Pass the STAR Act Now, Because My Daughter Deserved Better
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.
Pass the STAR Act, Because Kids With Cancer Don’t Have Time to Wait
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.
St. Baldrick’s Advocate of the Month: Kelly Forebaugh
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.
In 2005, Kelly Forebaugh’s son Jackson was diagnosed with a rare and aggressive childhood cancer in his kidneys, called a rhabdoid tumor of the kidney. He was just 15 months old.
From the Boro to the Hill: St. Baldrick’s Shavees Advocate in D.C.
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.
A Balancing Act: An Update on Kate Foster
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.
A Big STAR Act Update, and a Big Deadline
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!
‘Never Stop Fighting’: Why I Support the STAR Act
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.
Tell Congress ‘Step Up: Support the Childhood Cancer STAR Act’
A coordinated community effort is underway to storm Congress — on foot and online. Childhood cancer organizations throughout the country are joining together to send Congress a message:
The ‘Moonshot’ to Cure Cancer: Keeping Kids in the Race
President Obama recently announced a new national effort to conquer cancer. See how St. Baldrick’s is already at work and how you can help.
We fully support this effort, and together, I believe we have the passion, creativity, and energy to help make it happen.
An Open Letter to My Representatives: Why You Need to Support the Childhood Cancer STAR Act
Two of Carlos Sandi’s three children have been diagnosed with cancer — Althea, who died in 2006, and Phineas, who is now cancer free thanks to childhood cancer research. Carlos takes his family’s story to his representatives in this moving letter.
The Sandi family (left to right): Fiona, Carlos, Phineas and Tina.
Dear Senators:
I am writing today to ask for your support of the childhood cancer STAR Act. This bill reflects the highest-level legislative priorities as defined by rounds of carefully considered conversation among the many groups comprising the Alliance for Childhood Cancer.
I don’t know what the rubric or algorithm is for deciding if you should co-sponsor a bill, but I can tell you from personal experience that without direct federal support for childhood cancer research in the form of the NIH Pediatric Oncology Branch, my son Phineas would not be spending this week attending a Lego robotics camp; he would be every bit as dead as his older sister who we lost to acute myeloid leukemia in 2006.
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