Jack Callahan has been through a ton in just four years on Earth. Six rounds of chemotherapy, then a major surgery, plus three rounds of chemo with three stem cell transplants. Radiation – he’s only part of the way through 33 treatments of that –and hearing loss and hair loss; he spent a total of 117 nights in the hospital in 2019.
For parents Emily and Michael, though, you’d think Valentine’s Day isn’t top of mind today – you may be right, but that doesn’t mean that the young couple isn’t staying connected through this new reality. Both working parents had to scale back their hours, and the family must shuttle back and forth between home in Charlottesville, Virginia and treatments at Children’s Hospital of Philadelphia.
Yet, on this Valentine’s Day, we thought we’d share Emily’s perspective: how do they all manage to juggle the stresses and emotional strain of a kid with 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 All
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.
My name is Erica, and I never imagined that I would have a childhood cancer story to tell.
I’ll never forget the moment I heard the words “your son has cancer”—it hit our family like a ton of bricks. Now I’m sharing my son Aiden’s story because I believe in the critical need to support childhood cancer research with the St. Baldrick’s Foundation. And this holiday season, you can join me in giving hope to the next child faced with a cancer diagnosis.
First, cancer took away my little boy’s smile. Then, it took his life.
“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’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.
Editor’s Note: We’ve let Jake, the founder of Resilience Gives, tell us his experience of dealing with uncertainty during treatment.
After a few hours of watching carboplatin steadily drip into my bloodstream, I was relieved when my friend Alex poked her head around the corner of the oversized hospital room door. It was day three of my first inpatient stay since beginning my medical leave of absence, and Alex was the first non-family visitor. When she placed her hand beneath the Purell dispenser, I could see a game tucked underneath her arm.
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.
Sunday, June 2 is National Cancer Survivors Day, and we at St. Baldrick’s have dubbed the entire month of June “Cancer Survivors Month.” Our focus for the month ahead will be to bring awareness to the fact that surviving childhood cancers is just the first step in a lifelong journey for many survivors.
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