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.
Childhood Cancer Survivor Fights Back by Going Bald
When it comes to fighting childhood cancer, Honored Kid Tyler is a triple threat – he’s a survivor of kids’ cancer, a shavee and a nursing student! Why is he passionate about conquering childhood cancers? Because this three-time cancer fighter doesn’t want more kids to go through what he did.
Tyler smiles after his shave with 9-year-old Honored Kid Ally.
While Tyler was in the hospital, he became very good at pretending that he was asleep. He overheard all sorts of things – things that doctors liked to sugarcoat when he was awake. Like the fact that they thought he was going to die.
Looking for a Cure Far From Home: Shauntelle’s Story
Childhood cancer knows no borders – but neither does research. In fact, funding kids’ cancer research saves the lives of kids across the globe. This International Childhood Cancer Day, meet Honored Kid Shauntelle, a 19-year-old from Ireland who left everything familiar behind so she could have her best chance at life.
Thanks to a successful fundraising campaign, Shauntelle and her family were able to move from their home in Ireland to Houston, Texas for cancer treatment.
Honored Kid Shauntelle lives about an hour south of the city of Dublin in Ireland. Four years ago, when she was 15 years old, she noticed rashes popping up on her body. She thought she was scrubbing too hard in the shower or was allergic to her body wash.
“For a while, I just didn’t think to speak up. It was a big pain and a big part of my life, but it was a bit embarrassing,” Shauntelle said. “I wasn’t sure if I was doing something wrong.”
‘The Miracle Kid’: The Story of Brittany Ross
A childhood cancer survivor, Brittany Ross smiles during her long-awaited wedding day to her fiance, Patrick.
When Honored Kid Brittany Ross was told that she’d be lucky to live another three weeks, she didn’t react with sadness. She didn’t bury her head under her hospital bed blankets and cry or ask, ‘Why me?’
She was mad. She was fired up. She was determined to beat childhood cancer.
“They made it seem like I had no chance,” Brittany said of her diagnosis in December 2000. “At this time, I was like, ‘Look, I’m 15 years old. I haven’t really started living my life yet.’”
And she had a come-back that any teenager would be proud of.
When Life Got Tough for Alyssa, She Dreamed Big — And Gave Back
Alyssa takes a selfie before shaving her head for childhood cancer research.
When Honored Kid Alyssa Greenwell says she’s a medical mystery, she’s not kidding.
“I really am a medical mystery,” she said. “My legs are in a medical journal.”
Good News and a Special Visit: An Update on Honored Kid Zach
There’s nothing sweeter than a reunion with someone you love. Nancy Swart knows that better than anyone. Earlier this month, she had the happiest of reunions with her son Zach, who has been away from home to get treatment for leukemia. Read on for more from Nancy about the time they spent together, how Zach is doing since his bone marrow transplant and the news that made him smile.
Nancy and Zach have a special moment together.
Zach’s dad, Tom, has been living with Zach in an apartment we have been renting in New York City, so that we can be close to the hospital for follow-up visits. It has been great for Tom to be able to spend time with Zach and I know Zach has needed some quality time with dad, so it has been a nice change to get some male bonding time.
St. Baldrick’s Advocate of the Month: Diana Toohey
This July, St. Baldrick’s Advocate of the Month is Diana Toohey, the mom of Honored Kid Ethan. From his mom’s advocacy on Capitol Hill to the $325,000 raised in Ethan’s honor by his local St. Baldrick’s events, his story has made a big impact. Read on to learn why Ethan is such a huge inspiration to so many people, including his mom, and why she speaks up for kids’ cancer research in his honor.
Ethan smiles while wearing his favorite green shirt, which was emblazoned with the words, “Team 2E” in honor of Ethan and his family. Kids at his high school wore the shirts at a fundraiser in Ethan’s honor on the day he died.
Diana Toohey travels to Washington, D.C., for Childhood Cancer Action Days, she calls and emails her legislators, and speaks up for kids’ cancer research whenever she can. She does all of this so kids with cancer get the treatments and cures they need to survive.
But there’s another reason she makes those phone calls and knocks on those doors.
She loves saying her son’s name — Ethan.
Teaching Good Cells to ‘See’ Cancer: Researcher Uses CAR T Cells to Help Kids Like Zach [VIDEO]
From CAR T cell therapy in May to a bone marrow transplant in June, over the past few weeks we’ve been following the tremendous journey of Honored Kid Zach Swart. Now we bring you another angle — a closer look at the St. Baldrick’s-funded research that has changed Zach’s life.
St. Baldrick’s researcher Dr. Kevin Curran meets with a patient at Memorial Sloan Kettering Cancer Center.
A couple months ago, Zach Swart went through yet another medical procedure; one more to add to an already substantial history of biopsies and blood draws.
But this procedure was different than a typical needle poke.
A Life Saved in Six Minutes: An Update on Zach [VIDEO]
Last week, we shared Honored Kid Zach’s amazing story and the news that the three-time cancer fighter was going to get a bone marrow transplant — a procedure that could put the 15-year-old into remission for good. Today, about a week after the transplant, Zach’s mom has an update.
The family gathers before Zach’s bone marrow transplant. From left to right: Nancy, Ben, Tom and Zach, with Gabe on Facetime.
My son, Zach, is fighting cancer for the third time, which means this is the third time going through tests, treatments and all the uncertainties that follow. Zach had three months of intense chemo therapy to try to get him into remission before his bone marrow transplant or BMT. At the end of his treatments, through numerous hospitalizations, we learned that Zach was not in remission.
A Tale of Two Worlds: Emily’s Story of Survival
Today is National Cancer Survivors Day and in celebration, we are bringing you the survivorship story of 2013 Ambassador Emily, who was diagnosed with osteosarcoma as a 16-year-old. Now nearing five years cancer free, she’s a huge advocate for kids’ cancer research. She wants to see all kids with cancer leave the childhood cancer world behind — for good. Read on for more about Emily, her treatment and its effects, and what it’s like to be a survivor.
Emily in 2013, during her treatment for cancer (left) and Emily last month (right) in New York City, which she’s made her home after graduating from New York University.
Emily lives in two worlds.
In one, she just graduated from New York University, is cruising the Adriatic Sea over the summer, and snagged her dream job in television production.
The other world is different.
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