“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.
What jumps out after talking with Shane Callaghan? His positivity. In a recent interview with Shane and his dad, Casey, Shane took center stage with his upbeat, can-do attitude – in spite of a lifetime worth of medical setbacks for a kid who is only 14. Shane has faced multiple treatments for osteosarcoma, which was first diagnosed in October 2015.
The following July, Shane was declared cancer-free. But the cancer in his left leg returned in March 2018. Following his relapse, chemotherapy led to an infection that severely damaged his kidneys. While his kidneys are better, they only function at 50% and are unable to handle heavy doses of chemo. On April 1, 2019, Shane’s left leg was amputated to remove the cancer and ultimately save his life.
Editor’s Note: Today on the St. Baldrick’s blog, we’ve decided to hand the microphone over to Dan Butler, whose son, Sullivan, was diagnosed with cancer in 2016, at the age of 10. June is Cancer Survivors Month at St. Baldrick’s, and the first Father’s Day after Sullivan’s diagnosis and treatment was especially meaningful for Dan.
Editor’s Note: Throughout the month of June, Cancer Survivors Month, we are hearing from and about those who have been diagnosed with pediatric cancers, and learning about the long-term impact and late effects of cancer treatments. The month of June also marks four years since the focus of this blog post, Brooke, was first diagnosed.
When you’re a kid with cancer, you’re not thinking about long-term impacts of treatment: you just want to get better. Parents, too, are rightly focused on a desire to put cancer behind the family and get on with life.
While some childhood cancers still have no cure, overall survival rates have climbed into a figure that’s around 80%, so more attention is being paid to those long-term impacts. What if the treatment you get today can lead to all sorts of unwanted side effects later? And, if you survive as a child, as you move into adolescence and then adulthood, what can be done to ensure you have the best possible quality of life?
Dr. John Gates, a survivor now in his 40s, has worked tirelessly to help treat kids with cancer, and to ensure that those who do survive know how to face future challenges head on.
Ellie is just like every other Mom in that she juggles all sorts of things, from kids’ schedules to work/life balance. Except she does it all while caring for a child with cancer. On her own blog, she tells stories of her family’s day-to-day with style, grace, and compassion.
Today, as we celebrate Mother’s Day, and especially the Moms who have the added complexity of pediatric cancer, we’ve decided to let her tell a Mother’s Day story on the St. Baldrick’s blog.
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