Families

Monica’s daughter, Vera, passing time in the emergency department

My daughter Vera has been fighting acute lymphoblastic leukemia for almost 2 years, and we recently visited the emergency department (ED) after managing to avoid it for 6 months. Going into this last visit, I remembered all the tips an oncology family should know before heading to the ED. I want to call out that most of these tips were learned by experience and/or told to me by a fellow oncology mom. These are things I wish I had known since diagnosis day.

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Each survivor’s risk of late effects of cancer treatment depends on their tumor, specific treatments, age, genetic makeup and other factors. Surgeries, chemotherapies, radiation, stem cell transplants and other treatments take a toll on the body – and sometimes the mind – in many ways. Some late effects make life more difficult; others are life-threatening.

Heart and lung problems are common, as are secondary cancers.

Other late effects can include hearing problems, hormonal imbalances, difficulty growing, mental health needs or cognitive deficiencies, bone density issues and easy bone fractures, fertility and reproductive problems, and more.

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This was written by Hudson’s mom, Jessica McKearney.

I work as a Nurse Practitioner and Kyle works as a Project Manager. We live in a small town in Northeast Iowa. Before March 2019, Hudson was an energetic, Mickey Mouse and car loving toddler. He was spirited, happy, loved to dance and kept us on our toes. In November 2018, Hudson became a big brother to his sister Violet. Two under two was exciting and exhausting. Hudson was caring, empathetic, and always wanted to be with Violet. They had an incredible bond, and we were grateful to have two happy and healthy toddlers.

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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.

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Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).

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.

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For a parent, losing a child shatters your core beliefs, assumptions about the world, and your expectations of how life should unfold. Losing two children only 18 months apart… truly devastating.

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April 10^th is National Siblings Day. You know, your parents’ other children who push your buttons just right, make you laugh when you least expect it, or get you in trouble with mom and dad? Yeah, those people – your brother or sister, older or younger, today’s the day to show them that they are an important person in your life!

For National Siblings Day, we checked in with the brothers and sister of some of the 2020 St. Baldrick’s Ambassadors! Childhood cancer impacts the entire family, and we want to share what it feels like to be a sibling of a kid with cancer. Meet some remarkable kids who opened up to us about their experience!

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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?

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Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood 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.

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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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