The Alliance for Childhood Cancer Action Days in Washington, D.C., is an opportunity for members of the childhood cancer community – from kids and their families to health care professionals and volunteers – to advocate for childhood cancer issues before Congress.
St. Baldrick’s Honored Kid, Scott, a 10-year-old whose cancer is in remission, attended Action Days with his mom Nancy and has provided us with the following report on his experiences in Washington.
After years of advocating on Capitol Hill, the Childhood Cancer STAR Act passed and was signed into law! See how the STAR Act will help kids with cancer and childhood cancer survivors live long, healthy lives.
What is the childhood cancer STAR Act?
The STAR Act stands for the Survivorship, Treatment, Access and Research (STAR) Act. It is the most comprehensive childhood cancer legislation ever taken up by Congress.
The STAR Act — the most comprehensive childhood cancer bill ever introduced on Capitol Hill — was just passed by the Senate and now heads to the House, backed by the support of Members of Congress, families, survivors and advocates like YOU. Why is this bill so important? Rachael Kittleson, the mom to a teen who had a pediatric brain tumor, will tell you …
Rachael (middle) smiles with Kelsey (right) and her little sister, Avery.
There is nothing in life that prepares you for the words, “Your daughter has a large tumor on the left side of her brain.” There is nothing in life that prepares you for telling your husband devastating news about his girl. And there is certainly nothing in life that prepares you for how to keep your teenage daughter calm as you say, “You have to go to the hospital, but you are going to be fine.”
I think back on watching my daughter Kelsey perform on stage or playing on the soccer and lacrosse fields. I think of the cancer breaking into her brain silently and lying in wait, like a burglar.
Kelsey was an energetic teenager and an accomplished athlete, playing both soccer and lacrosse.
For me, three years ago was such a time of pride and excitement as I watched our oldest daughter start to come into her own. She was an honors student, athlete, lead in the school musical, tutor and musician. While she was a normal teenage girl excited about things like her dress and date for her 8th grade dance, there was something else going on with Kelsey. The cancer was barely perceptible and easily dismissed, but it would eventually, most cruelly, take everything from her a piece at a time.
As Kelsey’s spring schedule was in full swing, the tumor started to make itself known in innocuous ways – ways I easily brushed aside as a mother. I had no idea this was the beginning and the beast would be in full control in just a couple of months. As Kelsey’s symptoms progressed, an MRI was ordered for August 27, 2015. That day would change our lives forever.
My kids are alive. My husband is alive. We are here and we are together. That is what I tell myself when the anger and bitterness take hold. My husband served the United States Army for over 22 years. During that time, two of our children, Collin and Patrick, were diagnosed with cancer.
Patrick and Collin are brothers and were both diagnosed with childhood cancer. Patrick, now 13 years old, was diagnosed with stage II intermediate risk hepatoblastoma, a rare cancer of the liver, in 2010. Collin, now 11 years old, was diagnosed with acute lymphoblastic leukemia (ALL) when he was 2 years old.
While my husband fought on foreign soil, I served our nation as a military spouse and tackled childhood cancer with our kids in North Carolina. As a family, we sacrificed so much for this nation and yet we ask so little in return – just a chance for a brighter future. The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act can get us there.
The Mommas Means Business – And Ten Years Later, They’re Still Raising Money for Pediatric Cancer Research
Editor’s Note: We’re delighted to give the floor to Rebekah, who is our guest blogger and part of the 46 Mommas. In this blog post, she shares what she has learned about helping kids with cancer, and keeping her own sisterhood strong.
The March Advocate of the month is Kelly Forebaugh, a hero for kids with cancer who wears many hats — she’s the Director of Hero Funds and Memorials at St. Baldrick’s, mom to a cancer survivor, a staunch advocate for children’s cancer research, a shavee and a regular at Childhood Cancer Action Days on Capitol Hill. What inspires her to do all this? Read on to find out.
Kelly gets her head shaved by her son, Jackson, during their family’s 2016 St. Baldrick’s head-shaving event.
Six St. Baldrick’s shavees from Tennessee have been volunteering for years to raise money for childhood cancer research — but their dedication to the cause doesn’t end there. Read on to learn about each of these incredible individuals and how they went from head-shaving in Murfreesboro to advocating on Capitol Hill.
The ‘Bald in the Boro’ group (from left to right): Marshall Campbell, Isaac Harrison, Jeremy Harrison, Logan Simmons, Chris Simmons, and Joyce Tibbs.
Two years ago we brought you the incredible story of Kate Foster, who was just getting back to the gym after surviving childhood cancer. Now she’s 17 and still competing in gymnastics — all while keeping up top grades, applying to colleges, and advocating for kids with cancer. Read Kate’s story in her own words below.
When I was 8 years old I started competitive gymnastics and it quickly became my life.
Thanks to your advocacy efforts, the most comprehensive childhood cancer bill ever is making its way through the Congress. But the window of opportunity is closing and we need your help now more than ever. Read on to see how you can help us make history in Washington for kids with cancer.
This week, we hit a massive target in our push to pass the Childhood Cancer STAR Act. In the House, the 250th member of Congress just signed on to the bill!
Thirteen-year-old Sydney spent much of her early childhood battling a brain tumor. This year, the nine-year childhood cancer survivor took a special trip with her dad, Pete, to Washington, D.C. “This experience taught us how important it is to never stop fighting for something you believe in,” Pete writes. He tells Sydney’s story and shares why the trip was so meaningful to them.
Pete and Sydney outside of Senator Marco Rubio’s office during this year’s Childhood Cancer Action Days in Washington, D.C.
Whiplash. Pulled muscle. Bronchitis. Flu. Virus. Stomach bug. For months, it was a different diagnosis at every doctor’s visit.
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