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.
Brooks was only 5 years old, but he had a passion for life! He loved dance parties, Hot Wheels cars, monster trucks, Legos and video games.
His favorite holidays were Christmas and the Fourth of July, and his favorite sports were baseball and soccer. Brooks knew every pizza joint in town and loved salami sandwiches. He enjoyed taking walks to look for rocks or shells on the beach.
When you meet Julia, you know right away there’s something special about her. Perhaps it’s her bright smile or her exuberant joy and compassion for others. But this 11-year-old girl is super!
In fact, that’s her family’s favorite nickname for her — “Supergirl Julia” — given in honor of her courage and determined spirit during her cancer journey.
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.
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.
« Newer PostsOlder Posts »