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?
“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.
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.
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.
The St. Baldrick’s Speak Up for Kids’ Cancer advocates played an instrumental role in facilitating monumental legislative achievements for kids with cancer in 2018.
Last year, an estimated 174 million Americans – or more than half the total US population – shopped online or in stores between Thanksgiving and Cyber Monday. In only 5 days, online sales totaled nearly $15 billion. It’s safe to say, then, that many Americans saved money pursuing big bargains that weekend.
If you’re saving money during this year’s Black Friday or Cyber Monday events, consider passing it on this Giving Tuesday, Nov. 27. You can do that right now by visiting our dedicated Giving Tuesday donation page.
I was recently invited to serve as a patient family advocate for the St. Baldrick’s / Stand Up to Cancer Pediatric Cancer Dream Team representing the National Cancer Institute. If you’re not familiar with the Dream Team and what they’re doing, it’s worth taking a few minutes to read up on the project.
In short, it’s a multi-institutional effort to accelerate cures for childhood cancer by sharing the skill, knowledge and unique resources of 8 top-notch research institutions.
Carlos Sandi with his son, Honored Kid and Ambassador Phineas.
Kalea and Noah snuggle in one hospital bed during treatment.
From waking up in the morning to getting tucked in at night, siblings Noah and Kalea were practically inseparable.
They’d eat their breakfast together – whatever 6-year-old Kalea had, 4-year-old Noah wanted too – and brush their teeth together. The two kids would get so immersed in playing together, and so quiet, that their parents, Duncan and Nohea, would get nervous and go check on them. Inevitably, the adults would interrupt some elaborate imaginary adventure and the kids would shoo them away.
We talk a lot about how childhood cancer affects the family. But what about the siblings, specifically? 2016 Ambassador Cheyenne’s mom opens up about how her 5-year-old son, Tristen, copes with his big sister’s childhood cancer journey, and how she and her husband balance their children’s needs.
It’s September. This is a big month for those of us in the childhood cancer community.
If you know anyone impacted by childhood cancer, I am sure your Facebook feed is blowing up with heart wrenching facts about how underfunded the research is and how rare childhood cancer ISN’T.
One thing that tends to be forgotten is how childhood cancer impacts the rest of the family. Most specifically, the siblings.
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