treating cancer and it’s saving lives.
This “living drug” is for patients with a type of acute lymphoblastic leukemia (ALL), a cancer of the blood and bone marrow and the most common form of childhood cancer. Scientists genetically modify a patient’s own immune cells in the lab, then infuse these new cells back into the patient’s body. These modified cells – called CAR T cells or chimeric antigen receptor T cells – then prompt the child’s own immune system to attack and kill leukemia cells.
What do childhood cancer researchers do when they see a problem? They band together to solve it. Read on to learn why institutions across Texas and California are joining forces and what they’re doing to help kids with cancer.
Dr. Philip Lupo is the principal investigator of the REDIAL Consortium, as well as an Associate Professor of Pediatrics at Baylor College of Medicine and Co-Director of the Epidemiology Program at Texas Children’s Cancer and Hematology Centers.
Years ago, St. Baldrick’s researcher Dr. Philip Lupo and his colleagues at Houston’s Baylor College of Medicine noticed a problem.
According to studies they read and stories Dr. Lupo heard from clinicians, kids who are Hispanic don’t do as well on treatment as other kids with acute leukemias. They are more likely to experience complications and are at higher risk of relapse than kids of other backgrounds.
But scientists don’t know exactly why that is.
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