We may be welcoming new Ambassadors soon, but not before we give our 2016 Ambassadors a chance to share some final thoughts about the past year. Read on to find out just how much the St. Baldrick’s community means to these amazing kids and their families.
Ambassador Alyssa celebrates two birthdays every year — one for herself, and one for her leg. Today, the anniversary of Alyssa’s first big surgery for childhood cancer, her mom remembers that day and shares how far Alyssa has come.
A joyful Alyssa is cradled by (left to right) her mom Michella, sister Kalie, dad Harold, and brother Jacob.
Someone recently asked me why December 16 is hugely significant to us as a family.
It’s the day my 11-year-old daughter Alyssa had a major surgery that changed her life forever.
It’s the day my sweet girl got a new leg.
Honored Kid Sophie was just 3 months old when she was diagnosed with acute myeloid leukemia. When Sophie passed away 15 months later, her parents worried that she might be forgotten. They decided to honor Sophie’s memory by starting a memorial fund in her name, forever tying her to a cause they care deeply about: funding childhood cancer research.
“The next place that I go
will be as peaceful and familiar
as a sleepy summer Sunday
and a sweet, untroubled mind.
And yet….it won’t be anything like any place I’ve ever been…
or seen…or dreamed of
in the place I leave behind.”
– “The Next Place” by Warren Hanson
Our first child, Sophie, was born in October 2013, and we were smitten with her the instant that she arrived.
A few months later, we noticed some odd bruise-like spots on Sophie’s torso and back. She had a runny nose for a couple of weeks but we didn’t think much of it, as everyone around us seemed to have a cold. Still, her “spots” concerned us so we brought her to the pediatrician.
The doctor shared our concerns and immediately sent us for blood work.
That night marked the first of many long stays at the hospital. A bone marrow biopsy revealed that our precious 3-month-old had acute myeloid leukemia (AML). Frightened and confused, we immediately began treatment.
Tina and Carlos’ childhood cancer journey didn’t begin with their son Phineas’ diagnosis in 2013. It began seven years earlier with their second child, Althea. On the 10th anniversary of Althea’s death, Tina shares how she continues to honor her daughter’s memory.
Althea and her mom.
December 1. I can feel it in my bones days before it arrives. Late fall, Thanksgiving leftovers gone, dead leaves, frost, Christmas coming, my daughter dying in my arms.
A fact of my life for 10 years now — my daughter Althea died of cancer when she was 2 years old.
Honored Kid Annie is a force to be reckoned with. In fact, when the little girl was first diagnosed with leukemia, she told her mom, “I’m going to kick its butt.” And that’s just what this spirited fighter is doing, with her loving family backing her up. Read on for more about this amazing kid and her fight against cancer.
Annie doesn’t let anything stop her from being a kid — not even cancer.
The firecracker of a 5-year-old loves to dance, especially to the rock band AC/DC. Her signature move is like “the worm” but with less moving and the addition of a foot wiggle.
Over the summer, Abby’s dad shared some news with us: Abby was still cancer free, but her organs were failing. The doctors told her she had 48 hours to live. But Abby disagreed, and four months later, Abby’s mom wants us to know that Abby is still here — and she’s been busy!
Abby and her mom on the beach in the spring. Abby underwent a bone marrow transplant for relapsed Ph+ acute lymphoblastic leukemia in January 2015 and has been battling complications ever since.
It’s been four months since we brought Abby home.
We brought our baby home because the doctors truly believed that Abby was beyond saving and it was time for end-of-life care. All of the signs were there. To all of the health care professionals from many hospitals and specialties, Abby’s body was failing and we were doing more to her than for her.
Nancy knows advocating for childhood cancer research is more than a job. For her, it’s a passion fueled by her son Scott’s leukemia diagnosis and the shocking shortage of kid-specific treatment options available to him — a topic she helped tackle in her recent work on a comprehensive childhood cancer landscape report. Read about Nancy’s journey from childhood cancer mom to advocate, and her take on the report, below.
When my son, Scott, was diagnosed with acute lymphoblastic leukemia at the age of 3, I wavered for a good three months between wanting to know everything about childhood cancer and not wanting read a single thing.
When 2010 Ambassador Sara was diagnosed with Wilms tumor in 2008, it was a birthday surprise her family did not expect. The now healthy 11-year-old and her family are still committed to fundraising for childhood cancer research, and they recently took a trip to Northwestern University to visit the St. Baldrick’s researcher her Hero Fund is helping support. Her mom tells the story below.
Sara, bottom left, and her family at a St. Baldrick’s event in 2013.
I feel sick with guilt looking at this picture of our daughter Sara blowing out her fourth birthday candles.
29 days later, cancer barged into our home and attacked Sara.
Rex was only 18 months old when he was diagnosed with neuroblastoma. He’s now a happy, healthy, rambunctious 4-year-old, thanks to childhood cancer research supported by St. Baldrick’s. (Read his story here.) But as his mom explains, childhood cancer will always be a part of their lives.
Rex munches on breakfast in the hospital during a checkup.
I am a member of a club. It is not one that sends out fancy invitations. It is not one that has a welcome party. It’s not a club I chose.
It is a club that is non-discriminatory. Anyone can become a member. Rich and poor, faithful and faithless, people who have it all figured out and those who just can’t seem to find their paths — all are welcome.
No one wants to join this club, and you don’t get to opt out. And once you join, you’re in it forever. You’ll pay costly dues in money, time, and heartache for the rest of your life.
We talk a lot about how childhood cancer affects the family. But what about the siblings, specifically? 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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