When their daughter Kimmy was diagnosed with leukemia, Daniel and Taimi Hachey were told her disease had a 90% survival rate. Later tests showed Kimmy had Philadelphia chromosome-like precursor B-cell acute lymphoblastic leukemia, a rare type, difficult to treat. The adjusted survival rate? Only 50-60%. Her diagnosis went from, “The cure rate is high,” to “We are very concerned about her outcome.”
Have you heard of a St. Baldrick’s Hero Fund and wondered what it was — and maybe whether you should have one? Here are the basics, along with how a few families feel about their experience.
In 2017, I was diagnosed with anaplastic large cell lymphoma. It was a shock. I immediately started my first of six rounds of chemotherapy. Every month, I would have to go inpatient for one week for treatment. Unfortunately, I relapsed two months after completing that. I then got a second opinion and did two clinical trials, and when those failed, I went on to Memorial Sloan Kettering (MSK) in New York. One trial failed, but the next finally got me to remission, allowing me to get a transplant.
What does your support of childhood cancer research really mean? See what Carlos Sandi has to say about what a difference the St. Baldrick’s Foundation and specifically the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, have made to his family.
What do you do when you’ve been told your child has maybe 3 to 6 months to live? As the saying goes, “You get busy living or you get busy dying.” That’s the situation Kim and Jeff Schuetz were put in when their son Austin relapsed not once, but twice after treatment for Acute Lymphoblastic Leukemia (ALL), the most common type of childhood cancer.
It’s tough to beat pizza as a kid-friendly food. Birthday parties? Pizza. Not sure what to eat for dinner? Pizza. But on this National Pizza Day, February 9, 2020, there’s a connection between pizza, kids with cancer, and a pay-it-forward movement that continues – nearly 7 years after a girl named Hazel started it with a hand-crafted sign from her hospital room.
This Is the Message That Started It AllLittle did Hazel’s grandmother and mother know, the hand-made sign meant to cheer Hazel up during treatment would go viral.
St. Baldrick’s League of Legendary Heroes recognizes volunteers who have gone above and beyond in the fight against childhood cancers with three or more years of service. These are dedicated supporters of every role — shavees, volunteers, barbers, DWYW fundraisers, advocates and more! This honorable group is led by an Honored Kid known as the League Champion, who hopes to inspire members to continue fundraising for childhood cancer research.
September 2020 update: Brody is now fighting medulloblastoma for the 3rd time.
Meet Brody, our 2020 League Champion. In 2014, doctors found a mass in the back of Brody‘s head. He was just 8-years-old at the time, and his mom, Sarah, says it was the beginning of life-changing events.
Every year, St. Baldrick’s selects five children to serve as Ambassadors. They represent the wide diversity of kids who are affected by childhood cancers and their stories underscore the importance of supporting childhood cancer research.
There is one common thread though – each child is more than their cancer diagnosis. They have their own favorite holidays, music, foods and hobbies. And as their families will attest, each child has their own unique personality from spunky and fun loving to compassionate and caring.
While we normally select five children – with one who has passed away from cancer representing the 1-in-5 who don’t survive – this year we have chosen six kids, in order to include twin brothers Seth and Joel, who both died months apart from each other.
“I’m an accidental tourist in the childhood cancer world,” says Patrick Sullivan, who chairs the Patient Advocacy committee for the St. Baldrick’s Foundation — Stand Up 2 Cancer Pediatric Cancer Dream Team. “It’s not a place I’d ever thought I’d be in, until I heard that my son had rhabdomyosarcoma in 2007.”Patrick Sullivan and his son, Finn.
Patrick’s role is more than just tourist, though. When the Pediatric Cancer Dream Team was created, its goal was to push the envelope, to marry the emerging fields of genomics and immunotherapy to create targeted therapies for cancers. It was also important to the Dream Team to involve patient advocates, to inspire and work alongside the researchers, to maximize the Dream Team’s success. Along the way, each researcher was paired with a young investigator on the team, to help the advocates better understand the science and to help the young investigators better communicate their work to families and the lay public.
The Mom of a St. Baldrick’s Ambassador Tells Us Why There’s Need for Research to Help Pediatric Cancer Survivors
Editor’s Note: As we commemorate Childhood Cancer Awareness Month, and launch the #DFYchildhoodCancers campaign, we’d like to introduce you to Katrina Knott, whose daughter, Arianna, is one of the five St. Baldrick’s “Ambassadors” for 2019. As you’ll read in her story, survivorship issues in pediatric cancer need attention – and funding – for those like Arianna, whose challenges are many.Arianna during treatment
Older Posts »