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.
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
Editor’s Note: Brooke is an Ambassador and Honored Kid who just graduated from Stanford University. As Cancer Survivors Month continues on the St. Baldrick’s Blog, we’re letting her tell the story of how she got to this day in her own words.
On Thursday, September 24, 2015, my friends were finishing up their first week of junior year at Stanford. I was lying in a hospital bed, watching as my brother’s stem cells were infused into my body, replacing the bone marrow that had turned against me.
On Friday, September 25, my friends celebrated their first weekend back together at school. I had a grand mal seizure.
When I was diagnosed with acute myeloid leukemia at the end of my sophomore year of college, I knew that I was going to have a very different college experience from my peers. I had no idea how different it would be.
I had the impression that I would either die or I would live and return to my previous life. I had a high-risk form of leukemia that did not respond to my first round of chemotherapy, and at first it seemed that the death option was more likely.
But when I got into remission on a salvage round of chemotherapy and proceeded to my bone marrow transplant, I was hopeful that a return to “normal life” was possible.
The League of Legendary Heroes is an order of dedicated volunteers who’ve participated in St. Baldrick’s Foundation events for three or more years. Each year, St. Baldrick’s names a League Champion to lead and inspire this group to raise money for lifesaving childhood cancer research.
Georgia Moore, our newest League Champion of the League of Legendary Heroes, just celebrated her 19th birthday on Dec. 30. The following day, New Year’s Eve, marked nine years since Georgia was diagnosed with acute lymphoblastic leukemia (ALL).
Our 2019 League Champion, Georgia Moore (third from left), appears with her family at Tufts University.
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